Fibro Brain Fog, Thick as Ever

I've been on a strictly vegan diet since March 1st, almost three months.  I've also been taking 150mg, now 125mg of amitriptyline each day.  As I've written before, I'm been feeling better than I have in two years.  I'm able to exercise and do things that I couldn't even think about doing before. 

Yesterday I painted the wooden table out on the patio of the hotel I manage.  I was able to go down the stairs to our maintenance closet, walk back up the stairs holding a quart of paint and paintbrush and still have enough energy to paint the table.  After that was completed, I was even able to water the plants and do some pruning.  A few months ago, I wouldn't have been able to descend the stairs and climb back up without experiencing a lot of pain and shortness of breath.

I'm not sure what's responsible for this huge change in my condition and I sometimes fear it's simply a remission that will run it's course and eventually end.  After all, my diagnoses of Fibromyalgia and ME/CFS (Chronic Fatigue Syndrome) were never proven.  I always wondered if it were something else I was afflicted with but I could never afford the blood work to check for NK cell function, viral titers, VO2, RNase L and cytokines count.  I've recently read that these bio markers go along way towards scientifically "proving" these diseases.

My physical condition has improved tremendously but my cognitive impairment stubbornly continues to fog my brain.  I'm able to do so much more, but my memory and recall are horrible.  Unlike most people, I was always good at remembering names and faces.  In fact, I've embarrassed myself on several occasions by walking up to greet someone by name, who had no idea who I was.  At least that won't be happening any time in the near future. 

Now when I'm having a conversation with someone, I find myself not having the words to convey my thoughts.  It's almost as though I have a stutter.  I'll get stuck on a word like a broken record and have to stop speaking completely to "re-boot" my brain, then start the sentence again.  I'm sure people don't notice it as much as I do, but I feel really self conscious when it's happening.  I also find myself not being able to remember simple words.

Don't get me wrong, I'm not complaining!  I feel so lucky that I have this time to do some of the things I haven't been able to do in the last two years, especially spending quality time with my two year-old daughter.  I'll never again take my good health for granted, knowing that I could loose it at any time.

Growth Hormone Treatment for Severe Fibromyalgia

I just got an email update from MDLinx about the following article.  This is only a summary of the article.  In order to read the whole thing you have to pay $32 I think.  The source link is included at the end of the article summary if you're interested in purchasing it:

Pain, 04/04/2012

Cuatrecasas G et al. – In this largest and longest placebo–controlled trial performed in FM (NCT00933686), addition of growth hormone (GH) to the standard treatment is effective in reducing pain, showing sustained action over time.
Methods

• A total of 120 patients were enrolled in a multicenter, placebo–controlled study for 18months.
• They were randomly assigned to receive either 0.006mg/kg/day of GH subcutaneously (group A, n=60) or placebo (group B, n=60) for 6months (blind phase).
• The placebo arm was switched to GH treatment from month 6 to month 12 (open phase), and a follow–up period after GH discontinuation was performed until month 18.
• Standard treatment for fibromyalgia (selective serotonin re–uptake inhibitors, opioids, and amitriptyline) was maintained throughout the study.
• Number and intensity of tender points, Fibromyalgia Impact Questionnaire (FIQ) with its subscales, and EuroQol 5 dimensions test (EQ5D) with visual analogue scale (VAS) were assessed at different time points.

Results

• At the end of the study, 53% of group A patients obtained fewer than 11 positive tender points, vs 33% of group B patients (P<.05). 39.1% vs 22.4% reached more than 50% improvement in VAS (P<.05).
• Group A patients showed significantly improved FIQ scores (P=.01) compared with group B.
• Although GH discontinuation worsened all scores in both groups during follow–up, impairment in pain perception was less pronounced in the GH–treated group (P=.05).

Read more: http://www.mdlinx.com/pain-management/news-article.cfm/4003919/fibromyalgia#ixzz1vWoGSN3f

Uninsured With ME/CFS and/or Fibromyalgia - Part 3 - Prescription Medications

This post is the third 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, you've seen the doctor, had some blood work done and depending on the results, may have gotten a prescription to address your pain, fatigue or other symptoms.  Many prescriptions for ME/CFS and Fibromyalgia are new and really expensive.  This also means that there aren't generic alternatives.  One doctor I saw prescribed Cymbalta which has a three-hundred-fifty dollar per month price tag!  Incidentally, this particular doctor (a Rheumatologist) had almost no experience dealing with low income and/or uninsured patients as well as countless other faults.   I filled only half of the prescription and charged it on my credit card.

