Carnival of MS Bloggers #160

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

I Hate Good Enough

by Lisa Emrich

Growing up, I learned several things: take care and pride in the things that you do, pay attention to details, follow established or recommended procedures, but be creative and flexible enough to find more efficient and effective ways of accomplishing tasks. In other words, don’t expect things to just happen on their own and be willing to improve upon past efforts.

Each of us have responsibilities and must take an active role in the world around us. No matter what that role is, it’s nice when everybody is able to do their best and helps to make things work well together. But sometimes, aiming for “your best” can lead to a distraction called perfectionism.

I have to admit that I’m somewhat of a perfectionist, in an all or nothing sort of way. It’s always been difficult for me to accept something as being satisfactory, good enough, or almost right. And when I do make a conscious decision to simply do what needs to be done, and no more, I find it challenging when others around me may want to go back to the planning stages and do the work over again. Argh, once I’ve let something go, physically and emotionally, I don’t want to revisit it.

But one thing which I’ve had a really hard time learning to accept is the concept of good enough. When living with chronic disease, sometimes you don’t have the luxury of spending tons of energy perfecting every little detail. Sometimes you just have to simply ensure that things are okay, safe, or clean.

In my previous life, when I used to live alone, I was entirely responsible for everything that happened at home. If the floor needed to be vacuumed, I did it. I even moved light furniture so that I could run the vacuum wand along the floorboards to remove the cat-fur dust bunnies before they grew to adulthood. A bit of prevention helped to keep things from getting out of control.

If the dishes needed to be washed, I did them by hand and scrubbed every metal surface till it shined. If the cat became unsatisfied with the condition of his litter box, he was not shy about letting me know by doing his business on the floor of the bathroom. In that case, I needed to focus more on the prevention stage. Although I was swamped with graduate classes, working two library jobs, and performing in at least four ensembles, I was able to stay on top of routine household chores most of the time.

Now that there are three of us in the house, in addition to our three loving fur babies, and I do not need to do everything all on my own, it seems that nothing is quite as clean as it used to be. Items are often not where I left them and there’s always a pile of dishes to be cleaned.

Face it, I no longer live alone, nor do I have complete control over my surroundings which I’ve come to accept. But that’s not all, I also don’t live alone in more ways than one. My roommates now include multiple sclerosis and rheumatoid arthritis.

These roommates, MS and RA, are messy slobs. They don’t do their own laundry, nor do they sleep when I’m tired or get out of the way when I’m busy working. But these roommates are doing their darndest to teach me patience, to teach me how to accept “good enough” when it really is enough, and to learn how to appreciate imperfections. It makes me appreciate a freshly washed countertop, or a pile of clean laundry which I didn’t have to fold myself, all the more.

What types of things have you learned, or are learning, to accept after living with chronic illness for any period of time? Please share your stories in the comments section below.


This concludes the 160th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on November 6, 2014. 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, November 4, 2014.

Comments for this post.

Carnival of MS Bloggers #51

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

The Elusive Diagnosis

My head spins. So many differing opinions, so many docs, so many shifting symptoms, so many labels, so many possible overlapping reasons, so many experimental protocols, just one me. Always just a smidge outside the box. I'm envious of those with neat tidy labels. Yet realize the label doesn't always come with a solution. My head spins.

My desk is full of journal articles and website print-outs. Some carefully read, highlighted, and pondered. Others awaiting good intentions to manifest into action. My bookmarks bar is full of folders with links -- antiviral protocols, antibiotic therapy, brain exercises, ccsvi. The new doc is better than most -- we've had a couple visits. She acknowledges that we need a specialist in a certain area that's not so common. She's stumped for now but promises to look around. Maybe both do our homework and reconvene again in three months? My head spins.

I've decided that after two years of denting my couch I'm diagnosing myself. Ok, so the two years were complicated with some surgery distractions, but still, I want a diagnosis. Yes, I definitely appear to have chronic neuroimmune wonk. Yes, wonk. That should suffice. Guess I should get a cpt code to go along with that.

12 Days Of Christmas 
by the talented Ms. Blindbeard

On the first day of Christmas my MS gave to me,
1 life time of misereeeee.

On the second day of Christmas my MS gave to me,
2 frozen feet,
and a life time of misereeee.

On the third day of Christmas my MS gave to me,
3 hours of sleep,
2 frozen feet, and a life time of misereeee.

