Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Jeri of Fingolimod and Me has been very busy and created "the frankenstein of all blog aggregators" compiled from the MonSter Blog list posted at the Carnival of MS Bloggers.
"When Blogs Collide... good stuff is bound to happen!"
This MonSter Blog Reader not only provides one location from which to read the newest posts of all your favorite MS Bloggers, there is a search function which can cull through the entire (listed) MS Blogosphere to find you the really good stuff. And... you can "get all interactive with it." Readers are encouraged to add tags and provide meaningful labels for individual posts. Jeri says, "Somewhere down the road it will help others sort things out and find things they are searching for more quickly." I think this was a stroke of genius on Jeri's part which will benefit current and future MSers.
Next, the originator of the 100+ MS Blog list, Linda of BrainCheese, and the founder of this Carnival and compiler of the expanded MS Blog list, Lisa of Brass and Ivory, have each presented contrasting (although complementary) views regarding the MS disease-modifying drugs (DMDs). In response to a request from Stu asking that bloggers post his story - My Hiatus From My MS Medication, Linda and Lisa took different approaches. Lisa asks the question, "What happens if you skip your DMD?" But troubled by an inner voice which whispered, "you don't necessarily agree," Linda writes her poignant tale in - When We Don't Agree...Entirely... - definitely a must read.
Jim of Jim's DEEP Thoughts personally discusses lifestyle changes, getting healthy, and flexible spending accounts (FSA). Swimming is excellent exercise for those with multiple sclerosis and those without.
I am thinking about my commitment to swim again and I can't wait... I won't be able to swim until I get my ear plugs that will arrive about two weeks from yesterday. Being deaf and wearing hearing-aids, I can't afford to have ear infections that I often get when swimming, so ear plugs are great investments.
I have flexible spending accounts (FSAs) which allow me to pay for prescription drugs and doctor visits with pre-tax dollars. I want to use this for [YMCA] membership and according to the benefits list, I am eligible only if my doctor prescribes for me to exercise. In 2001, the IRS released its Revenue Ruling 2002-19, which states that certain health club service fees, not including health club dues, may qualify as tax-favored medical expenses. Such services must be prescribed by a physician for the treatment of a disease, including, but not limited to, obesity, heart disease, hypertension, high cholesterol, counseling for weight-reduction, nutrition, cholesterol, or hypertension, and type 2 diabetes. Physical inactivity are associated with 23% of health plan charges and 27% of national health care charges. I say, I need help to find ways to stay active that is financially affordable. Anyway, I am going to check with my doctor and see if she could prescribe for me to join YMCA.
Focusing on a different kind of prescription, Vicky discusses SEX while providing a personal warning - "Mum, you don't want to read this one." Vicky's Mum may not want to read this, but I certainly do because I can relate to the topic.
Sex is a topic that always seems to be talked about anonymously on the MS Society message boards and seems to be something people can be worried about talking about or ashamed. I understand why in most cases but I thought I'd share my experience seeing as it is a fairly common problem for people at some stage or other of their MS.WHOA: We stop this important broadcast for the following announcement. The steamy contents of Vicky's Sex post from this point on have been omitted to spare the innocent, but you can certainly read all the good stuff in its entirety here. Subjects include a tongue, a pet Rabbit, naughty text messages, nookie, afternoons, orgasms, and most importantly SEX.
Originally my problems were isolated to the left side of my torso and my lower legs. Then one morning I woke up and the numb feeling was all the way up to my bum and I was having to check with my hands that I was sat on the loo seat properly, I also felt like I had a permanent 'wedgy' which was really, really annoying!
I realised, having been to the loo that although I could feel the area around my genitals it was not a normal feeling - interesting I thought - but possibly not good. I went to the Dr shortly after this and was referred to a neuro - lucky me, no faffing, no 'its stress' just, go see a neuro.
I'm not sure when my other half and I next had sex but I am a big fan of getting my pleasure in - and I am not that easy to please! [...]
One commenter says, "Oh, and as a long time MSer, sex toys are a must!"
Remember, you heard it here. Sex toys are good for MSers.
New to blogging, Miriam is a Proud Mum! of three boys, six dogs, four hens, and multiple chicks ,who was diagnosed with MS on January 4, 2008. At her brand new blog, Miriam discusses a really bad relapse following a nice walk she took in the morning. I sincerely hope for Miriam that this was simply a pseudo-exacerbation which resolved itself in less than 24 hours.
