I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Lisa Emrich

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones


Thursday, July 31, 2008

Carnival of MS Bloggers #16

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

"What would you do if you weren't afraid?"

That is the question Brian poses to each of us in  
During one of my yoga classes my instructor read a story to the class while we were in a meditation pose. The story she read was "Who Moved My Cheese," by Spencer Johnson. The story deals with change; changes in everyday life and how most people fear change.

This story really struck a core with me due to all of the changes that have happened in my life during this year. The most obvious of course, was begin diagnosed with Multiple Sclerosis. The fear of the unknown can really limit people to how they accept changes in their lives. At the time of my diagnosis I had no idea what MS was let alone how it would forever change my life. That fear of the unknown started kicking in and I was freaking out. I was noticing changes in my body and was not able to do certain things as easily as once before. Some days I could hike to the top of a mountain with my hubby Chaz and other days I was so fatigued I couldn't keep my eyes open. MS was changing my body in ways I thought would never happen at age 30. I knew that if I didn't keep a positive outlook I would crack under the pressure.

I started learning more about MS and understanding my symptoms. I started taking better care of myself and took my diagnosis as a wake-up call for my health. As crazy as this may sound, my MS became the change I needed. MS was a slap in the face at the unhealthy life I was leading. In a way I was letting go of the old me and ushering in the new me. Smoking a pack of ciggs everyday since I was 16 years old went out the window. Doing cardio, yoga and weight training has become my new routine. Even with the MS I'm currently the healthiest I have ever been in my life. The way I have dealt with this "change" has helped me appreciate life a little more.

Change is scary, but the way one deals with change can make the world of difference. The most important message someone can get from the story, "Who Moved My Cheese," would have to be:

"What would you do if you weren't afraid?"

I hope you find this story as enjoyable as I did~
I think Diane's response to Brian is important for each of us to remember -

"You have taken the first step. Now, continue to sharpen your emotional tools. MS may take many things from your body and life, but you can always love and be loved."

Such truth in these simple words.

In a different tale, Anne of Disabled Not Dead shares some of the fearful moments of her early MS years. This piece came in the form of an email which Ann sent to me after she discussed Rheumatoid Arthritis on her blog recently and I asked her a question. Thankfully she is allowing me to share this with you.

When I was diagnosed with MS in 1976, that was enough for me to handle because at the time I had just got married and we wanted a family. All the treatments for MS at that time harmed the fetus, so I was advised to "table" getting pregnant. After a round of chemotherapy that was especially bad, I threw my hands up and told my doctor "ENOUGH!" I had gone through ACTH, plasmaphoresis, various chemo infusions, blood washing, nuclear therapy, high steroid therapy, physical therapy, electro-stim, and had been in several "studies." (They justify everything by calling them "therapy" or "studies.")

Then in 1979 I found out I had endometriosis, which inhibits fertility. So over three years, I had 11 (eleven!) surgeries for endometriosis in efforts to get pregnant. I was on Pergonal, Clomid and going through invitro (5 times) trying to get pregnant. Then OB/GYN I was going to said he would no longer participate in my campaign to have babies. Because of all the "therapies" I had been on, there was high concern for deformities and spontaneous abortions. (7 of those)

Every OB/GYN I went to after, as soon as they saw (from records forwarded) that I had MS and had various treatments for it, they would refuse fertility treatments.

I was tested for Rheumatoid Arthritis and Fibromyalgia at that time and the tests were negative - everything within normal range. Then testing for the RH Factor was done and that was within normal range. MRI's were not around yet, CT scans of brain showed benign MS. I had a small window of opportunity to get pregnant and I jumped on it.

Finally, I made a decision to NOT tell the next OB/GYN anything bad, in order to get someone to treat me. Long story short, after 9 pregnancies, I have two live children.

Pregnancy is supposed to make MS dormant but that isn't always so. When I was 6 months pregnant (on Christmas morning) I had a stroke and the stroke set off the MS. Two years of rehab later, most of my physical MS symptoms can be attributed to stroke. When I was well enough to go back to school and work, instead of telling people I had MS, I only told them of the stroke.

I was in medical school when I was dx'd with MS, almost completed when I finally got a pregnancy to hold and dropped out so I could hold on to the baby. It worked. But I had to give up a career that I had worked for since before I was a teenager. No regrets now, I have two sons. After rehab, I went through a PA (Physician Assistant) program and was able to be employed without discrimination because I was quiet about the MS.

