Statute of Limitations on Medical Bills

A couple weeks ago I received three envelopes in my mailbox from a collection agency. This fact itself was not shocking as invoices of mine have been sent to medical collections several times since I became ill. The shock came when I realized they were for Dr. appointments I'd had before I even became ill and while pregnant with my daughter.  Due to my low income at the time, I'd qualified for Medi-Cal which is medical coverage that's subsidised by the state of California. Many low income women in California qualify for this program (which incidentally, ends one month after your child is born). It's a great program but, like so many others, has it's definite flaws.  The invoices totaled over three thousand dollars for services that took place in 2009, almost exactly three years ago.

At first I thought, "how can they be demanding money for something that occurred so long ago"? I did some research and found that there is a statute of limitations on the collection of medical bills. It varies from state to state but typically falls into the three to four year range. California has a four year statute of limitations on the collection of medical bills. When I discovered this, I felt beaten for sure. I dusted off my pre- Fibromyalgia/ME/CFS medical files which are in with the rest of my life's paperwork. When I became ill I had to start storing all of my medical records that delt with these new illnesses in their own box since they took up about as much space as all of the other paperwork combined. Though I'm normally pretty good about filing important documents, I'd apparently cleaned out my files from my pregnancy because I couldn't find the invoices in question.  So silly of me to think that since the invoices had been paid three years ago, it was a done deal.  Lesson learned...don't throw away invoices even if they've been paid in full and the accounts have supposedly been closed.

My story does have a happy ending through, I think.  I collected all of the information I had and made appointments with the advocate I'd worked with during my pregnancy and a representative from the billing department.  I also contacted my bank, Medi-Cal and the billing service my doctor's office uses and asked for copies of records to be sent.  I finally convinced the billing department to drop the case - I think.  The last time I spoke with someone there, I was told they had recommended the invoices be "written off".  I haven't heard anything but I wouldn't be the least bit surprised if next month I get the same invoices from the collection agency.  It seems nothing ever gets done correctly the first time.  That's been my experience anyway.

Autoimmune Syndrome and Pesticides in our Food Supply

Pesticides Being Sprayed on Food Crops (image source: nmorganics.net)



I recently read an article in "Natural Awakenings" the Central New Jersey version, June 2012 issue, that I wanted to share.  I've written about this subject before but felt it was time for a re-visit.

The title of the article is "Is Your Body Allergic to Itself? - The Plight of Autoimmune Syndrome" and is written by Dr. Nikki Conte (unfortunately the article is available only in print or PDF format which is where the above link will take you).

Dr. Conte's article focuses on, what I agree is, the real cause (or one of the main causes) of autoimmune diseases such as ME/CFS (Chronic Fatigue Syndrome) and Fibromyalgia.  I don't understand how the presence of staggering amounts of chemicals, including pesticides and synthetic bovine growth hormone, injested by the average American every day in their food can be all but disregarded by our government, medical establishment and the general public.  Our food supply has become inexcusably poisoned and the presence of these chemicals is routine and completely legal. 

image source:  http://www.lowdensitylifestyle.com/obesity-can-be-caused-by-chemicals-in-foods/

Pesticides are created to kill insects, fungus or any other living thing that may endanger the particular crop they are applied to.  Although I realize human beings are quite a bit larger, therefore less vulnerable to the fatal effects of these chemicals, this daily ingestion must have some cumulative effect.  I think it's naive to think that chemicals who's sole purpose is to kill, will have no negative impact on human beings as a whole.  I've often thought (and I know I'm not alone) that these chemicals must have some part in the increase of autism cases and many other diseases, such as obesity, that the medical and scientific communities seem baffled by. (For more information about obesity and pesticides click on the source link under the above image) 

Our immune systems simply don't know how to react to the onslaught of these relatively new agents and in some people, have become so confused that they wage a full autoimmune attack on benign substances in our food or environment that have been in existence for many generations, or in the case of wheat, since human beings began an agrarian existence around ten thousand years ago.

