Jean in Newcastle Posted February 14, 2013 Share Posted February 14, 2013 This probably fits better on the general ed. board but since I've heard that social groups are going to be activated sometime soon I'm going to put it on the board that I frequent most often. This board is for those of us with chronic illness or if we have a child with a chronic illness. My first question is: Just as an introduction, what is your chronic illness or difficulty? Link to comment Share on other sites More sharing options...
caroljenn Posted February 14, 2013 Share Posted February 14, 2013 Hi Jean, I'm joining! My daughter has Chronic Fatigue Syndrome. It affects everything in our lives. Scheduling issues more than anything, but also some brain-fog type issues and trying to work around those. That's the worst, besides the fact that she has no life compared to other teenagers and is not able to do 1/10 the things they can do. =( Link to comment Share on other sites More sharing options...
caroljenn Posted February 14, 2013 Share Posted February 14, 2013 Thsnk you Sadie, I hope you feel better. Link to comment Share on other sites More sharing options...
jillian Posted February 14, 2013 Share Posted February 14, 2013 I have fibromyalgia and dd has systemic juvenile arthritis. On mornings when we both are stiff and hurting it leads to a movie day for school instead of actual learning with our books. We watch Netflix or things we have recorded or YouTube stuff Link to comment Share on other sites More sharing options...
Orthodox6 Posted February 14, 2013 Share Posted February 14, 2013 [edit] I erased it. I had not even listed everything about myself, nor had I discussed my children's struggles. My subsequent thoughts do not apply to other people, just to myself. I live with all this permanently, and continue to develop coping methods. For me, better just to live and not to dwell on the myriad obstacles. I do think a sub-group such as this is a good idea, and has great potential to be an excellent vent/brainstorm/empathize place for people. All the best! Link to comment Share on other sites More sharing options...
jillian Posted February 14, 2013 Share Posted February 14, 2013 I have super bad insomnia too and I refuse to take anything like ambien or lunesta because I don't like the side effects. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 14, 2013 Author Share Posted February 14, 2013 I should introduce myself too. I have fibromyalgia. I've had it for over 20 years and thus all of my homeschooling journey. . Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 14, 2013 Author Share Posted February 14, 2013 How broadly is "chronic illness" defined? Learning disabilities, behavioural conditions, mental health conditions, and injury aftermath part of this? I'm going to feel ridiculous listing these (even though I have listed them before, in other message contexts): fibromyalgia. ADD/ADHD, mixed-type. Asperger's. 3" steel plate in left arm (part of dealing with a split-in-two ligament in wrist) resulting in pain and in suddenly dropping things without warning (even something so lightweight as a bottlecap). 8" steel rod in right leg, with side effect of permanent pain when walking and inability (from pain) to run, even in an emergency. Insomnia for thirty-eight years, treatment-resistant. Life is good, all things considered! (Not joking. I mean it.) I'll let you define chronic illness. This social group is for supporting those of us who have the extra challenge that working with illness has when homeschooling. Others can sympathize but often it takes those who can empathize to really help. Link to comment Share on other sites More sharing options...
KungFuPanda Posted February 14, 2013 Share Posted February 14, 2013 My son has Duchenne's muscular dystrophy. It can be tough to educate a child who is advancing emotionally and intellectually, but declining physically. We've spent the last year and a half learning to navigate our world with a wheelchair. Thankfully our area is more accessible than most. Link to comment Share on other sites More sharing options...
swellmomma Posted February 14, 2013 Share Posted February 14, 2013 Well I don't know if it counts as chronic yet since it is still fairly new, but it does effect us quite a bit. I have adrenal fatigue and pain associated with it. The dr said this fall that is what I likely have when the tests ruled out everything else but she knew my adrenals were messed up. So I have been working on healing from that since sept and still trying to homeschool and keep up with the kids activities etc for their sake. Link to comment Share on other sites More sharing options...