If you read my blog, you may remember my writing about someone who "outed" me in the ER where I had been employed. She was a med tech in my doc's office and totally screwed me in my job. I was fired.

After that, I've had to invent some very devious stuff just to remain employed. I had a bad turn and I returned to work after being wheelchair bound for 8 years. I worked part time, but not in the medical field the whole time. I believed everything the docs were feeding me - that I wasn't going to be able to work full time, that I'd be in a w/c before I was 50, that with each flare I would get worse and finally that I would advance to progressive MS.

In 2000, I decided to take control of my life again. I went back on my old regimen of exercise, water therapy, vitamins, diet, H-Wave and deep water walking. Within 3 months, I was able to work 25 hours a week and in 6 months added 15 hours to bring me to full time.

Getting past an employment physical was old hat for me, so in 2001 I decided to get back in the medical field. They did some routine blood work and urine and wouldn't ya know - they sent it to the lab my doc uses. That's how they found out I had MS - from the lab. Because of the ADA laws in USA, I was covered. The lab tech was fired but damage was already done.

I went back to my neuro in efforts to see if there was anything they would be privy to that I didn't really want them to know.

He decided to do some bloodwork because he was not cc'd on employment blood studies and he wanted to see how much it had changed since the year before. At that time, I was only getting bloodwork done once a year (around my birthday).

Lo and behold, he had added several tests onto the routine tests, and guess who now has RA. So when it flares, I go on a prednisone timetable...if it is really bad, I do IVSM. When the RA kicks up, the MS flares; when the MS flares, the RA acts up. Vicious circle.

I have to go for MRI within the next month and I am worried because I have lost some of my cognitive abilities. Coordination isn't bad, but brain power is noticably changed. I get MRI's every two years because I am stubborn and don't want to be reminded yearly of how bad it is getting. LOL. On MRI, from 1994 through 2000, I had active 16 brain lesions - very little changes on MRI.

In 2002, after my regimen had been in place almost two years, I had 3 active lesions. In 2004, one active lesion. In 2006, no active lesions. Because my brain isn't behaving iitself lately, I am concerned there will be active lesions again. My neuro is cool with the fact that I don't want any MS drugs and agrees to just follow me. I think something absolutely DRASTIC would have to happen to me for me to consider any MS therapies....like total shutdown where nothing works anymore. Even then I guess I'd have to think about it...if I could think still.

Oh well, you've got the general idea of how I manage with MS. Mental stimulation is foremost with me and I believe it keeps me sharp. No one has said so, but I myself do notice that my brain is slipping in the past six months or so. I often have to retrace steps, which is a key indicator! LOL

Sorry for this long email. I sometimes think I have to justify why I choose to treat my MS the way that I do, when so many are treating with various injections.

Certainly there are many ways to treat Multiple Sclerosis, but one which Anne mentioned, ACTH, is no longer an economical option since it's manufacturer, Questcor Pharmaceuticals raised the price 14-fold last August. It is more commonly used off-label for Infantile Spasms, a rare epileptic disorder, and one vial now costs $23,239 wholesale when it was $1650 previously. With Infantile Spasm a typical course of treatment requires 5 vials of medication bringing the cost to $145,431 retail.

The following story illustrates that our politicians are listening and willing to act on your complaints.

Price Gouging in Extremely Vulnerable and Captive Market
By 9:00 AM, the line of those waiting to enter Room 106 of the Dirksen Senate Office Building in Washington, D.C., had grown longer than the velvet rope gate established to organize such a line.

"What's being lobbied for today?" asked a congressional staffer who passed by the table covered with handouts of the witnesses' testimonies.

The topic of the morning was pharmaceutical "price gouging" from drug companies with effective monopolies within an "extremely vulnerable and captive market." Thus on July 24, 2008, Senator Amy Klobuchar (D-MN) opened the Joint Economic Committee hearing to discuss, "Small Market Drugs, Big Price Tags: Are Drug Companies Exploiting People With Rare Diseases?"

Even Before It Began

While a friend held my place in the waiting line, I was allowed to sit in one of the chairs at that press sign-in and handout-laden table. I asked the staffer sitting next to me, "Is this a larger turn-out than normal?" She laughed and told me that she had "never seen people line-up for a JEC hearing before."

