My neurologist and internest, bless their souls, have been trying for several weeks to find an underlying cause for the dysautonomia. The last two possibilities were porphyria and Addison's disease. My porphyria test came up normal, and the Endocrinologist I saw yesterday doesn't think I have Addison's, although he is going to bring me in for an ACTH-stim test. (I had low cortisol levels twice). I felt numb after leaving his office yesterday.

My neurologist told me outright last week that unless I really have to, I shouldn't be working, and recommended that I go on disability. I'm an elementary music teacher and have 3 young children, so it was quite a blow to hear that. I just am so afraid that if I do go on disability, I will become so depressed. I'm depressed now, and I'm with my own kids quite a bit. But when they're in school, and I'm home alone all the time, well... I just can't imagine it. But then, when I feel like my hands are going to fall off after chopping some strawberries, I can't imagine teaching either. I do have long-term disability but my family uses my health insurance and I don't know how that all works.

I think we're going to try Mestonin or midrodine to see if that helps with the muscle weakness. I'm on Florinef for the low BP and that has helped some. I'm also afraid I'm going to get so exhausted.

It's an awful decision to make. I feel like I need to at least try working and see how it goes, see if I can manage. I think maybe if I can get some extra help in the house on the weeknights with dinner, etc,. maybe I can do it.

Has anyone else been in this situation?

Heidi

Heidi,

I had to stop working in 1994 b/c of ME and POTS. I was 33 at the time so it was very difficult - didn't have any kids and hubby works - still does. It isn't easy. I do have a few friends who don't work but not many so I see them once in a while. I do some volunteer work for my ME specialists research foundation and a bit of volunteer work for the church I attend. Can you try working part-time and still receive disability for the time you don't work. Might not be as big as an adjustment. I don't know about how your health insurance would work since I'm in Canada and it is very differnt. I'm sure there are others on this forum who will know.

Donna

Heidi,
I have a little different situation in that I'm not sick but my daughter is. Thankfully, I don't have to work full-time and I'm glad because my daughter really needs me. I understand what you mean a little bit about the depression. I taught last year part-time and my job saved me. It felt good to stay busy and keep my mind sometimes off of what was going on with my daughter. Maybe, you could teach part-time? I guess you're going to have to see what works for you the best. Watching my daughter deal with POTS, I know it is best not to push yourself or you'll end up feeling even worse. Plus, you have 3 young children! I have 2 and I know how busy that is so, I can't imagine how it must be for you. Do you have family or friends in the area who would help you?

By the way, I also live in Wisconsin. I hope that you have found a good doctor here.

One other thing. My daughter tried Mestinon and it really seemed to help her muscle weakness. We went off of it because the doctor wanted to try another med that maybe would help her more with her dizziness, but I'm tempted to ask if we could go back on it again since it really helped her walk better.

My prayers go out to you and I hope that you'll find a good med combination to help you feel better.
Brenda

Hi Heidi,

I was diagnosed with autonomic dysfunction about a year and a half ago (January, 2007). I appear to have some form of a familial dysautonomia, postural tachycardia syndrome, and autonomic neuropathy. I live in Wisconsin also. I travel to see a neurologist at Froedtert & Medical College of WI in Milwaukee. What doctors are you seeing? I take Topamax and a beta blocker (Bisoprolol).

Since January 2008 I had been taking weeks of FMLA medical leave from work due to this illness - thinking that if I could just rest and take a break I would be able to continue working. I finally had to stop working permanently four months ago because I could not manage anymore. It was one of the most difficult decisions I needed to make. I worked in a professional position in a large financial company. My medication causes side effects that decrease my ability to concentrate and focus, I have extreme fatigue, the neuropathy flares-ups can be painful and annoying, and I cannot stand for long periods of time. I worked with complex financial accounts - millions of dollars that I could not make mistakes with. I scared me when I couldn't even remember my basic computer log-in information and stock transfer instructions and then I was supposed to do the detailed account work. I was always a detailed and accurate worked. I took pride in providing excellent service to my clients. When getting out of bed, getting showered and dressed, driving to work, logging onto the computer had me already worn out and I had not even started my work day I new I was going to have to stop.