As the mother of a two-and-a-half year old, this whole notion scares the heck out of me.  I buy as many organic foods as I can reasonably afford and my daughter has yet to taste beef, chicken, pork or any other land animal, though she has had fish on occasion.  I feel desperate to protect her from pesticides, synthetic bovine growth hormone and chemical preservatives but these substances are so prevalent in our food supply that I wonder if this is even remotely possible.

CFS/FM Study at Beth Isreal, New York, NY

I wanted to pass on this information to anyone in the New York metro area who is suffering from Chronic Fatigue or Fibromyalgia symptoms.  The following story aired on CBS Newsradio 880am in New York on June 19th, 2012.
 
Interview with Dr. Benjamin Natelson, Director of the Pain and Fatigue Study Center at Beth Israel in Manhattan

Dr. Benjamin Natelson is also the author of "Your Symptoms are Real" published in 2008 and a professor of neurology at Einstein. This is the website he refers to for more information about the study he's conducting:  www.painandfatigue.com

The study has been funded partly by the National Institutes of Health and sounds very promising.  I haven't read Dr. Natelson's book but plan to do so right away.  In the radio interview, he admits that over the twenty years he has been researching CFS & Fibromyalgia, one of the most important breakthroughs he and his co-researchers have made is simply the general acknowledgement of the existence of these diseases.  Although it's still hard sometimes to get a doctor to take you seriously, you can usually find one eventually that will.  I cannot imagine what it must have been like twenty years ago to have suffered so severely and had doctors tell you it was all in your head.  I don't know how I would have endured it.  I was at least lucky enough to have come down with ME/CFS & Fibromyalgia after people like Dr. Natelson had finally convinced their colleagues in the medical community that this was something to be taken seriously.

If I were still symptomatic, I would be on a plane to NYC ASAP!  I'm from Central New Jersey and my family still lives there (which is actually how I found out about this radio interview) so it would have been a no-brainer for me. However, I'm happy to remain here in (not too) sunny Southern California and be feeling as great as I have been for the last three months.  I'm still doing really well on 125mg amitriptyline and 2mg lorazepam per day.  I've been walking about eight miles per week, up and down 9.5% grade hills and on good days, have been able to maintain a 2.8mph pace up the steepest slopes.  I will never again, for one moment, take my health for granted.  As I've said countless times before...I only hope it lasts.   

(By the way, in case anyone is keeping track, this is my 99th post which means my next post will contain a coupon code for 20% off your entire order in my Etsy Shop, Catalina Inspired in celebration of my 100th post! - I can hardly believe it!)              

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.

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. 

 

Feeling Better and Better

Three Generations (that's me in the middle, feeling not-so-bad!)

Today I actually vacuumed my entire apartment (which is pretty tiny) and did some dusting!  When I finished, I was tired but not abnormally so.  I can't remember the last time I was able to do this.  

I had planned to begin taking Savella last week but I've put it off since I'm feeling so much better on just the Amitriptyline.  I wish I'd tried this a long time ago.  To anyone out there suffering with ME/CFS and/ or Fibromyalgia, give Amitriptyline a try!  It's one of the older tricyclic antidepressants (pre-Prozac) but I've read elsewhere that it was effective, so I guess I'm not the only one.

My parents have been visiting from NJ for the last month.  My mom kept happily commenting on how much better I seemed from when they first arrived (they flew back yesterday).  "You could hardly keep your eyes open" she commented on the phone today regarding the horrible state I was in. 

Could this really be it?  Have I found my holy grail?  I'm still very cautiously optimistic.  After all, I know it could be just a phase.  But in the meantime, I've been very slowly beginning to exercise again which is something I have missed greatly.  Before Fibromyalgia and ME/CFS took most of my life away, I exercised daily and was in pretty good physical condition.  I cannot say the same now I'm afraid.