From that chair, I was able to witness a public relations representative who arrived to leave fact sheets provided by one of the drug companies who was mentioned specifically. That company is Questcor Pharmaceuticals, Inc., who manufacturers the drug H.P. Acthar (r) Gel which is FDA-approved for the treatment of periodic flairs in multiple sclerosis. However, the drug is more commonly used in the treatment of Infantile Spasms (IS) which is a rare seizure disorder found in only an estimated 2000 infants each year in the United States.

The PR rep was told that someone else in charge would need to be asked, but I certainly asked to have a copy. After reading the fact sheet and when he returned to the table, I asked him some questions as well as introducing myself by name. But of course, he had no idea exactly how much I have researched Questcor's historical financial information.

Just a little later, a messenger from PhRMA, Pharmaceutical Research and Manufacturers of America, the industry's lobby firm, also came by the table with copies of a Press Release prepared to accompany today's hearing. Funny thing. She looked a lot like a drug sales rep. You know, that former cheerleader look.

But she couldn't stick around for the hearing as she was on her way to a different one, perhaps the one during which Medicare Part D Reform was discussed. Another funny thing about PhRMA - why is it that so many of their press releases tout "more than 300" drugs in development for name-the-disease-category, such as Mental Illness or Orphan Drugs.

Inside Room 106

A long conference table was facing Senator Klobuchar's seat upon which were three name tags, several bottles of water, and timing boxes which counted down the amount of time allotted for each witness to speak. I chose a seat on the second row so as to be able to hear the speakers better.

Joining me in attendance were 75-80 others in the room. Huge turnout I'm told for a Joint Economic Committee hearing. Staying to listen to the testimonies was Questcor's pr guy who sat a few rows behind me.

Senator Klobuchar opened the meeting by introducing the topic and thanking the three witnesses about to testify. On the docket were an academic economist from the PRIME Institute at the University of Minnesota, a physician who is the CEO/president of Children's Hospitals and Cinics of Minnesota, and a mother of an Infantile Spasm patient who was also in attendance.

Although I do believe that little Trevor slept for most of the event and only needed to be escorted out of the room once, upon returning he was happy enough with his bottle. Sitting next to his daddy and little baby brother was also Tobey, the big brother, who enjoyed some time on his Nintendo. Sorry, I didn't get a good look at what game he was playing.

Before excusing himself to attend another meeting, Senator Charles Schumer, Chairman of the Joint Economic Committee, presented a statement addressing the topic of the day. It is known that Senator Schumer has been "a staunch advocate of lower priced drugs and a competitive pricing market."

The Economist

Madeline Carpinelli, research fellow at the PRIME Institute which focuses its research on policy issues related to pharmaceutical economics and drug expenditures at all levels in the marketplace. Madeline explains that ordinary annualized price increases for branded drugs has been two to three times the rate of general inflation which has become routine.

"This rate of inflation is not necessarily acceptable, or even reflective of an economically efficient pharmaceutical market, but it has come to be expected in recent years."

The study at hand centers around drugs experiencing extraordinary price increases which was defined as "any price increase that is equal to, or greater than, 100% at a single point in time." This refers to a drug which doubles in price from one day to the next overnight. Primarily these drug products are not among the top 100-500 drugs on the market and the huge price increases may have been "flown under the radar" in small patient populations.

The Doctor

Dr. Alan Goldbloom is the president and CEO of Children's Hospitals and Clinics of Minnesota which is "the 7th largest pediatric heath care system in the nation." Dr. Goldbloom made clear that his testimony is not a rant against the entire pharmaceutical industry, but is focused on the practices of some specialty pharma companies and their questionable pricing of some older drugs now used in rare disease populations. His personal experience comes from two companies in particular, Ovation and Questcor, but notes that they are not the only ones and that this practice is not confined to pediatric pharmaceuticals.

Dr. Goldbloom discussed the drug indomethacin (Indocin) which was discovered over 30 years ago to be a safe and effective, non-surgical treatment of patent ductus arteriosus (PDA) found in some premature babies. Dr. Goldbloom testified that before Ovation purchased exclusive rights to Indocin (and several other drugs) from Merck in 2005, the cost of Indocin was just over $108 per unit, truly a low-cost alternative to surgery. But then in January 2006 the price jumped up 1278% to $1500 per unit.