It has been a huge adjustment emotionally as well as financially. We now have had to make the adjustment to living on one paycheck. I did carry our health insurance; we were able to switch to my husband's insurance but it does cost more. We refinanced our home mortgage to reduce the monthly payments to fit within a new budget we had to create. The monthly budget is tight - no frills. I have not applied for disability – I have to think about that further. Part of me feels that if I apply I have given up completely. Maybe I can still find a way to contribute somehow? Work from home? Some of my family and friends have told me I am still in denial about being ill. Maybe, but I want to keep going. My background is computers – maybe I’ll start developing websites, be self-employed…when one door closes, maybe another opens…

Some of this summer has been rough. I’ve had some “bad” days, spent more days than I wanted in the hospital, and seen more doctors than I would have cared to see. The hot humid days are the worst. If I was still working I don’t know how I would have managed. I have had some “good” days too that I get up, manage a shower, have a cup of cappuccino, read my Bible in my garden and just thank God I am able to enjoy another day. I am blessed with a husband who has been more than willing to adapt with me and this horrible illness. Last weekend one of my daughters was married in a beautiful outdoor ceremony and I had a “good day”. I count my blessings everyday. I thank God for my “good days” and just hold on through the “bad days”.

Heidi, it is a difficult decision. I think it is one you will know when and if it is time to make. Maybe you do need to try and see what you can accomplish (or not). You don’t know unless you try. I had to try and see how I felt if I kept working and I could not do it. I am not a failure. I tried and I did the best I could do - now I move on with life. I wish you the best. I will keep you in my thoughts and prayers. Let me know how it goes.

Lynn

Boy can I relate. I had small children when I first got sick, I felt so guilty because I couldn't work and take care of them. Like you my famiy depended on my insurance. That forced my husband to find another job with insurance. There is a new law stating that they have to put you on his insurance, no more of this saying they can't cover you because of your preexisting condition. I have tried both mestinon and midodrine. I am overdosed on midodrine and it helps. The mestinon helped also, but it is hard on your stomach. I feel for you and understand your struglles because I have struggled with the same things. Lord Bless you and keep you in his hands....

WOW. So many similar stories. Thank you for sharing them and for your encouragement. We can only do the best we can, and I know I need to remember that. For me, too, the thought of going on disability feels like giving up and I really am not ready to accept that. I think I will try some of these medications and see what happens. Thank God for this forum - there are so many people who don't understand this disease - it helps so much knowing that there are others out there like me.

Thank you again,
Heidi

heidianne--- I gotta say there's no reason why it can't be methylation cycle malfunction, particularly with its interaction with the HPA axis (Hypothalamus, Pituitary, Adrenal glands connection). I have a feeling the cortisol testing will definitely show something but the doctor will be confounded as to "what" it is or the cause.

Get a good screening of vitamins and amino acid levels before you resolve to despair. You'd be surprised as to what you might find. And make sure they've tested your growth hormone and thyroid thoroughly.

Make sure to get printed out copies of ALL your lab work.

There are reasons and causes, we just have to demand specific tests. A lot of doctors are not going to be saviors.

its been a while since I posted, but just wanted to commiserate and note that it can be especially hard to quit work when you are just soooo sick, but don't have a dx. That's what I had to do 2 years ago - and while my hubby had insurance for the family at that time, my income kept our heads above water. We ended up moving to a less expensive place to live...but we're still ridiculously tight. While I now have a dx, family (and others) still wonder why I "won't" work when our family needs the money so desperately. Like I'm choosing not to do my best to care for my children. Talk about adding insult to injury! As if my own guilt weren't enough! Time to seriously look into disability I guess...

baxter, concerning the insurance law that you mentioned, is that a federal or state law?

Since our move, hubby does not have family med insurance, but has a lead on two jobs that would. We are wondering whether they would cover me.

