It feels like I haven't sat down to the computer here forever! This has been a painful weekend. We had the weirdest weather- we went from nice warmish spring weather to SNOW! Then in the same day it warmed back up, melted the snow and last night we actually had to open the windows to cool off the house.
I hate that the weather seems to control a great deal of my pain level. I swell, I hurt, I get a fever- it's miserable. This weekend was over the top, I was in bed for a great part of it. On top of that since I'm not the only afflicted person here, I had little people that were in pain and meaner than snakes, and one that was so overwhelmed by pain he started puking all over the floor. UGH.
So, that is my memories of the weekend, pain and torment. I did work a little bit on Giovanna's Easter dress, which I must say is now my most favorite project ever. I'm so thrilled with it and it's been fun the whole way through. It's really coming along. So far I have the bodice done (still have to do the lining), the main skirt which has both taffeta and net ruffles, and the slip with net ruffles. I still have to do the all the overskirt, peplum, bows, etc. But the main parts are finished! I'm so excited! I would definitely do this dress again.
Yesterday was our appointment with the new primary care doctor for Aaron and I. I was so nervous. I have the WORST luck finding a good doctor. Our last doctor was the absolute worst doctor ever.
I have to say though that I LOVE LOVE LOVE this guy! I found a good one! He was nice, had a sense of humor, and we both loved him! The office was so much nicer, it was amazing. Finally!
Hunter went back to school yesterday and did okay- not great, but he made it through the day. He's headed back today- yay!
I've got the day off so I'm hoping to get some more done on the dress. I have to do some cleaning, but I'm hoping for a quiet (recovery) day.
Tuesday, March 31, 2009
Friday, March 27, 2009
Long time no blog.
Well this week has gone by with a bang! I can't believe it's Friday already, and I haven't been here once. Lets see... what has happened this week...
Monday I spent the day catching up here at home and sewing. Giovanna's Easter dress is coming right along and for once I'm actually really enjoying the process! Hunter went to school since he had been doing so well over the weekend, and that went really well.
Tuesday I had to keep him home because we had to rush to get everyone out the door including us on the way to Springfield to see a new rheumatologist. I had wanted Hunter to be evaluated for Ehlers Danlos Syndrome but the doctor that diagnosed myself, Dakota and Tristan wasn't seeing new patients. This guy was a total waste of time. He had no clue what he was talking about, didn't know how to do the proper evaluation exam for EDS, and had a horrible condescending assholish attitude. It was a nightmare. What's worse, Hunter couldn't stay awake all day, not even alert for the exam, and slept the rest of the day. I was going to take him back to school after the doctors appointment, but that didn't happen. He slept for the rest of the day.
So then Wednesday I tried to get him up for school, but he wouldn't move. He was moving very, very slowly so I kept him home. At this point I called the school and they talked about just having him take the rest of the week off. :( I did get more sewing done though!
Yesterday was a ridiculously busy day- I got up and took the boys to Springfield for their blood testing. Now, normally we go in there to use the lab and are out in about 15 minutes. But, not today! We sat there for 45 minutes before we even were registered. And we were only registered then because I got up and complained (which isn't like me, but Giovanna was driving me past insane, and these were timed tests, we had to have them done by 11:00. Finally they brought us back and got the tests. The lady that took Dakota's blood asked me if I was Hispanic. LOL She said you have the most gorgeous skin and your children's skin color is just beautiful! Your daughter looks like a little baby model! LOL!! Needless to say she made my day! ;) I told her no, we were not Hispanic. I didn't go further into it because quite frankly I'm tired of doing so after all these years. I figure at this point single racial/ethnic/national backgrounds are the minority. I'm not going to go through the list for anyone anymore, mostly because I'm lazy.
We left there and came home, I was so tired I was falling asleep at the wheel so Giovanna and I laid down for a nap. The boys played games and helped clean up the main areas. Then we left, picked up Tristan and took Hunter to see the dermatologist. What a zoo that was! I really dread going there, it's small, quiet and not the place for children. The exam rooms are so small. Yet, we all packed in there. He looked at Hunter's skin and scalp and reaffirmed that he had numular eczema, and diagnosed his scalp issue as non related to the skin, but instead seborrheic dermatitis. So, $72.00 later (OUCH!) I still haven't gotten the perscription meds just the stuff to mix them in and maintenance stuff. UGH. I didn't need that expense! This stuff BETTER work. Again I say, OUCH.
We ran out of there just in time to get to speech therapy. Pulled up and parked and as we were parking there were three women louding fighting, then a car rode up and HIT one of them! They jumped on the car and started beating on it with their purses and trying to kick out the windows, and it drove off. They were carrying on VERY loudly. I told my guys not to look over, as these women were carrying on, cursing and yelling at everything that moved. Dakota of course didn't listen so they yelled at him. I was scared and so were the kids. No one did anything, it was amazing. They were yelling and hollering spinning every curse word that they could all the way into the hospital and up into the lobby. What a nightmare- it's a children's hospital! The kids were freaked out. I complained about security to our therapist, she was going to make a report. UGH.
We did some fast shopping while Tristan was in speech. Giovanna is the bane of my existance now for trying to take anywhere in the car. She will not stay in any carseat and I have tried everything. It's just not happening. Yesterday was the worst though and I was ready to die. We stopped and got pizza and headed to get a few groceries and then went home. What a LONG day.
As all days though, there are funny little things that tickle me. I was telling Aaron my favorite top three from this week in bed last night.
#3. Giovanna and Tristan in the kitchen. I'm trying to make tea, and they both want to stir in the sweetener. Giovanna won't let Tristan and they are arguing who should do it. Giovanna looks at Tristan and says, "I am a GUUURL. You are a BOY. This is a GGGGIRL job. Not a BOOOOY job. See- My name is Gia, I'm a girl. You are Bub, you are a boy. Your name is NOT Gia. GO AWAY. (This is funny because we have NEVER applied gender roles to anything here, especially kitchen duties! She came up with that all on her own!)
#2. Giovanna and Tristan in the van. They are eating icecream cones. Tristan finished his, and Giovanna bit the end of of her cone, but is eating slowly. It of course started dripping, and she didn't want to get wet. So she is debating on whether to give up on finishing it off. Tristan wants it, so he keeps asking if he can have it. She keeps telling him no, but he persists. Finally she says- "Fine! Have it!" (serious daunting look) "But you don't know where it's been!"
*drumroll*
#1. Giovanna to me- "My peepee is a private. What is your peepee's name?"
And on that note- I will blog more tomorrow. ;)
Monday I spent the day catching up here at home and sewing. Giovanna's Easter dress is coming right along and for once I'm actually really enjoying the process! Hunter went to school since he had been doing so well over the weekend, and that went really well.
Tuesday I had to keep him home because we had to rush to get everyone out the door including us on the way to Springfield to see a new rheumatologist. I had wanted Hunter to be evaluated for Ehlers Danlos Syndrome but the doctor that diagnosed myself, Dakota and Tristan wasn't seeing new patients. This guy was a total waste of time. He had no clue what he was talking about, didn't know how to do the proper evaluation exam for EDS, and had a horrible condescending assholish attitude. It was a nightmare. What's worse, Hunter couldn't stay awake all day, not even alert for the exam, and slept the rest of the day. I was going to take him back to school after the doctors appointment, but that didn't happen. He slept for the rest of the day.
So then Wednesday I tried to get him up for school, but he wouldn't move. He was moving very, very slowly so I kept him home. At this point I called the school and they talked about just having him take the rest of the week off. :( I did get more sewing done though!
Yesterday was a ridiculously busy day- I got up and took the boys to Springfield for their blood testing. Now, normally we go in there to use the lab and are out in about 15 minutes. But, not today! We sat there for 45 minutes before we even were registered. And we were only registered then because I got up and complained (which isn't like me, but Giovanna was driving me past insane, and these were timed tests, we had to have them done by 11:00. Finally they brought us back and got the tests. The lady that took Dakota's blood asked me if I was Hispanic. LOL She said you have the most gorgeous skin and your children's skin color is just beautiful! Your daughter looks like a little baby model! LOL!! Needless to say she made my day! ;) I told her no, we were not Hispanic. I didn't go further into it because quite frankly I'm tired of doing so after all these years. I figure at this point single racial/ethnic/national backgrounds are the minority. I'm not going to go through the list for anyone anymore, mostly because I'm lazy.
We left there and came home, I was so tired I was falling asleep at the wheel so Giovanna and I laid down for a nap. The boys played games and helped clean up the main areas. Then we left, picked up Tristan and took Hunter to see the dermatologist. What a zoo that was! I really dread going there, it's small, quiet and not the place for children. The exam rooms are so small. Yet, we all packed in there. He looked at Hunter's skin and scalp and reaffirmed that he had numular eczema, and diagnosed his scalp issue as non related to the skin, but instead seborrheic dermatitis. So, $72.00 later (OUCH!) I still haven't gotten the perscription meds just the stuff to mix them in and maintenance stuff. UGH. I didn't need that expense! This stuff BETTER work. Again I say, OUCH.
We ran out of there just in time to get to speech therapy. Pulled up and parked and as we were parking there were three women louding fighting, then a car rode up and HIT one of them! They jumped on the car and started beating on it with their purses and trying to kick out the windows, and it drove off. They were carrying on VERY loudly. I told my guys not to look over, as these women were carrying on, cursing and yelling at everything that moved. Dakota of course didn't listen so they yelled at him. I was scared and so were the kids. No one did anything, it was amazing. They were yelling and hollering spinning every curse word that they could all the way into the hospital and up into the lobby. What a nightmare- it's a children's hospital! The kids were freaked out. I complained about security to our therapist, she was going to make a report. UGH.
We did some fast shopping while Tristan was in speech. Giovanna is the bane of my existance now for trying to take anywhere in the car. She will not stay in any carseat and I have tried everything. It's just not happening. Yesterday was the worst though and I was ready to die. We stopped and got pizza and headed to get a few groceries and then went home. What a LONG day.
As all days though, there are funny little things that tickle me. I was telling Aaron my favorite top three from this week in bed last night.
#3. Giovanna and Tristan in the kitchen. I'm trying to make tea, and they both want to stir in the sweetener. Giovanna won't let Tristan and they are arguing who should do it. Giovanna looks at Tristan and says, "I am a GUUURL. You are a BOY. This is a GGGGIRL job. Not a BOOOOY job. See- My name is Gia, I'm a girl. You are Bub, you are a boy. Your name is NOT Gia. GO AWAY. (This is funny because we have NEVER applied gender roles to anything here, especially kitchen duties! She came up with that all on her own!)
#2. Giovanna and Tristan in the van. They are eating icecream cones. Tristan finished his, and Giovanna bit the end of of her cone, but is eating slowly. It of course started dripping, and she didn't want to get wet. So she is debating on whether to give up on finishing it off. Tristan wants it, so he keeps asking if he can have it. She keeps telling him no, but he persists. Finally she says- "Fine! Have it!" (serious daunting look) "But you don't know where it's been!"
*drumroll*
#1. Giovanna to me- "My peepee is a private. What is your peepee's name?"
And on that note- I will blog more tomorrow. ;)
Sunday, March 22, 2009
Weekend check in.
I usually don't post on the weekends, but since last week was so sporadic, I figured I would this morning. :)
Aaron's visit with the retinal specialist on Friday didn't go quite as we had hoped. They cannot do surgery, or transplant. The good news is that there is a lot in the works, and he did say that it will be a possibility in the future. The technology just hasn't come far enough. And although he could do the shift, the histoplasmosis spots (there are two) are still technically active. The surgery would likely re-activate them and then we would be in a situation. There has been advancement in that area though, which is good to know. They used to do laser or open eye surgery to stop the growth, and now they are using injections. The former two options had the side effect of scarring, whereas the injections do not. What Aaron is having trouble with now with the blind areas is due to the scarring. However, they checked his glasses and the surgeon told him he was quite lucky to have regained his depth perception (or 3-D vision) with his glasses, because most patients aren't that lucky. He has really be like a kid in a candy store with those glasses. He is constantly amazed at all he has been missing.
We also took Giovanna to Head Start registration on Friday and that went well. This is something that she will start next school year along with preschool through the school district. They work together. It looks like it's going to be a lot of fun. I'm not sure what her schedule with pre-school is going to look like with the school system but Head Start sends someone out here to the house, then has weekly?/biweekly? meetings where all the parents and kids get together either for a group field trip or alternately for a class. They have a really nice classroom and the kids all do a full day of class, while the adults go for a full day of class on various topics somewhere else. (The parents were off taking a CPR class when we were there).
The best news of all is that Hunter is doing GREAT on Depakote. He has had NO- repeat NO! seizures since starting the medication! He is catching up on schoolwork this weekend and we are hoping to send him back to school tomorrow! He is so alert and happy and bright and balanced! Thank God! (And everyone that prayed for him).
The weekend hasn't been too bad. I spent Friday afternoon catching up all the housework and straightening up the kids rooms upstairs (nightmare!). The weather has been beautiful. Last night I finally almost finished the &$#*&$ teaset from hell. Almost because I need a .50 piece of leopard felt to finish the very last platter. Ugh. However, everything else is done! Once I have the felt I can finish that last piece in minutes. So, it's pretty much done. So today I'm starting on the Easter dress!!!
