dr. house, paging, dr. house.

I no longer blog much about my health, or lack thereof, but I need to write about it today ... if for no other reason than to get it OUT of my head so that maybe I can move forward with my day.  Or, week.  Or, month.  Year? 

I am planning to write about type I diabetes soon, covering common misconceptions as well as provide some info about insulin pumps and general life with diabetes.  (For those unaware, both X and I have type I diabetes ... I've had it for 25 years and X for 14, since age two.) 

So, diabetes and hypothyroidism (16 years) aside, I have lived with chronic pain for ten years.  In the beginning, while seeking a diagnosis, or even just a LOGICAL EXPLANATION for the misery, the following were ruled out:

• fibromyalgia
• chronic fatigue syndrome
• lupus
• depression
• any type of arthritis
• adrenal abnormalities
• cancer
• Lyme disease
• anemia
• ...

During my decade-long search for RELIEF from PAIN and EXHAUSTION, I was treated with various narcotic medications (Vicodin, Percocet, morphine, and OxyContin), none of which really helped.  In reality, taking these meds caused more problems because, even though I am a good patient and followed dosing instructions, I not only went through withdrawals on a regular basis (especially while trying to sleep), but also suffered worsening pain brought on by some of these medications. 

For instance, did you know that Vicodin can make you stiff as a board (neck & back) and tear the hell out of your stomach?  If you take it for a few days or maybe a week, you might be fine.  Longer than that?  Be aware ... you might be fine, but YOU MIGHT BE ENTERING THE BOWELS OF HELL. 

Not only that, but because I was on these strong narcotic medications, I was constantly being scrutinized and treated like a drug addict.  TWICE, I was taken to a bathroom with taped-up faucets and told to pee in a cup.  Once, an unscrupulous family member with narcotics-dependence issues compromised my medical care and called my doctor to tell her that she thought I was "faking the pain".  (Thanks, Mom.) 

About five years ago, I said "enough is enough" and demanded to be taken off of all the pain meds.  Frankly, I was in no worse pain off of them than on them.  (A few years later, I asked for the weakest pain medication available.  I was prescribed Darvocet, which I still take today.  After being on it for a year, I demanded again to be put on a smaller dose because I AM ALWAYS TRYING TO PROVE THAT I DON'T WANT THE PAIN MEDS FOR FUN, BUT JUST FOR PAIN!!)

What was I diagnosed with?  Chronic vitamin D deficiency and, get this ... stiff person syndrome.  Please don't laugh at the second diagnosis.  It's a real disease despite the fact that most doctors have never heard of it, and I had one confuse it with fibromyalgia and try to change my medications.  What is stiff person syndrome?  Here's a fairly good description from the National Institute of Neurological Disorders:

Stiff person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Abnormal postures, often hunched over and stiffened, are characteristic of the disorder. People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls. SPS affects twice as many women as men. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord. The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood. People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.

For this condition, I take diazepam (Valium), which MAYBE TAKES THE EDGE OFF.  (Combine a fake-sounding illness with Valium, and ... THEN TRY TO GET PEOPLE TO TAKE YOUR CONDITION SERIOUSLY.  It does NOT happen.  Instead, people think that I am anxiety-ridden and claiming to have a made-up illness.  So NOT cool.) 

All that aside ... I am in pain more often than not.  I cancel plans more often than not.  I wake up in pain daily.  It takes me hours and hours to be in any sort of shape to do anything or go anywhere EVERY. SINGLE. DAY.  And, people in my life, including family members (but not theother23 or X), DO NOT UNDERSTAND (or refuse to).

Where is this (the post, the explanation, the rant) all coming from? 

I am gearing up for another doctor appointment, which I haven't even made yet, to ask for help in relieving my stiffness/pain and to find out why, if I have been debilitated by this for a decade, I can't receive disability or social security.  I can't work.  I have repeatedly tried.  I try to work from home ... but, I'm not dependable.  I might be able to work for a day or two, and then I'm unable to work for two weeks. 