On a less positive and completely different note, today I attended our small town's annual "Health Fair".  I don't have health insurance and they offer a wide variety of medical tests for very low rates.  For example, I had a bone density test, echo cardiogram and a thyroid/ kidney ultrasound for a grand total of $110!  Those tests would have cost way over a thousand at my doctor's office.  Everything came back within normal ranges except the bone density test.  The result was -2 which I discovered today is indicative of osteopenia.  Being that I just turned 39, this was a bit alarming, although it does run in my family.  My mother (who is 69 - sorry mom) has normal bone density but I once overheard a doctor describe my grandmother's bones as "chalk-like".  From what the technician told me today, bone density can be repaired by consuming more calcium but of course I'll be heading to the world wide web to check it out thoroughly.  I am so thankful though that my heart is in good condition!  I sometimes worry because when I'm not feeling well, one of the symptoms I experience is shortness of breath and the feeling that my heart has "skipped a beat" and it can be scary.

Amitriptylene is Rocking My World!

OK, I know I didn't have much positive to say about Amitriptyline in my last couple posts but I've changed my tune completely.  Between the vegan diet and Amitriptylene, I'm feeling better than I have in a long time.  Although, I'm not sure which is actually responsible for this change, if it's a combination of the two or something else entirely. 

I took this picture on my walk to Lover's Cove today, the first time I've taken a walk purely for exercise in weeks.  I put my earphones on and just WALKED!  It felt great!  I've also been taking fewer and shorter naps.  My muscles and joints feel stronger and are in less pain.  I'm trying not to get my hopes up and set myself up for disappointment later but I can't help it.  If it just ends up being a "good week" I'll deal with the disappointment later. 

My original plan was to taper off Zoloft, start Amitriptylene then, when the Zoloft was completely out of my system, start Savella.  I'm completely off Zoloft and up to a therapeutic dose of Amatriptylene but I'm holding off on the Savella since I seem to be feeling pretty well.  After all, I don't want to take anymore drugs than I have to. 

I'm feeling really well about the vegan diet too.  The stomach discomfort I had at the beginning is completely gone.  Oh how I pray this lasts!

Life as a Paper Doll

Two days ago, I spent the early afternoon with my mom and two year old daughter.  It was a beautiful, warm, sunny day for  Avalon's annual Spring Festival.  Being the quintessential small town street fair, it was complete with food and craft vendors and a tiny petting zoo. 

I wasn't surprised to see quite a few people I knew there, people who could have been friends if things were different, but today I avoided their glances and maneuvered throughout the crowd so as not to be noticed.  During my drinking days I had became an expert at avoiding people by cutting through alleys and hotel lobbies rather than to walk down main streets.  This time though, the motivation was very different.  Rather than hiding from those who may have seen my drunken antics the night before at the local bar, I simply didn't have the energy to smile or speak and didn't want anyone to misconstrue my attitude as personal indifference.

My heart felt heavy as I watched parents of other children in my daughter's toddler pre-school standing together chatting and laughing as their children played with one another.  I would loved to have been part of the group, but laughing expends too much of the very limited energy I have.  My daughter held my hand as we  slipped past the group and her little head craned to see her classmates.  After we passed them, my daughter waved her hand and quietly said "bye bye".  My heart sunk and I felt like the worst mother on the planet. 

When I thought I couldn't possibly get any more depressed, I looked out into the harbor and saw Perdida, in my mind, her two, tall masts, her teak trimmed cockpit combings all upon her beautiful turquoise hull, floating so gracefully in the harbor as I had seen her so many times before.  Now the tears began to well.  Images of my life while living aboard her scrolled through my mind.  I tried to stop them but the images kept coming.  It felt as though I were remembering a movie I'd seen.  The person in that movie looked a lot like me but - it wasn't.  It couldn't be.  That person was strong and healthy.  That person was able to pull herself up from our small boat up onto the deck of Perdida.  She was able to crawl around the engine room and reach through the bilges to make repairs.  That woman could grind a winch handle to raise the sails all the way to the top of the mast and even cook a meal while winds howled and the hull pitched.  I couldn't do any of those things.  I suddenly realized that I wasn't a complete person anymore.  I was like a paper doll with only two simple dimensions trapped in a two dimensional world but with a view upon the full world led by so many lucky people. 

