MS Pill Man

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This is just about what it takes for me to feel any sort of normalcy. I have pill cases {(my Dragon naturally speaking voice recognition program just wrote in pillowcases lol) for morning, afternoon and night. Since I have secondary progressive multiple sclerosis there are no injections available in order to slow down the progress of this God damn mother freaking disease.

And so all of the pills I ingest are to take care of symptoms. For example the gabapentin and the baclofen are to relieve spasticity and stiffness and spasms and feelings of being electrocuted in the middle of the night. That big red one I’m taking right now is for depression and you could see that he is very big because so is my depression.

There is also the pill that is stuck in the middle of my  ear that I take to relieve pain. Pain in my shoulders, pain in my legs and feet and the pain in my ass, and I am not kidding. I have to go to see a pain specialist in order to get pain medication that helps me and since it is a class III narcotic I have to be very careful about the times and dosages of that medication and I have to see the doctor once every three months to make sure that either I nor she, the physician, do not get in trouble for illegal use of drugs. The wonderful thing is that I am able to sleep relatively comfortably considering that I am paralyzed on my left side and have to be put into bed by my loved ones.
Now,  interspersed into that pile of pills above is a whole slew of vitamins and supplements. Every single day, without fail. Okay, maybe I miss a dose of vitamins here and there but NEVER do I miss  a dose of pharmaceutical drugs. Without them I am an uncontrollable uncomfortable mass of painfully spasming flesh. And it is not pretty.

The one medication that does the most for me to help with fatigue is no longer covered by my insurance company and I cannot afford the $1300 per month that would come out of my pocket if I were to buy it myself. And so I do without. As with everything, I have adjusted to the state that my body is now and generally don’t whine about it very often.

I am going to again enclose the article that was written in the newspaper about Potty Mouth, the book that I have written.I am donating a percentage of book sales to the MS society and to the best that I can to help find a cure for this beast so that no one else has to ever take pills or injections because for some ungodly reason they have gotten MS.

The Paramus Post - Greater Paramus News and Lifestyle Webzine

Thursday, July 26, 2012, 05:32 PM EDT

‘There Is Life With MS,’ Says SurvivorBy mel fabrikant    Saturday, July 07, 2012, 11:06 AM EDT

New book gives hope to others with disease. The National Multiple Sclerosis Society reports there are approximately 400,000 people with Multiple Sclerosis (MS) in the U.S. today—with 200 more people diagnosed every week.

Renae Clare is one of these 400,000 who does not let her condition bring her down. She chose instead to share her story of living with MS for 40 years in her new book, Potty Mouth: A Woman Disabled with Multiple Sclerosis Bravely Meets Life’s Challenges with Courage, Wisdom, and a Profane Sense of Humor, hoping to inspire others living with the disease
“I live life in a wheelchair and yet I am optimistic about the future and focus on the things that I am able to do, and not on the things that the disease has taken away,” Clare says about why she wrote her book. “My mission in life is to help as many people as possible.”
Potty Mouth began as confessions and thoughts during therapy sessions dealing with Clare’s emotionally-devastating divorce and her difficulty dealing with the incurable and debilitating disease. Her doctor recommended writing things down as her MS often made speaking difficult, and as Clare continued this form of therapy she realized she had a lot to share.
Charming and humorous on paper as well as in person, Clare offers insight into dealing with a life-altering disability, enduring family hardships, and all the while picking up the pieces and finding a purpose in life.
“I want people to feel inspired, to feel that there is hope at the end of a long dark tunnel, to know that going to some sort of therapy will be healing and will help them get on with their life and find some hidden talent and purpose within,” Clare says. “I want people to feel hope.”
Potty Mouth: A Woman Disabled with Multiple Sclerosis Bravely Meets Life’s Challenges with Courage, Wisdom, and a Profane Sense of Humor
By Renae Clare
Paperback, $19.95
Kindle, $7.69
ISBN: 978-1-4685-6240-8
For more information visit www.amazon.com , www.barnesandnoble.com  , and www.thepottymouthbook.com

About the author
Renae Clare grew up on a farm in North Dakota and lived in New York for 37 years before moving to Carrollton, Texas where she now lives with her daughter, and has a son who lives in Houston. Clare was diagnosed with Multiple Sclerosis in 1972 and has been going to therapy sessions since 1998, from which she gained much of her influence for her book.

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7 Responses to MS Pill Man

  1. Henry Bonk says:

    I’ve had primary MS for 20 years or more and Ill be 75 in September. As you may or may not no there is no medication for PPMS. My medications are kept to a minimum although I’ve triede a number of things in the past, but now take Baclofen to address spasticity and siezure med. I’m from the school that less is best. I’ve relied on ccupational and phsical therapy in order to retain function. I use a wheelchair mostly, but still can walk short distances with a walker as long as someone follows with a wheelchair for safety reasons. I intend to stand and walk with a walker untill walk assist devices from Toyota and Honda are availabe in the U.S,

    • renaeclare says:

      Wow! What an inspiration you are! I know what you mean, keeping the medications to a minimum. For the first 25 years of my disease I don’t think that any medication that all until the injections came out and I tried them for a while with no real results. I had always try to stay away from any medications and was one of those people who very rarely even took an aspirin. I am now 60 years old and I hope for a good many years to come. When I hear of someone like you who is sharing your story still.

      I’m not sure which assistive devices were talking about from Honda and Toyota but I’m going to research that. It does seem that things take longer to reach the US.

      I wish you all my best and thank you so much for your comment. It means a lot to me and I do hope that you will keep in touch. Sincerely, Renae

      • Henry Bonk says:

        And I thought that I had a lower back problem years before the MS diagnosis. The Honda and Toyota walk assist devices should be easy to find. The Honda device was shown also on one of the morning TV shows in NYC.

  2. renaeclare says:

    Thank You Henry, I will definitely look that up. So much to learn yet so little time! I hope you are well.

    • Henry Bonk says:

      You’re welcome Renae. I would like to send you an article, “What Are The Odds?”, involving my orietation week college roommates. I need an e-mail address. Then it’s easy to atached the articlle from my files.
      Henry

      • renaeclare says:

        Wow Henry! I read the articles that you sent and that is absolutely amazing! I can’t even imagine what the odds are that the three of you will all end up with MS; and then to find out after so many years have passed. It truly is to stuff that movies are made of! I just love that whole thing and I am honored to know you Sir. Under going to go back and reread it because I’m sure there’s a lot of things that I missed. Do you mind if I that if I forward this article to other people? Thank you so much for sending that to me. I just love it!
        Renae

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