TravelingChris Posted February 14, 2013 Share Posted February 14, 2013 I am joining. I think we are poster children for chronic diseases here. First let me give mine= Rheumatoid Arthritis, Sjogren's Syndrome, B12 deficiency, Thyroid problem- not diagnosed yet though I have an enlarged thyroid plus nodules and am waiting for second ultrasound, Factor V Leiden and DVTs so now on lifelong coumadin, Asthma, allergies including to seven medications, limes, nickel, and various environmental such as pollen and mold, GERD, migraines, The daughter I am homeschooling still= Raynaud's Syndrome, loose joints, probably torn ACL-will be diagnosed in two more weeks, severe allergies- anaphalactic responses to citric acid and wasps, lesser to peanuts, fibromyalgia, probably adhd inattentive- but in stage of being diagnosed, dyslexic, exczema, formerly having the very rare Idiopathic Juvenile Osteoporosis, vit D deficiency, Depression, asthma Other daughter= homeschool graduate=seizures from unknown cause which are not being treated yet, Factor V Leiden, Neurally mediated hypotension, ADHD, PMDD, migraines The males in my family are relatively healthy= dh is very healthy, and ds has only one chronic condition that we know about. Link to comment Share on other sites More sharing options...
somo_chickenlady Posted February 14, 2013 Share Posted February 14, 2013 I have Addison's Disease, Rheumatoid Arthritis, and I also have Partial Complex seizures. Link to comment Share on other sites More sharing options...
Remudamom Posted February 14, 2013 Share Posted February 14, 2013 I was diagnosed with psoriatic arthritis when I was 25. I can't think of a joint it hasn't affected, including my jaw at times. It's under control now but for many years when the kids were young it was very painful. I'm not sure how I managed. We just stumbled along. Kids had to help a lot. Link to comment Share on other sites More sharing options...
elizabeth Posted February 14, 2013 Share Posted February 14, 2013 I have Rheumatoid Arthritis, Osteo arthritis and Fibromyalgia. All within the past 7 years. Today I was dx with erythema nodosum so I am having many tests including some quite lovely biopsies. Link to comment Share on other sites More sharing options...
Parrothead Posted February 14, 2013 Share Posted February 14, 2013 May I join? My list: Chronic sleep-onset insomnia ie-I often can't fall asleep. Restless leg syndrome- this is hereditary on my day's side and surprisingly not related to the insomnia. Does not really affect homeschooling Graves' disease Graves eye disease - doesn't really affect school Cold urticaria - heat related too, but cold is more of a problem here. Reflux disease - really does not affect my ability to homeschool. And there is one more. For the life of me I can't think of it right now. ETA: Oh, D'uh. The osteoarthritis in both hand and both knees. Link to comment Share on other sites More sharing options...
Mergath Posted February 14, 2013 Share Posted February 14, 2013 Hi! I'll join. We have a decent collection over here. I have temporal lobe photosensitive epilepsy, polycystic ovarian syndrome, and obsessive-compulsive disorder. The epilepsy is the most serious of the bunch- I have to completely avoid fluorescent lights, even the cfls, and CRT screens. More than about half an hour with either and I start having auras. The OCD is something I have to live with every minute of every day, meaning that I'm constantly on the verge of a panic attack. And the PCOS is only a pain if I have a cyst rupture, and then it is quite literally a pain. The kind that requires fun things like morphine or codeine. My dd has 16p11.2 deletion syndrome, meaning she's missing part of her sixteenth chromosome. Not technically a chronic illness, but she does have low muscle tone and speech articulation issues because of it. She's a little smarty though, dodged all the possible brain development issues, thank god. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 14, 2013 Author Share Posted February 14, 2013 May I say that while you are all welcome, I am so sorry that so many of us and our children suffer from chronic problems. Link to comment Share on other sites More sharing options...
Veritaserum Posted February 14, 2013 Share Posted February 14, 2013 I have Hashimoto's Thyroiditis (autoimmune thyroid disease). I was diagnosed a little over four years ago (after my fifth baby was born). I have had short stretches of time where I've felt pretty good. I have also had long stretches of time where I fell pretty lousy. I tend to have 1-2 good energy days per week (usually in a pattern of one good day followed by 2-3 bad ones). I stumble through the rest and completely crash on some days. Because I am a perfectionist and an overachiever, this illness has really frustrated me and I feel depressed about what I no longer can accomplish. Link to comment Share on other sites More sharing options...
