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.

Sincerely,
Lisa Emrich

Thursday, July 30, 2009

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


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]





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.

Thursday, July 16, 2009

Carnival of MS Bloggers #40

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

Perseverance, Compliance, and Supplements


I have been opening the waterworks to the strangest songs on the radio. This would not be a bad thing except I only listen to the radio while I am driving and it makes for a weird scene.

I am male, 6'3" tall, about 290 pounds and drive an F150 (pickup truck for you non truck types). A red one. As I have pointed out, in a comment posted on a great blog (Living Life With Sarcasm, Kids, and MS), I have been doing this and getting some strange stares at stop lights. I mention this because it is helpful to put an image in your head.

Ok, so I was listening to the radio when an Elton John song, Don't Let The Sun Go Down On Me, came on. Sure enough about 5 or 6 notes in the tears started rolling. As usual I felt more than a little embarrassed, because we all know real men don't cry (riiiiiight!), but then it hit me. BAM! Another car.... no, not really. I am being reminded of something I had forgotten.

My mom, may she rest in peace, was a huge influence on me and my musical choices. She taught me that all music had something to offer and was worth listening to. Even to the end we both agreed that rap was ok to not like but I have some on my iTunes account and my iTouch (Not to mention Spice Girls, Aqua, and Toni Basil but that's another post). I remember when I was in elementary school and getting ready in the mornings. Mom would fix us some oatmeal (or something that I remember being oatmeal but could have been boiled paper for all I know now) and have the stereo playing. It wasn't always Elton John but it is his music that stands out in my memory.

She seemed to smile more when she listened to him, hum a little and even sing softly to herself. It is this memory that really stands out in my mind and quite possibly why I have a particular affinity for anything done by Elton John. While so much of my childhood is lost in an ever expanding fog these memories stand out in sharp contrast. To be honest I could not swear to you they are real anymore than I can tell you a blackhole is real. To me it is real and that is all that really matters.

My mom died in 2006 after a very long struggle with cancer. The last 8 months of her life was spent confined to a bed set up in the living room so she could be at home living with us instead of relegated to a nursing home or stuck in a back room forgotten. The last 5 months or so she could not speak or move except for a forced smile, the faintest of nods, or the grip of a titan when I would hold her hand. My father and I, along with the angels from Hospice, took care of her. The one thing she loved, even then, was listening to the radio and I do know that when any Elton John tune came on she seemed to lose herself in the music. Perhaps she was remembering something like I did or maybe even a childhood memory of her own came to keep her company for those few minutes.

This is the first part of why I am crying so much lately. I miss her dearly and would give anything to see her one more time. The second part is my MS. I am only 7 months into my diagnosis (Though I believe I have been living with the disease for more than 6 years at this point) and I am having a little trouble coping with the future. The song in question is emotional to me because of the lyrics and they do mean a lot to me.

Lyrics copied from eltonography.com

I can't light no more of your darkness
All my pictures seem to fade to black and white
I'm growing tired and time stands still before me
Frozen here on the ladder of my life

Too late to save myself from falling
I took a chance and changed your way of life
But you misread my meaning when I met you
Closed the door and left me blinded by the light

Don't let the sun go down on me
Although I search myself, it's always someone else I see
I'd just allow a fragment of your life to wander free
But losing everything is like the sun going down on me

I can't find, oh the right romantic line
But see me once and see the way I feel
Don't discard me just because you think I mean you harm
But these cuts I have they need love to help them heal

I guess it is true that each person takes away their own meaning from a song. This song especially reminds me of mom and the struggle I have to face with my MS. She fought her cancer to the very end. She never once said she would lose to it. Even when the meds made her loopy she fought. Regardless of the fact that the cancer was doing things to her she could not control she never gave up. She was a strong woman with a heart the size of the universe even down to that last day. I remember feeding her breakfast (A little bit of scrambled eggs, toast and orange juice). She could not talk but her eyes spoke volumes. There was a fire that burned in those eyes that I am reminded of when I hear songs she loved or would have loved. She lived to the very end.