On the fourth day of Christmas my MS gave to me,
4 stiff limbs,
3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the fifth day of Christmas my MS gave to me,
5 itchy spots,
4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the sixth day of Christmas my MS gave to me,
6 morning meds,
5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the seventh day of Christmas my MS gave to me,
7 night meds,
6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the eighth day of Christmas my MS gave to me,
8 new aches and pains,
7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the ninth day of Christmas my MS gave to me,
9 assistive devices,
8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the tenth day of Christmas my MS gave to me,
10 year old I can't keep up with,
9 assistive devices, 8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the eleventh day of Christmas my MS gave to me,
11 jerks and twitches,
10 year old I can't keep up with, 9 assistive devices, 8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a lifetime of misereee.

On the twelfth day of Christmas my MS gave to me,
12 things I can't remember,
11 jerks and twitches, 10 year old I can't keep up with, 9 assistive devices, 8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

Loud Sounds and Chaos Equal Pain and Disability in this Multiple Sclerosis Patient
by Lisa at Brass and Ivory

I love my nephews and I love my brother and sister-in-law. In fact, I am thrilled that I was able to spend some quality time with them this week after the previously-mentioned funeral. I don't get to see my brother's family but in a blue moon of blue moons (it seems).

I have had fun...but I am beyond exhausted. Honestly, I wonder how exactly folks with MS deal with having active and energetic families.

One of the things which really disturbed me the most during the first years after diagnosis was my concern and fear as to how I could ever have my own family. I remember when I couldn't use my hands (due to yet-to-be diagnosed RA) and thought that there was absolutely NO WAY I could ever care for a baby since I couldn't even care for myself. I have also had times where I couldn't use my left arm for anything which required weightbearing or fine coordination.

In my personal relationship, we have discussed over the years having children and both of us have had a desire to do so....eventually. Well this past spring, I discussed this possibility with my rheumatologist who gave me directions as to how I must be off of methotrexate for at least 3 months before even trying. Just to see how this would affect me, I stopped methotrexate for a measly two weeks before the RA pain started to come racing back.

The pain I had as the RA truly flared up at its greatest (still undiagnosed at the time) was so excruciating that Rob almost took me to the ER in the middle of the night once because the pain was so tremendous and frightened us both. Neither of us want to get back to that point again....EVER.

But one thing which I had not experienced so greatly during my previous visits here was just how sound has affected my MS body. It's been 2 years since I last visited and during these 2 years, my MS has progressed and relapsed to the point that my doctors and I are using Rituxan to treat both the RA and MS.

I know that I am sound-sensitive just as I am heat-sensitive. At home, I keep the TV volume low (if it is on at all) and avoid loud situations. I enjoy my quiet time, but most importantly, I NEED my quiet time.

Quiet has been a serious deficit this week with four boys in this house - aged 2, 6, 8, and 37. This is a family which loves its TV, DVDs, video games, and chaos. I like some of this stuff too, but in moderation, not in a constant over-load.

Today, my poor MS body had had enough. The input level was extreme as the sound reverberated around in my head. Sounds tend to echo and persist as the auditory nerves are sluggish for me. Also, sounds tend to send waves of pain throughout my body. The most simple way to explain this (to the boys) might be to describe the sensation which happens when you hit your "funny bone." I get that all over.

Also, as my nerves reach overload, I lose function. Not just mental abilities but physical abilities too. Today, my body had had ENOUGH!!

As I was trying to type a message to a friend, I saw my right hand in dramatic tremors. I've had very small, almost not-noticeable tremors in my right hand and right foot before. Basically, only me or an examining doctor would witness them previously. This time, my hand tremor resembled ones which you might notice in Parkinson's patients.

I had already been having a horrible time with spasticity and coordination walking on-and-off during these recent days. It's not a relapse going on, but my body simply reacting to the various situations. I can tell the difference because rest helps to better the deficiencies, as does extra baclofen and small doses of xanax.

Earlier today, my Mom (who is also here visiting) spent some time rubbing the spastic knots in my calves. It was extremely painful but did help to alleviate some of the coordination issues arising from muscles too tied up to work properly. Before that the pain from the noise and spasticity, the frustration of coordination issues including tremors, and the inability to think and speak straight caused me to breakdown crying.

