I'm a single mom of two and have been living on savings plus SSDI. Now I'm out of savings and have no choice but to try to work. I'm starting a job in two weeks that requires me to be mentally and physically alert, and this scares me, as other than taking care of my two elementary school kids I'm in bed 24/7. Unreal pain and fatigue along with anxiety are my worst symptoms. I'm on oxycodone/ACAP for pain and Klonopin for anxiety. Both make the brain fog much worse and make me feel drugged. Even with my medicine I can hardly function for more than 3-4 hours per day out of bed. Already living in an apartment to ease housework and spend as little as possible. I've tried working three times this year, but had to stop all three times due mainly to the pain, fatigue and anxiety. Would take all day to list all my symptoms. Now I'm out of savings and cannot support my two kids on 20K/yr of SSDI. No family to help. No child support. Have to practice fast-paced and mentally challenging optometry, as this is all I've ever done, and I have no other skills. I do get a one hour lunch each day when I can lie down in an exam room on the floor. Doc has no further suggestions for the pain or anxiety. Has anyone else gone from years of 24/7 in bed straight back to work? If so, HOW? Please respond if you can relate or help me. I CAN'T stop working this time. I have to feed my children!
Thank you for responding, Mandy. I'm divorced and court ordered to live in my current school district, which has no low income housing. Food stamps plus SSDI brings us nowhere close to the minimum income we need. I had three decompression surgeries: 1999, 2000, and 2002. The upside is that I can support my family on 3 to 4 days per week practicing optometry. I just have to somehow attain the strength to work at all.
Mandy said:
Hi Maggie,
First of all, welcome to the site :)
I'm very sorry, it's truly a sad situation that so many of our members are women in their 20's, 30's, and 40's who are trying to support their families while suffering from the effects of Chiari.
I'm not sure how state assistance works in Alabama, but have you checked into food stamps and housing assistance?
Also, have you already had the surgery?
Best wishes,
Mandy
Thank you again, Mandy. Yes, I have severe dysautonomia and am taking eight medicines for it. I have been seeing a specialist for it since 1997. Was diagnosed with dysautonomia first then chiari I as the underlying cause. I just have a severe case of both. No, I've not been tested for EDS. Seems odd given the fact I've been mostly bedridden for 17 years and have seen literally dozens of doctors. Will look into it. The 2nd and 3rd surgeries were for meningocoeles though, not reherniation. Yes, AL has legal aid. Just don't want my ex to take my kids away if I take him back to court. He says he'll file for custody if I do, and with my health, may just get them!!! :( Attorney says to let that sleeping dog lie. My plan at the moment is to TRY OUT this 3 day/wk job to see if I can pull it off. On those three days I'll have to let my ex keep my kids, as there's no way I can both work and take care of them at the same time. Employer understands that I'm sick, just not that I'm severely sick. Agreed to let me try for two weeks before committing. At this moment supposed to be commuting to see the practice for the first time and meet everyone, but can't get myself out of bed! If I can't work three days/week then I lose my kids, as the courts won't let me take them to NC where my family lives. Their father has visitation rights and figuratively speaking has me chained to Birmingham. I know that God has a plan for me and my kids; it's just not been revealed to me yet. I've worked part-time with a Chiari malformation, dysautonomia, and lyme disease, just not recently. In 2011 I had to sell my practice, as I became to sick to work yet again, and now there are no jobs in Birmingham. I have to commute three hours each way for this job I'm starting and get a hotel for the nights I'm working, but at least the employer is paying all my travel expenses. I think I need to count myself blessed that I can support my family with three days/wk of work. I know many single moms who are working two full-time jobs just to make ends meet. I can't believe you're actually listening to me cry out for help. Thank You!!!!!!!
Mandy said:
Hi Maggie,
I am very sorry to hear it, it seems terribly unfair to be court ordered to stay somewhere and not be getting child support. I imagine you've already looked into this, but I believe there is free legal aid in most states.