My mother had gone to pick up fish tacos at one of the stands and my daughter and I sat near the very small petting zoo (which included two chickens, one rabbit, one tortoise and a couple of lizards) while my daughter reached her little hand through the fence, trying to pet the bunny who never did come close enough.

We finally made it home and my entire body was throbbing with pain.  I snapped a few short words at my mother and lay down on my very familiar couch, which, within the last two years has become a virtual appendage and turned my heating pad on high.  Tears were streaming down my face and self-pity set in for the rest of the night.  I so desperately hope this new medications takes some of this pain away.

Amitriptyline is Kicking My Butt!



I've been taking 100mg Amitriptyline for three days now and I and I feel like I've been living in a dense fog - denser than usual I should say.  I'm so tired and zoned out, I can hardly do anything.  The prescription is for 150mg per day so as soon as I feel more normal, I'll have to bump it up even more, which I can't say I'm looking forward to.  I've been off Zoloft for three days, so tonight I'm going to take the first dose of Savella from the titration pack.  I have a feeling this week is going to be difficult until I've adjusted to the new medications.  I've been having problems sleeping again complete with nightmares and disturbing dreams.  The body pain and muscle weakness haven't gotten any better either.  I really am tired of this medication cha-cha, withdrawal symptoms while going off, side effects of the new meds.

Wow - I'm just full of positive words today!

Zoloft for Fibromyalgia Pain?

Fibromyalgia Trigger Points

As I posted Tuesday, I've been titrating off Zoloft and replacing it with Amitriptylene so I'm able to take the Fibromyalgia drug Savella.  According to drug interaction information, Savella should not be taken with an SSRI so this change, as inconvenient as it is, was necessary.

Late last year, while conducting yet another of my countless experiments with regards to curing this dismal disease, I also weaned myself off Zoloft (as well as all other medications) in order to follow the Alpha Nutrition Diet for Aching and fatigue (original post).  I noticed when I was completely off Zoloft, that some of my symptoms, which had been absent for some time, returned.  I started again to feel as though I had the flu.  I felt feverish, sweaty and my entire body ached as one does when afflicted with a high fever.  I attributed it, simply, as another phase of the ever changing disease, however, I did make a mental note that the symptoms had appeared almost exactly to the day that I stopped taking Zoloft.

I hadn't read anywhere that Zoloft was being used as a treatment for Fibromyalgia or ME/CFS so I didn't put much stock in the idea that the timing was significant.  The flu-like symptoms did go away, though I can't remember the relationship with when I began taking Zoloft again.

Last night my two year old daughter had one of her infamous sleepless nights which, of course, meant I got very little sleep as well.  Anyone who has Fibromyalgia or ME/CFS knows that lack of sleep is a killer.  Last night, as I lay next to my daughter in her small bed, afraid to move a muscle or even breathe too deeply for fear she would awake, I felt my leg muscles begin to throb and ache, then, the pain slowly spread throughout my entire body all the way to my finger tips.  In what seemed like minutes from when my body started aching, I felt sweat begin to form on my upper lip and the fever-like chills began.  I thought,  "Oh shit!  It's back!".  I'd been fortunate to be rid of these flu-like symptoms for some time and it hardly seemed coincidental that I had taken my last Zoloft two nights before.

I've discovered through reading others' experiences, that treatments for both ME/CFS and Fibromyalgia vary greatly from patient to patient.  One of the strangest and most baffling things about these diseases is the drastically different ways they effect each sufferer and therefore, the methods of treatment that are used.  Zoloft!  Who knew?  If my experiment with Savella doesn't pan out, I'll be going back on Zoloft for sure!  If I can't be completely cured, at least I know some of my symptoms can be relieved.

Amitriptyline & Savella for ME CFS & Fibromyalgia

I'm still going strong with the vegan diet (day 26) and I really think it's helping me.  I posted the question on a couple different forums to see if anyone else had experienced cessation of symptoms after switching to a plant-based diet and I got mixed responses.  Some reported improvements while another wrote she had quit a vegetarian diet after becoming sick and found that meat protein had helped her.  It seems that like so many other aspects of ME/CFS and Fibromyalgia, diet also effects sufferers very differently.