It hurt so much in so many ways. My brother and sister-in-law don't know how to handle my crying, apparently. During previous visits, I've cried a bit because I miss out on so much of my nephews' lives and that saddens me. I've cried because my brother has been rude and stern before towards me. I've cried because I have depression and deal with that frequently.

Today I cried because I was in excruciating pain and frustrated by what having this disease has done to me. I hate it!! I hate MS!! I feel like I miss out on so much life because of it...and I'm highly functioning at that.

Although, the local Walmart store had the better of me the other day. I was having trouble walking straight after making too many circles around different areas. I was going slow and drifting to the left as my legs were like heavy concrete slabs. Drop me in a lake and I would have sunk to the bottom.

As I was looking for the benches in front of the pharmacy (where my sister-in-law works), a man in a shopping cart scooter made a comment about stopping so that I wouldn't wander into his cart as I was "drifting and daydreaming about." Thankfully, I was too tired to even truly respond because I'm sure that - "so sorry to be in your way, but I have MS and really should have grabbed one of those carts for myself on the way in the store. I'm not daydreaming; I'm trying not to fall down with a leg which is dragging nor walk into any of the displays. So please pardon me while I painstakingly and slowly make my way to those benches over there." - probably wouldn't have gone over too well.

Back to the crying this afternoon. Instead of asking me what was wrong, my sister-in-law called for the boys to go upstairs and she kept them there. That's often what happens if I cry, I'm left in isolation by my brother or his family. They don't know how to deal with it. Whether than allowing for a learning moment for both the young ones and the adults, it's "let's withdraw ourselves and punish Lisa for showing emotion, no matter what the reason for it is. Let's not ask what is wrong (which might create an opportunity to fix it), let's just all withdraw and disappear. If she cries, let's abandon her."

Today is not the first time, I've been suddenly 'abandoned' after showing emotion in their house before. Other times I would have said to the boys (if asked), "I just love you so much and feel sad that I am not here to see you often." Today I would have said, "I have this disease which makes me hurt when there is alot of sound and noise, or which makes my body not work right all of the time when I walk or use my hands."

What a better opportunity to teach my nephews (and their parents) some of the things which are different for me than for other people. My sister-in-law is a pharmacist so she should be exposed to the pharmacological aspects of the disease. My brother is a licensed therapist so he should be aware of the emotional and physical aspects of the disease.

But as you know first hand, even our doctors don't truly understand everything there is to know about living with this disease. The nurses and physical therapists who specialize in MS probably understand the greatest. But we know that others with MS who have been at similar disability levels to ourselves probably understand the greatest.

So here's my question to readers - do you also experience extreme pain and loss of function from something as simple as an overload (or chaos) of auditory and visual input? Should we start thinking of this as an official cause for a pseudoexacerbation? What do you think? I'd like to hear from you. (Comments here)



This concludes the 51st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 31, 2009. 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, December 29, 2009.
Thank you.

Comments for this post.

P.S. I remember someone (not included above) sent me a link for a blogpost to be included, but alas I couldn't find that email...and I don't remember who it was. My apologies to the person who I left out.

Carnival of MS Bloggers #41

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

Symptoms, Yoga, and Dignity

Vent and Symptoms
by Casey

I get so frustrated with people telling me that my symptoms aren't real, that I just need to get over it or that they know someone with MS or TM and their symptoms were different than mine so I don't have it and it has to be something else. First of all MS/TM can affect each person differently so just because one person doesn't have pain in a certain area doesn't mean another person can't. Also, these illnesses are hard to diagnose and can take years. Lesions don't always appear on MRI's and results don't always appear with a spinal tap. Sometimes the diagnosis is based on ruling everything else out, the symptoms alone, and evidence that an "attack" has happened more than once.

I have found through my journey that people can either be really caring or on the other hand not care at all. I have found out who my true friends are, I have lost friends, and have been disappointed by friends who pretend to care but don't really show it. These illnesses don't just affect you physically but emotionally as well. It also affects the whole family and not just the person with the illness. I would give anything for this not to have happened to me. I miss the way I was. Mostly I miss being the wife and mother I was and pray that one day I can get that back.

The following I found on a blog of a woman who has MS and thought I would share. Even though I don't have a diagnosis of MS at this time I do have the majority of these symptoms and thought this would be a good way to share with others what it can feel like! I truly hope this well help some people understand what I am going through and realize that it is just all in my head, I am not being weak, and this isn't just something I can get over. [See MS Symptoms - What It Feels Like]

Video: Cooling Breath
from Suzanne
of Yoga Empowered Online 4 Multiple Sclerosis

YaoW! It's hot! Here's a breathing technique you can use to cool your system.