I did a little mommy maintenance time yesterday (actually quite a bit!) I gave myself a manicure first. I found this amazing product that I won't be able to live without! It's called Bubble White, and it's truly amazing. It's a nail soak, takes 5 minutes exactly, and has unbelievable results. It made my nails look amazing, removed all the dead cuticle, whitened my nails to an amazing shade and moisturized everything. My cuticles and nails have literally never looked better. Even (especially!) if you don't wear polish you should try this. I did a full manicure and used OPI's Peruruby which is a bright beautiful springy color.
Little Miss Giovanna of course can't be left out of nails- she has been sporting beautiful blue toes all week (China Glaze's For Audrey shade, it's the exact color of Tiffany's diamond jewelry boxes), I wore it last week with stone nail art on my nails- I should have taken pics, it was really pretty! Anyway, Tristan didn't want to be left out either- and said HE was going to do her nails! It was too cute to not get pictures!
Later, I did a full pedicure (it's been forever since I've done that!) and my feet feel so good! I really needed that.
Today I'm determined to work on that Easter dress. I should have plenty of time to get it done if I can work on it everyday a little bit. I'm hoping to get a good start today. I remeasured everything last night (this was actually last year's dress that I didn't get done, I only got it cut out) and although she has grown, I *think* it should still fit. I believe there is enough fitting room that it should be okay. I should know for sure once I get the bodice done (which I should get done today).
Life is starting to get back to normal. Please, let it continue!
Aaron's visit with the retinal specialist on Friday didn't go quite as we had hoped. They cannot do surgery, or transplant. The good news is that there is a lot in the works, and he did say that it will be a possibility in the future. The technology just hasn't come far enough. And although he could do the shift, the histoplasmosis spots (there are two) are still technically active. The surgery would likely re-activate them and then we would be in a situation. There has been advancement in that area though, which is good to know. They used to do laser or open eye surgery to stop the growth, and now they are using injections. The former two options had the side effect of scarring, whereas the injections do not. What Aaron is having trouble with now with the blind areas is due to the scarring. However, they checked his glasses and the surgeon told him he was quite lucky to have regained his depth perception (or 3-D vision) with his glasses, because most patients aren't that lucky. He has really be like a kid in a candy store with those glasses. He is constantly amazed at all he has been missing.
We also took Giovanna to Head Start registration on Friday and that went well. This is something that she will start next school year along with preschool through the school district. They work together. It looks like it's going to be a lot of fun. I'm not sure what her schedule with pre-school is going to look like with the school system but Head Start sends someone out here to the house, then has weekly?/biweekly? meetings where all the parents and kids get together either for a group field trip or alternately for a class. They have a really nice classroom and the kids all do a full day of class, while the adults go for a full day of class on various topics somewhere else. (The parents were off taking a CPR class when we were there).
The best news of all is that Hunter is doing GREAT on Depakote. He has had NO- repeat NO! seizures since starting the medication! He is catching up on schoolwork this weekend and we are hoping to send him back to school tomorrow! He is so alert and happy and bright and balanced! Thank God! (And everyone that prayed for him).
The weekend hasn't been too bad. I spent Friday afternoon catching up all the housework and straightening up the kids rooms upstairs (nightmare!). The weather has been beautiful. Last night I finally almost finished the &$#*&$ teaset from hell. Almost because I need a .50 piece of leopard felt to finish the very last platter. Ugh. However, everything else is done! Once I have the felt I can finish that last piece in minutes. So, it's pretty much done. So today I'm starting on the Easter dress!!!
I did a little mommy maintenance time yesterday (actually quite a bit!) I gave myself a manicure first. I found this amazing product that I won't be able to live without! It's called Bubble White, and it's truly amazing. It's a nail soak, takes 5 minutes exactly, and has unbelievable results. It made my nails look amazing, removed all the dead cuticle, whitened my nails to an amazing shade and moisturized everything. My cuticles and nails have literally never looked better. Even (especially!) if you don't wear polish you should try this. I did a full manicure and used OPI's Peruruby which is a bright beautiful springy color.
Little Miss Giovanna of course can't be left out of nails- she has been sporting beautiful blue toes all week (China Glaze's For Audrey shade, it's the exact color of Tiffany's diamond jewelry boxes), I wore it last week with stone nail art on my nails- I should have taken pics, it was really pretty! Anyway, Tristan didn't want to be left out either- and said HE was going to do her nails! It was too cute to not get pictures!
Later, I did a full pedicure (it's been forever since I've done that!) and my feet feel so good! I really needed that.
Today I'm determined to work on that Easter dress. I should have plenty of time to get it done if I can work on it everyday a little bit. I'm hoping to get a good start today. I remeasured everything last night (this was actually last year's dress that I didn't get done, I only got it cut out) and although she has grown, I *think* it should still fit. I believe there is enough fitting room that it should be okay. I should know for sure once I get the bodice done (which I should get done today).
Life is starting to get back to normal. Please, let it continue!
Friday, March 20, 2009
Looking up. Hopefully.
So, Wednesday I took Hunter in to see the psychiatrist filling in for his doctor (while she's on leave). He was very satisfied with the neurologist that our pediatrician had referred us to (we have an appointment April 8th.) We decided to pull him off all of the lithium in one fell swoop, and start him on depakote. I was a bit nervous about the quick transition, but hopeful that since depakote is also an anti-seizure medication that it may help us. When I asked about what would happen if things became worse, he said he planned to hospitalize him. I have no problem with hospitalizing, however I have a major problem with the hospital he plans on putting him in. In fact, there is no way I would consent.
I talked to his pediatrician yesterday and filled them in on that appointment. The nurse said maybe the seizures weren't medical. Now, let me just tell you- there have been times when I have known my children have had issues that needed to be treated inpatient at the psych hospital. Or at least I thought so at the time. This, however, is not a psych issue. Of this I'm 120% positive. Hunter is not depressed, stressed, or off-kilter. In fact, he's been right cheerful and other than concerned, he's been an overall happy kid. He doesn't even remember or realize that about 75% of his seizures ever occurred. He only remembers having a headache, or feeling really tired (after). He doesn't even know he was unconscious. He really wants to go back to school. He thinks he is ready, and he likes school, and misses it. This is not a mental issue. Regardless, the pediatrician is going to be of no help, whatsoever. The psychiatrist said to put him on home study, so I called the school and started setting that up yesterday.
The good news (in fact, great news) is that the transition from the lithium to the depakote went smoothly. Not only did it go smoothly, he had NO seizures yesterday that I witnessed! I'm hoping that we will have that great of a day today. He actually slept Wednesday and Thursday nights (for the first time in ages) and was so much more alert and awake yesterday. I'm cautiously encouraged. Hunter is over the moon.
Yesterday wasn't the greatest day on all fronts, however- Aaron had an appointment with his orthopedist for his shoulder. There is apparently nothing torn (which is good, but bad because he is in such pain we were hoping for something that would be able to be repaired) just a remarkable thinning of the tendon. Once again, the hypermobility is an issue, she doesn't want to do surgery on the shoulder because she said he is too hypermobile, and that is the root issue and that wouldn't change with surgery. They took away his pain medication (ultram/mobic)and told him to use motrin/tylenol. UGH. He was barely existing as it was. He has an appointment with the rheumatologist to evaluate him next Friday and I hope they will do SOMETHING. He is so miserable. And a miserable dad makes for a miserable everyone else.
Dakota is feeling very left out these days, and acting out in unpleasant ways. He is being very mean and hateful to the rest of us, refusing to do homework and not doing work in school again. We have gone from A and B's to D's and F's over the last two weeks. He has physically attacked Tristan and is just overall being horrible. I've talked to him about positive versus negative attention, and will have to work on giving him some one on one time this weekend.
Tristan and I snuck away to speech yesterday since Daddy came home right after his orthopedic appointment. It was nice to have some quiet time and weird to only have one child! We are dead broke, but I scavenged up some free cone coupons for Dairy Queen and Mcdonalds, so we had a chocolate icecream cone on the way there and he had a vanilla cone on the way back. He was in heaven. No improvement in speech however, since we haven't had time to practice these last couple of weeks.
Giovanna has been hanging in as well as possible. Her schedule has been shot to hell with all the appointments in the last two weeks, as well as no alone time with mom since Hunter is here all day and no naps because we haven't been home. Potty training is non existant for the most part but she is faring well otherwise. She has been going through a Daddy's girl phase, but has finally figured out it's okay to love both Mommy and Daddy. This morning is her Head Start registration. I don't know much about the program here except it's home based. She really is wanting a classroom type setting but we have an appointment set up for a screening for the regular preschool in a week or two. They are supposed to work well together, so we will find out more about it this morning.
Aaron has his appointment with the retinal specialist this morning to see if surgery will be an option to shift the scar tissue from the damage of the open eye surgery, lazer surgeries, and histoplasmosis. I'm praying that this goes well, if not, it's going to be a long weekend. I'm afraid if this is bad news he may hit the depths of depression.
Life sure hasn't been fun lately. I miss being able to workout and my body is looking like I miss it too! I'm doing better about the stress eating but I have already done some damage. I just need a break from all this stress and worry and running. I'm hoping this weekend will go better. I pray that Hunter's seizures will be gone this weekend. We need a break.
I talked to his pediatrician yesterday and filled them in on that appointment. The nurse said maybe the seizures weren't medical. Now, let me just tell you- there have been times when I have known my children have had issues that needed to be treated inpatient at the psych hospital. Or at least I thought so at the time. This, however, is not a psych issue. Of this I'm 120% positive. Hunter is not depressed, stressed, or off-kilter. In fact, he's been right cheerful and other than concerned, he's been an overall happy kid. He doesn't even remember or realize that about 75% of his seizures ever occurred. He only remembers having a headache, or feeling really tired (after). He doesn't even know he was unconscious. He really wants to go back to school. He thinks he is ready, and he likes school, and misses it. This is not a mental issue. Regardless, the pediatrician is going to be of no help, whatsoever. The psychiatrist said to put him on home study, so I called the school and started setting that up yesterday.
The good news (in fact, great news) is that the transition from the lithium to the depakote went smoothly. Not only did it go smoothly, he had NO seizures yesterday that I witnessed! I'm hoping that we will have that great of a day today. He actually slept Wednesday and Thursday nights (for the first time in ages) and was so much more alert and awake yesterday. I'm cautiously encouraged. Hunter is over the moon.
Yesterday wasn't the greatest day on all fronts, however- Aaron had an appointment with his orthopedist for his shoulder. There is apparently nothing torn (which is good, but bad because he is in such pain we were hoping for something that would be able to be repaired) just a remarkable thinning of the tendon. Once again, the hypermobility is an issue, she doesn't want to do surgery on the shoulder because she said he is too hypermobile, and that is the root issue and that wouldn't change with surgery. They took away his pain medication (ultram/mobic)and told him to use motrin/tylenol. UGH. He was barely existing as it was. He has an appointment with the rheumatologist to evaluate him next Friday and I hope they will do SOMETHING. He is so miserable. And a miserable dad makes for a miserable everyone else.
Dakota is feeling very left out these days, and acting out in unpleasant ways. He is being very mean and hateful to the rest of us, refusing to do homework and not doing work in school again. We have gone from A and B's to D's and F's over the last two weeks. He has physically attacked Tristan and is just overall being horrible. I've talked to him about positive versus negative attention, and will have to work on giving him some one on one time this weekend.
Tristan and I snuck away to speech yesterday since Daddy came home right after his orthopedic appointment. It was nice to have some quiet time and weird to only have one child! We are dead broke, but I scavenged up some free cone coupons for Dairy Queen and Mcdonalds, so we had a chocolate icecream cone on the way there and he had a vanilla cone on the way back. He was in heaven. No improvement in speech however, since we haven't had time to practice these last couple of weeks.
Giovanna has been hanging in as well as possible. Her schedule has been shot to hell with all the appointments in the last two weeks, as well as no alone time with mom since Hunter is here all day and no naps because we haven't been home. Potty training is non existant for the most part but she is faring well otherwise. She has been going through a Daddy's girl phase, but has finally figured out it's okay to love both Mommy and Daddy. This morning is her Head Start registration. I don't know much about the program here except it's home based. She really is wanting a classroom type setting but we have an appointment set up for a screening for the regular preschool in a week or two. They are supposed to work well together, so we will find out more about it this morning.
Aaron has his appointment with the retinal specialist this morning to see if surgery will be an option to shift the scar tissue from the damage of the open eye surgery, lazer surgeries, and histoplasmosis. I'm praying that this goes well, if not, it's going to be a long weekend. I'm afraid if this is bad news he may hit the depths of depression.
Life sure hasn't been fun lately. I miss being able to workout and my body is looking like I miss it too! I'm doing better about the stress eating but I have already done some damage. I just need a break from all this stress and worry and running. I'm hoping this weekend will go better. I pray that Hunter's seizures will be gone this weekend. We need a break.
Wednesday, March 18, 2009
Spring in Limbo.
That is what it feels like here, where I am right now. The days have been beautiful. Sun shining, warm weather, fresh air and the hints of spring everywhere- green grass, birds singing, open windows and fresh breezes. I yearned for this. At the same time, my heart is heavy, unable to fully enjoy anything, worried about my family. Not knowing where all of this is going.