Lisa in SC Posted February 14, 2013 Share Posted February 14, 2013 I have chronic fatigue syndrome, chronic migraines (somewhat receptive to meds, but I have some degree of true migraine daily), shoulder/neck problems, atypical meunière's (auto fill won't let me spell that correctly) disease (as in, it doesn't really fit the symptoms but it's the best diagnosis the doctors can give), and chronic anemia. I also have OCD, but it doesn't affect homeschooling. Oh, and this is not a disorder, but my oldest is unexpectedly pregnant, so that's adding stress this year. Thankfully, dh, who currently works and lives out of town 5 days a week is transferring back here by the end of March, so that will help so much. I'm thrilled we won't be moving as was originally planned. Of course, his dad will be coming back too which adds stress, but you've got to take the good and make the best of the rest, right? Goodness, I sound like a mess, don't I? I'm actually pretty thankful most of the time. Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 14, 2013 Share Posted February 14, 2013 I have inflammatory polyarthritis and Hashimoto's. Two of my kids have asthma and allergies severe enough to affect daily life. They are both 2e as well. Link to comment Share on other sites More sharing options...
Hypatia. Posted February 14, 2013 Share Posted February 14, 2013 I'll join in. I have occipital neuralgia and chronic daily migraines. When not pregnant and up to date on my meds and injections the migraines get down to about 3x a week but that still makes things difficult. I also have an essential tremor but other than affecting my handwriting and (very low) art ability, it luckily doesn't cause many problems with homeschooling. So far DD1 also has migraines, the others have either escaped them (DS1) or are too young to tell. I've had migraines since I was very young, as long as I remember. I hate seeing that I've passed it on to DD1. Link to comment Share on other sites More sharing options...
eight_gregorys Posted February 14, 2013 Share Posted February 14, 2013 I have posted a few times about my chronic illnesses. It is very tough at times to homeschool 6 and deal with chronic illnesses. My diagnosis are: Systemic Lupus Lupus Nephritis Rheumatoid Arthritis Hashimoto's Thyroiditis Fibromyalgia Migraines Depression My oldest daughter was just diagnosed Hashimoto's also. The biggest problem I have in homeschooling, and life in general, are fatigue and pain. What are your biggest, daily struggles? Link to comment Share on other sites More sharing options...
shanvan Posted February 14, 2013 Share Posted February 14, 2013 I saw this thread last night, but I think I've been resisting b/c I don't want to think about chronic illnesses. I read through so far and just want to give :grouphug: to all. I agree, biopsies stink. My ticket to get in this club is fibromyalgia, insomnia at times, hypothyroidism with thyroid nodules--one has just increased in flow, so they are watching it and I may need another biopsy. I function fairly well, but like another poster said, my perfectionistic tendencies really get me down at times b/c of comparing to all I was once able to accomplish by pushing myself. And I get very frustrated with the brain fog. Sometimes I feel like a shadow of my former self. Since developing fibro I've had increased anxiety, which I find very annoying. It almost prevents me from doing some things, but I won't let it. Ds also has some anxiety and Dd most likely has ADD though she has not been evaluated and I am not sure I want to have her evaluated. Overall, we are healthy. The biggest problem here is that I am tired and my activity is somewhat limited by fatigue and pain. Link to comment Share on other sites More sharing options...
somo_chickenlady Posted February 14, 2013 Share Posted February 14, 2013 I forgot about DS...not an illness but he is deaf in his right ear. He also has mild Aspergers. Link to comment Share on other sites More sharing options...
Spryte Posted February 14, 2013 Share Posted February 14, 2013 So nice to see we're not alone. Here's a smattering of what's listed on my chart: Addison's Disease (adrenal insufficiency); Hashimoto's Thyroiditis; Migraines; Fibromyalgia; Chronic Fatigue; PCOS; and various chronic infections. And there is one more. For the life of me I can't think of it right now. Ditto. There is more, but I honestly can't think of it all. ETA: POTS. How could I forget POTS?? Link to comment Share on other sites More sharing options...