The clinic my GP (who I really like) practices at, has a person on staff who helps uninsured, low-income patients obtain prescription medications at discounted rates or for free, depending on the situation.  When I first started seeing this patient advocate few years ago, it all seemed like magic.  My doctor wrote the prescription and had it forwarded to the advocate.  I made an appointment to see her, she explained which financial papers I needed to provide, she'd fill out some forms and I'd sign them.  In about two weeks, I'd go back, she'd hand me a bag of name-brand prescription bottles, I'd thank her and walk out the door without paying a dime.  Later I started catching on to what she was doing.  The best part is, anyone can do it!

The advocate was simply contacting the pharmaceutical companies and applying for financial assistance on my behalf.  I thought, I'm pretty smart, I can do this myself.  It ended up being easier than I ever imagined.

When I first learned about the high cost of Cymbalta, I started to panic, thinking I'd never be able to afford it.  Then I looked back in my records at the forms my advocate had filled out.  I tried to mimic what she had done. 

The pharmaceutical company that manufactures Cymbalta is Lilly, the same company that makes Prozac. I went to the Lilly website, searched around a bit and finally found a financial assistance form to download.  I can't remember exactly which financial documents they required, but I believe I sent a copy of my previous years tax return and a month's worth of my husband's pay stubs.  I put the application and accompanying documentation in the mail and prepared myself for the usual routine, complete with countless follow-up calls and re-submissions of my application.  To my overwhelming shock, the situation I'd come to expect, never materialized.

About two weeks after I submitted my application, I took out the copies of what I'd sent, took a deep breath and dialed the customer service number, poised for battle.  A friendly man answered the phone  and asked what he could do for me.  I explained that I was calling to check on the status of a financial aid form I had submitted.  After obtaining my name, he quickly pulled up my file.  I had expected the usual "I'm sorry, our computers are really slow today" line, but no excuse was needed.  He cheerfully reported that my application had been approved and the medication was already on its way to my doctor's office.  I thanked him profusely, and hung up the phone in utter disbelief.  His claims were not fiction as I picked up the four bottles of Cymbalta during my next doctor's visit.  My doctor, apparently not used to dealing with uninsured patients, did not handle the whole situation well at all and I never saw her again after that.  But that's beside the point.

What I'm about to write is also beside the point but has to be said. I found it interesting, to put it mildly, that the pharmaceutical company was so willing to mail me drugs with a value of approximately $350. It says volumes about how over-priced these drugs must be in the first place and how huge the profits are. You wouldn't, for example, walk into a grocery store, show them a copy of your tax return and get $350 worth of groceries. But, I suppose I shouldn't look a gift horse in the mouth (if you'll excuse the cliche) so I won't continue with this particular tirade

The point is, that it is possible to get prescription drugs at a discount. Most drug companies will give just about anyone (with a prescription from your doctor of course) a free one month trial. You can usually print the coupon out on your computer and give it to your pharmacist with your prescription.

In the next post, I'll tell you about third party drug distributors that offer huge discounts. Yes, it's legal and based in the USA.

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)

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

This post is the first in a series concerning financial strategies for those who've been diagnosed with a chronic illness, are uninsured and living on a low income.

I was talking to a friend yesterday about the hardships of being chronically ill, uninsured and living on a very low income.  I was giving her some advice about getting her medications at a reduced rate and thought it would make a great subject for a blog series.  I've learned so much in the last two years, being uninsured, suffering with ME/CFS and Fibromyalgia and having to take a long, unpaid leave from my job. 

I haven't had health insurance for a long time - about ten years I think, which was the last time I had an employer who offered it.  When I was laid-off from my job, doing books for a software development company in NYC, I wasn't able to afford Cobra since I only received one month of severance pay and health insurance.  After that that I had lower paying temp jobs that didn't offer health insurance at all.  I didn't earn enough to pay $200 per month for insurance and believe me, I looked everywhere for something I could afford.  I simply didn't make enough to pay rent ($900), utilities ($100), car payment ($300), food, gas, etc and health insurance on top of all that.  You may be wondering why I'm going into all this personal detail about my finances.  I know there are many people out there under the delusion that health insurance is available to anyone who works.  I hope my story will open some eyes to the hardships many US citizens endure simply because they become ill.