As for working, have you been diagnosed with POTS or dysautonomia? It can cause severe exhaustion, among other things, and is common with Chiari patients. Here's a link:
http://dinet.org/A few of my friends here have said that after getting on POTS medications it made their lives infinitely easier. They still have bad days, but they're not exhausted like they were before. Typical POTS medications are beta blockers, and you can be diagnosed by a rheumatologist or a cardiologist with a tilt table test.
It sounds like you might also have EDS considering your failed decompressions. Have you been tested for Ehlers Danlos? This can also be diagnosed by a rheumatologist, or a geneticist.
Here's a link:
http://hypermobility.org/help-advice/hypermobility-syndromes/beight...And another discussing skin conditions related to EDS: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/
I don't believe there is medication for EDS, but some types of physical therapy can be effective.
I've noticed I'm my best on a Paleo diet, but it's hard to keep up with kids, and I can't imagine trying to do it with a job. If you have the willpower though, it's effective at reducing inflammation in the body. I also do fruit/veggie smoothies with magnesium powder, Vitamin C, potassium, Vitamin D3, and B12 (separate supplements I add in before blending). I do better on the days I have a smoothie, but again, I lack willpower many days.
I know you're probably not looking into surgery at this point, but it appears a chronic leak can cause the hypotension, and I was wondering if you've had an MRI since 2002? Here's a link:
http://www.ncbi.nlm.nih.gov/pubmed/18639079
And finally, with the EDS, cranial instability can be a huge issue. If there's a big enough kink in the spinal cord, it'll cause an entire gamut of problems, and no amount of surgeries will fix it unless it's a fusion.
Take care,
Mandy
Oh, and I just had a brain MRI this year: no leak. Just severe chiari malformation, dysautonomia, and lyme diseade. How do I stop previous reply from being posted a second time whenever I reply?
I'm one year post-op and work full time. I consider my surgery to be a success and while I still think I'm lagging compared to "normal" people I think I do great considering!
It sounds like you have a lot to deal with and are in between a rock and a hard place. I agree with Mandy that an anti-inflammatory diet like the Paleo diet or Dr. Weil's diet could be beneficial to you. I wish I had better advice for you. I will keep you in my thoughts and prayers!
Thank you Mandy and Anglyn! Wow! I've never heard of someone working full-time with a chiari, but then again, I've been too sick to post or browse much on support sites. Thankful for this one! Also, I have to keep in mind that I do have 1) an unresolved chiari malformation 2) dysautonomia, 3) lyme disease, 4) anxiety, 5) no husband or family to help, and 6) an impossible ex who won't let me move for work.
As I type, I'm lying in bed in a hotel room three hours away from Birmingham where I live, as I'm visiting the practice where I'll be working starting in December. Three hours is a looong way to drive for work! With my intracranial hypotension my cerebellar tonsils temporarily herniate when I sit or stand too long, then go back up in my skull when I lye down (at least according to my doctor). Guess that's why my recent brain MRI showed up as normal: I was lying down. Anyway, after siting stationery for three hours in the car I have a killer headache. The only reason I can type right now is that I took a Percocet tonight. Thank God that my doctor understands that I need it to work and raise my two kids.
I'll have to skip the special diets right now, as my hours out of bed without fainting are limited. My top priority is my kids. My up time goes to taking care of them and now working three days per week to support them. My home is a dump, I see no friends, rarely make it to church, and had to give up my sweetheart of a boyfriend all due to limited hours out of bed without passing out.
Mandy, thank you for so clearly stating that "when we do tell people what is going on, they tend to dismiss us or just think we're lying". I feel validated!!! No one has EVER done that for me in 17 years, and you just did! You don't know what that means to me.
I'm so sorry you're separating, Mandy! Any chance of reconciliation? I only as this because when I first separated from my former husband it was only to compel him to get help for his sexual addiction and drinking. He filed for divorce- not me- and I certainly didn't want to be married to someone who's heart wanted out and who was unrepentantly having affairs behind my back anyway.