Spryte Posted February 14, 2013 Share Posted February 14, 2013 Oops, I didn't list DS: asthma; multiple LTFA (life threatening food allergies). Link to comment Share on other sites More sharing options...
somo_chickenlady Posted February 14, 2013 Share Posted February 14, 2013 Another one with Adfison's Disease! How badly does it affect your day to day life? Link to comment Share on other sites More sharing options...
Parrothead Posted February 14, 2013 Share Posted February 14, 2013 So nice to see we're not alone. Here's a smattering of what's listed on my chart: Addison's Disease (adrenal insufficiency); Hashimoto's Thyroiditis; Migraines; Fibromyalgia; Chronic Fatigue; PCOS; and various chronic infections. Ditto. There is more, but I honestly can't think of it all. I did finally think of it, or to be more precise was rudely reminded of it, last night before I fell asleep. I've updated. Link to comment Share on other sites More sharing options...
serene Posted February 14, 2013 Share Posted February 14, 2013 I have multiple sclerosis. My youngest dd is dealing with something autoimmune related; we're still trying to figure it out. Pain and fatigue, with some brain fog, are our biggest obstacles most days. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 14, 2013 Author Share Posted February 14, 2013 Another one with Adfison's Disease! How badly does it affect your day to day life? I'm not bad enough to have full blown Addison's but I do have adrenal problems. Mine affects me only from time to time when I get these adrenal storms. Those are bad: I'm literally shaking from having a barrage of adrenaline that I can't turn off. I can't sleep. My heart is racing. Kind of ironic because most of the time I don't have enough adrenaline to then have times when the spigot is turned full bore when I don't want it to be. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 14, 2013 Author Share Posted February 14, 2013 What are your biggest, daily struggles? Having a to do list bigger than my energy level. Feeling like a failure because I can't homeschool the way that I really want to - again because of my energy level. Link to comment Share on other sites More sharing options...
Spryte Posted February 14, 2013 Share Posted February 14, 2013 Another one with Adfison's Disease! How badly does it affect your day to day life? It's hard to separate it from everything else, but I *think* it has a fairly profound effect daily. I literally will *not* wake up unless dragged from bed, since my adrenals are not doing what they should to wake me. Blech. DH finally figured out that he can shake me awake and give me the meds, then I'll wake up on my own in a bit. That was a tip from the doc. :) My biggest thing is figuring out when to stress dose. I don't want to overdo it, but then often don't take enough hydrocortisone (Cortef) when I need it. [sigh] It's a balancing act. And ... Without that afternoon dose of it, whew, I crash hard. I still often need a nap, despite it. Would love to hear how it affects others? I wonder if my meds just aren't adjusted right? Oh! And I will update. I have POTS, too. You know, the reason the yellow Wiggle stopped wiggling? For that, I take a beta blocker and increased salt/fluid. And often pass out at night - fun, fun! Link to comment Share on other sites More sharing options...
swellmomma Posted February 14, 2013 Share Posted February 14, 2013 I didn't list the kids issues because they are not illnesses (learning issues etc), though I guess techinically ds9's encopresis is an illness and is chronic. My biggest struggle is the pain I get when my stress goes too high. I get joint pain, chest pain etc and it stops me in my tracks and the needing to have constant caffiene to stay functional. Otherwise I can't teach, I can't drive because I fall asleep, etc just sheer exhaustion without it. WIth it,l I have enough of a stimulant running through me to get through the day but somedays are better than others. Then I have a bout of good energy and try to get too much done in that time to make up for what I couldn't do before (like renovations or deep cleaning) until I hit a wall and we start over again with drop dead exhaustion and pain. Link to comment Share on other sites More sharing options...
Molly Posted February 14, 2013 Share Posted February 14, 2013 I'm not sure I belong in here, but I was diagnosed with Fibromyalgia years ago, but have mostly kept it under control with diet. However, last year I ended up getting a pacemaker put in due to what they suspect is an autoimmune disease attacking my heart. I am due to see an immunologist in about ten days time, so hoping to find out what is going on as although I can get through each day, I am still dealing with restless sleeping, general weariness and some headache/migraine issues, so I don't think everything was resolved with the pacemaker, but one wonderful thing is that I am alive, something I thank God for everyday. Link to comment Share on other sites More sharing options...