That is why I am crying right now. I will not give up without a fight. I will not let her down; not now, now ever. MS may be doing things to me that I can not control I will not let MS control my life. I will still live each day as hard as I can and I will do it for myself, for my friends and family but most of all for the memory of my mom. To truly be alive you have to live no matter what your circumstance and to do anything less is giving up.

She didn't.

Why should I be any different?


by Webster

All these new drugs we now have for MS - Avonex, Betaseron, Copaxone, Rebif, Novantrone, Tysabri - the list goes on. Not one of them promises to make us feel better. As a matter of fact, many of them tell us to expect to feel worse (with flu-like symptoms)! But still we endure the injections, IM or SubQ, weekly, several times a week, or daily, or the monthly infusions which offer even graver possible side effects, some of which can kill you.

Still, most of us take one, either out of hope that it will slow our pregression as promised, or out of fear that if we do nothing we are surely screwed.

I held off for several years because I was doing well, and because I was on Medicare. I simply couldn't afford any of them. Also, I wasn't charmed by the meager benefit I felt they promised. Basically, they help one third of the people who take them slow their MS by about one third (of projected outcome). That sounds like a crap shoot to me. Still, I signed on.

I was prescribed Avonex first. I went on it for a year, then my insurance stopped covering it, so I went off for the next year, then it started covering it again, so I went back on it for another year. Guess what happened to me? Though I never had any side effects at all, my relapse rate went from about one every three years to three in one year! With residual loss of function. After sixteen years of being free of needing even a crutch, I became once again dependant on one. [For the sake of full disclosure, I now use one crutch in my house and a walker with a seat out in public; and a w/c for distances.]

So, now I refer to these DMDs as Drugs of Mass Destruction.

Still, out of both hope and fear I give myself an injection every day of Copaxone. Some shots leave a bruise, others a lump, and they all leave a sore spot which lasts for anywhere from 20 minutes to ten days! For me, the shots on the thighs are the worst. The ones on my belly or "muffin top" (heh) are the easiest.

I am back to having just one relapse every year or 18 months, and with IVSM, I recover from them completely. May my luck with that hold out, because my relapses affect my ability to walk the most. While I don't fear once again being wheelchair dependant as I was during my first 2 1/2 years with MS, I do fear the inaccessibility of my house. My bathroom door is only 19" wide! Hell, I can't even get my walker through it without folding it up a bit.

Because of that alone, I will continue taking my shots, and hope for the best. The worst is too painful to contemplate.

Announcement:


I wanted to announce that my new blog is set up and ready to go. It is my hope that you treat it as a resource when you are looking for information about vitamins, minerals, supplements, and diet.

Come back often for your curiosity. There will be anywhere from seven to twenty postings per month, as my time allows. They will be dated and numbered.

Although it is a blog for everyone, a lot of it is geared toward those of us with Multiple Sclerosis, Rheumatoid Arthritis, and/or Crohn's Disease - but only as far as vitamins, minerals, supplements, how to read blood test results, and diets.

All of the information on the Vitamin/Supplement blog can be utilized by anyone looking for anything from RDA (Recommended Daily Allowances) to Blood Test Ranges. So as you can see, it is quite a bit of information there.

Please don't let the overwhelming amount of information scare you away. I put a search bar on the blog that can only be used to search that blog. So, I suggest that you use the search bar when you are looking for a particular item or items.

So for example, if you are interested in Recommended Daily Allowance (RDA) of a certain supplement or vitamin, you would type in RDA. Or if you were interested in Lab Test Values or Lab Test Results, you would type that in. All of the postings with those keywords will come up on your screen.

I hope this will inspire you to go check out my new blog. Drop me a note there and let me know you stopped by. Also, if you have an interest in something that is NOT on that blog, please comment so I can research it and then blog about it.

Thank you for your continuing support.


This concludes the 40th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 30, 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, July 28, 2009.

Thank you.
Comments for this post.

Thursday, July 2, 2009

Carnival of MS Bloggers #39

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

Honesty, Vision, and Perspective


Here is one of my favorite orange shots. I took it in 2007. it was one of my first macro shots that captured what my eyes and brain were seeing.

I loved the powder laying there, the pollen, ready to perpetuate the species.