Either way, you'll make it! I've been divorced for seven years now, and my kids have adapted to my disability. My 11-yr-old makes us all breakfast and packs our lunches and cleans the bathrooms and vacuums. My 9-yr-old makes the beds, takes out the trash, and dusts. They like helping out and get paid above and beyond their allowance for these chores. They both have the option to stop, but a little bit of money goes a long way in their little minds. Sure, sometimes the chores don't get done, but that's when I pick up where they leave off, or sometimes we just leave the house a dump (like now!). Also, you'll be provided for one way or another. In 7 years we've always had just enough work or just enough savings or just enough help to survive. I need to keep this in mind myself too, because lately I've been scared to death that I won't have enough money to last through this school year.
Boy does it ever help to have folks who understand! Thank you all for listening. God bless.
Maggie
Maggie, I just read the other posts under this discussion. Ill reiterate that you are a mountain climber. New questions… Do you still have a herniation? Did you have your dura opened during your decompression? EDS (and subsequent cervical instability) is less known than Chiari. Doctors/ NSs just won’t point it out.
I only have a herniation when I sit or stand for hours- at least that's what my doctor says. When I lie down my tonsils go back into my skull. This is because I have intracranial hypOtension. Just not enough pressure to fight gravity and keep my brain in my skull. Yes, I had my dura opened during the first of my three surgeries. Reinforced closure with second and third surgeries with extra bovine pericardium patched on top (had two meningocoeles). I had a C1 laminectomy. Never been tested for EDS but wouldn't be surprised if I had it. Declined a C2-C7 fusion in 2002 and am grateful that I declined. My aunt had the fusion and has had horrible problems with it since. Thank you for asking.
Hi Maggie...
I started a part time job a month and a half ago...I like the job and know I can do it ..BUT..there have been days when my vision has caused problems ...I have not told anyone there my 'story'...Well, I did briefly tell one of the pharmacists about CM..but not about how it effects me.
The way I am going about this new venture is this: I will take it one day at a time ...that is all I can do...the goof ups I made due to the vision were corrected by the manager and he really didn't seem put off in the least..he is a peach!
Standing and bending for 5 straight hours is hard...I do feel it the next day...also, for me, looking at a computer screen for any length , causing problems...so, one shift at a time for me.
Good luck with your job and let us know how it goes.
Thanks everyone for your replies! Love this group, as people actually write. Other sites are relevant to me, as I have multiple diseases, but very few people even respond on those sites.
Last week I drove to visit my new office three hours away (have to travel for this job). I can't believe I really drove that far without fainting! I met and loved the folks I'll be working with, but the job is going to be tough. It's 100 percent ocular disease, and I haven't worked in a disease clinic for 15 years. All I've been doing is primary care optometry. I'm going to have to be on my toes mentally, and I have a ton of reading and studying to do so that I can take care of my patients properly. Also, they're used to booking four patients per hour, when all I've ever been able to manage is two per hour. We talked and came to an agreement of booking three per hour. That's 24 patients per day. I have no earthly idea how I'm ever going to keep up with that kind of patient load, especially when they're all disease cases and emergencies. I'm nervous. I'm afraid I'm going to keep the staff working through lunch and into dinner time too. I guess the best I can do is try.
As for today, it's already 1:45pm and I haven't even made it off the couch to shower. This is partly because I'm coming off a sleeping pill called trazodone and going through the throws of withdrawal. I can't work while I'm on it, as it makes me feel drunk in the daytime. Nor can I work while going through withdrawal, so this situation had better resolve itself in the next week before I start work on December 4th! For all you Christians out there: please pray for me! I have to be able to work to provide for my kids!
Thanks to everyone for you time, support and prayers. If I don't write again before Thursday, have a happy Thanksgiving!
I have a 5mm herniation. Was working six days a week up until a year ago. Was so sick. Down to two days a week, with a day off in between, and that’s all I can do. Sit in my chair and recoup with a heating pad. Went from eight hour days to six. And I drive an hour and a half each way down and up the mountain. Live at 8,500 ft.
And dr says not Chiari related. Ya…