Also?  Taking care of myself is a FULL-TIME JOB ... I exercise.  I stretch.  I take a myriad of medications and supplements at specific times throughout the day.  I eat immaculately.  I meditate.  I do yoga.  I educate myself.  I log my symptoms and their progression, my digression.  I go to doctor appointments.  I have gotten rid of vices.  I think positively.  I keep hope alive.  I do everything humanly possible to feel better and be accountable for my well being.

(Additionally, I want to add that I have spent THOUSANDS AND THOUSANDS of dollars on medications, doctors, and other treatments such as massage therapy, cranio-sacral therapy, acupuncture ... and, the list goes on ... all without any palpable relief from pain/stiffness.) 

I don't know what else to say about this today, except ... if you have a suggestion about how to get some help, an advocate, considered for disability ... I'm listening.  Just remember, I'm tired.  Too tired to fight the system on my own.

Comments

[standing still]

that is totally a full time battle, sistah, and whatever can help you feel better, i'm rooting for it for you

[jsfarmer]

i am so sorry! i know that's not why you posted this, but i had to say. that being said, the healthcare system (in the u.s.) sucks.

i just googled "social security disability attorney wisconsin", and a whole page of links came up--of course, i'm sure you've already tried that. the good thing i saw was that most of the attys state they don't get paid unless you do.

in any event, i too have had (and continue to have) my share of health issues, and i know that sometimes it takes a battle to get anything done. keep fighting!

[Jodi aka soNOTcool]

jsfarmer: For some reason, I always thought that I needed a doctor to start this process, but ... I really am not that knowledgeable about all this. So, I now have an appointment on August 13, where I will query the doctor about it. Depending upon how that goes, my next step may very well be an attorney. Thanks so much for your suggestion. I'm going to do a bit of googling about it myself, now, so that I'm fully educated about it when I see the doc.

[Patia]

Wow ... that sounds like it really sucks. Best wishes to you as you continue to navigate this painful condition.

[Maria]

Oy.
Oy vey.

I have a friend who suffers chronic pain issues. Ya, getting the drugs, keeping the drugs, not being addicted to the drugs, but convincing the drs you need the drugs, suffering side effects from the drugs...it's a battle...and then trying alternative stuff as you mentioned...it's a 24/7 job just maintaining health, say nothing of trying to just sit back and eek some joy out of life. And the energy level. And the making plans you may have to break. And the family not getting it...in fact, completely intervening on something they no nothing about...claiming that one is "faking" it...oh yeah. Seriously NOT cool at all.

So, well, here it is, trite but true...hang in there! You have done this for a long time..from what I see of you from your posts you have a lot of humor and strength. A lot to share and a lot to give to others. Clearly your children see that. And those of us who keep up with your blog see that...you just go tackle that dr and show him who's boss! Disability was MADE for people in your situation as far as I'm concerned. Aforementioned friend has it, and it's been a help.
I hope you keep us posted, even if you don't like to talk about health on the blog....we're hear to listen...we ARE the great void in which you may rant.

[Donna]

I'm in Canada, so I don't think I can be much help with inquiring about disability and the like. Taking care of yourself IS a full-time job when you're dealing with these obstacles! MS is also a Vit. D deficiency, and now that I've read this, I think I have SPS as well! That describes a lot of my symptoms, too. It sounds like you're doing everything right (exercise, meditaton, eating well) so hang in there! I'll let you know how my Chi Machine works when I get it. What's another $500, right?

[Laura]

Oh, girl. That sounds rough. I'm so sorry that this illness colors your days.

I wish I knew something that would help. I will put you on my list of people to remember before the next time I complain: People who exhibit joy and love of life, even while dealing with difficult things. I reflect on this list when I feel myself becoming whiny and complaining about inconsequential things.

Love to you and X. :)

[Prof. J.]

I have no helpful advice, but I will hold you in the light.

[Julie]

I have no helpful advice either, but just wanted you to know I love you.

[Denise]

Ouch. It is hard - and having to navigate the medical system just adds onto that.