Remember - NEVER STRAIN THE BREATH! You can easily cause yourself a panic attack by pushing to hard. Find a breath speed that's comfortable for you. Especially with MS- we want to soothe your system not aggravate it! Smooth Steadiness & Ease. Please honor your body!

So this technique- You wanna be cool not look cool :o)

Find your easy seat. Spine straight and tall, hands on knees or in your lap. Roll your tongue or pucker your lips like you're sipping through a straw. Inhale- tilt the head slightly looking up as you breathe in coolness at the lips. Exhale- tilt the head slightly looking downward with your tongue at the roof of your mouth breathing out through the nose. Gently tilt the chin up & down not causing any strain.

Practice this technique for 10 breaths or 5 minutes- whatever you've got time for - even doing just a few breaths should help cool you a bit. Hope this helps you Stay Cool! Rock Your Practice! Xo- Suz

PS- This breathing technique can be used to bring coolness to your system, to calm the nervous system and to quell hunger or thirst. :0)

Do I stay or do I go............... 
by Herrad in Amsterdam.

I visited Judi’s blog @ Life as a Hospice Patient last night and read her latest post where she says she is sick of being sick. I know so well what she means about being sick of being sick.

I am really sick of it! Everyone with MS or another degenerative disease is sick of it I think. It is 3 yrs since my MS diagnosis and I have gone from walking and independent to needing help 24/7 and to lying in bed 24/7.

What is very hard to take is that there is no prospect of getting better just progressively getting worse. Yet every now and then I still do a double take as I realise that even though I am doing my very, very best, I will never get better!

That is not how it is supposed to go; it is supposed to go like this: the doctor does the diagnosis and then prescribes a course of treatment which you follow and get better and better and can then resume your life.

Not with MS and certainly not with Primary Progressive MS, I gathered that from the first day that I knew what was wrong with me. Saw right a way on the internet that there would not be any treatment because there was no treatment for MS just a variety of drugs to slow down the progress of the disease.

I have known all along that there is no prospect of recovery only getting worse with the only relief that I can let my doctor know when I have had enough. Then the delightful Dr Wijngaarden will come by and administer a drug that will put me to sleep and then she applies the drug that stops my heart after some minutes.

It is not a pleasant prospect but better than lying here unable to talk, to type and to even see and swallow. I know about all of this, that is why I have chosen euthanasia but I just can not understand how it can get to me big time, time and again that I am so very upset that I will not get better.

Took me some time to work out that there was no hope of recovery, the big trick is to keep hope alive while knowing there is no hope of recovery. Maybe it is because we have grown up believing that the doctor will make you better and this time they can't do that.

Took me some time to work this out had not thought of this aspect but of course that is what I have found so disconcerting from the start when it became all too obvious that I/ we were on our own with the diagnosis. I wonder if you recognise that too?

I try to make the best of the good that is in my life like my darling Richie and friends and still being able to be here and now. As long as I can communicate, can talk, write and read and I can eat and drink, I can put up with the pain as I am still getting the what I need to live.

It is reassuring to know that in The Netherlands I can chose the moment when I have had enough, unlike people in England who can not say, this is enough now and who will be kept alive no matter what.

Even though it is not life as we have known it unless you think that not being able to talk, speak, see or swallow would qualify as life as you know it. I do not think that lying in bed not being able to participate in the life around me or in my community would qualify as life for me.

Don’t understand why there is so much negativity towards giving people the right to self determination over their own lives. In England the Moral Majority keep banging on about helpless people being forced to accept euthanasia and refusing to look at the real heart of the question which is people deciding when they have suffered enough and wanting to exit.

It is a question of a life of pain with no prospect of any improvement and not what they, the ‘Guardians’ like to pretend it is about; they like to propagate this myth that to pass a law allowing Euthanasia would put handicapped people at risk of being euthanised.

In England they practise Euthanasia by the back door, they will increase the dosages of pain relief such as morphine to such a level that you are kept in a sort of coma. Then steadily increase the dosage so the person slips from coma into death, this is what they call palliative care.

Anything but allow people the right to decide when they have had enough pain and do not wish to live totally dependent, hooked up to machines to keep you alive and totally incapable of taking part in life.