Barbara of Barbara's TCHATZKAHS regularly features articles on her blog which spread awareness and knowledge on a variety of subjects. Her philosophy is described below:
There is a sin even greater than [speaking lashon hara], and one which is more widespread, i.e., the sin of refraining from informing another about a situation in which one can save him from being victimized—all out of concern for lashon hara… One who behaves in this manner, his sin is too great to bear and he violates, "You shall not stand by the blood of your brother." - Pithei TeshuvahIn "When the Disease Eludes Diagnosis," Dr. Barron Lerner discusses one of his longtime patients, Lucy, who feels she has a neurological ailment which has not been adequately diagnosed.
Although I hope to make further progress on her case, I have also told her that there may never be a definitive answer. Not surprisingly, she is feeling pretty frustrated with me.Barron H. Lerner teaches medicine and public health at the Columbia University Medical Center.
Why do doctors and patients often approach the diagnosis of disease so differently? Part of the answer lies in the concept of triage... [...]
Patients’ frustration may rise even more when their conditions are especially obscure. I once had a patient who complained of persistent drenching sweats that forced her to change her bedclothes several times a night.
Upon learning of this problem, I first went into triage mode, ruling out possible dangerous causes, including tuberculosis, a thyroid abnormality and rare tumors that release hormones. I referred her to a gynecologist on the chance that she was getting hot flashes decades after her menopause.
When all the tests were negative, my patient was understandably upset, even angry. “No doctor that I have spoken to has been able to tell me what it is,” she said, as I remember. She even called a doctor on a local radio show for his opinion.
I recalled this story when I learned recently that my longtime patient Lucy’s new neurologist was questioning whether she had multiple sclerosis, a diagnosis she has carried for more than 25 years. Since I have known her, Lucy has had painful and weak legs that necessitate a walker.
Rather than simply corroborating her existing diagnosis, this doctor had thought outside the box, noting that Lucy’s relatively stable condition — and her lack of brain lesions on an M.R.I., a test not available at the time of her initial diagnosis — warranted a new perspective.
At first, Lucy was excited too. After all, being told you may not have a serious disease like multiple sclerosis is surely good news.
But while the neurologist had correctly questioned the diagnosis, she had a harder time finding a new one. Lucy became discouraged. “I want to know,” she told me. “I point-blank asked the neurologist, ‘What is it?’ And the only answer she can give me is: ‘I don’t know. I’m not sure.’ ”
Eventually, the neurology team decided that Lucy had an atypical form of multiple sclerosis, one that caused unusual neurological symptoms and was present in the spinal cord but not the brain. Yet the doctors admitted that this diagnosis generated more questions than answers about Lucy’s prognosis and her future treatment.
While trying to be as sympathetic as possible, I find myself reminding Lucy of the limits of certainty in medicine. Despite enormous advances in technology, some diagnoses may remain elusive. I also told her that it was highly unlikely her doctors missed diagnosing a disease that could have been successfully treated. But she remains convinced that she deserves to know exactly what she has.
So we will continue to search.
In conclusion, a post which transcends summary or explanation.
THE SEVERED MIND BODY CONNECTION or HOW MS TRIED TO STEAL MY SOUL by Diane J. Standiford
"When it comes to multiple sclerosis, I really have no feelings. No, I really have NO FEELING. None in my finger tips, none in my legs or feet or front or side; if you do not have a neurological malfunction, then you may not understand all that takes from me. Live a day in your life and imagine. Imagine the tulip petals are pretty but they are not soft and smooth and make you believe in a God. Imagine you can no longer feel the warmth of your lover’s hand in yours or the incredible love within the hair on their head.
An adorable puppy runs up, tail wagging, to greet you; and you cannot pet it or hold it like a baby in your arms. Memory tells you there is joy in the experience, but again you can not feel it. You watch as others run into the refreshing waters of a beach, but know it holds no cool wetness for you.
Your feet are in socks, shoes, yet; you must look down to be sure they are on the floor. Each step you take is risky business; you are so grateful you can see when once you were legally blind. Friends pass around towels or new sheets, a cashmere sweater or purple mink stole and all who hold them “OOOUU,” and “AHHH,” when your turn comes you force a smile for objects that are not in your memory; they must be oouuful and ahhful. It is always easier to force a smile than explain that you have no feeling because you have MS.