I have allergies. A LOT of them. Because of them/related to that I also have severe reactions and sensitivities to a LOT of things and have a very difficult time in ANY environment that is not my home. I have to say, most people, even my FAMILY, don't seem to understand how bad it is, and that I am not joking when I say I cannot sit next to a person who used dryer sheets, or touch clothing hanging on the rack at a store, or that I get a migraine and throw up in the parking lot when the dufus at Aveda 'forgets' and puts a teaspoon of styling gel on my hair at my hair cut appointment. I HATE that. So in that aspect, I totally understand how hard it is when people and/or family just refuse to get it or think it is not that big of a deal or believe everything is exaggerated or false. Arrrrrghh. Ahem. So. I know what you mean.

It is hard trying to constantly work and scrutinize everything to hope for some kind of normalcy and balance. Hope you find some relief in this quest.

[jsfarmer]

i forgot to add that we also have an orange cat (male) who is also riddled with health issues! only after we adopted him did we learn that orange/white male cats tend to have the most health issues. since i'm high (health) maintenance, i guess it makes sense that my pets are too. :)

[Mrs. G.]

I have a close friend who has fybromyalgia and worse than the joint pain and drug cocktails is the speculation from family, friends and DOCTORS that it is all in her head. I honestly can't imagine the frustration of being in serious pain and having people question your integrity or mental health.

That said, I am sorry you deal with this. What a total and constant drag. I admire that it hasn't kept you from focusing on the beauty of life: your family, your photography, your garden. Oh, and your cats.

[Daisy]

Definitely lawyer + doctor. Good luck! My friend just retired on disability early due to MS; she, too, has trouble being dependable because of her unpredictable health.

[fidget]

this may sound crazy.. but have you tried removing gluten from your diet? Celiacs / gluten intolerance is an autoimmune disorder (if you have an autoimmune issue you are at a much higher risk of having other autoimmune issues) and can cause pain, stiffness, RA type symptoms, lupus like symptoms... I thought I was going to be completely crippled by age 30 b/c of pain in my joints. I stopped eating gluten and the pain completely lifted as did many other weird symptoms.. I hope you can find an answer

[Kiri]

Jodi, My husband also has stiff person syndrome and he is experiencing a lot of what you describe. His family has a hard time understanding and frankly sometimes even I have a hard time giving him the patience and understanding I know he needs because I am the one working, taking care of the household needs, running the errands and stuff. I wanted to write to you to tell you that he has had some really good success with intravenous immuno-globulin therapy (IVIG). The literature indicates some anecdotal success with it, but there is not enough clinic evidence to say that this therapy should be recommended for sms patients. He has been getting IVIG for 3 years now once every 3-6 months. His doctor actually recommends it every month, but the medication is very expensive (it is a blood product) and not always available in the country we live in (Turkey). I don't know whether US insurance would cover the drug because it is considered experimental. His mornings are much much better although he still needs valium (0.5 gram a day) in order to function. Just thought I would share his experience with this treatment because it has made a world of difference. He is up and about and can walk around in our little town. He is actually starting to think about working again, although we are having a hard time figuring out what kind of work he can do that will allow him to stay home when he is not feeling well. I wish you all the best and look forwarding to learning what you find out about disability.

[sharon]

Sending you lots of hugs and empathy. Wish I had something better or more insightful to offer. Best of luck with your next appointment. Please let us know how things are going and if you are able to make any headway with getting the disability that you deserve.

[Larissa]

Jodi, I found this post after following you after you posted over on my blog... amazingly, I had never even HEARD of SPS before, and now reading about your symptoms and such, it seems that the criteria fit me much better than even the suspected fibromyalgia. Huh.

Would it be too much to ask that you email me with the current therapies you are on? I know it MUST be a handful, but as I am sitting here, I am honestly in MORE pain than I was 3 days ago before my initial consult at the pain clinic I was referred to. I now have new pain locations that have never bothered me in the past, and whereas I could usually get relief, to some degree, from sitting for a bit, even the sitting is causing burning pain to radiate from my "good" side in my glutes and lower back.

I've had these symptoms for a bit over a year now - I can't imagine trying to cope for a decade. Maybe, just maybe, I can find something worthwhile in what you ahve tried, and get a doctor to simply *try* with me.

Thank you so much, Jodi... your simple drive had ispired me that this is NOT in fact the end-of-all-things. =)