Heidianne - I can definitely relate to how you ar feeling. I was a music teacher/musician as well and have had to stop working. It just wasn't working out anymore and I had to take time off. When I fainted on a student, I knew it was time to make the decision. I am fortunate because I taught out of my home and with the local music store so my return is open ended but it's still very hard. My kids are older (one starting college and one starting middle school) so I am alone all day with the exception of my wonderful brute of a dog, Ginger. It is very hard sometimes to find ways to fill my hours when all my "friends" are busy working and going on with their lives. I always told myself that when my kids were older, that would be my time to pursue my dreams and now I really can't. But, I try to focus on things that I let go of before - you know the little things that got lost in all the hooplah when I was so busy. Projects around the house (done on my time as I feel up to them), more time with God, writing letters, focusing more on my writing, cooking from scratch, really enjoying nature), REALLY listening to my kids and spending QUALITY time with them. I never really thought those things would bring me pleasure compared to what I did before but they really do. And, I haven't given up getting well enough to teach or even sing again. It's just on the back burner for now.
I know it's scary and it has to be so overwhelming to deal with all of this with three young kids. Definitely look into all your options (like you said, getting help with meals) and insurance to make an informed decision. One thing about meals - do you have any of those places where you can go on the weekend and prepare really tasty meals reasonably for the month? I think they're great, especially for those times you don't feel well. They provide all the ingredients and you pick what your family would like and put the meals together in freezer safe containers and stock your freezer. I can't remember the name of the ones here but I'll try.
Whatever you decide, take your time (as much as the school allows you anyway). Maybe your school would agree to a jobshare situation where you share the job with another teacher part-time? Best of luck to you.....

I think once I have this endocrine testing done and I try my hand at going back to work my decision will be made for me. I'm trying not to stress about deciding what to do. Trying being the operative word, here.

I can't jobshare - that would put me below my percentage to get insurance at all - and that's mainly why I work (aside from the personal reasons). Trebleclef - it's so nice knowing another musician out there! Where do you live? I'm in Wisconsin. Great idea about the food. I do cook pretty simply.

Take care everyone.
Heidi

Heidi,

Hello, again...

I live in the Appleton/Neenah, Wisconsin area. There is a place here that does meal preparation services:

Dinner Helpers

Dinner Helpers has locactions in Appleton and Weston, WI.

I don't know where in Wisconsin you live but maybe there is someplace similar where you are.

I found this other place which has several Wisconsin locations:

Dinner By Design.

Most grocery stores also have pre-chopped veggies, fruits, etc. in the deli and salad bar area which I have found to be time saving and helpful. When I was working I would often pick up pre-chopped onion, peppers, shredded carrots, etc. --the items that were the time-comsuming part of meal preparation.

I grow my own herbs in the backyard so in the summer it is nice to just step out the backdoor to snip off parsley, basil, rosemary, mint, etc. for cooking. This summer I planted roma tomatoes and green peppers. That helps make meal prep easier too. I can just take a chicken breast or fish filet and lightly baste it with olive oil and sprinkle on some herbs and my husband will grill it. The meat and a tossed salad or fresh fruit is often our meal.

Hang in there. {{{hugs}}}

Lynn

Hi Heidi -

One of the meal assembly places around here is called dream dinners. If you go on mealassembly.net you can do a search by your zip code for meal assembly franchises near you. I think they're great and can be really helpful.

You asked where I live - I live in Delaware. It is nice to know another musician! I sing and play/teach piano but like I mentioned, that is all on hold. Singing especially has become quite a challenge. I think the breathing complicates things - I seem to hyperventilate. I can still play the piano some but not like I used to. Sitting for long periods makes me very lightheaded and some days following the notes makes me very dizzy and "potsy". I guess the adrenaline surge I get from playing is too much at times. It's very upsetting because music is a HUGE part of who I am. But, for now, it has had to become a lesser part.
I hope your endocrine testing gives you some answers. Glad you've decided to just give going to work a try and see what happens. I will be pulling for you!