"Indocin is an old drug. It has been on the market for more than three decades, so this dramatic price increase cannot be attributed to the high cost of research and development."

Presented was data on three other drugs which Ovation had purchased from pharmaceutical giant Merck and the amounts of price increases for these drugs which include Cosmegan (up 3437%), Diuril Sodium (up 864%), and Mustargen (up 979%). Please keep in mind that an extraordinary increase was previously referred to as being only 100%.

Dr. Goldbloom turned his attention to H.P. Acthar(r) Gel which experienced a 1410% increase in August 2007 from $1650 per vial to $23,269 per vial. I have previously discussed historical data related to Acthar and Questcor's justification for the rise in price.

After the close of stock trading today, Questcor released their 2nd Quarter Results in 2008 and held a conference call. I was unable to listen to the call at that time and will have to listen to the replay on their website later. Questcor reports Net Sales of $24.9 million and a profit margin of 91%. "We continue to successfully execute our Acthar-centric business strategy," said Don M. Bailey, President and Chief Executive Officer of Questcor in the Press Release.

It looks like Questcor had initially published a Statement Regarding the July 24 Senate Hearing on their website, but the item has been withdrawn and the link goes nowhere.

The Mommy

Danielle Foltz is mother to Trevor Foltz who at 7 1/2 months began exhibiting seizures which resembled "a newborn startle reflex." This was in November 2007 just before Thanksgiving. The Foltzes were preparing to return to their ministry work and home in Tanzania, East Africa when Trevor's jerky, odd movements were noticed. Danielle has shared their story on her
blog Dear Trevor.

Originally the Foltzes insurance company denied coverage of Acthar stating that it is not FDA approved in the treatment of Infantile Spasms. Questcor filed an sNDA for that very indication in August 2006 but announced that they received a "not approvable" letter from the FDA in May 2007.

Mr. Foltz spent days on the phone with the insurance company fighting for coverage for Trevor. Mrs. Foltz called the Acthar patient assistant program but was told that it would take "a minimum of 3 business days" for the approval process and that approval was not guaranteed even in financial situations such as their's.

Ultimately treatment for Trevor was delayed six days before they were given the go-ahead to start treatment. Being quoted a price of $30,000 per vial the medication, and with a round of treatment for Trevor requiring 5 vials, the cost for medication alone approached $150,000 for their drug plan.

"Because ACTH must be injected into the thigh, a nurse had to teach us how to administer it once we went home. When she asked my husband if he was nervous about giving Trevor the shot for the first time, he answered that he was more nervous about holding $5000 in a single syringe. Or worse, dropping the vial!!"
Just imagine. With an insurance plan having 10-20% copays on medication, Trevor's treatment would cost $15,000-30,000 to the insured patient. Insurance policies can be structured in so many ways that it is very difficult to ascertain what the typical cost to the insured customer is. What I pay out-of-pocket is different from what you pay out-of-pocket which is different from what your neighbor pays out-of-pocket, all for the very same drug.

In Conclusion

It was fascinating to attend the meeting and learn a few things I didn't already know. It was a tiny bit frustrating to be sitting in the audience and know that I could supply much greater detail than was presented in such a short period of time. In fact, two of the drugs I take in relation to having multiple sclerosis were mentioned during the question/answer session.
  • Effective Monopolies
  • Vulnerable and Captive Markets
  • Old Drugs - New Prices
  • Orphan Designation
  • Anti-competitive Behavior
  • Price Gouging
These were the topics discussed today. Senator Klobuchar stated that this is only the beginning of the research to come. The Federal Trade Commission and the General Accounting Office have been asked to investigate further the business strategies and executive decisions which have led to such extraordinary price increases in recent years.

From 100% to 10,000%, drug prices in niche markets have soared
and ultimately we all pay for that. The question is - Who Benefits? and Who Suffers?

I look forward to following the developments of such research and the conclusions of the researchers.

After the hearing concluded, I spoke with Mr. Foltz before introducing myself to Ms. Carpinelli. Unlike the Questcor guy, she immediately knew who I was. "I've read your blog. It's great! And the research you've done... Going through and actually reading SEC filings... Impressive. I wouldn't do that. (lol)"

Well, then again. I'm an odd duck and heard for about the fourth time this week that I should start a secondary career. What do you think?
  • Passionate Patient Advocate
  • Financial Researcher and Analyst
  • Strategy Consultant
  • Freelance Writer/Author/Blogger
Which hat do you think might look good on me?

