Just wanted those of you that follow this forum to know! Her IgA is much higher, and we have good hopes!
I'm worried about her future, as far as insurance goes - what happens to her once she is an adult.............. that is what scares me the most. We can support he up until so many years if she stays in college, and then she's on her own.
She will need these treatments for the rest of her life. She's also ADHD, and as I see it using that it as an excuse now to not do well in school. I know her better, and she needs to. Please email words of encouragement to:
katie20x@yahoo.com
she needs them! :) she's my baby! (my own)
Katie is doing MUCH better!
Oh, congratulations! I'm so glad to hear she's doing better.
For health insurance, this is scary, but she will probably need to always have work that provides it. I don't know another way around it, and working with state or federal health insurance will probably be a quagmire. Then she can provide for her own retirement from her work. If she does get sick after working, there is a bit of a safety net there in the form of disability insurance. (Still wrestling with that one myself, so don't know how full of holes it is on the federal level, but I did get state disability benefits after I became unable to work.)
I know lots of adults who have been diagnosed with ADHD and similar syndromes and they can still be functional. I was diagnosed with hyperactivity when I was a child (back before the current nomenclature), based on an EEG reading I had for another issue. It never seemed to get in the way of my studies so we didn't treat it, and I was lucky enough to find a style of work that suited my proclivities rather than worked against them; I loved interrupt-driven problem-solving work where I had to learn and research a lot. There are lots of jobs that need this sort of outlook, that fit a lot of different passions and interests! So it can be a strength if it can be harnessed properly. It could possibly work really well for her in academia if she decided to go there, too; I was a system/network engineer before I got hit with the fatigue issues. If she wants to be a people person, artist, designer, chef, scientist, doctor... there are niches in all of these fields that can take someone with that kind of mindset.
There are also some good choices for treatment now, which seem to really help people focus. That makes them more like the normal run of people, which can also be a good thing; it's less challenging to focus on things they'd find boring without the medication, though they might lose some of the hyperfocus that can make them good researchers and context-switchers.
The main thing seems to be either having proper treatment or strategies to deal with doing the "boring" things, and with letting go of obsessions on things which are not helpful or are overdoing it. You can do that without medicine or with it, but it's necessary either way. I always did it by trying to figure out how to turn boring things into being interesting again. If all else failed, I just plain force myself do the things I can't focus on; I can do them even if I don't want to. Everyone has stuff they have to do even if they don't want to, so it's a useful skill for anyone.
I see that now but didn't always when I was in school; school was fun but didn't seem very important to me. It really wasn't until after I had been working that I came to truly value my education. School became *much* easier once I'd done project work "for real" and figured out how to get the most out of what limited time I had for learning.
We finally figured out that ADHD is one of my problems. I too have been fortunate to have found jobs that make use of my abilites/quirks. 3 of my children are also ADHD and so are some of my grandchildren. Others are just ADD and are totally different. You have to almost light a fire under them to get them to move or make decisions but are very intellegent. Most ADD/ADHD people develop Fibromyalgia, Dislexia, Chronic Fatigue Syndrome and some related disorders at some time in their lives. I've had Fibro since I was 5.
I didn't know that, leaflady. I was diagnosed with fibromyalgia a year or so ago. I don't know if the diagnosis for hyperactivity I got back then was really conclusive, either, since any other doctor I've talked to said you can't diagnose it from an EEG, and we just left it untreated -- since it was more a "quirk" than a "problem" there didn't seem much reason to fuss over it.
I'm sorry you've had fibro so long. :( I know that people with it tend to get a lot of other autoimmune issues, but I didn't know about the link with ADD/ADHD.
Huh? I've never heard of an actual connection between ADHD and Immune Deficiency. If there is one, please share available links, if you have them.
Let me tell about my husband and ADHD
His entire childhood was a mess. His parents divorced when he was quite young (4), his mother, an educated woman, didn't want him so he was forced to live with his alcoholic father.
He became so unruly and in so much trouble so often, he was put into Southern California Military Academy (at G'parents expense). It didn't make a difference and Sean, just went from bad to worse. Trouble at school, the law, drugs, and finally kicked out of the Marines for possession of methamphetemines.
I met him at age 24. He wouldn't see stop signs, had absolutely no patience with ANYTHING. His dysfunctional upbringing was what others always blamed for his behavior,
But I noticed he couldn't stay in a chair very long. He paced the floor when he talked on the phone. He couldn't seem to follow directions. He was horribly forgetful and easily confused, and then got angry if anyone said anything about how he had screwed up AGAIN. I wondered, what had I done by getting involved with him. But under it all I saw a good heart- and a soul wanting to be a better man.
I started researching psychiatric disorders. When I came across ADHD, it was as if the old proverbial light went off. To make a long story short, once Sean had a diagnosis, understood what his problems had always REALLY been, and got the proper meds, the changes were incredible.
He has held down a well paying job for the last 7 years. His job is pretty fast paced and has him going in all different directions. That of course suits him wonderfully. We now have a beautiful daughter,to whom he is an excellent, and doting father. We have a beautiful home and I haven't had to work in years.
My husband was prison bound when I met him, and that isn't an exaggeration. But finding out he had ADHD and dealing with it turned his world around (and mine). He too has to force himself to stay focused on a task. He has had to work very hard on himself to achieve even the smallest degree of success. I think it helped that I had expectations of him, ADHD or not. I figured if I expected little, then little would be what I would get.
Help your daughter to be a little harder on herself. Set your expectations just slightly higher then at present, and build from there. It won't be easy. Having a sick child.....well I know I would want to be completely protective, but it won't help her when it comes time to function in the real world. She certainly will have limitations, but don't accept less then her full potential. She can do it!!!!
Wow, interesting reading, folks! and glad to hear your daughter is doing better!!!!!
Glenda, WOW. You really turned him around where a lot of people would have walked away. That is an amazing story.
Thank you Glenda. Your words have a powerful message to me. (and her father should see this too).
Now they've changed her meds again, and the combination of what she is on is really helping her behavior. They now also have her on an anti-depressant. I've never liked that sort of therapy, but she is really doing well on it. Also, her IgA level has increased and is getting closer and closer to an acceptable level after ever treatment (immune problem). Feel very bad for her that's she's been given such a hard road to hoe.
I was concerned about anti-depressant medication too. It didn't make since to me, but that is exactly what my husband takes and it made all the difference. It just seemed to balance his brain chemicals.
I looked at it this way.....If my husband or one of my children had diabetes and needed insulin shots to correct the imbalance of their own body there would be no question about whether they would use this form of therapy. If this works for Katie, be thankful there is something that can help, and don't let ANYONE make you feel you have been inadequate in anyway for using this kind of medication. I say that because I got put through the ringer by my husbands family (I guess they preferred him dysfunctional).
You are a remarkable person dealing with extraordinary circustances. When we have children, we expect to deal with the flu, the occasional cold, and the difficulties of potty training. You have had to deal with much more, so remember to give yourself some credit and take care of yourself Karrie!
My Best! GLenda
:)