I haven't blogged since Friday morning. The weekend went by like a whirlwind as they often do. We were all too exhausted from the emotional chaos of the week before. Friday evening we had date night, we went out and picked out Aaron's glasses, they look great. Then we went out with our best friends to Smokey Bones. We had a great time. It just didn't seem like I was totally "there". I wanted to be though. I was worried about Hunter but he did fine with Papa while we were out.
Saturday was a beautiful day, a constant fight with Giovanna to keep her in the house, in the yard, on the street. She is quite the runner. I worked a bit on the teapot set. I'm getting really close to finishing it now. I'm worried I won't have time to do her Easter dress. I do have a backup just in case, if it still fits her. The day turned strange when our neighbors on both side of us got in a full on fight in the front yards. The kids were outside as well. The neighbor children got in an argument over a snake, and one of our neighbor boys was beaten with a fishing rod, punched and kicked. It really sent Hunter over the moon, into a total meltdown. The police were called and the havoc went on for hours, in fact it went into Sunday. I hope and pray this is not a sign of things to come with the neighbors.
Sunday went much like Saturday, lolling around the house trying to regenerate for the week ahead. Hunter was still having small "seizures" but nothing over the top notable. Enough to continue to worry us though. I pinched a nerve on the right side of my neck, loosing mobility. I had been trying to quit taking my muscle relaxer, to see if it still was giving any benefit. Apparently it does. :)
Monday we decided to try sending Hunter back to school to see how he would do. That is what the doctors had suggested and he was more than happy to go back. He got up and we got him on the bus. Shortly after I received 3 phone calls. The first was from the bus driver, he had a seizure on the bus, missed his dropoff, and Tristan had been trying to arouse him, with no success. When it came time for him to get off the bus to kindergarten he refused to leave his brother (thank God, since they didn't even know he was still on the bus!) and Tristan was hysterical. They did arouse him and the bus driver brought him back to me. Poor Tristan. The other two were from the Jr. High telling me what happened and from the Elementary. So, I packed him and Giovanna up and headed to the ER. They did get us back promptly and he finally got that EEG. Once it was done they sent us back to ER and discharged us. We didn't get a diagnosis, treatment plan or even the EEG results. Luckily Papa had picked Giovanna up and taken her to McDonalds. She had a fun time. We headed home and I started calling doctors. No one had any additional answers, but his pediatrician did call for the results of the EEG stat. He was VERY concerned and worried and amazed that they discharged him. He wanted to set up an extended appointment to go over all that was going on. He of course was already gone and his nurse was going to try to fit us in. She said she would call back on Wednesday. Seizures continue. Hunter is exhausted. Aaron is extremely depressed as well he keeps having reoccuring dreams every night that he dies during surgery. It is really wearing on him along with his worries about Hunter.
Yesterday we picked up Tristan from school in the morning to take him to the dentist. He got a filling in one of his back teeth. He did very good and this dentist seems very caring. Which is good because her assistants are real bitchy to me and I don't enjoy that part. We rushed home since Papa was coming to read to the kindergarten yesterday. The kids had fun wearing their St. Patricks Day stuff. They looked very festive! I took a picture in the morning before taking Tristan and Dakota to school. The afternoon went well, Papa came, I got ready to go out with Aaron after he got home from work, which was fun. I think the primping for date night is almost as fun as going out! I did get quite a bit of housework done, which needed doing. Everything has been put on the back burner dealing with all the health issues. I called the pedi and finally got a call back in the afternoon. He wants the psych doc to do more for Hunter. He wants to see med changes done and fast. He is referring to a neurologist as well and that appointment is in the first week of April. He is very concerned and worried. I did get ahold of the psych again and they are fitting Hunter in today (Wednesday). I hope they do SOMETHING. The kids were all in fighting moods like I rarely see around here. I think it was the heat. Aaron and I went out to O'Charleys which was delicious. We then went to LensCrafters to get his glasses adjusted again, and then home. We did have a good time. I still don't feel like I really am myself with all this going on. I'm just totally emotionally spent and I can't ever feel totally relaxed or happy. I'm sure that it did help to get out and have a moment of sanity though. We came home and the kids had been fighting and vicious while we were gone. They had simply gotten too hot, I wish I would have closed the windows and turned on the air in retrospect. Heat just seems to make Dakota meaner than hell. It was 76 in the house when we arrived home, much too much for Dakota. Aaron talked to his dad for a while, his sister is back in the hospital and Papa is going to go to Colorado to be with her for three weeks or so. She will likely be in different facilities for the next three months or so. They are worried that her mental status will never recover from the damage done to her thyroid. It's a sad time for everyone.
So this morning I'm catching up and hoping that we get somewhere today with Hunter's psych (or rather the one taking over for her while she is on leave). I was going to try sending him to school again today, but I couldn't get him awake. He is just exhausted. I pray that we will get some answers this week and get out of this limbo. I need to know what is wrong and what to do about it. Aaron's appointment with the orthopedic surgeon is tomorrow, to find out if he will need surgery on his shoulder or what. He sees the retinal surgeon on Friday to see if his retinas can be surgically repaired. I'm on pins and needles for both. Please, God. Send some answers this week. Answers and solutions. Please.
I haven't blogged since Friday morning. The weekend went by like a whirlwind as they often do. We were all too exhausted from the emotional chaos of the week before. Friday evening we had date night, we went out and picked out Aaron's glasses, they look great. Then we went out with our best friends to Smokey Bones. We had a great time. It just didn't seem like I was totally "there". I wanted to be though. I was worried about Hunter but he did fine with Papa while we were out.
Saturday was a beautiful day, a constant fight with Giovanna to keep her in the house, in the yard, on the street. She is quite the runner. I worked a bit on the teapot set. I'm getting really close to finishing it now. I'm worried I won't have time to do her Easter dress. I do have a backup just in case, if it still fits her. The day turned strange when our neighbors on both side of us got in a full on fight in the front yards. The kids were outside as well. The neighbor children got in an argument over a snake, and one of our neighbor boys was beaten with a fishing rod, punched and kicked. It really sent Hunter over the moon, into a total meltdown. The police were called and the havoc went on for hours, in fact it went into Sunday. I hope and pray this is not a sign of things to come with the neighbors.
Sunday went much like Saturday, lolling around the house trying to regenerate for the week ahead. Hunter was still having small "seizures" but nothing over the top notable. Enough to continue to worry us though. I pinched a nerve on the right side of my neck, loosing mobility. I had been trying to quit taking my muscle relaxer, to see if it still was giving any benefit. Apparently it does. :)
Monday we decided to try sending Hunter back to school to see how he would do. That is what the doctors had suggested and he was more than happy to go back. He got up and we got him on the bus. Shortly after I received 3 phone calls. The first was from the bus driver, he had a seizure on the bus, missed his dropoff, and Tristan had been trying to arouse him, with no success. When it came time for him to get off the bus to kindergarten he refused to leave his brother (thank God, since they didn't even know he was still on the bus!) and Tristan was hysterical. They did arouse him and the bus driver brought him back to me. Poor Tristan. The other two were from the Jr. High telling me what happened and from the Elementary. So, I packed him and Giovanna up and headed to the ER. They did get us back promptly and he finally got that EEG. Once it was done they sent us back to ER and discharged us. We didn't get a diagnosis, treatment plan or even the EEG results. Luckily Papa had picked Giovanna up and taken her to McDonalds. She had a fun time. We headed home and I started calling doctors. No one had any additional answers, but his pediatrician did call for the results of the EEG stat. He was VERY concerned and worried and amazed that they discharged him. He wanted to set up an extended appointment to go over all that was going on. He of course was already gone and his nurse was going to try to fit us in. She said she would call back on Wednesday. Seizures continue. Hunter is exhausted. Aaron is extremely depressed as well he keeps having reoccuring dreams every night that he dies during surgery. It is really wearing on him along with his worries about Hunter.
Yesterday we picked up Tristan from school in the morning to take him to the dentist. He got a filling in one of his back teeth. He did very good and this dentist seems very caring. Which is good because her assistants are real bitchy to me and I don't enjoy that part. We rushed home since Papa was coming to read to the kindergarten yesterday. The kids had fun wearing their St. Patricks Day stuff. They looked very festive! I took a picture in the morning before taking Tristan and Dakota to school. The afternoon went well, Papa came, I got ready to go out with Aaron after he got home from work, which was fun. I think the primping for date night is almost as fun as going out! I did get quite a bit of housework done, which needed doing. Everything has been put on the back burner dealing with all the health issues. I called the pedi and finally got a call back in the afternoon. He wants the psych doc to do more for Hunter. He wants to see med changes done and fast. He is referring to a neurologist as well and that appointment is in the first week of April. He is very concerned and worried. I did get ahold of the psych again and they are fitting Hunter in today (Wednesday). I hope they do SOMETHING. The kids were all in fighting moods like I rarely see around here. I think it was the heat. Aaron and I went out to O'Charleys which was delicious. We then went to LensCrafters to get his glasses adjusted again, and then home. We did have a good time. I still don't feel like I really am myself with all this going on. I'm just totally emotionally spent and I can't ever feel totally relaxed or happy. I'm sure that it did help to get out and have a moment of sanity though. We came home and the kids had been fighting and vicious while we were gone. They had simply gotten too hot, I wish I would have closed the windows and turned on the air in retrospect. Heat just seems to make Dakota meaner than hell. It was 76 in the house when we arrived home, much too much for Dakota. Aaron talked to his dad for a while, his sister is back in the hospital and Papa is going to go to Colorado to be with her for three weeks or so. She will likely be in different facilities for the next three months or so. They are worried that her mental status will never recover from the damage done to her thyroid. It's a sad time for everyone.
So this morning I'm catching up and hoping that we get somewhere today with Hunter's psych (or rather the one taking over for her while she is on leave). I was going to try sending him to school again today, but I couldn't get him awake. He is just exhausted. I pray that we will get some answers this week and get out of this limbo. I need to know what is wrong and what to do about it. Aaron's appointment with the orthopedic surgeon is tomorrow, to find out if he will need surgery on his shoulder or what. He sees the retinal surgeon on Friday to see if his retinas can be surgically repaired. I'm on pins and needles for both. Please, God. Send some answers this week. Answers and solutions. Please.
Friday, March 13, 2009
Worried.
I didn't even sit down at the computer at all yesterday, so I didn't have a chance to blog. Wednesday went by like a whirlwind, fast and furious.
I kept everyone home to go to the appointments, and we headed into Springfield. Our first stop was at the pediatrician's office, for Hunter to have a urinalysis done. That ended up being a long wait, because the receptionist forgot we were there! Giovanna was being a real pill, they have a kids room and a teen room. Of course they don't want kids in the teen room so I spent the whole time running after Giovanna trying to keep her out of that room. Finally they called me up and asked if I was still waiting (YES!) and apologized up and down that she had forgotten to tell anyone I was there! So we went back, the kids loaded up on stickers and lollipops, Hunter did the test, more stickers and lollipops while we waited for the results, and then we heard that it was all clear. No urinary tract infection, they would keep checking for the next two days but so far so good.
It was lunchtime and I had the kids pack their lunches. They were so excited because they never get to use their lunchboxes, because they eat hot lunch at school. We headed off to the park by the lake because it was close to our next appointment, and it's one of their favorite places. The excitement built on the way there whether the geese would be there- they LOVE the geese. Sure enough, there were geese and a whole lot of seagulls. We had the best time! They fed the seagulls and geese and we marveled at how the seagulls could hover in the air. The geese were hilarious, there were two that we were feeding and they got into a huge fight with the geese in the water, feathers flying to keep them from coming up. They weren't about to share their treats!
Here are some crappy cameraphone pics of the events. My lense is totally crapped out so this is as good as it gets.
When we ran out of food we decided to pack it in and head over to a different park so maybe they could get out and play for a minute on the playset. We went around the corner and I saw what looked like a deer statute in someone's backyard- until it moved! Then I yelled at the kids and looked closer and there were four does feeding in their yard, not far from the street! We pulled over and watched them for a few minutes. I tried to get pictures with my phone. For some reason you've got to click on these to enlarge them.
We then headed out to the bigger park, bundled up everyone and headed out to the play area. Oh my goodness was it cold. Dakota mentioned they had a sandbox and I told him "No way!" we had to get to the psychiatrist's appointment next and I didn't want them covered in mud. It was a nice play place, and Tristan and Giovanna were in heaven. I followed Giovanna helping her on and off of things. I was helping her onto a slide when I looked over and Dakota and Hunter were in the sandbox. Dakota was standing there looking at Hunter who was sitting in it, on his knees, digging slowly with his hands. I yelled over at them and told them to get out. Hunter stood up and he had dirt all over his pants and hands. I got after him and he had kind of a blank look. He went over and got on a swing. By this time I was totally frozen, I was past ready to go. Next I heard Hunter crying out in pain. I ran over and he said he had pulled out his shoulders somehow on the swing chains. Time to GO. Of course, getting a 3 year old off a park playset is not exactly the easiest thing in the world. After much coaxing and threatening to leave without her, we managed to get in the car. As we were leaving I again got after Hunter for the dirty pants and he started to cry. He said he didn't remember even being in the sandbox. He told me what he did remember, and there was a period that he didn't remember at all. He was getting more and more upset as was I so I figured we would just go on to the psych's office and just stay there until they were ready to see us. We were about 45 minutes early but I didn't even care at that point.