I personally can not think of a worse way to end my life then totally out of it on opiates attached to a machine that does my breathing for me and another that feeds me intravenously. That would not be what I would like to happen to me, everyone has the right to decide for themselves.

Shame that there is no real debate on the subject instead of just using the red herring of people being forced to request euthanasia. As far as I can see the current method of euthanasia is via the backdoor of palliative care.

‘’Euthanasia is popularly taken to mean any form of termination of life by a doctor. The definition under Dutch law, however, is narrower. It means the termination of life by a doctor at the express wish of a patient. The request to the doctor must be voluntary, explicit and carefully considered and it must have been made repeatedly.

Moreover, the patient's suffering must be unbearable and without any prospect of improvement. Pain relief administered by a doctor may shorten a patient's life. As is the case in other countries, this is seen as a normal medical decision in terminal care and not as euthanasia."

I am glad I live in The Netherlands where I have the choice to make use of the law on euthanasia.

Would it not be a more honest world if people could decide for themselves how long they wish to live with consuming pain, if they are suffering from a degenerative or terminal disease. Let us look behind the governmental smoke screen and demand a discussion and a change in the law now for a more people orientated approach.

It is a very pleasant afternoon here which I intend to enjoy hope you do too.

In the News: Biotech Bottleneck
from I'm an MS Activist

With a name like the Affordable Health Choices Act, you'd think the health-care reform bill that passed the Senate Health, Education, Labor and Pensions Committee this month would have made an effort to provide affordable health choices. But instead, the bill includes a provision that would create a 12-year market exclusivity period for brand-name biologic drugs. This would drive costs to consumers above even current levels, making the title little more than a mockery.

Biologic drugs, medical therapeutics derived through biotechnology techniques, are an important and ever-expanding field of prescription drug innovation... Prices for a single course of a brand-name biologic can soar into the tens of thousands of dollars, and this is not likely to change soon. Big pharmaceutical companies maintain that a lengthy exclusivity period in addition to the patent protection they already receive is necessary to drive continued innovation...

The Obama administration has favored a seven-year exclusivity period, characterized as a "generous compromise"...

There is still time for action. In the House, a pending amendment would offer a similar 12-year exclusion period, but there is an alternative: a bill put forth by Reps. Henry A. Waxman (D-Calif.) and Nathan Deal (R-Ga.) that would limit the exclusion period to five years. If Congress is serious about health-care reform, it must take another look at whether its legislation truly balances incentives for innovation against the need for price competition.
This is an excerpt from a July 28 editorial in The Washington Post. Read the full article here.


This concludes the 41st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 13, 2009. 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 11, 2009.

Thank you.

Comments for this post.

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  

Who moved my cheese?

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.

Carnival of MS Bloggers #13

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

“If a person who indulges in gluttony is a glutton, and a person who commits a felony is a felon, then God is an iron.”- Spider Robinson

God is THE Master of Irony 

by Shauna

Many many years ago, a friend (George) at university introduced me to the writings of Spider Robinson. The man is very funny and insightful and punny. Makes for a very good combination. So I enjoyed everything he wrote. Then I read Mindkiller. The second chapter of Mindkiller had actually been included in an anthology of short stories. The story was called God is an Iron.

When I first saw this title I thought "iron:anvil". Then I thought "iron:something to remove wrinkles". But God is an anvil or God removes wrinkles didn't make a lot of sense to me. So I decided to read the story to find out what it meant. And boy, was Spider right. God is THE master of irony.

All this is to simply set up how I found out I had MS.
In January, 1998, my (ex)husband and I went on vacation to Quebec City. During the height of the big ice storm, no less. I wanted to go to St. Ann de Beaupre to send my grandmother a postcard from there. If you are Catholic you probably know about the place. It is a shrine to Saint Anne, the mother of Mary, grandmother of Jesus. People have been going there on pilgrimages for ages to seek relief from physical ailments and afflictions. My grandmother had been there in 1939 (she had polio as a child that left her lame). I knew she'd appreciate that we had made a stop there.

The church that is there is really a gorgeous piece of work. We went into the church and were the only ones. We walked around, admiring the structure, the tiles, and amazed at the number of crutches, canes, and orthotics that were tacked to the front pillars, left behind by people who had been "miraculously" cured.