Green Vixen Posted February 14, 2013 Share Posted February 14, 2013 Thanks Jean for starting this group! I've been sick my entire life and it was the reason I was homeschooled as a child. I was finally diagnosed with Chronic Fatigue Syndrome when I was 16 then Fibromyalgia at 21. After my twin pregnancy I started getting a lot of new/different symptoms. My Rheumy's can't seem to agree on a diagnosis but it seems to be some sort of RA/SLE combination. I also have Hypermobility Syndrome, migraines, asthma, allergies, insomnia, osteopenia, and I'm sure I'm forgetting something... Right now I am trying to find the right med combo for the RA/SLE issues. I'm on Plaquenil, Prednisone and Humira injections and am dealing with quite a few side-effects from them. My biggest issue is definitely the overwhelming fatigue. Some days we don't get much homeschooling done but luckily my kids are so little it works out. I'm hoping by the time their a little older I will be feeling better. I just want to add for those of you with onset insomnia I take 25mg of Seroquel and it has been a miracle drug for me. I tried EVERYTHING else and it is the only med that ever helped. I take it about 1 1/2 hours before I want to fall asleep and it works like a charm. Gentle hugs, Marisa Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 15, 2013 Author Share Posted February 15, 2013 How did your day go today? I got some extra rest today which was unusual and very nice. And my kids and dh are taking care of dinner! I'm achy etc. but it is what I call my "dull roar" state which I can ignore to some extent. Link to comment Share on other sites More sharing options...
shanvan Posted February 15, 2013 Share Posted February 15, 2013 My day wasn't bad. Woke up with pain in my joints, but it's not bad now. I've been pretty tired, but have to blame myself for that. I've been reading too late trying to find more me time. I wonder when I'll learn? It only hurts me in the long run. Dc had obedience class with their dogs this morning. Ds's cocker was highly entertaining as he responded to everyone else's commands except for Ds. Ds not as amused as I was. As usual, the day isn't long enough and I didn't get everything I wanted done, but I'm very thankful that I don't have to take anyone anywhere tonight and I can recline on my couch with a cup of tea. Link to comment Share on other sites More sharing options...
somo_chickenlady Posted February 15, 2013 Share Posted February 15, 2013 I'm not bad enough to have full blown Addison's but I do have adrenal problems. Mine affects me only from time to time when I get these adrenal storms. Those are bad: I'm literally shaking from having a barrage of adrenaline that I can't turn off. I can't sleep. My heart is racing. Kind of ironic because most of the time I don't have enough adrenaline to then have times when the spigot is turned full bore when I don't want it to be. I don't get adrenal storms, but I get those exact same symptoms when I get really stressed out or when I would otherwise use a lot of adrenaline (if I were a "normal" person). I usually can't come down from it until I take extra steroids. It doesn't happen very often b/c I'm usually hard to rattle, but I had one happen just a couple days ago. Mine is autoimmune (is yours? I have no clue how it works...) so that is how I was diagnosed. It's hard to separate it from everything else, but I *think* it has a fairly profound effect daily. I literally will *not* wake up unless dragged from bed, since my adrenals are not doing what they should to wake me. Blech. DH finally figured out that he can shake me awake and give me the meds, then I'll wake up on my own in a bit. That was a tip from the doc. :) My biggest thing is figuring out when to stress dose. I don't want to overdo it, but then often don't take enough hydrocortisone (Cortef) when I need it. [sigh] It's a balancing act. And ... Without that afternoon dose of it, whew, I crash hard. I still often need a nap, despite it. Would love to hear how it affects others? I wonder if my meds just aren't adjusted right? Oh! And I will update. I have POTS, too. You know, the reason the yellow Wiggle stopped wiggling? For that, I take a beta blocker and increased salt/fluid. And often pass out at night - fun, fun! I have a really hard time waking up also. It is worse, the more sleep I get. If I