We got there, and I took everyone into the waiting room. I didn't even bother to check in but got everyone's coats off and grabbed my purse and took Giovanna to the ladies room. I got back and I was one kid short. They had already taken Dakota back to be weighed and measured. The doctor himself came out and asked for Hunter, asked me if he was the one that was having serious problems (they both had an appointment) and said to bring him on back. He looked as concerned as I was.
I went over what had happened with Hunter, and the losing time and hallucinations. He said he suspected seizures. Seizures could cause the hallucinations and time loss he was experiencing. I told him about his vision loss, and how he could see less out of his left eye than his right and his horrible headaches which seem to always precede these episodes. He scheduled him for a sleep deprived EEG with photostimulation. He decided to take him off adderall completely for now to see if that would help him stabilize.
We switched with Dakota, and went over his meds, decided to lower his afternoon adderall since the increased amount hadn't made any difference with his ability to concentrate on his homework. He told the doctor that he had been having a bit of trouble getting to sleep at night, and the doctor seemed to think it may have been because of the afternoon increase in adderall.
So we headed out front, I stopped to try to schedule the appointment with the nurse but the area at the hospital that does those tests wasn't answering their phone. I got the school excuses for the boys (the rest of the week for Hunter, maybe longer depending on how he's doing come Monday) and we gathered up and headed out. When we got to the car I realized I didn't have my bluetooth. I got out and searched the car and the whole area but it wasn't there. I sent Hunter into search in the doctor's office but it wasn't there. I decided to run back by the park just in case it was there. We drove back and as we pulled up to the parking space we had parked in, there it lay! We were stunned. I can't believe it was still there! That was close. I'm now on my third bluetooth, I lost the first two, and I'm determined not to lose this one.
I called Aaron and filled him in on the way home. We got home and my vacuum cleaner was here from Dyson! I have had the worst luck with my Dyson Absolute Animal. It's been shipped to New York for warranty work a total of six times in the year I've had it. I swear, nearly everything on that stupid vacuum has crapped out. Finally, after much grief, they decided to send me a refurbished vacuum to replace my lemon. Not ideal, but better that nothing which is what I had. When I opened the vacuum they sent, it was a brand new vacuum! It had never been unpacked, all new everything- attachments, manuals, everything! I pray this one works. It is different than the one I had. It's beautiful- I'm in love. Just please don't crap out.
After the long day we decided to get dinner from Hardees. We hadn't had Hardees forever, so it was a treat. We ate dinner, then CRASHED. Aaron and I stayed up and watched some DVRed stuff on TV. Big Love, which I had been wanting to see, and House I think. I'm not sure I remember- I was exhausted.
So yesterday morning we got up, got people off to the bus, and decided to head into town. I needed to get some stuff at Sally's for Mommy Maintenance and Morale. Hunter has been making some felt teddy bears called "Pocket Pals" and wanted to get some more felt. He is very much like me, when he gets into a project he gets "zoned". I think that is helping him to keep his mind off everything right now. He's been really shook over it all. He has been taking frequent "mom breaks" just long endless hugs to try to get the reassurance that things will eventually be okay. He feels so very much out of control of all of this. Throughout the morning, he had frequent "spells". He would be staring and I couldn't get his attention, or he would fall over "asleep" and it would take me several minutes to be able to get him to open his eyes. He doesn't remember any of this after the fact, so it's hard for him to grasp that anything happened in between the last moment he remembers and the moment I get his attention. In his mind it just flows seamlessly so me in his face saying his name really spooks him. He also had one incident where he couldn't feel his legs. He said they felt numb- so he had some feeling but both legs from the hip down felt numb all at once. That was scary.
I had a gift card from Old Navy left from Christmas I had been saving, but over the last two weeks most of my shirts have developed holes in the same place (from the washer? I don't know?) so I thought I would peek in and see what there was. I ended up finding a shirt that I had considered getting in the winter in the color I had originally picked, marked down to 3.00! Just then I got a phone call from the nurse the soonest appointment she could get for Hunter for his EEG was the last week of March. She didn't feel that that was soon enough so we discussed all the spells of the morning and we both agreed maybe going to the ER would be a good choice when he has another spell. We kept the EEG appointement and I got off the phone and went back to shopping. I got Hunter to try on jeans as him not having any pants that fit has been a major issue lately. While he was in the dressing room Giovanna went on a spree of going to each mannequin wearing a skirt and lifting it up to see their "peepee" then making a huge dramatic scene saying, "EWW" and holding her nose. I was fighting with her trying to get her to stay in the cart or hold my hand or SOMETHING, and was wearing out fast. We figured out his size, grabbed two pairs of jeans and headed for checkout. Giovanna was past the point and ready to go so we scooped her up and out we went.
I called Aaron on the way home and told him about the conversation with the nurse. We agreed to discuss it further later. We don't want to get hit with a huge ER bill if they dub it not being an emergency (insurance) and both of us are dragging a thousand trails so maybe it would be better to wait until Monday- giving us all some family time and rest in case he was admitted from the ER. Also, Aaron's MRI is today (Friday) so we have to make sure to get that done.
We headed home, unloaded, reloaded, got the boys from school, came home, got everyone drinks and potty breaks, pencils and erasers for homework and loaded back into the van to go to Springfield again for Tristan's speech therapy. I was so exhausted by this point. We got there and couldn't find Giovanna's coat- I swear I remember putting it in the car! I wrapped her in her blankie and off we went. We walked from the parking garage all the way into the hospital and into pediatric rehab, then noticed the little stinker was only wearing socks! I was mortified. She hadn't said anything the whole time but good God! I went over all the people that looked at us on the way in. OMG. So I ran out to the car and got her shoes.
We worked on Dakota's makeup work from the day before and Hunter's makeup work, and Dakota's homework. Giovanna of course was jealous that the brothers were getting all the attention so she was being a complete butt. We were the only ones in the waiting room thank God, because she was standing on the chairs and smacking the pictures on the wall, I was chasing after her and trying to keep her down while guiding them through their school work. Finally Tristan was done and we loaded up and headed towards home. It's our weekly routine to stop at Little Caesars on the way home to get the 5.00 pizzas, and we stopped to get our pizza. I ran .30 short of being able to get two of the breadstick add-ons, talk about humiliating! I was close to melt down by this time. So we ended up with 2- two liters, 2 pizzas and 1 breadsticks (instead of two). Of course then immediately upon getting to the car havoc ensued over the breadsticks, and I came UNGLUED. I had my melt down, texted Aaron over it and then he called me and talked me down from the ledge. LOL I hurried home and we ate our pizza, YUM! and I melted into the couch. Aaron and I got the kids to bed and stayed up to watch Supernatural on DVR. We were both exhausted so we crashed early.
This morning is Aaron's MRI, and date night (FINALLY!) I'm so ready for a night out, and a weekend to relax. I'm praying things are low key over the weekend and we can make it until Monday without anyone landing in the hospital. Please.
I kept everyone home to go to the appointments, and we headed into Springfield. Our first stop was at the pediatrician's office, for Hunter to have a urinalysis done. That ended up being a long wait, because the receptionist forgot we were there! Giovanna was being a real pill, they have a kids room and a teen room. Of course they don't want kids in the teen room so I spent the whole time running after Giovanna trying to keep her out of that room. Finally they called me up and asked if I was still waiting (YES!) and apologized up and down that she had forgotten to tell anyone I was there! So we went back, the kids loaded up on stickers and lollipops, Hunter did the test, more stickers and lollipops while we waited for the results, and then we heard that it was all clear. No urinary tract infection, they would keep checking for the next two days but so far so good.
It was lunchtime and I had the kids pack their lunches. They were so excited because they never get to use their lunchboxes, because they eat hot lunch at school. We headed off to the park by the lake because it was close to our next appointment, and it's one of their favorite places. The excitement built on the way there whether the geese would be there- they LOVE the geese. Sure enough, there were geese and a whole lot of seagulls. We had the best time! They fed the seagulls and geese and we marveled at how the seagulls could hover in the air. The geese were hilarious, there were two that we were feeding and they got into a huge fight with the geese in the water, feathers flying to keep them from coming up. They weren't about to share their treats!
Here are some crappy cameraphone pics of the events. My lense is totally crapped out so this is as good as it gets.
When we ran out of food we decided to pack it in and head over to a different park so maybe they could get out and play for a minute on the playset. We went around the corner and I saw what looked like a deer statute in someone's backyard- until it moved! Then I yelled at the kids and looked closer and there were four does feeding in their yard, not far from the street! We pulled over and watched them for a few minutes. I tried to get pictures with my phone. For some reason you've got to click on these to enlarge them.
We then headed out to the bigger park, bundled up everyone and headed out to the play area. Oh my goodness was it cold. Dakota mentioned they had a sandbox and I told him "No way!" we had to get to the psychiatrist's appointment next and I didn't want them covered in mud. It was a nice play place, and Tristan and Giovanna were in heaven. I followed Giovanna helping her on and off of things. I was helping her onto a slide when I looked over and Dakota and Hunter were in the sandbox. Dakota was standing there looking at Hunter who was sitting in it, on his knees, digging slowly with his hands. I yelled over at them and told them to get out. Hunter stood up and he had dirt all over his pants and hands. I got after him and he had kind of a blank look. He went over and got on a swing. By this time I was totally frozen, I was past ready to go. Next I heard Hunter crying out in pain. I ran over and he said he had pulled out his shoulders somehow on the swing chains. Time to GO. Of course, getting a 3 year old off a park playset is not exactly the easiest thing in the world. After much coaxing and threatening to leave without her, we managed to get in the car. As we were leaving I again got after Hunter for the dirty pants and he started to cry. He said he didn't remember even being in the sandbox. He told me what he did remember, and there was a period that he didn't remember at all. He was getting more and more upset as was I so I figured we would just go on to the psych's office and just stay there until they were ready to see us. We were about 45 minutes early but I didn't even care at that point.
We got there, and I took everyone into the waiting room. I didn't even bother to check in but got everyone's coats off and grabbed my purse and took Giovanna to the ladies room. I got back and I was one kid short. They had already taken Dakota back to be weighed and measured. The doctor himself came out and asked for Hunter, asked me if he was the one that was having serious problems (they both had an appointment) and said to bring him on back. He looked as concerned as I was.
I went over what had happened with Hunter, and the losing time and hallucinations. He said he suspected seizures. Seizures could cause the hallucinations and time loss he was experiencing. I told him about his vision loss, and how he could see less out of his left eye than his right and his horrible headaches which seem to always precede these episodes. He scheduled him for a sleep deprived EEG with photostimulation. He decided to take him off adderall completely for now to see if that would help him stabilize.
We switched with Dakota, and went over his meds, decided to lower his afternoon adderall since the increased amount hadn't made any difference with his ability to concentrate on his homework. He told the doctor that he had been having a bit of trouble getting to sleep at night, and the doctor seemed to think it may have been because of the afternoon increase in adderall.
So we headed out front, I stopped to try to schedule the appointment with the nurse but the area at the hospital that does those tests wasn't answering their phone. I got the school excuses for the boys (the rest of the week for Hunter, maybe longer depending on how he's doing come Monday) and we gathered up and headed out. When we got to the car I realized I didn't have my bluetooth. I got out and searched the car and the whole area but it wasn't there. I sent Hunter into search in the doctor's office but it wasn't there. I decided to run back by the park just in case it was there. We drove back and as we pulled up to the parking space we had parked in, there it lay! We were stunned. I can't believe it was still there! That was close. I'm now on my third bluetooth, I lost the first two, and I'm determined not to lose this one.
I called Aaron and filled him in on the way home. We got home and my vacuum cleaner was here from Dyson! I have had the worst luck with my Dyson Absolute Animal. It's been shipped to New York for warranty work a total of six times in the year I've had it. I swear, nearly everything on that stupid vacuum has crapped out. Finally, after much grief, they decided to send me a refurbished vacuum to replace my lemon. Not ideal, but better that nothing which is what I had. When I opened the vacuum they sent, it was a brand new vacuum! It had never been unpacked, all new everything- attachments, manuals, everything! I pray this one works. It is different than the one I had. It's beautiful- I'm in love. Just please don't crap out.
After the long day we decided to get dinner from Hardees. We hadn't had Hardees forever, so it was a treat. We ate dinner, then CRASHED. Aaron and I stayed up and watched some DVRed stuff on TV. Big Love, which I had been wanting to see, and House I think. I'm not sure I remember- I was exhausted.