Okay, you can stop imagining. This is my life, not yours. It wasn’t always this way. Sometimes my desk felt like water. Sometimes my leg felt like it suddenly was immersed in water. It took me many years to understand how this was possible. Did you ever hear the expression, “Running around like a chicken with its head cut off?” My mother was raised on a farm and one of her childhood memories is of a chicken that her Pop cut off the head of and it “…chased me!” That chicken had nerve. No, it really had NERVES still firing briefly.
My nerves have gone astray. How do I get my life back or some semblance of? Dangling participle aside; no, I really mean ASIDE; I would need to remove my body from the messages that had turned me into an alien from that planet with life that we have not discovered yet. I would have to set my body aside from my brain and the system of nerves attached to it.
First: Take inventory. What is reacting to the world as it used to? I can sing, pitch perfect. I can speak and be understood by other humans, animals, and birds. But birds can’t speak…I can communicate with my eyes, my vocal tone, and maybe, just maybe, something else. I can remember. I can hear, I can see with glasses. I can taste food and liquids. I can become angry, sad, passionate, determined. I am loyal, loving, kind, generous, and HUMBLE—HA! I have my sense of humor! This list is too long. What I still have is much greater than what I’ve lost.
The answer is so simple. I must remove ME from my body.
Looking around the room, following my long-held philosophy about life (some call this religion or love of God; I don’t see myself going that high up, it is allowing fate to enter my brain and soul—being a sponge to that which is around me) to seek the answer before me, I see two helium birthday balloons clinging, unmoving, to the wall and each other. Then I look to my left and there, tied to a vase of purple tulips, is another helium balloon which is turning slowly side to side, unfettered by friction, as it is alone by no wall.
If I do not remove me from my body I will become immobile like the two balloons attached to their body’s natural reliance on the physical world to define them. They are red and green, rather boring. The other balloon, which is now practically spinning, is covered in glitter, swirls, and a shiny slice of cake with lit candle and in writing declares, “Happy Birthday.”
So, that is what I did many years ago. I separated me from my physical body. Using memories, I remembered how refreshing water is, how cuddly a puppy is and how sweet the feeling of my lover’s hand in mine.
When my left hand began to experience atrophy (tissue wasting away); and my neurologist told me it could not be helped, I removed it and let my brain take over; I learned long ago that me is in my brain. Now I tell my hand via the verbal part of my brain (left side) to place the thumb here or press the index finger there. (My left index finger just typed those last three words, something it has not been able to do for a year.)
Having my brain trace the upward movement of my right leg, I then had it go through each step on my left leg until it reached my foot---which MOVED! My problem now is this process tires my brain, which is already working with a short shift (many axons have passed away, others keep calling in sick and believe ME my brain is not happy about it), so it rests a lot; BUT it is building a new pathway every time we play the game. I can actually FEEL my brain operating. Jeopardy, Cash Cab, the first note to an unfinished song---it goes crazy! It races through “file drawers,” 100mph; until I finally have to insist it go into sleep mode so the body can rest and it is free to keep searching then. (Sometimes it gets so excited it wakes me up and the body shouts the answer to some obscure question as if I have Tourette’s.)
The body was, of course, not thrilled with what it felt was a defection by me and my brain. The body was without purpose. This caused uproar between the body and me. It felt useless and betrayed. Well, I went to sleep and let them duke it out.
In the morning the body wanted to create. I just laughed. My creativity was in acting, public speaking, a spit of writing. What did you have in mind, body? (Uh-hem.) First it wanted to color. Disaster. Then it wanted to do puzzles. Nightmare. Model building. Guitar playing. Singing, got as far as looking for instructors, advertised in papers, at colleges---no takers. My body was getting worse with each failure. Then my brain got upset and told me to start a blog. I had no idea what a blog was, but my brain assured me that it would handle everything. (Yeah, right.)
Then a writing challenge beckoned and the body wanted to go for it; the brain agreed to help out, so what choice did me, er, I have? When I write my MS seems to disappear. The brain takes over and carries me anywhere it wants. In a story I walk, run, feel a worn leather saddle or a cool spring breeze. A part of the me without MS can be in any character. I can even fly over the rainbow. There is a freedom when writing, telling a story, that releases all illness from my nerves and brain. My one finger typing was joined by another. When I am finished, there is completion and cooperation; and a sense of a job well done. MS? We had forgotten.
And there you have it, I have no feelings, but with my body, my brain and me working on our own, but together toward the goal of some normalcy, we are able to see our goal as attainable. The mind/body connection can be severed and still be two separate entities working together. Can you feel me?"
And with Diane's inspiring post, we conclude the 8th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on April 24, 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, April 22, 2008.
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