I had a visit with my doctor last week and we decided I would try the last mainstream medication for ME/CFS and Fibromyalgia I haven't taken yet, which is Savella.  Since Savella can't be taken at the same time as an SSRI, I'm tapering off Zoloft and starting on Amitriptyline, a tricyclic antidepressant.  After I'm completely off  Zoloft (in two weeks or so), I'll start taking the Savella and see what happens.  I'm not getting my hopes up since no other prescription medication I've tried has helped, but I feel I have to try everything that's "out there" before resorting to more extreme measures such as B Cell Depletion Therapy which involves toxic chemo-therapy drugs.  If this latest experiment fails, I'll be making an appointment for a consultation with Dr. Andreas Kogelnik at Stanford who is leading much of the research being done on B Cell Depletion Therapy for ME/CFS in the USA.  I have some links and other information about this subject on my website: ME/CFS & Fibromyalgia Awareness - B Cell Depletion Therapy.

Vegan Diet for CFS & FMS - Day 16

I have to admit, of all the different diets I've tried, this is the easiest to stick with.  Since I've been mostly vegetarian for years, cutting out dairy wasn't as hard as I would have thought.  There is actually a very wide variety of vegan food choices including pasta and marinara sauce, peanut butter & jelly sandwiches, humus and spinach wraps, brown rice with cooked vegetables and olive oil and many more meals don't contain any meat or dairy.  I try to use organic ingredients when possible because I still believe that there's something to the theory about chemical sensitivity in food and it's connection to autoimmune disease.  I can't just dismiss the presence of chemicals in our food supply as having no deleterious effect on the health of the general public.  The increase in diagnoses of strange unexplained diseases (such as Fibromyalgia & Chronic Fatigue) is unequivocally on the rise.  The statistics are indisputable, but I digress.

I still believe my experiment with diet change is having good results.  They aren't drastic by any means but I do feel as though I have more energy and I even lost five pounds.  I hope that as I continue eating a plant based diet, the results will become more noticable.

To change the subject a bit, I'm also experimenting with an over-the-counter supplement called Zyflamend by New Chapter which was recommended to me by Dr. Richard Podell in New Jersey.  The capsules are quite expensive so I want to know they really work before investing any more money in them.  Zyflamend is a supplement that was created to address joint and muscle pain (among other ailments).  I started taking two capsules a day back in January and I felt as though my muscles didn't feel as weak as they had but I couldn't be sure the Zyflamend was responsible.  I'd cut down to one capsule a day for the last couple weeks to extend my supply.  I've been noticing increased muscle weakness and knee pain.  Yesterday I took my last capsule.  If the muscle weakness and joint pain continues or gets worse, I'll try taking the Zyflamend again and see if it was in fact what had alleviated the weakness and pain initially. 

Here's the link to the Zyflamend site if you want to check it out.
http://www.newchapter.com/zyflamend

Vegan Diet for ME/CFS & Fibromyalgia - UPDATE

So, I've been on a strictly vegan diet for a couple weeks now.  I still don't have any definitive answers regarding the effectiveness of this diet on my condition but I do think I generally have more energy, as I wrote in my last post.

The only negative thing about this diet I have discovered so far, are the...well...digestive issues.  Without going into much disgusting detail, I'll just say that the dramatic increase of fiber in my diet had some pretty gross side effects.  I went online to see if others were having the same problem and they most certainly were.  Apparently this is a common issue for many people during the first couple weeks on an exclusively plant based diet.  I made a few adjustments, such as, reducing my daily intake of legumes and fruit and it seemed to eliminate the "problems" almost immediately.  In fact, the very first day I adjusted my diet, I experienced almost no stomach discomfort.

So, if you're struggling with some of the same issues, hang in there.  Just try adjusting things a little at a time and I'm sure you too will find a balance that makes your digestive system happy.