So yesterday morning we got up, got people off to the bus, and decided to head into town. I needed to get some stuff at Sally's for Mommy Maintenance and Morale. Hunter has been making some felt teddy bears called "Pocket Pals" and wanted to get some more felt. He is very much like me, when he gets into a project he gets "zoned". I think that is helping him to keep his mind off everything right now. He's been really shook over it all. He has been taking frequent "mom breaks" just long endless hugs to try to get the reassurance that things will eventually be okay. He feels so very much out of control of all of this. Throughout the morning, he had frequent "spells". He would be staring and I couldn't get his attention, or he would fall over "asleep" and it would take me several minutes to be able to get him to open his eyes. He doesn't remember any of this after the fact, so it's hard for him to grasp that anything happened in between the last moment he remembers and the moment I get his attention. In his mind it just flows seamlessly so me in his face saying his name really spooks him. He also had one incident where he couldn't feel his legs. He said they felt numb- so he had some feeling but both legs from the hip down felt numb all at once. That was scary.
I had a gift card from Old Navy left from Christmas I had been saving, but over the last two weeks most of my shirts have developed holes in the same place (from the washer? I don't know?) so I thought I would peek in and see what there was. I ended up finding a shirt that I had considered getting in the winter in the color I had originally picked, marked down to 3.00! Just then I got a phone call from the nurse the soonest appointment she could get for Hunter for his EEG was the last week of March. She didn't feel that that was soon enough so we discussed all the spells of the morning and we both agreed maybe going to the ER would be a good choice when he has another spell. We kept the EEG appointement and I got off the phone and went back to shopping. I got Hunter to try on jeans as him not having any pants that fit has been a major issue lately. While he was in the dressing room Giovanna went on a spree of going to each mannequin wearing a skirt and lifting it up to see their "peepee" then making a huge dramatic scene saying, "EWW" and holding her nose. I was fighting with her trying to get her to stay in the cart or hold my hand or SOMETHING, and was wearing out fast. We figured out his size, grabbed two pairs of jeans and headed for checkout. Giovanna was past the point and ready to go so we scooped her up and out we went.
I called Aaron on the way home and told him about the conversation with the nurse. We agreed to discuss it further later. We don't want to get hit with a huge ER bill if they dub it not being an emergency (insurance) and both of us are dragging a thousand trails so maybe it would be better to wait until Monday- giving us all some family time and rest in case he was admitted from the ER. Also, Aaron's MRI is today (Friday) so we have to make sure to get that done.
We headed home, unloaded, reloaded, got the boys from school, came home, got everyone drinks and potty breaks, pencils and erasers for homework and loaded back into the van to go to Springfield again for Tristan's speech therapy. I was so exhausted by this point. We got there and couldn't find Giovanna's coat- I swear I remember putting it in the car! I wrapped her in her blankie and off we went. We walked from the parking garage all the way into the hospital and into pediatric rehab, then noticed the little stinker was only wearing socks! I was mortified. She hadn't said anything the whole time but good God! I went over all the people that looked at us on the way in. OMG. So I ran out to the car and got her shoes.
We worked on Dakota's makeup work from the day before and Hunter's makeup work, and Dakota's homework. Giovanna of course was jealous that the brothers were getting all the attention so she was being a complete butt. We were the only ones in the waiting room thank God, because she was standing on the chairs and smacking the pictures on the wall, I was chasing after her and trying to keep her down while guiding them through their school work. Finally Tristan was done and we loaded up and headed towards home. It's our weekly routine to stop at Little Caesars on the way home to get the 5.00 pizzas, and we stopped to get our pizza. I ran .30 short of being able to get two of the breadstick add-ons, talk about humiliating! I was close to melt down by this time. So we ended up with 2- two liters, 2 pizzas and 1 breadsticks (instead of two). Of course then immediately upon getting to the car havoc ensued over the breadsticks, and I came UNGLUED. I had my melt down, texted Aaron over it and then he called me and talked me down from the ledge. LOL I hurried home and we ate our pizza, YUM! and I melted into the couch. Aaron and I got the kids to bed and stayed up to watch Supernatural on DVR. We were both exhausted so we crashed early.
This morning is Aaron's MRI, and date night (FINALLY!) I'm so ready for a night out, and a weekend to relax. I'm praying things are low key over the weekend and we can make it until Monday without anyone landing in the hospital. Please.
Wednesday, March 11, 2009
Playing Catch Up.
So yesterday we spent the whole day at home. Which admittedly felt pretty good after all the running we did the day before. Things here at home were getting out of hand. Amazing how everything runs wild when you are gone for a day. Dishes, laundry, toys, everything piles up to an unbelievable degree. To say that it looked like a tornado went through would not be an exaggeration. I still can't figure out how we end up with so much laundry to do in two days. It's truly unbelievable.
So I did make phone calls about Hunter, I contacted the pediatrician and his psychiatrists office again. I let them know about him getting no sleep because of frequent urination. The pediatrician's office called me back after 5 hours or so to tell me that all his symptoms could be explained by a urinary tract infection. (Who knew UTI's could cause hallucinations? This was Aaron and I's source of much humor last night. Yes, our pedi is an idiot). I made an appointment to take him in today for a urinalysis. The nurse for the psychiatrist's office made notes to his file, since we are going in today for an appointment to see the doctor. I'm still worried it may be a resurgence of his diabetes incipidus from his infancy. I'm anxious to hear the results of the blood tests done on Monday. I hope they will have the results back by this afternoon.
Hunter was still hallucinating yesterday, although he seemed much more together and stable. He is still having migraines and diarrhea. I'm very concerned that there is something physically wrong. He made a teddy bear from his scrap fabric for Tristan, that took up most of his morning. Then he helped me make muffins and he made oatmeal raisin cookies. I managed to get a little laundry and cleaning done. Giovanna finally pooped (yay!) and she is sure that the dime came out. I hope so, although I didn't see it. Being a mom can sure be gross at times. :)
It was storming all day and warm outside. Aaron was very concerned that there were going to be tornadoes last night so I found all the flashlights and tried my best to prepare. To be honest I feel very much like the walking dead, I think the time change and all that has been going on with Hunter this week haven't agreed with me. I haven't been able to sleep, in addition I've weaned off of the muscle relaxer that I've been taking at night for the last 7 years. It had stopped being effective so the pain clinic doc decided instead of switching it to a different dosage or med, we would try it without. He worries about me being drowsy during the day, which is a valid concern as I am frequently drowsy during the day. However, not getting any sleep at night isn't exactly helping that problem! I haven't been able to exercise for a little over a week and that isn't helping me at all. I need to take the time to do it for myself. When I'm upset about one of the kids is usually when I stop exercising and gain weight from stress eating. I'm falling right back into my same old trap again. :( This morning I'm going to work out before anything else. I haven't even had the energy to take off my makeup for the last two nights, I'm bottoming out.
I've decided to keep the kids home today. I would have to pick them all up at 10 anyway so I don't see the point. I hate for them to miss (especially Dakota) because it's so hard for him to catch up, but I don't really have an alternative with the way the appointment times are laid out today. It's going to be a full day, but I hope to goodness that it's productive. I'm really worried about Hunter, the whole situation is so overwhelming at this point. Surely we will get some answers today, I hope. There has to be a reason behind these spells. I pray we will get the answers soon, because it's so hard for all of us and I don't want him to have to deal with this as an adult. He's really come so far it's so hard to watch him have any setbacks now.
So I did make phone calls about Hunter, I contacted the pediatrician and his psychiatrists office again. I let them know about him getting no sleep because of frequent urination. The pediatrician's office called me back after 5 hours or so to tell me that all his symptoms could be explained by a urinary tract infection. (Who knew UTI's could cause hallucinations? This was Aaron and I's source of much humor last night. Yes, our pedi is an idiot). I made an appointment to take him in today for a urinalysis. The nurse for the psychiatrist's office made notes to his file, since we are going in today for an appointment to see the doctor. I'm still worried it may be a resurgence of his diabetes incipidus from his infancy. I'm anxious to hear the results of the blood tests done on Monday. I hope they will have the results back by this afternoon.
Hunter was still hallucinating yesterday, although he seemed much more together and stable. He is still having migraines and diarrhea. I'm very concerned that there is something physically wrong. He made a teddy bear from his scrap fabric for Tristan, that took up most of his morning. Then he helped me make muffins and he made oatmeal raisin cookies. I managed to get a little laundry and cleaning done. Giovanna finally pooped (yay!) and she is sure that the dime came out. I hope so, although I didn't see it. Being a mom can sure be gross at times. :)
It was storming all day and warm outside. Aaron was very concerned that there were going to be tornadoes last night so I found all the flashlights and tried my best to prepare. To be honest I feel very much like the walking dead, I think the time change and all that has been going on with Hunter this week haven't agreed with me. I haven't been able to sleep, in addition I've weaned off of the muscle relaxer that I've been taking at night for the last 7 years. It had stopped being effective so the pain clinic doc decided instead of switching it to a different dosage or med, we would try it without. He worries about me being drowsy during the day, which is a valid concern as I am frequently drowsy during the day. However, not getting any sleep at night isn't exactly helping that problem! I haven't been able to exercise for a little over a week and that isn't helping me at all. I need to take the time to do it for myself. When I'm upset about one of the kids is usually when I stop exercising and gain weight from stress eating. I'm falling right back into my same old trap again. :( This morning I'm going to work out before anything else. I haven't even had the energy to take off my makeup for the last two nights, I'm bottoming out.
I've decided to keep the kids home today. I would have to pick them all up at 10 anyway so I don't see the point. I hate for them to miss (especially Dakota) because it's so hard for him to catch up, but I don't really have an alternative with the way the appointment times are laid out today. It's going to be a full day, but I hope to goodness that it's productive. I'm really worried about Hunter, the whole situation is so overwhelming at this point. Surely we will get some answers today, I hope. There has to be a reason behind these spells. I pray we will get the answers soon, because it's so hard for all of us and I don't want him to have to deal with this as an adult. He's really come so far it's so hard to watch him have any setbacks now.
Tuesday, March 10, 2009
Monday, Monday
There is just no nice way to put it, yesterday sucked. It sucked from the beginning to the end.
We got up early to take Dakota to get his hard brace fixed. A piece of the padding had chipped off and he had been complaining. Due to Hunter hallucinating some on Sunday evening, we decided to keep him home and keep an eye on him and try to get some help from the doctors covering his psych's maternity leave.
We of course were late getting off as usual, it was cold and dreary outside. We got there and he did get it fixed and it does look much better and he is very pleased with it. We got out of there, and remembered that we forgot the doctors note. The secretary from Dakota's school had already called and asked where he was, upon hearing he had an appointment, she rudely hung up on me! So we definitely wanted to get that note. We headed back and got it, took off for home again and then remembered we needed to borrow Papa's vacuum cleaner. So, we turned around again, went back all the way across town and stopped at Papas. I had been having back and forth conversations with the nurse at the psych's office, and stopped to talk to her for a minute there. Then off with the vacuum, decided to stop and get something from the grocery for dinner on the way home.
Off to home we went after the grocery. I was so exhausted by now I was trying not to fall asleep. I prompted Dakota what he needed to do quickly once we arrived at our house and I gathered him up and took him back to school. Got to his school, realized he had done none of what I asked and we drove BACK to the house. I made SURE he did it this time, and then we headed back to his school. Meanwhile, I get another call from the nurse that they need blood work done on Hunter ASAP. So, back to the house again, gather up everyones stuff, threw dinner in the crockpot, potty break and back on the road to Springfield. Took him to the lab, drew the blood and sat amongst some of the sickest people I have seen for some time (Please, God don't let us catch whatever they have!) and back to home AGAIN.
I'm really falling out by this time, so we hit the door, I set my alarm to wake me in 30 minutes to go pick up the boys and hit the bed with Giovanna. Ten minutes into laying down, phone starts ringing incessantly. Aaron's on break. He apologizes for waking us, we talk and it's time to get the kids.
So I pick up everyone, get them started on homework and crash with Giovanna, finally. Hunter was being silly and loud, but everything was going okay. Then he comes and gets me- he is just outraged over something with Dakota. Then the drama started.
He was losing the ability to understand what was going on around him, and getting worked up. I dealt with him until Aaron came home, and then we both talked to him and prepared dinner. After dinner came bed, and that's when it really got bad. Tristan was being silly coming down for his bedtime drink and dancing down the stairs. I gave him his drink and he went up- then he started crying/screaming. Hunter was angry at him and said he tapped him on the leg and he was trying to get him in trouble. Tristan was clearly hurt, but managed to tell him Hunter hit him in the face. One look at Tristan's face told the story, he had been hit.
Aaron immediately went to work, trying to get the truth out of Hunter. Unfortunately Hunter really did remember his version of the story. He had passed over the line with his hallucinations, he had hurt someone. So, back to the alarm on the door, and lockdown. My worst nightmare, and his I'm sure. He was instructed to call us when he needed to go to the bathroom. As it turned out, that meant almost every hour all night.
I'm starting to think that there may be a connection there. He is always so exhausted, but we had no idea that he was getting up so often at night. I'm hoping that maybe the tests yesterday will show something but I'm definitely going to call the doctors this morning and let them know about this frequent waking. He has been going every 2 hours during the day as well. As a baby he had diabetes incipidus (water diabetes) I'm wondering if maybe it has returned with puberty or if the lithium has set it off again.
