Unisured With ME/CFS and/or Fibrmyalgia - Part 2 - Bloodwork

This post is the second in a series concerning financial strategies for those who've been diagnosed with a chronic illness, are uninsured and living on a low income.  Click below to see the original post:

What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance

So, now you've seen the doctor and if you've found one who takes you seriously, he or she will probably have ordered a lot of expensive blood work in order to check for autoimmune diseases such as Lupus, Multiple Sclerosis, Sjogrens Syndrome and Rheumatoid Arthritis.  I'm still paying for blood work I had done over a year ago.  If you don't have insurance, you could find yourself receiving a bill from the lab for $2,000 or more.  I got some much needed advice regarding these invoices from a very unlikely source. 

After receiving the invoice for this very expensive blood work, I called Quest Diagnostics to set up a payment plan since there was no way I'd be paying the entire amount up front.  The customer service rep. I spoke with was truly a caring person and spent a lot of time with me.  If you've had any experience with similar situations, you know how incredibly rare this is.  She set up a payment plan for me then asked what my household income was.  I thought this was an unusual question but I answered it anyway.  She proceeded to tell me about Quest's financial aid program.  She said she would mail me the application form and I thanked her profusely for her help.  Sure enough, I received the application form in the mail a few days later, filled it out, attached the requested financial documents and mailed it out. 

The next invoice I received from Quest Diagnostics had a credit applied that equaled about half of the original amount due.  I was shocked and wished I'd remembered the name of the woman who was so helpful the first time I called.  This whole experience taught me an invaluable lesson that I would like to pass on to everyone else who's in a similar situation. 

The lesson is, to always ask if there's financial aid available no matter how unlikely it may seem at the time.  The worst they can say is "no".

The next post will cover prescription medications and ways to get them at a discounted rate or for free!

(Btw - this is post #95 - five more to go till 100 and 20% off everything at Catalina Inspired on Etsy.  Look for the coupon code in post # 100)

ME/CFS, Fibromyalgia & Marriage - It All Comes Down to Trust

The damage ME/CFS and/or Fibromyalgia does to a marriage can be profound.  Its invisible nature makes it seem phantom-like, drifting in and out of reality (except to the sufferer, of course, to whom the disease is never, even for one moment, forgotten).  Since there are no blood tests to prove its existence, there can be a veil of distrust and resentment that hangs over the relationship.  No matter how supportive your spouse is, there is always that nagging question in your mind  "Is he supporting me out of a sense of duty or does he really believe I'm suffering?". 

I often wonder how long my husband will be patient with my ME/CFS & Fibromyalgia. Will there become a time when he finally says "That's it!.   I've been putting up with her claims of this debilitating illness for years and there's no proof that it actually exists. It never gets better and no doctor seems to be able to help her. Have I just been a victim of her delusional hypochondria all this time?"

Then of course there's the self-doubt. Maybe I really am crazy. Maybe this really is all in my head or I just have too many negative thoughts and emotions. These crazy ideas don't last long, however, when the pain or fatigue reminds you - this is definitely NOT "all in my head."

Most people don't like to complain about their pain because they know it can be trying on their friends and families and also they don't want to appear weak.  Unfortunately, with ME/CFS & Fibromyalgia, the moment you stop complaining, your suffering is forgotten by many around you.  You look fine, so why shouldn't you feel fine.  When I first became ill, I complained all the time, trying to get sympathy from my husband who, I thought, didn't at all comprehend what I was going through.  I'm sure my complaints were interpreted in a different way from his point of view however.  Now I try not to complain as much or moan and groan when my pain is particularly bad and my husband is more likely to ask me how I'm feeling. I can definitely say our relationship is much better for it.

With no way for your spouse to directly experience what you are feeling, it all comes down to trust.  If a marriage is built on trust it has a good chance, I think, of surviving ME/CFS and/or Fibromyalgia.  It definitely takes patience and understanding from everyone involved.  Spouses have to learn to be patient with their ill counterpart and just as importantly, the sufferer has to be understanding and realize how difficult it must be for her spouse to see her hurting and not be able to do anything about it.  In a marriage where one of the two is afflicted with ME/CFS and/or Fibromyalgia, both definitely suffer, just in very different ways.

Many Many Drugs - Prednisone

Before my last doctor's visit a week ago, I sat down with all my medical records (a very thick file) and compiled a spreadsheet of all the medications I've been prescribed since this nightmarish ordeal began two years ago.  It took a while to organize all this information since dosages on some of the drugs had been changed several times.  When I was finished, there were still some holes in my timeline because I remembered that at times, my doctor had changed dosing over the phone and I hadn't written it down.  Anyone who has ME/CFS or Fibromyalgia knows that if something doesn't get written down, it's forever lost in the fog that took over where your brain used to be.

Two years ago, when I first visited a doctor about my strange set of life-altering symptoms, he ordered, what I didn't realize at the time, would be the first of many rounds of blood tests.  He guessed that I was having a response to some sort of inflammation.  He suggested I try aspirin to bring down the inflammation until the blood tests came back with some answers.  Everything came back normal including the Rheumatoid Factor except for the ANA titer which came back positive with a speckled pattern - 1:36 . 

When I went back a couple weeks later, my symptoms had gotten worse and more blood was drawn.  The doctor I saw this time (from the group) prescribed Prednisone at 60mg per day for five days then 10mg per day for fifteen days, then 5mg per day for ten days.  A few days after I started the Prednisone, I actually felt a lot better and was able to return to many of my previous activities including, walking up two miles of steeply inclined roads per day.  But, about a week into the lowered doses, my symptoms returned and I was experiencing a lot of pain and severe fatigue again.

My doctor prescribed another high-dose round of Prednisone which was effective but short-lived as before.  She explained that Prednisone was not a long-term option at this point due to the toxicity of the drug, so I went back to feeling sick and returned to the doctor once more.

Tune in next time for...drug number two!