Transcripts and Video can be seen here.

This concludes the 16th edition of the Carnival. I apologize if I've left your blog out. Please consider submitting again for the next installment.

The next Carnival of MS Bloggers will be hosted here on August 14, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 12, 2008.

Thank you.
Read comments for this post here.

Thursday, July 17, 2008

Carnival of MS Bloggers #15 - Mood Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Shauna of bugs, bikes, brains starts us off with What Makes Me Happy.

NH=Not Happy and H=Happy.

NH: waking an hour or so before the alarm clock goes off.
H: hearing the loons at a nearby lake at 5 AM.

NH: getting my boots filled with water at a river clean up
H: the river clean up

NH: paying bills
H: that I'm able to drive, work and shop

NH: the clothes I just bought a week ago are now too loose
H: I'm losing a little bit of weight

NH: neuropathic pain:
H: maybe it's continued re-myelination

And this is where I got stuck. I can't think of enough things that make me not happy to continue in this vein (which is something in itself to be happy about) so I'll instead list the things that make me happier.
Here's where you venture over to Shauna's blog to read what makes her happier, then hurry back here to finish the rest of the Carnival.

I particularly enjoyed the following comment left at the above post:

"Even if in a somewhat "bad" mood when I arrive at your blog, I always leave a wee bit "happier" after reading it! You really ARE a genuinely good-natured and delightful soul...and since happiness is found within, I doubt you have to look very far for yours...thanks for your posts and pics." - Linda D. in Seattle

Jen who blogs at MSfriend discusses a Foul Weather Mood.
On this topic, I have to admit that I’m a somewhat moody person. Just like the weather, there are days when I feel sunny and temperate, brisk and aloof, cold and not open to conversation, misty and sad, and hot and volatile. Doesn’t everyone? I like to think that I’m not the only moody person out there, and I do have a way of reigning it in when situations call for it. I think over the years I have learned to better control my emotions when I need to—- something challenging for fiery Aries people who pretty much wear their thoughts and emotions on their sleeves. Nevertheless, I try to make a conscious effort to keep calm and not overreact.
Read the rest of Jen's post here.

Nadja, the Denver Refashionista who is Living! with MS, shares the following -
Your feelings are your feelings, like it or not. In yoga, we try to train ourselves to be free of judgment yet often, we are our own harshest critics.

I am beating myself up. I can’t seem to stop. It is a compulsion. Every day I read blogs by other MSers and I see just how good I have it and still, I feel sorry for myself. That leads me to anger. Who am I to wallow in a mood or a symptom when someone else has it ten times worse?

My mood is black. It has been for several days. I can’t stop the pity party but I feel guilty for feeling this way. I feel completely bowled over, like I can’t function at all. Under the strain of night after night where I cannot sleep because I hurt, I am cracking. I can see the fissure. I remind myself of worse times where I learned that breath can rescue one, even from the abyss, yet I cannot seem to change my own mind.

I am being torn apart. It feels awful to be so exhausted and overwhelmed. When I was first diagnosed I learned it was ok to just chill. I learned to accept myself and others… Now it seems I am regressing. Breath isn’t enough to make me forget the pain. It doesn’t help me sleep. My mind is not growing calm. I am being destroyed by the notion that I should be doing more. I shouldn’t just sit around. It’s not ok to just scream and cry and still produce nothing.

I am haunting myself. I know these ideas are not coming from elsewhere. My rational mind knows that it’s ok to rest or to just lie around but a part of me will not accept this. I don’t feel better until I have gone to yoga, cleaned house, written and done some homework. Why can’t I escape this insanity? I am always telling others that being present has saved me, that I no longer do things I don’t want to do but I have trapped myself into believing that I am nothing if I am not doing something. Yoga teaches us to “be” and I can’t seem to just be.

When I was sick I was fueled by steroids and mystical experiences. My creativity knew no bounds. Now it is being sucked from my depths as I slowly drown in a sea of self-pity. Is this hormonal? Absolutely. Will I be swept up again in a few weeks? Almost undoubtedly. When I see my future with two weeks sliced out of every month to convalesce, I’m scared. How will I manage when I have to work again?