It seems everytime things start going really good, something like this comes along. I feel bad for everyone involved, but especially Hunter. He was just devastated this morning over what happened, even though he still doesn't remember. He and Tristan made up and there was mucho hugging, but of course the trust is gone. I am having him shadow me today, never being out of my sight. I think that is the only way to deal with him at this point until he is stabilized. I will not hospitalize again, because it has never been of any benefit to him or us, it has only exacerbated the problem and prolonged his recovery. He wants to return to school but I don't think it's a good idea at this point. I plan on talking to the doctor this morning. I have cancelled his appointment today, I don't think it's a good idea to take him out and I don't have the money for the copay anyway. UGH.
I'm going to work on housework and that stinkin teapot. Hopefully today will be an opportunity for recovery for us all.
We got up early to take Dakota to get his hard brace fixed. A piece of the padding had chipped off and he had been complaining. Due to Hunter hallucinating some on Sunday evening, we decided to keep him home and keep an eye on him and try to get some help from the doctors covering his psych's maternity leave.
We of course were late getting off as usual, it was cold and dreary outside. We got there and he did get it fixed and it does look much better and he is very pleased with it. We got out of there, and remembered that we forgot the doctors note. The secretary from Dakota's school had already called and asked where he was, upon hearing he had an appointment, she rudely hung up on me! So we definitely wanted to get that note. We headed back and got it, took off for home again and then remembered we needed to borrow Papa's vacuum cleaner. So, we turned around again, went back all the way across town and stopped at Papas. I had been having back and forth conversations with the nurse at the psych's office, and stopped to talk to her for a minute there. Then off with the vacuum, decided to stop and get something from the grocery for dinner on the way home.
Off to home we went after the grocery. I was so exhausted by now I was trying not to fall asleep. I prompted Dakota what he needed to do quickly once we arrived at our house and I gathered him up and took him back to school. Got to his school, realized he had done none of what I asked and we drove BACK to the house. I made SURE he did it this time, and then we headed back to his school. Meanwhile, I get another call from the nurse that they need blood work done on Hunter ASAP. So, back to the house again, gather up everyones stuff, threw dinner in the crockpot, potty break and back on the road to Springfield. Took him to the lab, drew the blood and sat amongst some of the sickest people I have seen for some time (Please, God don't let us catch whatever they have!) and back to home AGAIN.
I'm really falling out by this time, so we hit the door, I set my alarm to wake me in 30 minutes to go pick up the boys and hit the bed with Giovanna. Ten minutes into laying down, phone starts ringing incessantly. Aaron's on break. He apologizes for waking us, we talk and it's time to get the kids.
So I pick up everyone, get them started on homework and crash with Giovanna, finally. Hunter was being silly and loud, but everything was going okay. Then he comes and gets me- he is just outraged over something with Dakota. Then the drama started.
He was losing the ability to understand what was going on around him, and getting worked up. I dealt with him until Aaron came home, and then we both talked to him and prepared dinner. After dinner came bed, and that's when it really got bad. Tristan was being silly coming down for his bedtime drink and dancing down the stairs. I gave him his drink and he went up- then he started crying/screaming. Hunter was angry at him and said he tapped him on the leg and he was trying to get him in trouble. Tristan was clearly hurt, but managed to tell him Hunter hit him in the face. One look at Tristan's face told the story, he had been hit.
Aaron immediately went to work, trying to get the truth out of Hunter. Unfortunately Hunter really did remember his version of the story. He had passed over the line with his hallucinations, he had hurt someone. So, back to the alarm on the door, and lockdown. My worst nightmare, and his I'm sure. He was instructed to call us when he needed to go to the bathroom. As it turned out, that meant almost every hour all night.
I'm starting to think that there may be a connection there. He is always so exhausted, but we had no idea that he was getting up so often at night. I'm hoping that maybe the tests yesterday will show something but I'm definitely going to call the doctors this morning and let them know about this frequent waking. He has been going every 2 hours during the day as well. As a baby he had diabetes incipidus (water diabetes) I'm wondering if maybe it has returned with puberty or if the lithium has set it off again.
It seems everytime things start going really good, something like this comes along. I feel bad for everyone involved, but especially Hunter. He was just devastated this morning over what happened, even though he still doesn't remember. He and Tristan made up and there was mucho hugging, but of course the trust is gone. I am having him shadow me today, never being out of my sight. I think that is the only way to deal with him at this point until he is stabilized. I will not hospitalize again, because it has never been of any benefit to him or us, it has only exacerbated the problem and prolonged his recovery. He wants to return to school but I don't think it's a good idea at this point. I plan on talking to the doctor this morning. I have cancelled his appointment today, I don't think it's a good idea to take him out and I don't have the money for the copay anyway. UGH.
I'm going to work on housework and that stinkin teapot. Hopefully today will be an opportunity for recovery for us all.
Monday, March 9, 2009
Teens and Teapots.
Well Saturday went just as well as I was hoping for. I couldn't have asked for a more beautiful day. The weather was absolutely perfect, not too cool, not too warm, sunny and gorgeous. It was great because my crew is getting a well developed case of cabin fever. Since I really wanted to finish the teaset I've been working on since November for Giovanna, I took it outside with me and made myself comfortable on the front porch while the little ones played.
Hunter took the opportunity to earn a little computer time by cleaning out the van, and Dakota stalked the yards as usual with his nerf guns. Tristan and Giovanna just didn't know what to do with themselves, dragging out all their ride on toys and ending up sitting and playing in the grass. It was perfect. I sat there and thought I wish every day were like this. Aaron worked a little overtime but returned in the afternoon. I needed this day to recharge, and it was great. I soaked up every single moment.
Sunday, well it wasn't quite as dreamy. Still working on the teapot from hell, but now I was damned determined to get it done so I was hyper focused. The teapot itself was finished Saturday and I was onto the teacups. I started an assembly line on the couch and taught the three boys how to pin them together while I sewed. Dakota loved helping, Tristan tried, and Hunter was definitely not thrilled. I ended up working all day on those teacups (not with help, just by myself) and I did finish them. The teaset, not so much. Now I just have saucers, teabags and spoons. Bah Humbug. I will say though that it IS coming out darling. I'm glad I took it on, and Giovanna is over the moon over it. Every time a new piece is finished she tries it out. She has already made pretend tea in the teapot and poured it into the teacups. I think she is going to treasure it when I finally ever do finish it, so I SUPPOSE it's worth it. :)
The teen portion of my weekend, well didn't go quite as swimmingly. Hunter is having major issues. We caught him in several lies, and his moods have been way off for about a week. The lies are major, because we had gotten past that and it was a huge hurdle. But this weekend he didn't seem to know that he was lying even when it was obvious. Then yesterday it became apparent that he wasn't lying so much as hallucinating. In the afternoon it got to the point that he was having entire scenarios in his head that weren't happening in reality. It was quite scary so we called his psych's office. I had called them several times over this last week telling them that he just wasn't himself, that something needed adjusting or checked. There was a resident on call, and she called us back but wasn't willing to do anything. She put a note in his file and said to hang on until Monday. Great :(. Aaron may have figured out the cause however- several of his meds had needed refilling a week ago. We called them in but the doctor didn't recognize Hunter as a patient (our doctor is on maternity leave, so the other doctors in her practice are picking up her patient load). It took 4 days to get the meds refilled, and we had no choice but to give him one of Dakota's meds (same med, 5 mg difference). Eventually we did get the meds refilled and he went back on his own, but then started with these weird behaviors. I'm guessing by his dose going up 5 mg, then decreasing by 5 mg we triggered this. I don't know how we could have done differently, however, 5 mg difference is certainly better than no med at all. Oh well. So I'm hoping that we get some help today. Poor baby, he is confused and scared and was in tears several times yesterday. The good thing is that he is really trying now to be a good kid, he is just really having a go round with his mind.
So, today we wait for help from this substitute doctor we've never met. I'm keeping him home from school, I truly don't think it would be a good thing to send him. I have Dakota home as well this morning, he is going to get his foot brace fixed.
This week is going to be so busy, there isn't one day without an appointment. Such is life I suppose! I'm going to get at least the saucers done today, I promise myself! There will be pictures of this teaset FINISHED here on this blog in the next couple of days! :)
Hunter took the opportunity to earn a little computer time by cleaning out the van, and Dakota stalked the yards as usual with his nerf guns. Tristan and Giovanna just didn't know what to do with themselves, dragging out all their ride on toys and ending up sitting and playing in the grass. It was perfect. I sat there and thought I wish every day were like this. Aaron worked a little overtime but returned in the afternoon. I needed this day to recharge, and it was great. I soaked up every single moment.
Sunday, well it wasn't quite as dreamy. Still working on the teapot from hell, but now I was damned determined to get it done so I was hyper focused. The teapot itself was finished Saturday and I was onto the teacups. I started an assembly line on the couch and taught the three boys how to pin them together while I sewed. Dakota loved helping, Tristan tried, and Hunter was definitely not thrilled. I ended up working all day on those teacups (not with help, just by myself) and I did finish them. The teaset, not so much. Now I just have saucers, teabags and spoons. Bah Humbug. I will say though that it IS coming out darling. I'm glad I took it on, and Giovanna is over the moon over it. Every time a new piece is finished she tries it out. She has already made pretend tea in the teapot and poured it into the teacups. I think she is going to treasure it when I finally ever do finish it, so I SUPPOSE it's worth it. :)
The teen portion of my weekend, well didn't go quite as swimmingly. Hunter is having major issues. We caught him in several lies, and his moods have been way off for about a week. The lies are major, because we had gotten past that and it was a huge hurdle. But this weekend he didn't seem to know that he was lying even when it was obvious. Then yesterday it became apparent that he wasn't lying so much as hallucinating. In the afternoon it got to the point that he was having entire scenarios in his head that weren't happening in reality. It was quite scary so we called his psych's office. I had called them several times over this last week telling them that he just wasn't himself, that something needed adjusting or checked. There was a resident on call, and she called us back but wasn't willing to do anything. She put a note in his file and said to hang on until Monday. Great :(. Aaron may have figured out the cause however- several of his meds had needed refilling a week ago. We called them in but the doctor didn't recognize Hunter as a patient (our doctor is on maternity leave, so the other doctors in her practice are picking up her patient load). It took 4 days to get the meds refilled, and we had no choice but to give him one of Dakota's meds (same med, 5 mg difference). Eventually we did get the meds refilled and he went back on his own, but then started with these weird behaviors. I'm guessing by his dose going up 5 mg, then decreasing by 5 mg we triggered this. I don't know how we could have done differently, however, 5 mg difference is certainly better than no med at all. Oh well. So I'm hoping that we get some help today. Poor baby, he is confused and scared and was in tears several times yesterday. The good thing is that he is really trying now to be a good kid, he is just really having a go round with his mind.
So, today we wait for help from this substitute doctor we've never met. I'm keeping him home from school, I truly don't think it would be a good thing to send him. I have Dakota home as well this morning, he is going to get his foot brace fixed.
This week is going to be so busy, there isn't one day without an appointment. Such is life I suppose! I'm going to get at least the saucers done today, I promise myself! There will be pictures of this teaset FINISHED here on this blog in the next couple of days! :)
Saturday, March 7, 2009
Keeping my nose above water.
That is how I have felt this week. I've been just trying to ride the waves, and trying to keep my nose above the water until the storm is over. I think I've done quite well. I'm so proud of myself. Yesterday I spent 5 hours straight making phone calls to arrange appointments and ask questions. I think I accomplished more yesterday than I have in the last couple of months. Although my brain felt totally melted after, I have quite the sense of accomplishment, plus I made some exciting accomplishments.
I tried to get Aaron and Hunter into the rheumatologist that diagnosed me, but he was not taking any patients. I begged and pleaded, but in the end they consulted with the other 3 doctors in the practice and one came forward and said he knew the diagnostic criteria for EDS. He even thinks he can follow them if they are diagnosed, which is more than the doctor I, Dakota and Tristan were diagnosed by could do. So I hope we won't be disappointed there.
Aaron is doing quite well on his pain meds from the orthopedic doctor. He seems to be dealing with the pain much better. His MRI is scheduled for March 13th, I'm anxious to see what the results will show.
I finally found a family practice doctor in a new clinic to follow Aaron and I! I have high hopes for this one. The receptionist was so nice on the phone, the place sounds SO much nicer than what we have been dealing with, and one of the doctors there is a close family friend of ours (his son was the best man at our wedding!) I'm so excited. He took us even knowing about the Ehlers Danlos, which is major- last time I tried to get a new doctor, they said no. They didn't have the time to deal with a patient with EDS.
Dakota has an appointment to get his brace fixed. Dakota has been having a bad year with his EDS. He gained a lot of weight from the medicine that he was on last year for his bipolar disorder. Weight + instable joints + growing child = big problems. His feet decided to turn over so that he was walking on the inside ankle bones. He is completely flat footed to boot. So we took him to get foot orthotics to try to straighten out his feet. He was able to get away with a custom insert in one shoe- but he has a hard brace that comes up to his ankle in the other. It has some sort of foamy thingie (I'm sure that is the technical term!) inside the brace on the arch, and it chipped off last week. It is bugging him, wearing a blister on the inside of his foot. So Monday we are getting it fixed, YAY! He has been doing so much better in all aspects lately. His Tourettes ticks have been under control and his moods have been stable. He's been doing great in school and he has the best teacher on earth. I swear that woman is a saint. I really thank God that we ended up here in Petersburg. The schools are fabulous, and we have had nothing but the best teachers and principals. We really couldn't ask for better anywhere.