The next day, as I was brushing my hair, my right arm felt kind of weak. And I was tripping over my right foot.; I was having trouble holding my toothbrush and even writing. We returned to Halifax and I went back to work, but went to see my family doc about the increasing weakness. She told me to come back if it got any worse and she would try to get me in to see someone. Two days later I was back in her office and she was on the phone to a colleague who saw me at the hospital that afternoon. At 5:45 that evening the neurologist was telling me I had MS. A couple of hours later, I was telling my parents that it was a little ironic that my symptoms began the day after I had visited St. Anne de Beaupre. And that's when it hit me.: God really IS an iron.

My grandmother received the postcard and just loved it. But the entire family was sworn to keep from her my diagnosis. She passed away a year and a half later and I like to think she passed into heaven dancing a Sottish jig and then, upon discovering I had MS, giving God a piece of her mind about that. My grandmother had a wonderful sense of humour, but I doubt she would have appreciated the irony.
"I went to St. Anne de Beaupre and got afflicted." - Shauna

Sometimes the MS journey is smooth, other times bumpy. Sometimes it is scary. Sometimes it is frustrating. Sometimes it is humbling. Many times observations of how an individual handles the bumps along the way, mentally and physically, can become inspirations for others. What follows comes from one such moment.

While having a moment...., Linda of BRAIN CHEESE penned the following poem. I thank her for giving me permission to shed a few tears of my own.

Barbie & The Milk Proverb
Let me cry
Over my spilled milk.
It is not the milk
I grieve,
But loss of
The simple act of
Pouring
Liquid into cup.
How I take for granted
What used to be
Mindless tasks
Of rote memory.
My flesh no longer
Feeling the smoothness
Of the cup
Beneath fingers
Weakened by disease.
These foreign appendages,
Stiffly positioned
Like arms
Hanging from a
Plastic doll,
Serving no purpose.
Barbie has no brain
To bring these
Hands
Back to life.

At BARBARA'S TCHATZKAHS, one can find important topics and articles highlighted by Barbara who often adds a personal touch. Here is one of those posts in which she asks the question - "Why Doesn't My Doctor Know This?" and finds a possible answer an article by Dr. Holtorf which she republishes on her blog. Go there to read the answers.

I found this out 12 years ago when trying to get a diagnosis other than "its all in your head" for the reason I was: paralyzed at the time on the left side, unable to eat, in excruciating pain that defied words, unable to walk more than 2 feet without falling over, and running a fever that would not go away.
When a doctor who knew what she was talking about looked at the already done CAT scan and blood work? My diagnosis jumped out at her. She was appalled that it was missed but not surprised.

Other doctors? Dismissed it as nothing simply because they didn't understand it or were uninformed.Because they were uninformed? stupid? unwilling to deal with a chronically ill patient? pressured by the insurance companies to get rid of chronically ill patients? or all of the prior?

Top Ten Things to Do Right After Being Diagnosed with Multiple Sclerosis 

by Diane J Standiford

The following suggestions are from a person (me - Diane) diagnosed with MS in 1990. They got me through the first days and continue to help me thrive while under the influence of this chronic, progressive disease with no cure. The rare cases of MS will be benign or rapidly progress downward; but the chances of YOU having either of those cases is as likely as winning the lottery. The following suggestions are for all the rest of us. Together we will make it through and just maybe find beauty where we never dreamed it might be.

• Do not PANIC. Life is full of bumps. This will just be another one and you will land safely on the other side.
• Rejoice. You do not have a brain tumor. MS will not kill you.
• Grab some MS brochures on your way out of the neurologist’s office.
• Call your friends, and loved ones and explain what you found out. They will follow your lead from here on out.
• Start learning about multiple sclerosis. Learn to spell it. If you have a computer, begin looking for MS information sites like the National MS Association and your local MS Society. Search MS Blogs for personal stories from people just like you.
• Reach out to people for help dealing with this new part of your life. There are social workers, occupational and physical therapists, naturopaths, all waiting for your call.
• Talk to you. What is your biggest concern? Make a list. Prioritize and begin to take action. There is no concern that others with MS haven’t had, and know that all can be handled without the world stopping from spinning.
• Write in large print on a large poster board: “I will be flexible.” (This will be necessary both physically and mentally) and “I can be certain that nothing is certain.” That is especially important for type-A personality types. You can still feel certain (of uncertainty) and you can stay in control. (Of your knowledge that you no longer have control of your body.)
• Prepare. Prepare yourself by accepting all your new physical, emotional, and mental changes---women, recall when you got your first period; men, recall when your facial hair first needed shaving---you got used to the new you. You accepted the changes because they were not going way anytime soon. Prepare your family, friends, and co-workers; educate them. I know this is controversial; but sooner or later you will need their help. This leads to…
• Become an opportunity for others to become more loving and giving.