I like to conclude on an uplifting note but I do not feel uplifted from writing so I will conclude by restating my intro, “Your feelings are your feelings, like it or not.”

This concludes the 15th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on July 31, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 29, 2008.

Thank you.
Comments for this post.

Thursday, July 3, 2008

Carnival of MS Bloggers #14 - Independence Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

independenceindependence - freedom from control or influence of another or others
freedom - the condition of being free; the power to act or speak or think without externally imposed restraints
personal independence - self-sufficiency, self-reliance, self-direction, autonomy

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
The Declaration of Independence July 4, 1776

Those who won our independence believed liberty to be the secret of happiness and courage to be the secret of liberty.
Abraham Lincoln
In the truest sense, freedom cannot be bestowed; it must be achieved.
Franklin D. Roosevelt
Achieving freedom. What an excellent and empowering view of life. Independence does not quietly happen; it must be cultivated, battled for, and nurtured. Enjoy the following stories of freedom and independence.

Emotional Independence and Freedom from Guilt

Very recently our friend Blindbeard began telling her story of Healing. She has a beautiful way of getting to the heart of the matter at hand while discussing "issues...when trying to come to terms with having MS. They are not pretty, yet I cannot believe that I am the only one who went through some of these ugly stages." She continues with, "consider yourself warned, and if nothing else I hope a few people can relate and hopefully get rid of any guilt they may be carrying around for the things they did at one of the hardest times in their life."
Love Me, Don't Judge Me

There is a good reason why I take it very personally when someone tries to tell me how I should feel or what I should be doing. I don't get angry easily and I don't care too much about what others think about me; but being human, I care very much about what I think about me. I'm sure you know this, but please bear with me as I reiterate some things that are pertinent to this story for anyone who may not have read my older posts.

My diagnoses came as a complete shock, out of the blue, a horrible attack out of no where with very little warning. My early signs I shrugged off as nothing important -- depression, anxiety, a leg being numb from time to time etcetera etcetera. And in that first major attack I lost so much of my life that I valued: doing foster care (my neurologists do not want me to have even one kid because of the stress); working and having my own money; my general health, which had always been excellent; spending my time in the outdoors, fishing, camping, gardening. I cried for a couple of months but after a time when others were not crying as much, or were trying to show a brave face for me, I stopped sharing my pain with them, especially my family as they were just as upset (if not more so) than me. Mainly my mother because she is a nurse in a nursing home and cares for several MS patients that have had the disease for umpteen years without the benefits of the DMDs we have now, so she didn't want me to come to her work and see any of them in case it worried me more.

After the first shock wore off I kept all my feelings to myself and put on a brave face for the world to see. This worked for quite awhile until my fourth round of steroids in less than 10 months. I had just celebrated (?) my first anniversary of being diagnosed and was finishing up my taper of steroids when it all came crashing in on me. I woke up that morning feeling strange. I don't have the correct words for it, I just know I felt so numb and dead inside that I wanted to take a knife and cut myself to see if I could feel it. I fought the feeling and ate breakfast and went grocery shopping, but all I could think of was writing a note to explain why I had to kill myself. I came home, wrote the note thinking it would get that out of my head and finding it didn't help and then I made a series of mistakes. I printed the note and put it on the counter in the kitchen, found an old rusty dry wall knife and a rusty dull razor blade and went to work on my wrists.

Somewhere in the haze I was in, I had a feeling that it wasn't right so I called my mom. She in turn called 911 and my whole family, several police, firemen, and EMTs swarmed my house. I cut my wrists up and down and back and forth, crisscrossed and every which way I could. If those nasty rusty things were not so dull it would have been even uglier than it was. There was blood all over my clothes, the kitchen, and me. My memory becomes very hazy after I started cutting myself. I know I put my hands over my face and wouldn't look at anyone because I felt so worthless and useless that I couldn't look anyone in the eye.

I ended up being tossed into the loony bin and had 5 days to cool my heels and think about what I had done. I had to go before the Mental Health Review Board to show that I was no longer a "mentally ill and dangerous person." They shackled me (as if I could run away!) and that damn note I wrote, that was meant only for family to see, was pulled out over and over and over again. I got so angry from always having to talk about it, I told one of the counselors to just publish it in the newspaper so the whole town could read it and talk about it. In the loony bin I decided that I was no longer going to pretend to be/feel anything that I am not.