Hunter hasn't been doing as well. His psychiatrist had a baby, so she has been out on maternity leave and won't be back until May. The other doctors in the practice just aren't doing that great of a job picking up her patient load so everything has been a fight. I thought maybe his lithium level was too high. When it's too high, it makes him have a urgency to urinate comparable to a UTI, and makes it impossible to make it to the bathroom. Dakota has also had that problem in the past with Lithium. Usually it comes out through testing the blood level is too high and we reduce it and that symptom subsides. This time though, Hunter's moods have been all over the place, he has been very emotional and he is having the peeing issue. The problem is that his lithium level is okay. He seems very stressed out and I'm just not really sure why. I'm hoping that he talks to me more this weekend and we can get to the bottom of it. I made him an appointment to see one of the substitute psychs to see what is going on. I also made him an appointment to see his dermatologist. He is having major problems with his psoriasis. He is going through a growth spurt at the moment and his voice is changing. It's possible that it is hormones just making all kinds of issues with him. Being a teenager is hard. He did have fun last week though- he went to his first dance! He had a good time. He is starting to enjoy Jr. High.
I also made an appointment for Tristan to see the orthodontist. He saw a new dentist last week, and is going back next week for some fillings. She thinks that he is a "tongue thruster" and that is what is inhibiting his speech. She gave a referral to the orthodontist to get some sort of appliance that will retrain his tongue not to push off against his front teeth. I talked to his speech therapist and she is not sure that he does thrust his tongue, but I'm watching him this week when he eats and drinks to see if I can see him doing it. Wouldn't that be nice if something like a dental appliance could help what we have worked on in two years of speech therapy? I'm anxious to hear what they have to say.
I also called Giovanna's pediatrician. She went into their office last week to have her urine tested for a UTI. The test came out okay, but she is still complaining. They said to treat her for a diaper rash until Monday, and if she still had issues then to call back. That would be okay, but she doesn't have a diaper rash. I think after four kids I know what a diaper rash looks like. LOL! While I was making phone calls, she swallowed a dime. SO- I had to call them again. Boy did I feel like a fool! So I get to be on poop-patrol for the next couple of days making sure the dime comes out the other end. If not, Monday we will have to get xrays. Yay. :P I also called both of our insurance companies begging for them to cover a dentist for her. I managed to find a dentist that will see her, and I'm praying that they are the right route to go. They don't let parents into the treatment rooms, and I'm not sure I'm real comfortable with that. She has been very independant and outgoing lately, so maybe it will be fine. I'm hoping so, because if not the next option is driving to Missouri, and I'm not thinking that would be pleasant. She has several cavities again, and is having some tooth pain. I swear this poor kid has gone through more dental issues that the rest of us put together. I do wonder if it's an EDS thing. When her teeth came in they were just like chalk, they just flaked off, it was awful. I hope she doesn't have to have any more extractions.
I also got the vacuum from hell sent back to Dyson, that was four phonecalls yesterday right there. It took me two to get them to tell me what they wanted me to send, then one from UPS to tell me they were coming and another to Dyson to give them the tracking number so they could finally send me out one that isn't a lemon. This one has made 5 round trips to New York for service. Everytime I get it back it breaks two weeks later. It's been a total nightmare, especially since it takes weeks to get it back, and no vacuum cleaner in a home with two messy adults and four children, is NOT good. I pray this new one actually works, and keeps working!
So that is what I accomplished yesterday. I also went to the store, took the kids for a walk to the park, and worked on the teapot from hell.
The teapot from hell is a project I started in November,
and I've been working on it since. It should never have taken this long, but I'm the worlds worst procrastinator. I have had trouble with this thing all the way, but I really want to finish it and I'm determined. I need to finish this up so I can get to Giovanna's Easter dress. I'm praying to finish it up this weekend. Of course I said that last weekend too. Hence it's the teapot from hell.
So, I went to bed exhausted last night, but with a huge sense of accomplishment. Today I'm going to clean and hopefully get outside again with the children. Hopefully there won't be any surprises out there today! Yesterday Hunter came and told me there was something out back he had to show me, and you wouldn't believe! In our backyard, right under my bedroom window, there was a pair of boxer shorts and 3 used condoms. GROSS! I haven't touched them yet but I'm going to have to today if the kids are going to be outside. Don't worry, I have gloves. I truly want to hurl just thinking about it. What the hell must have happened out there?
The weather has been just beautiful and it's really done wonders for my mood. I'm definitely going to work on the teapot from hell today- maybe outside. Aaron is working overtime today, even though he's in pain. He is such an amazing man. I know he's exhausted both mentally and physically. I wasn't much comfort to him last night either, I was so past the point after my day. I'm hoping we can have some peaceful time to reconnect this evening when the day winds down. I'm ready for a relaxing, low key weekend, and I think we've earned it!
I tried to get Aaron and Hunter into the rheumatologist that diagnosed me, but he was not taking any patients. I begged and pleaded, but in the end they consulted with the other 3 doctors in the practice and one came forward and said he knew the diagnostic criteria for EDS. He even thinks he can follow them if they are diagnosed, which is more than the doctor I, Dakota and Tristan were diagnosed by could do. So I hope we won't be disappointed there.
Aaron is doing quite well on his pain meds from the orthopedic doctor. He seems to be dealing with the pain much better. His MRI is scheduled for March 13th, I'm anxious to see what the results will show.
I finally found a family practice doctor in a new clinic to follow Aaron and I! I have high hopes for this one. The receptionist was so nice on the phone, the place sounds SO much nicer than what we have been dealing with, and one of the doctors there is a close family friend of ours (his son was the best man at our wedding!) I'm so excited. He took us even knowing about the Ehlers Danlos, which is major- last time I tried to get a new doctor, they said no. They didn't have the time to deal with a patient with EDS.
Dakota has an appointment to get his brace fixed. Dakota has been having a bad year with his EDS. He gained a lot of weight from the medicine that he was on last year for his bipolar disorder. Weight + instable joints + growing child = big problems. His feet decided to turn over so that he was walking on the inside ankle bones. He is completely flat footed to boot. So we took him to get foot orthotics to try to straighten out his feet. He was able to get away with a custom insert in one shoe- but he has a hard brace that comes up to his ankle in the other. It has some sort of foamy thingie (I'm sure that is the technical term!) inside the brace on the arch, and it chipped off last week. It is bugging him, wearing a blister on the inside of his foot. So Monday we are getting it fixed, YAY! He has been doing so much better in all aspects lately. His Tourettes ticks have been under control and his moods have been stable. He's been doing great in school and he has the best teacher on earth. I swear that woman is a saint. I really thank God that we ended up here in Petersburg. The schools are fabulous, and we have had nothing but the best teachers and principals. We really couldn't ask for better anywhere.
Hunter hasn't been doing as well. His psychiatrist had a baby, so she has been out on maternity leave and won't be back until May. The other doctors in the practice just aren't doing that great of a job picking up her patient load so everything has been a fight. I thought maybe his lithium level was too high. When it's too high, it makes him have a urgency to urinate comparable to a UTI, and makes it impossible to make it to the bathroom. Dakota has also had that problem in the past with Lithium. Usually it comes out through testing the blood level is too high and we reduce it and that symptom subsides. This time though, Hunter's moods have been all over the place, he has been very emotional and he is having the peeing issue. The problem is that his lithium level is okay. He seems very stressed out and I'm just not really sure why. I'm hoping that he talks to me more this weekend and we can get to the bottom of it. I made him an appointment to see one of the substitute psychs to see what is going on. I also made him an appointment to see his dermatologist. He is having major problems with his psoriasis. He is going through a growth spurt at the moment and his voice is changing. It's possible that it is hormones just making all kinds of issues with him. Being a teenager is hard. He did have fun last week though- he went to his first dance! He had a good time. He is starting to enjoy Jr. High.
I also made an appointment for Tristan to see the orthodontist. He saw a new dentist last week, and is going back next week for some fillings. She thinks that he is a "tongue thruster" and that is what is inhibiting his speech. She gave a referral to the orthodontist to get some sort of appliance that will retrain his tongue not to push off against his front teeth. I talked to his speech therapist and she is not sure that he does thrust his tongue, but I'm watching him this week when he eats and drinks to see if I can see him doing it. Wouldn't that be nice if something like a dental appliance could help what we have worked on in two years of speech therapy? I'm anxious to hear what they have to say.
I also called Giovanna's pediatrician. She went into their office last week to have her urine tested for a UTI. The test came out okay, but she is still complaining. They said to treat her for a diaper rash until Monday, and if she still had issues then to call back. That would be okay, but she doesn't have a diaper rash. I think after four kids I know what a diaper rash looks like. LOL! While I was making phone calls, she swallowed a dime. SO- I had to call them again. Boy did I feel like a fool! So I get to be on poop-patrol for the next couple of days making sure the dime comes out the other end. If not, Monday we will have to get xrays. Yay. :P I also called both of our insurance companies begging for them to cover a dentist for her. I managed to find a dentist that will see her, and I'm praying that they are the right route to go. They don't let parents into the treatment rooms, and I'm not sure I'm real comfortable with that. She has been very independant and outgoing lately, so maybe it will be fine. I'm hoping so, because if not the next option is driving to Missouri, and I'm not thinking that would be pleasant. She has several cavities again, and is having some tooth pain. I swear this poor kid has gone through more dental issues that the rest of us put together. I do wonder if it's an EDS thing. When her teeth came in they were just like chalk, they just flaked off, it was awful. I hope she doesn't have to have any more extractions.
I also got the vacuum from hell sent back to Dyson, that was four phonecalls yesterday right there. It took me two to get them to tell me what they wanted me to send, then one from UPS to tell me they were coming and another to Dyson to give them the tracking number so they could finally send me out one that isn't a lemon. This one has made 5 round trips to New York for service. Everytime I get it back it breaks two weeks later. It's been a total nightmare, especially since it takes weeks to get it back, and no vacuum cleaner in a home with two messy adults and four children, is NOT good. I pray this new one actually works, and keeps working!
So that is what I accomplished yesterday. I also went to the store, took the kids for a walk to the park, and worked on the teapot from hell.
The teapot from hell is a project I started in November,
and I've been working on it since. It should never have taken this long, but I'm the worlds worst procrastinator. I have had trouble with this thing all the way, but I really want to finish it and I'm determined. I need to finish this up so I can get to Giovanna's Easter dress. I'm praying to finish it up this weekend. Of course I said that last weekend too. Hence it's the teapot from hell.
So, I went to bed exhausted last night, but with a huge sense of accomplishment. Today I'm going to clean and hopefully get outside again with the children. Hopefully there won't be any surprises out there today! Yesterday Hunter came and told me there was something out back he had to show me, and you wouldn't believe! In our backyard, right under my bedroom window, there was a pair of boxer shorts and 3 used condoms. GROSS! I haven't touched them yet but I'm going to have to today if the kids are going to be outside. Don't worry, I have gloves. I truly want to hurl just thinking about it. What the hell must have happened out there?
The weather has been just beautiful and it's really done wonders for my mood. I'm definitely going to work on the teapot from hell today- maybe outside. Aaron is working overtime today, even though he's in pain. He is such an amazing man. I know he's exhausted both mentally and physically. I wasn't much comfort to him last night either, I was so past the point after my day. I'm hoping we can have some peaceful time to reconnect this evening when the day winds down. I'm ready for a relaxing, low key weekend, and I think we've earned it!
Friday, March 6, 2009
And the other shoe.... drops.
You know, when I started this blog, it was with the intention of showing that my life is so much more than just sickness and pain. And it is, it really is. But these last few days since I've started this blog haven't been! It seems that I've spent my entire last three days making appointments, dealing with pain and injuries, and dragging my painful butt around to doctors appointments. So if you are reading this, it will get better, it always does. But this week, well it's been hell.
I had a conversation with Aaron last night that still has me reeling. It's really too much for my brain to handle all at once, there are so many thoughts going through my head it's making me exhausted.
As I mentioned yesterday, Aaron had his orthopedic appointment yesterday for his shoulder. So last night after the kids went to bed he started talking to me about the little details. He told the doctor that he just couldn't deal with this shoulder, that he didn't have time to be crippled up by it because he had a EDS challenged wife and children at home to take care of. She knew all about Ehlers Danlos (wow! How far we've come, huh!) she continued checking his joints and the conversation went on. Then she came back and said to him, "So when were you diagnosed with Ehlers Danlos?" [Aaron] "No, *I* don't have Ehlers Danlos, my wife does". [Doctor] "Oh! Really? Because your shoulder blades shouldn't wing out- *demonstrates* [Doctor] "And your thumbs shouldn't pull up under your shoulder blades like this"- *demonstrates* "And your thumbs shouldn't pull down to your forearms like this" *demonstrates*
She also demonstrated to him what the normal range of motion for fingers was, and how his go way farther back. She told him all these are Ehlers Danlos traits. Then she said, "Well, back to your shoulder....."
As he's telling me this, he is demonstating to me. I'm dumbstruck. He is "circus tricking" like an EDSer for sure.