Thank you Diane for such great advice. And while navigating the bumps, I hope that you are also out there living life. On a recent Saturday I enjoyed living despite my fulltime companion, Multiple Sclerosis.

To combat fatigue, I used my handicapped placard and took a long nap between events. My Sweetie and I arrived at the second event of the day more than an hour after it had begun, but that was fine. Sure I got so fatigued in the evening that I could hardly stand steadily, but that was not a problem (although I was winning that 2nd game of pool after having won the first one too - darn MS). We left the party early, but so did those who followed right behind us.

Flag Day, Graduation, Ethiopia 

- A Day in the Life of Lisa Emrich

The “Stars and Stripes”, the official National symbol of the United States of America was authorized by congress on that Saturday of June 14, 1777 in the fifth item of the days agenda. The entry in the journal of the Continental Congress 1774-1789 Vol. Vlll 1777 reads “Resolved that the flag of the thirteen United States be Thirteen stripes alternate red and white: that the union be thirteen stars, white in a blue field, representing a new constellation.”

[from The National Flag Day Foundation]

This morning I attended the graduation ceremonies for one of my high school horn students. She had received an award and each year the recipient of that award is invited to perform at graduation. So a brave hornplayer, Leslie, followed the valedictorian's speech and the commencement speaker by performing Eugene Bozza's Chant Lointain for Horn and Piano. I played the piano part. She rocked!!

One interesting thing that I noted occurred near the beginning of the proceedings as the choir sang the National Anthem. All heads were directed at the humongous flag hung on the gymnasium wall, but maybe only a third of the attendees had hand over heart. Not even all of the faculty members made this small gesture. Perhaps observing whether someone places his right hand across his chest has become less a symbol of patriotism and more one of cultural indoctrination. I think that it has less to do with respect than it does outward signs of conformity.

A second interesting tidbit came during the invocation. First an official school invocation was read; it was also printed in the program. Then three students read verses from three texts. One young man chose a verse from Joshua in the Old Testament of the Bible. The verse chosen by a second young man was recited in the original Sanskrit before he provided the translation. Then a young woman recited a Hebrew verse and it's translation. An inclusive collection of faiths and beliefs represented.


Then the kicker. As the Head Master, this is a private school, was sharing bits about the graduating class he mentioned all of the college applications, all of the acceptances, all of the honors and scholarships. But the one he saved for last was the announcement of a senior who had been presented her commission to attend the United States Military Academy at West Point.

That honorable graduate is none other than my horn student, Leslie. Way to go girl!!

In the afternoon, my Sweetie and I attended a graduation party for the son of one of his co-workers. What a party that was! Wonderful bounty of Ethiopian cuisine, including a traditional honey 'beer' made fresh by the host. Did I mention food? Lots and lots of food.

Later in the evening - I believe many guests were staying the night - we shot some pool and enjoyed music of which neither of us understood a word. The father of the graduate played some music videos in the background which showed copious examples of traditional Ethiopian-style dance. Well, can you see where this is leading?

A drink (coke) was taken out of my hand while I sat in a cozy armchair and I was recruited to join the dancing. OK. I don't dance. Never have really. But many, many, many eyes were on us in that grand basement. So I did my best at replicating the shoulder-shrug/shake and arms bowed just so of a native Ethiopian woman. Out came the video cameras I'm embarrassed to say and much laughter bounced around the room. I even grabbed my Sweetie to share in the embarrassment. I'm afraid their friends and family will be talking about the party during which the only non-Africans joined the dance.

Now tell me honestly. Does it matter that in one day I celebrated American patriotism, Christian scripture, original Hindi Sanskrit, Hebrew Torah, and the fellowship of a mix of Muslims and Christians? Such is life near the Nation's Capital.
T

oto. We are definitely not in Kansas, I mean Oklahoma, any more.

This concludes the 13th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on July 3, 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 1, 2008.

Thank you.
Comments for this post.