To follow up on an earlier post (Being a Mom With ME/CFS & Fibromyalgia), my time has officially run out with regards to the St. Patrick's Day fundraiser at my daughter's pre-school.  In last months newsletter, the teachers had asked if parents would plan to help with the corn-beef and cabbage dinner (talk about digestive issues) they were having to raise money for the school.  When I attended a parents meeting, the director brought this subject up and I sunk down in my chair, hoping no one would notice that I hadn't volunteered for anything.  Since then, I've been wondering what I would say when someone finally asked me point-blank if they could count on me.  Fortunately, the request came in the form of an email which didn't put me on the spot as much as I had imagined.  I explained that while I would be happy to bake cookies or cupcakes for the event, I wouldn't be able to work at the dinner due to my "Fibromyalgia (among other things)".  I continued by writing that I had many physical limitations and that I had been forced to quit my job as a result.

I don't know what the director's reaction will be when she reads the email tomorrow morning, but I'll find out when I drop my daughter off.  I will also have to admit that neither my husband or I were able to sell even one of the eight tickets to the event each parent had been given.

I know, intellectually, it's not my fault that I won't be participating in the St. Patrick's Day dinner, but emotionally, the whole situation just makes me feel like a terrible mother and I fear that's how others will view me.

Vegan Diet for CFS/FMS - Day 6

Well, I don't want to get my hopes up prematurely, but I think I may actually be feeling a bit better.  I think I have a little more energy than usual.  Since my last post, I've spoken to more people who have seen the documentary film "Forks Over Knives" and were also inspired to "go Vegan".  They also reported feeling better than they ever had.  Of course, none of them were suffering from chronic illnesses that I'm aware of but just the fact that a change in diet could have such a profound effect on one's general well-being is so exciting.

My conscience is so much clearer now too.  I gave up eating meat quite a few years ago but still ate fish and dairy.  I always felt guilty, since I knew of the tortured lives chickens and dairy cows endure, never seeing the light of day or breathing fresh air.  I love the taste of fish, so I always rationalized eating it by thinking that since fish lived in their natural habitat and basically led a normal life up till the time they were killed, they weren't nearly as inhumanely treated as other farm animals.

I never had a rationale for eating dairy, I guess I was just lazy and simply avoided thinking about it.  Anyway, I didn't mean to get on my animal rights soap box since it's not really relevant to the topic.

I'm displaying the link for the film "Forks Over Knives" here again because I highly recommend watching it.  I think it can be very helpful if not life-changing.

Stroller Ban at an Aquarium??!!

http://www.mom365.com/Preschool/Posts/2012/Feb/Will-Stroller-Bans-Hurt-Aquarium-Business.aspx

Yesterday I read the above post on the Our365 website about the Cleveland Aquarium banning strollers in their facility.  This struck me as pretty outrageous considering aquariums are such a popular place to take small children.  I would never be able to take my daughter anywhere without her stroller, especially a place that would require so much walking and standing like an aquarium.  After reading the post, I looked down at the comments and the first one I read (Teresa) really got my blood boiling. I just had to put my two cents in and I did (that's me - Kristy).

I don't mean to come down on Teresa, after all, there was probably a time in my life that I would have made a similarly insensitive remark without even knowing I had.  I realize it's very hard to appreciate your health until you don't have it anymore.  I used to hike to the top of one of my favorite trails here on Catalina and admire the beautiful view and fresh air at 1500' but I never thought to feel thankful for being able to get there.  I took for granted that I could walk or hike almost anywhere I wanted.  (here's the comment and mine if you didn't read the original post)

Teresa February 18, 2012
We have a membership to our local aquarium and they have a similar policy during peak hrs. I think it makes sense, stollers are ***bersome and some ppl use then like battering rams in busy places! Those "umbrella" stollers are one thing, but to parade your SUV of a stoller through busy places is just inconsiderate. Though I am bias, devote fans of slinging our child. It works well for us!