Nature has a way of healing us whether we think it will or not, and I decided that I was just going to be me and let nature do her thing. I will never, under any circumstances pretend to feel anything other than what I am feeling. I know it was the steroids combined with my hiding my true feelings that pushed me over the edge that day. That is why I don't like people telling me what to do or how to feel. I will get there in my own sweet time, and trying to force it is not healthy. Instead I am embracing my emotions and enjoying the way nature works on a damaged soul. I am intrigued by the healing process; it is such a myriad thing and so unpredictable. But in a life that is so routine I want to scream and run away some times, I welcome the ups and downs and realize that we all grieve in our own way, and it is always best to let nature do her thing and not let others tell you how you should be feeling. I wish I had known that earlier -- my wrists would be a lot prettier.

Freedom of Laughter

Physical Independence on Wheels

Browsing through the blogrolls of MSers, I discovered a new-to-me MS blogger, Retired Waif, who writes with sarcastic humor and dry wit, often with colorful language. I think it was this statement which sent me reeling in laughter - "People. If you’re not certified to repair this chair, don’t put your hands on it unless you’re prepared to buy me a new one."
Why YES, this IS in fact the hill I want to die on.
So I haven’t been around lately, because I’ve been, seriously and for real, actually out of the house for once in a while. No lie. This hermit thing is for the birds once summer hits, and I’m doing my best to actually get the kids in the open air as much as possible. This is all made much, much easier by the fact that I have my new chair, which is utterly slick, and I can now do things other than clutch my husband’s arm all day ...
Despite the invention, some time ago I believe, of a circular frame or disk arranged to revolve on an axis on vehicles or machinery (popularly known as the “wheel,”) people remain, apparently, very very daunted by hills. On my behalf. The situation is so dire, in fact, that it renders null and void any requirement for consent on my part to being touched, grabbed, or screamed at
Here’s a brief summation of a few of the incidents I mean:
The farmer’s market: Not the first time this sort of thing happened, but the first time that the situation went beyond one in which I could continue to chirp “No thank you! No thank you!” and started letting the obscenities fly. You see, the Farmer’s Market I frequent and the ATM a block-and-a-half away are separated by… (cue the spooky music)… a HILL. OK, a pretty steep hill. It’s actually a hill that I practiced on a few times to make sure I was up to the hills on campus, before I took the chair out alone for the first time. It goes… up. On a grade. In one direction. As a hill does.
Halfway up I hear panting behind me. A fortyish woman who, let’s be frank, probably spends a good deal of her time praying to be in the sort of shape I’m in is laboriously clambering up behind me and, thinking she might need to pass, I pull aside and stop. Mildly annoying to stop on a steep grade, but no more so than having to hurry up on her behalf would be. When she catches up, I expect her to pass so that I can continue, but instead she stops and, proud as anything, beams “I came up here to help you!”
“Oh, thank you so much, that isn’t necessary,” I tell her.
“Oh, no, it’s fine, she says, and proceeds to dart out her hand and make a snatching sort of grab for the back of my chair. And right here is where I lose all sympathy for these people. It’s the grab. It’s not just that they’re touching without permission. Not just. It’s the fact that the grab is fast and the grab is furtive, because they know. They know they’re doing unwelcome shit. They just think they can get away with it.
I couldn't really hold back a loud, startled “What are you doing?” and things devolved from there. She wouldn’t leave, just stood there, arms folded, yelling about how she was helping and I should be grateful and so on and so forth. Egh. Enough.
After she’d finally gone away, I turned back up the hill again, sharing a shaking-our-heads-in-disbelief glance with my ten-year-old. Not two more feet up the hill it happened. Crack. The seat-back (which is extremely low) gets slammed into the small of my back, hard. Someone, a man this time, has apparently decided that he’s going to take over this going-up-the-hill thing for me and, not seeing any way to push the chair (because there isn’t one) has decided to grab the backrest and shove.
I was, at this point, beyond furious. Guy, as well, was livid at being challenged by the ought-to-be passive victim of his help. To quote Forster, “the man was young, the woman deeply stirred, in both a vein of coarseness was latent.” Anyone reading this blog knows there’s more than a vein of coarseness in this waif, and it ain’t all too latent–and my rescuer had quite the temper himself.
Yelling. Screaming.
People. If you’re not certified to repair this chair, don’t put your hands on it unless you’re prepared to buy me a new one. Really. It’s bloody expensive and insurance covered none of it (but they’d cover a powerchair, which costs thousands more, how asinine is that?). Also, I sliced my own hand open (there’s apparently a reason this chair is named the Razorblade) and don’t really want to be liable for someone else’s misguided injury. Speaking of injury, I did call the police, and it is assault to grab someone’s chair, and the officer I spoke with said that it might even be possible to make a case for leaving-the-scene if you break something on the chair and then run off, refusing to give me your info. I wonder if I can charge it as a bias crime when they respond to the assault charge with “but she’s disabled!”
You can’t really predict what kind of quixotic, litigious lunatic is sitting in that chair you’re trying to grab, so why not try asking first? The ass you save may be your own.