When I lost my job in NYC, I was twenty-five years old and healthy.  The occasional visit to the doctor and some anti-biotics to treat a sinus infection, for example, was expensive but doable.  I recently turned thirty-nine and I spent about six thousand dollars in 2011 on Dr. visits, blood work and prescription medications and a large sum the year before as well.  This is far from doable for me. 

There are exactly four people (including myself) who work at the very small hotel I manage.  The owners do not offer health insurance because it would take a huge bite out of their profits, making the business not worth having.  Large companies can get group discounts on health insurance for their employees, but this is simply not realistic for small businesses.  Two other small business owners I've worked for apologetically reported the same findings.

As my mysterious illness progressed during the last two years, I was forced to take a medical leave from my job which made paying for my mounting medical expenses increasingly difficult.  I'd set up payment plans for most of my bills, but it was becoming difficult to even pay those amounts each month.  I did learn some really valuable lessons along the way though, about reducing many of my medical expenses.

If your income is low enough, you can usually qualify for many different programs.  Unfortunately, if you're a person who has a mid-to-low-range income (a single person who makes less than around $25,000 per year, more if your married and have children), you can get caught in "no man's land" where you don't qualify for assistance but your income isn't high enough to pay cash for your medical expenses or for private health insurance each month.  I would guess that a very large percentage of people in the USA fall into this category.  But I won't get on my political soap box because that isn't what this post is all about.

Your battle plan should start even before you walk through the door of your doctor's office.  When you make an appointment, ask the person on the phone if their practice offers a sliding scale or other financial aid for uninsured, low income patients.  Even if you're not sure whether or not you fall into the "low-income" category, fill out the forms anyway.  You may qualify for something.  I've found that doctor's office staff seldom offer this information so you have to ask!  My doctor, for example, offers a twenty-percent discount if you pay your bill on the day of your visit.  This brings the total, for me, to less than $100 per visit.  Even if I don't have the full amount that day, I put it on a credit card and pay when my bill is due.  Try to avoid paying in cash as it's harder to prove how much you've paid towards medical bills.  You may need hard proof of these expenses in the form of bank or credit card statements in the future.

I should warn that some practices do not treat people without health insurance.  This came as a huge shock to me the first time I encountered it.  I was desperate to see a doctor I'd read really good things about and offered to pay the full amount in cash before even seeing the doctor, but I was turned down.  I'm still a bit confused as to the motivation for this policy. 

My doctors office also offers "Charity Care", a program based on income level that provides discounted or free services.  I'll emphasise that you have to talk to an administrative person about this, not the doctor.  Doctors, I've found, are frequently unaware that these programs even exist.

In my next post, I'll write about how to get discounted or free prescription medications and more.

Also - This is my 93rd post - 7 more till my 100th, where I'll post the coupon code for 20% off your entire order at Catalina Inspired on Etsy.       

Someone Pinch Me!

Lover's Cove on Catalina Island

I took this picture on one of my recent walks along Lover's Cove.  There was a westerly swell rolling in so I got some great shots of the spray at dusk.  The iPhone 4S camera is amazing!

My fingers are still tightly crossed as I amazingly continue feeling pretty darned well, two months after having started amitriptyline.  I've even taken up my old routine, walking every morning for a mile or two after I wake up.  I'm not able to do the steep hills I used to but hopefully I will soon. Today I started up one of the hills I used to hike up almost every day but didn't make it very far before I was huffing and puffing and my leg muscles felt like they were on fire.  I'm guessing my muscles are pretty atrophied after going two years without any real exercise.  I'm trying to take it slow but I'm so anxious to be back where I was.  The mere thought that I may be getting my life back is too much to hope for now.  I'm also hoping my renewed routine will help reverse the Osteopenia I was recently diagnosed with.  While I walk, I can also soak up plenty of vitamin D from the Southern California sun.

So, I may have found my cure.  Amitriptyline seems to have taken my pain and fatigue away for the most part.  Zoloft was working fairly well at controlling my pain but nothing, it seemed, could take away the fatigue, weakness and exhaustion.  I'm also still taking 2mg of Lorazepam to help me sleep and I'm not ready to give that up yet.  The thought of the disturbing dreams and nightmares I was plagued with when I first became ill is too terrifying to confront just yet.

I enthusiastically encourage anyone with ME/CFS to give it a try if you haven't already.  I realize that every one's disease is very different but it's always worth a try.  If you're like me, you'll try almost anything.