Oh. My. God. How did this happen? I remember back to dating, and tell him that we've discussed this possibility in the past. I have told him before that he is the only guy I've dated whose skin felt "right" to me. It feels velvety like mine not "sticky" like normal skin. It was one of the things that attracted me to him. Did I unintentionally seek out another EDSer? What are the odds I married someone else with my genetic disorder? What does that mean for my children? Does that mean if we both do have it that their 50% chance of inheriting the gene becomes 100%?
Then we got into a huge argument. I said you need to see the doctor that diagnosed us. He said why? I don't need to be diagnosed. I disagree. I want to KNOW. He doesn't need or want a diagnosis. I think it's important- what does this mean for the children? If he does have EDS then he should have his heart monitored too right? What does this mean for his shoulder? We got into it and I was so frustrated with him. I need to KNOW. He worries about how it would effect his insurance, etc.
I'm still reeling this morning. Sleep didn't come easily, and I feel like I've woken up to a nightmare. How is this possible? I did tell him that I watched a video recently that showed a wife and husband both with EDS. I wonder how they ended up together? Here is that video.
I had a conversation with Aaron last night that still has me reeling. It's really too much for my brain to handle all at once, there are so many thoughts going through my head it's making me exhausted.
As I mentioned yesterday, Aaron had his orthopedic appointment yesterday for his shoulder. So last night after the kids went to bed he started talking to me about the little details. He told the doctor that he just couldn't deal with this shoulder, that he didn't have time to be crippled up by it because he had a EDS challenged wife and children at home to take care of. She knew all about Ehlers Danlos (wow! How far we've come, huh!) she continued checking his joints and the conversation went on. Then she came back and said to him, "So when were you diagnosed with Ehlers Danlos?" [Aaron] "No, *I* don't have Ehlers Danlos, my wife does". [Doctor] "Oh! Really? Because your shoulder blades shouldn't wing out- *demonstrates* [Doctor] "And your thumbs shouldn't pull up under your shoulder blades like this"- *demonstrates* "And your thumbs shouldn't pull down to your forearms like this" *demonstrates*
She also demonstrated to him what the normal range of motion for fingers was, and how his go way farther back. She told him all these are Ehlers Danlos traits. Then she said, "Well, back to your shoulder....."
As he's telling me this, he is demonstating to me. I'm dumbstruck. He is "circus tricking" like an EDSer for sure.
Oh. My. God. How did this happen? I remember back to dating, and tell him that we've discussed this possibility in the past. I have told him before that he is the only guy I've dated whose skin felt "right" to me. It feels velvety like mine not "sticky" like normal skin. It was one of the things that attracted me to him. Did I unintentionally seek out another EDSer? What are the odds I married someone else with my genetic disorder? What does that mean for my children? Does that mean if we both do have it that their 50% chance of inheriting the gene becomes 100%?
Then we got into a huge argument. I said you need to see the doctor that diagnosed us. He said why? I don't need to be diagnosed. I disagree. I want to KNOW. He doesn't need or want a diagnosis. I think it's important- what does this mean for the children? If he does have EDS then he should have his heart monitored too right? What does this mean for his shoulder? We got into it and I was so frustrated with him. I need to KNOW. He worries about how it would effect his insurance, etc.
I'm still reeling this morning. Sleep didn't come easily, and I feel like I've woken up to a nightmare. How is this possible? I did tell him that I watched a video recently that showed a wife and husband both with EDS. I wonder how they ended up together? Here is that video.
Thursday, March 5, 2009
Loooong Day.
It's been a very long day, and I'm really tired. Today was Aaron's appointment with the orthopedic doctor, so I spent most of the day worrying about how that was going to go. (Backstory) Aaron has been having issues with his left shoulder for about a year. At one point we ended up in the ER thinking he was having a heart attack. Our good-for-nothing-primary care physician (heretoforward known as GFNPCP) said there was nothing wrong. Great. So he has been trying to exist with the pain for some time now. Then, Valentines Day he took a fall down the stairs, hitting that shoulder and putting him in another whole dimension of hurt. It was subluxing, and dislocated/relocated twice. Then he fell UP the stairs, and hit it again. Good grief. So the last couple of weeks have been miserable.
So today the ortho doc set him up for an appointment for an MRI and gave him some new meds to try. The MRI is scheduled for March 13th, then we will know if he needs surgery. I'm hoping these new meds do the trick too- I'm not used to being the one watching someone in pain, and I don't like it! It makes me feel so helpless.
So today the ortho doc set him up for an appointment for an MRI and gave him some new meds to try. The MRI is scheduled for March 13th, then we will know if he needs surgery. I'm hoping these new meds do the trick too- I'm not used to being the one watching someone in pain, and I don't like it! It makes me feel so helpless.
Wednesday, March 4, 2009
Day One.
I decided that I'm going to start blogging. There is so much I want to share day to day or even just remember that it seems this is the logical step. For the last few years I have been spending my downtime on message boards, keeping up with people who I will likely never see in real life, nor will they ever meet me. I decided that this is putting out a lot of energy into something that will never really pay off. It makes more sense to invest that love and energy into real life people that I have lost track of, or friends I haven't connected with on a regular basis.
So I started Facebook-ing. I love Facebook, but I think blogging will be a nice addition to that. Something that came about with joining Facebook was my reconnection with the Ehlers Danlos Community. When I was diagnosed, I embraced the EDS community and joined many groups, listened to many other EDSers day to day struggles, and even quarrels within the community, I was absorbed. My diagnosis was so fresh, and I guess I was wallowing in it. I hit a very dark point in my life soon after. On the way back up, one thing that I did was distance myself from the rest of the EDS community. I haven't talked to another EDSer for years. I needed that, because I didn't want to think or concentrate on my disorder. I thought I needed to overcome it by ignoring the fact it was there. I mean, I knew it was there- the pain would never let me forget that fact, but I needed to focus on my goals and not on my disability.
Now however, I feel stronger. I don't feel sorry for myself, I'm not wallowing in self pity, mourning the perfect future I will never have. I have children that also have EDS, and I need to advocate for the cause, for all of us.
I've been very sensitive to people thinking that I was "faking it". That there was nothing wrong with me, that I was just lazy, or something like that. People just don't understand this disease. They don't understand how one day you can need to be in a brace and the next day not need it anymore. Or that you might need a wheelchair when you go somewhere but you might not need it the whole time. They tell me that you don't look "sick", you are too pretty to be sick or disabled, or that disabled people don't have children. Then you get caught up in that- I don't want to BE disabled. But I don't want people to think I'm hamming it up either- and I want to be able to use the aides (braces, wheelchair) I need without feeling self conscious. I don't want to LOOK sick. I never have. I want to be ME. Whatever that is.
So that is my goal. I'm going to find a new doctor. My doctor has been horrid to me for years, but I have just taken the bumps and moved on and tried to not deal with him. Unfortunately, that's not really taking care of myself either- because in doing that I have been skipping a lot of important tests for years that are really important for my disease. I'm going to take better care of myself, by starting with a doctor that I respect and respects and cares about my health.
I've started working out and trying to get serious about losing weight. The weight I put on when I was pregnant with Giovanna just never came off and I can't carry around extra weight with my loose joints. It's really made it ten times harder for me to get around. I'm trying to build up my muscles to support my joints better. I want to look and feel hot again. I want my body back. I miss it.
My new years resolution this year was to take better care of myself. I have been putting everyone else first for so long, that I have just run myself into the ground. What I have found is that by putting myself first I have more to give to everyone else. That old addage is really true. It works. I have been feeling so much better in fact, that I have been thinking about what makes me truly happy. I have decided to go back to school.
Family has been encouraging me for years to go on SS disability. I did file, but I was denied right off the bat (which is expected, especially with a rare disease) and well, I just didn't really fight it. It's really been a problem between Aaron and I, because we really needed the money. I just felt like going on disability was giving up. I want to be something. I want to be proud of myself. I want to have an income, I want to be the best at something. I want something to look forward to, to work towards, to aspire to. I need to have excitement in my life.
So, I've decided I want to go to Esthetology school. I started when I was 17, and dropped out because of a psycho stalker boyfriend and a totally depressive breakdown. I have kicked myself over and over for years for not finishing, but I remind myself, if I hadn't made the decisions I did, I wouldn't have ended up where I am. Which, is a pretty good place. I married the love of my life, and have NO regrets there. And of course gave birth to the best four children in the world. I couldn't have done better there. I have gotten to stay home for the most part and be with them, which I wouldn't change for the world either. I figure I will start my career when Giovanna starts kindergarten. I'm hoping to do claim processing from home starting later this year if everything works out. Then I could have an income and still be here with her.
Well, that's all for today. I have to go workout (Yoga Booty Ballet today- Advanced Fat Burning) clean, make phonecalls, and run to the store, pick up the boys and do a ridiculous amount of laundry and dishes. Oh and I'm going to try to get a decent picture of myself that I can stand for here and facebook, do my and Gia's nails, and hopefully finish off the play teaset project that I've been working on for an insane amount of time so I can get started on Giovanna's Easter dress. Then make dinner, counsel children, pick Aaron up off the floor after work and get everyone to bed. Shewww. I'm already tired! LOL
So I started Facebook-ing. I love Facebook, but I think blogging will be a nice addition to that. Something that came about with joining Facebook was my reconnection with the Ehlers Danlos Community. When I was diagnosed, I embraced the EDS community and joined many groups, listened to many other EDSers day to day struggles, and even quarrels within the community, I was absorbed. My diagnosis was so fresh, and I guess I was wallowing in it. I hit a very dark point in my life soon after. On the way back up, one thing that I did was distance myself from the rest of the EDS community. I haven't talked to another EDSer for years. I needed that, because I didn't want to think or concentrate on my disorder. I thought I needed to overcome it by ignoring the fact it was there. I mean, I knew it was there- the pain would never let me forget that fact, but I needed to focus on my goals and not on my disability.
Now however, I feel stronger. I don't feel sorry for myself, I'm not wallowing in self pity, mourning the perfect future I will never have. I have children that also have EDS, and I need to advocate for the cause, for all of us.
I've been very sensitive to people thinking that I was "faking it". That there was nothing wrong with me, that I was just lazy, or something like that. People just don't understand this disease. They don't understand how one day you can need to be in a brace and the next day not need it anymore. Or that you might need a wheelchair when you go somewhere but you might not need it the whole time. They tell me that you don't look "sick", you are too pretty to be sick or disabled, or that disabled people don't have children. Then you get caught up in that- I don't want to BE disabled. But I don't want people to think I'm hamming it up either- and I want to be able to use the aides (braces, wheelchair) I need without feeling self conscious. I don't want to LOOK sick. I never have. I want to be ME. Whatever that is.
So that is my goal. I'm going to find a new doctor. My doctor has been horrid to me for years, but I have just taken the bumps and moved on and tried to not deal with him. Unfortunately, that's not really taking care of myself either- because in doing that I have been skipping a lot of important tests for years that are really important for my disease. I'm going to take better care of myself, by starting with a doctor that I respect and respects and cares about my health.
I've started working out and trying to get serious about losing weight. The weight I put on when I was pregnant with Giovanna just never came off and I can't carry around extra weight with my loose joints. It's really made it ten times harder for me to get around. I'm trying to build up my muscles to support my joints better. I want to look and feel hot again. I want my body back. I miss it.
My new years resolution this year was to take better care of myself. I have been putting everyone else first for so long, that I have just run myself into the ground. What I have found is that by putting myself first I have more to give to everyone else. That old addage is really true. It works. I have been feeling so much better in fact, that I have been thinking about what makes me truly happy. I have decided to go back to school.
Family has been encouraging me for years to go on SS disability. I did file, but I was denied right off the bat (which is expected, especially with a rare disease) and well, I just didn't really fight it. It's really been a problem between Aaron and I, because we really needed the money. I just felt like going on disability was giving up. I want to be something. I want to be proud of myself. I want to have an income, I want to be the best at something. I want something to look forward to, to work towards, to aspire to. I need to have excitement in my life.
So, I've decided I want to go to Esthetology school. I started when I was 17, and dropped out because of a psycho stalker boyfriend and a totally depressive breakdown. I have kicked myself over and over for years for not finishing, but I remind myself, if I hadn't made the decisions I did, I wouldn't have ended up where I am. Which, is a pretty good place. I married the love of my life, and have NO regrets there. And of course gave birth to the best four children in the world. I couldn't have done better there. I have gotten to stay home for the most part and be with them, which I wouldn't change for the world either. I figure I will start my career when Giovanna starts kindergarten. I'm hoping to do claim processing from home starting later this year if everything works out. Then I could have an income and still be here with her.
Well, that's all for today. I have to go workout (Yoga Booty Ballet today- Advanced Fat Burning) clean, make phonecalls, and run to the store, pick up the boys and do a ridiculous amount of laundry and dishes. Oh and I'm going to try to get a decent picture of myself that I can stand for here and facebook, do my and Gia's nails, and hopefully finish off the play teaset project that I've been working on for an insane amount of time so I can get started on Giovanna's Easter dress. Then make dinner, counsel children, pick Aaron up off the floor after work and get everyone to bed. Shewww. I'm already tired! LOL
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