only get a couple hours, I can usually wake up fine and am awake the whole day, but if I get a good night sleep I can't wake up and have a hard time all day. Stress dosing is hard for me too. I usually only take extra if I hurt myself, if I'm sick, if I get really stressed out (like I mentioned above), if I feel horrible when I wake up, etc. I don't take extra unless I REALLY need to, though, and even then DH usually has to force me. I only take them in the morning, two Cortef. I don't do the 3rd one like I am supposed to, otherwise I cannot fall asleep when I go to bed. I get by pretty well on only 20mg per day, though. I have tried taking the afternoon dose, and didn't notice any difference. My doctor said that the afternoon dose would help me wake up in the morning, but not if I can't fall asleep to begin with! LOL I'm not affected too much by the AD, but if I forget to take my medicine my mood is GREATLY affected. They actually thought that I was bipolar before I was diagnosed with this, and the symptoms went away once I started my meds. If I don't take them, I act bipolar again. DH can always tell when I haven't taken them and refuses to deal with me until I take my meds and they kick in, even though I usually can't tell other than my patience is really thin. I started out taking prednisone when I was first diagnosed, but it made me have really bad anger problems and massive weight gain, which both went away once I was put on Cortef. I have never had a crisis in the 6 years since I was diagnosed. I've read that it isn't supposed to be hereditary, but oddly enough my great grandmother had it. My SIL's (DH's brother's wife) sister has it as well! Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 15, 2013 Author Share Posted February 15, 2013 Mine is autoimmune (is yours? I have no clue how it works...) so that is how I was diagnosed. Probably. I have hypothyroid and other autoimmune problems. I've had two different doctors ask me how I get up in the morning. I have (or had - it's been awhile since my last test) no detectable cortisol levels in the morning. I looked at them and said " I have kids. It's sheer will power." I guess there are times when it helps to be more stubborn than a donkey. . . Link to comment Share on other sites More sharing options...
Parrothead Posted February 15, 2013 Share Posted February 15, 2013 Having a to do list bigger than my energy level. Feeling like a failure because I can't homeschool the way that I really want to - again because of my energy level. Mine usually is a lack of sleep. It gets me in the same way,Jean. I feel like I could do more, be better at it if I wasn't always so tired. Right now I'm dealing with a flare up of the Graves' disease. The iodine therapy I tried didn't work. So I have no one to blame but myself. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 15, 2013 Author Share Posted February 15, 2013 You tried the iodine therapy in good faith. Please don't beat yourself up about it, Chucki. Link to comment Share on other sites More sharing options...
Parrothead Posted February 15, 2013 Share Posted February 15, 2013 Today went okay. The usual list of arthritis aches. The left thumb is really bugging me. Thinking about it, these issues are just dealt with every day as it progresses. It is like Jean said about will power. School isn't going to stop because I'm tired or my joints hurt, or my blood sugar bottomed out. Truly I just have to give myself a kick in the pants and get busy. Link to comment Share on other sites More sharing options...
fourcatmom Posted February 15, 2013 Share Posted February 15, 2013 I have been struggling with health issues for the past year, so I will join. Thus far, severe sleep apnea restrictive lung disease obstructive lung disease myalgia Vit D deficient ANA positive / scl70 positive (?) joint pain (testing now) hypogammaglobulinemia shortness of breath and I was denied disability and just lost my job since I hadn't been able to work since last January Link to comment Share on other sites More sharing options...
Elfinlady Posted February 15, 2013 Share Posted February 15, 2013 I have rheumatoid arthritis. I'm super lucky because my meds are controlling pretty much all of my pain. My biggest problem right now is the fatigue that comes along with it. Link to comment Share on other sites More sharing options...