 Kristy February 19, 2012
This is terrible! We recently took our daughter to the Aquarium of the Pacific in Long Beach, CA where they DO NOT have a stroller ban. Great aquarium btw. Sure strollers can get in the way but so do kids not in strollers, people in wheelchairs, elderly or disabled people who move slowly, etc. This is clearly discrimination! And to the first commentor who wrote that people are inconsiderate who bring "SUV strollers" and carries her baby in a sling, I just hope you realize how lucky you are that you are well enough to carry your child. I have Fibromyalgia and Chronic Fatigue and can barely lift my two year old, never mind carry her. My trip to the aquarium was exhausting and very painful but as a chronically ill person these are sacrifices I always have to make. I would never have been able to bring my daughter to the aquarium without my "SUV stroller" (which doubles as a walker for me to lean on since I don't walk very well).

Here's the link to the Cleveland Aquarium contact page if anyone feels like voicing their mind.  I know I will.
http://greaterclevelandaquarium.com/plan-your-visit/contact/

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.

My Messy Apartment is Driving Me INSANE!

Are any other Fibros out there sick and friggin' tired of their homes looking like pig sties?  Unless you are fortunate enough to have a husband/wife/roommate who cleans, you probably have an abode that looks something like mine.  Laundry piles up, dishes pile up, dust piles up, etc, etc.  Sometimes when I roll out of bed and walk into my living room I want to cry.  The floor hasn't been vacuumed in weeks, there are toys scattered all over the floor and overdue bills and other neglected paperwork piled on practically every surface.  I can't lift the full laundry basket so I have to wait till my husband is around or make several trips to the washing machine with small arm-fulls.  By the time I've done that, I'm spent.  On a good day I can recuperate for an hour or so and continue with chores.  On a bad day, that may be all I get done.  I may not even get the clothes from the washer to the dryer.

I know other ME/CFS/Fibromyalgia sufferers can understand how incredibly frustrating this is.  I was never a neat freak by any means, but a messy home gives me so much stress and I don't think the excess dust does me any good either.  If I had the money, I'd certainly hire a cleaning person once a week or so but since I can no longer work, that's out of the question.  I just have to do what I can and put blinders on for the rest, although that's a whole lot easier said than done.

Graded Exercise - How NOT to Do It

I try to get out and walk every day, even if it's not very far.  I had just started trying "graded exercise" which I've read is recommend for Fibromyalgia sufferers.  Basically, the concept is, to increase your exertion levels in very small increments over a long period of time.  The theory is, that this type of slowly increased, low-impact exercise, will not cause ME/CFS & Fibromyalgia symptoms to intensify as regular exercise usually does.

I bought an app for my iPhone that measures distances walked, average pace, altitude, where you walked and more, using GPS.  Just as a side note, I really like the app and recommend it highly.  It's called MotionX-GPS.

Anyway, the app can be set to give an auditory update every five minutes with average speed, distance traveled and time passed.  I wanted to keep track of how fast I was walking, since it's often hard for me to judge, and increase my speed slowly over time. 

I began walking, with the new app on my iPhone last week.  I was having a pretty good day, so I decided to do a 1.5 mile walk.  My average speed was 2.4 mph.  The next day I walked the same route and had a similar average speed.  The day after that I decided to try to kick my speed up a bit.  It seems I got a bit over-confident.  I pushed myself and tried to maintain 2.7 mph.  Of course, people as old as my parents were flying by me like I was standing still, but I had to really push my leg muscles to keep up that pace.  I was really proud of myself and managed to repeat my performance the next day but that was the end of that. 

I guess the two 2.7 mph days, pathetically, knocked me out.  I was extremely fatigued and weak for days after.  That was six days ago and finally, just today, I was able to go for a walk.  It was a little under a mile and my speed was more like 2.0 mph and that was as fast as I possibly could have walked.  My muscles felt weak and shaky and I kept loosing my balance.  If I'd tried to walk any faster I probably would have fallen down.  I wonder how long it'll take before I'm able to walk normally again.

The lesson here is, in graded exercise, when they say very small increments, they mean VERY small.