A Dream of Financial Independence

In January on Brass and Ivory, I posted about the cost of MS injectable medication. Only a few months later, the numbers need to be adjusted. Substitute $8000 for $7000 and $2000 for $1750. Imagine - one ounce of medication costs $2000. Unbelievable.
The value of money or the value of health - What do you see?
What does money look like to someone with multiple sclerosis?

This is what $7000 looks like to me....120 pre-filled syringes...120 mL.
Four months worth of daily self-injectable medication.

One syringe = 1 mL
120 mL = 4 ounces
1 ounce = $1750

But it won't pay the bills nor would it pay for an Italian vacation. You might look at it like an investment in future health and mobility. Put the money in now and hopefully reap the benefits later if all goes well.
This is what $7000 looks like to most people....$7000.

It could be used to pay the mortgage, to purchase a new french horn, or to provide for that Italian vacation. But for someone with multiple sclerosis, it likely goes to pay for out-of-pocket healthcare expenses.
Although I have a private, individual health insurance policy with a major carrier in the Washington, D.C. area, I still have to pay this $21,000 annual expense for a single medication designed to slow-down the MS disease progression. It might work, it might not work. I can only hope it does.
My insurance premiums now cost approximately $3500 each year, but the company still will not cover my medication in full. It will payout $1500 each year for medication, but the rest is my responsibility...my cost.
But what if you don't earn enough money to be able to spend an extra $21,000 each and every year in the hopes of avoiding some level of disability in the future?
Well, the patient contact organization created by the pharmaceutical company (in this case Shared Solutions) refers your case to their benefits investigation team. This team will also run a quick search for government programs in your area for which you might qualify.
What if your state or locality does not have a pharmaceutical program which will cover this medication?
Then your case is referred to the National Organization of Rare Disorders, Inc. (NORD) who administers the prescription assistance program for Copaxone/Teva.
What kind of information does NORD require?
Recent paystubs, federal tax return, 3 months of bank and investment statements, and a signed application form verifying assets, income, and expenses. If you are not single, all of the above information is also needed regarding your spouse.
What does it take to qualify for help in paying $21,000?
Well, what I do know is that with an income of $27,000, a single 37-year old female with some money in retirement and savings might qualify for a 25% award equal to 3 months of medication provided by NORD.
When that same single female, at age 38, earns an income of $19,400 (less than 200% federal poverty level), she discovers the magic threshold at which NORD will provide 100% of the $21,000 medication.
Ironically, today as I have prescription costs on my mind, I received the reapplication form from NORD. Within the letter accompanying the application, NORD reminds us -
"As the Program is one of last resort, we must remind you that continued participation in the program is not guaranteed. Also, allotments awarded may vary from year to year as they are based on dosage, financial need, and the relative size of the Program itself."
Nothing is guaranteed...and each year this now 39-year old female must submit all her financial information for evaluation.
How truly needy is she and how deserving of a helping hand?
It's a numbers game really. As a self-employed person, even I don't know exactly what I've earned until I sit down at year end and calculate all deposits and all expenses. But I did calculate once that I would need to gross an additional $30,000 to be able to pay the $21,000 (plus increased taxes and SEP contribution) and maintain the same take-home pay.
Anyway you look at it, that $7000 worth of medication is an expensive forfeiture of $10,000 earning power and the future financial security that the $10K might provide. I feel as though I have to give up alot in order to gain some hope of slowing this MonSter down.
How do you view your medication?
I dream of never having to examine my medication in this manner. That would be freedom indeed. What about you?

This concludes the 14th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on July 17, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 15, 2008.

Thank you.
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