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.


  1. Thank you so much for featuring my writing. I am excited to be apart of this loop because it has provided me with so much support and understanding. Thank you

  2. Lisa, another great Carnival.

    Casey, I left a comment on your blog. You are not alone.

  3. Good posts! Happy Friendship day to all!!