tex-mex Posted February 15, 2013 Share Posted February 15, 2013 Why not? I'm in. :D I think for those who are frequent WTM'ers know that my son and I have a rare genetic liver disease called Urea Cycle Disorder - Ornithine Transcarbamylase Deficiency. Sonny boy has mild learning disabilities such as poor working memory, severe Dysgraphia, OCD/Anxiety, and other co-morbidities to his rare disease like Osteoporosis and Asperger's Syndrome. Me? Well, I deal with being an Aspie myself. OCD/Anxiety. Diabetes. Frontal lobe (white matter) deterioration due to the rare liver disease eating away and causing overall cognitive issues like confusion, irritability, and other executive functioning matters. The meds I take for both my rare disease, OCD, and Diabetes have side effects that make me fatigued... I can easily sleep all day if not on a routine. Driving a car is not recommended. Alcohol is a big no-no. If son or I screw up with our daily diet and eat too much protein... it can trigger headaches, migraines, nausea, vomiting, and send us to the ER. If son or I get ill, it can send us to the ER. If son or I get a simple cold or flu, it can send us to the ER or worse... coma or death. There is no cure for our disease. It results in death. My mom died of this back in 1992 at age 52. Just lost my older sister to this disease this summer -- she was 51. I'm going to be 47 and scared to death that I might not live past my early 50s. I hope by the time my son is my age, medicine has a lot of answers to our rare disease. We homeschool not due to religion, bullying, or objection to public schooling. We chose to homeschool my son after he was in a coma in 2004 and almost died. It was a miracle he lived and another miracle some doctor figured out (from his old medical school days) that this kiddo might have a really rare disease and not Meningitis or Reye's Syndrome. I cannot go back to my old job as a schoolteacher or even work jobs at McDonald's or retail due to the fact I can get easily sick and wind up in the ER or hospital. I enjoy homeschooling, but miss my old life and career. We're catastrophic for private insurance that we both are now applying for SSI (low income) -- one drug we have to take 3x's a day costs $7500 a month (per person). A newer class of drug for our rare disease just came out with AMAZING results... but the monthly cost of the drug is $25,000 (per person). Between my son and I, we are easily $100K or $500K (if we go on the newer meds) for daily medication alone. That does not include visits to the ER for blood labs (which are often), visits to our Specialist (often), regular doctor visits, and more. And TX is not participating in the Affordable Healthcare Act. Eeeeek. I hate the fact I gave this genetic mutation to my son and fear one day he will resent his life (like myself). Soooo frustrating. I am sorry to be rambling, but this is a support group. But hey... it could be worse, ya know? The grass is greener on the other side of the fence. P.S. Despite all of my complaining... I do a pretty good job of homeschooling my special needs son. I'm very proud of his PLAN (Pre-ACT) test results he took last Fall 2012 "cold" with no test prep. He scored well above my expectations and can easily go straight to a good college with those comparable PLAN scores -- we'll see how he does on the real ACT this Fall. Link to comment Share on other sites More sharing options...
shanvan Posted February 15, 2013 Share Posted February 15, 2013 Why not? I'm in. :D I think for those who are frequent WTM'ers know that my son and I have a rare genetic liver disease called Urea Cycle Disorder - Ornithine Transcarbamylase Deficiency. Sonny boy has mild learning disabilities such as poor working memory, severe Dysgraphia, OCD/Anxiety, and other co-morbidities to his rare disease like Osteoporosis and Asperger's Syndrome. Wow! Thanks for posting. I did not know you ere dealing with all of this. That is so hard. Sounds like you are doing a great job. I don't think I would do as well. :grouphug: Link to comment Share on other sites More sharing options...
Spryte Posted February 15, 2013 Share Posted February 15, 2013 How's the day for everyone? ...Rough one here. Like others have said, I'm going on sheer will power today. Blech. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 15, 2013 Author Share Posted February 15, 2013 :grouphug: :grouphug: :grouphug: Spryte :grouphug: :grouphug: :grouphug: Those are the days when I just try to get through a minute or two at a time. Link to comment Share on other sites More sharing options...
Lisa in SC Posted February 15, 2013 Share Posted February 15, 2013 Having a marginal day here. I have a nearly full blown migraine and pretty severe muscle pain and fatigue. However, we're following the ps calendar somewhat, so no school today or Monday. Hugs to you. Hope you feel better! Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 15, 2013 Author Share Posted February 15, 2013 Lisa, does magnesium help you? I've heard that it can help both migraines and muscle pain. I'm glad that you get to have a long weekend. Link to comment Share on other sites More sharing options...
Recommended Posts