I have always been fond of bright colors. Orange is one of those colors that I can not wear – it makes me look jaundice, as do browns, and yellows.

Noticing the little things, the small details that many pass by, comes naturally to me. I miss being able to hike somewhere and find the little hidden gems. Colorful moss on a rock, rusty old nails along a shore where a town used to thrive, and birds resting after flight.

Sometimes it really pisses me off when other bloggers with MS write about all the cool things they are doing. I get jealous. Then again the MS Societies pamphlets, videos, etc. usually show young, good looking people that relay a positive outtake – good PR? Trying to keep us positive?

I am not so positive about my vision doing wonky things. I hope sometime this summer my eyes will be clear and my balance and legs muscles will allow me to get out and snap some shots. My camera has the fully automatic mode but it just kills me to dumb down and use it.

I had a dream the other night were the orange flowers were turning into the orange logo’s of MS. I woke up thinking how crappy that was. There I was hiking up a hill and every time my lens was focused on the poppies they turned into out of focus MS logos! How suck-o is that??


Finding the Muse
by Nadja

I lay in the darkness but sleep eludes me.
A clutter of useless thought crowds my mind,
These worries wash me in discontent.
But there is no need for worry--

I shove aside all concerns and center my mind.
I escape this husk
Travelling through visions of creation
In this state, everything I imagine, I can create.

It comes to me within these visions--
Time is key
Take the time,
I can manifest each thing I imagine

Results become unimportant.
I am adrift in sensory images.
My hands caress this design I have crafted from old things made new
I feel the texture of the fabric beneath my fingers.

I am not troubled by the distance of my vision
I can see now that I will create this thing
It does not matter when
It does not matter how long it takes

Just the existence of each artistic vision
Ensures I will somehow create what I imagine
There are no words to describe it
Behind my closed eyes, it is entirely clear.

I can wait--
I just must remember the things I have fancied,
As I drift toward slumber
They warm and inspire me--


Choosing Our Perspective 
by Michael of Perspective is Everything

What is perspective? It is more than just how we view everything. Perspective is how we choose to view everything.

Do we really have a choice about our perspective?

We make decisions all day long: what to eat, what to wear, what to do, etc. We are in complete control over those decisions. Yet somehow, we think or have decided that there is a distinction between those seemingly ‘practical’ decisions and the decisions we make about the feelings that we have.

The fact is each and every one of those practical decisions is based on feelings. We even use language that confirms that we have control over these feelings. “What do you feel like eating?” “What do you feel like wearing?” “What do you feel like doing?” At a minimum, we all have to agree that we have control over at least some of our feelings. That leaves us with only one question: why is it that we control some of our feelings and not all of them? The answer is simple. It is because we choose not to.

Aren’t some of our feelings beyond our control?

Choosing not to have control over some feelings, serves some people very well. If we do not have control over something, than how can we possibly be responsible for it? There is a certain logic there, albeit flawed logic. The reason it is flawed is because it is not true: if we agree that we can control at least some of our feelings, then logic says we must also have the ability to choose which feelings we control.

As adults we make decisions all day long that are based on our feelings. The next question is what distinguishes the feelings that we control from the feelings that we do not control? Is it the strength of the feeling? Is it rage? Depression? Euphoria? Whatever the reason is, who determines the controllable feeling from the uncontrollable one. The answer can only by us, ourselves. Yes, it is true and it does happen that sometimes decisions are made for us. But no one other than ourselves can decide how to feel. In other words, we may not be able to control all that happens in our lives, but we are always in control of how we respond. We get to choose our perspective.

Perspective is deciding how we feel.

Only we can make the decision about how we feel. Only we can know the reasons or reasoning behind our decision. It may be that we don’t know the reasons why we feel a particular way. But whether known or not, our perspective is our decision. It includes every moment of our history, every feeling that we have ever had, the sum of all the experiences that brought us to this time and place. Our perspective is our choice and no one else’s.

Do we always exercise control over our perspective? No, because we are still human and still fallible. But knowing that we do have a choice and that we can often do better, may help us in choosing a better perspective.


This concludes the 39th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 16, 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, July 14, 2009.

Thank you.
Comments for this post.

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