Facing the Mirror - Living with Multiple Sclerosis

Use Your Voice - Help End the Medicare Disability Waiting Act

2009-04-18T10:15:00.000-07:00

Now is the time to use your voice or your computer to support eliminating the Medicare 24-Month Disability Waiting Period!

Image Source

The Ending the Medicare Disability Waiting Act (H.R. 1708/S. 700) was re-introduced in 2009,by Senator Jeff Bingaman (NM) and Congressman Gene Green (TX). If this bill passed it would completely phase out the Medicare 24-month disability waiting period over ten years. Immediately it would eliminate the waiting period for people with life-threatening conditions.

Contact your local politicians to take action. You can urge your Members of Congress to support this very important bill by Clicking Here

Medicare currently forces many people, living with a disability so severe that they cannot work, to unjustifiably wait 2 years before they can obtain any healthcare coverage through Medicare. There is an estimated 1.8 million Americans living with disabilities, including multiple sclerosis and lupus, trapped in this waiting period.

Americans who struggle with a chronic disease and disability have a safety net though Medicare when other health insurance resources are not accessible. Many who wait the 24 month period give up necessary medical treatments, stop taking their medications as prescribed, and quit important therapies that aid in their quality of life and independence.

Who knows...you might even be helping me in the future. This is my friend and I after my Solu-medrol treatment at the cancer center. There was no way that I could feel sorry for myself when surrounded by people who must endure much worse more often.

My friend and I after the Solu-medrol treatment. Notice the enlarged pupils (I took off my sunglasses so you could see), the widened grin, and the medical tag on my arm. I've learned that long sleeves prevent me from feeling self conscious about my injection bruises and provide a barrier in case I feel itchy.

Take action now by contacting you Members of Congress and ask them to co-sponsor H.R. 1708/S. 700!

Goodbye Copaxone....Hello Rebif

2009-04-14T13:38:00.000-07:00

I am not scared of needles; matter of fact, when I get blood drawn I feel more comfortable watching the whole process. Sounds weird, I know. I am not some needlephile, other than B-12 and MS treatments, I had never injected anything.

Perhaps if I had not started off with Copaxone, I might have different views on MS injection treatments. First off, Copaxone did not help to stop my relapses. This recently severe relapse showed 7 new spots on the brain, one large one enhanced, and one smaller one not enhancing. Previously there were only 1 maybe 2 possibly once active sites. The cervical area showed no signs of improvement but there were no new significant signs of growth.

I have quite a few spots on the cervical and a large bulge, thus all the chiropractic care and massage therapy. I have the numbness that travels down my arms and legs and nerve pain that can be so intense its crippling. Ontop of all of this now is this feeling like I am sunburned where I'm hot on the outside and sweating and cold on the inside. Plus my feet are on fire sometimes. Whenever I bend my neck there are electrical pulses that run up and down my whole body for a few minutes afterwards.

It is most likely the spots on my brain that are causing my eye problems. Not only am I highly sensitive to the light but I also have random fields of light that flash through my vision. To describe my vision, think of a wet dirty screen on a bright and sunny day. Everything is blurred, things are doubled, some parts are dimmed, and other parts seem like there is light shining through.

I have a pretty high tolerance to pain. Matter of fact, I have learned to adjust my pain scale to those of others. My Copaxone injections were becoming increasingly painful. My nerve pain caused each injection to feel like lightning bolts pulsing through my skin as the fluid spread. My body was marked with welts, discoloration, and missing pockets of skin.

I scheduled my life around these injections? I dedicated my life to making sure I took my shots everyday. Many times I didn't go out with friends because I wouldn't be home in time for my daily dose of Copaxone. I'm self conscious by the marks it left on my arms and legs, not quite sure if my skin will ever return to normal.

I did all this for this severe relapse that has taken a good portion of my vision? This was worth more permanent numbness and increased instability while walking? Yeah....sure. Me crying at night because my nerves were on fire from the relapse...Wasn't this drug was suppossed to reduce any flair ups and perhaps promote the healthier areas on the sites of demyelination?

Heck NO! None of that was worth it. If my recent visit to my NEW neurologist hadn't convinced me that things are only going to get worse until we get the damage from this relapse under control. By not taking something to help, like an Interferon, he was worried that more of my motor skills would diminish.

My walking is not great...I walk like I am beyond drunk, bouncing off walks like bowling balls off of buddy bumpers. I know I should be using my cane more often. But I'm not ready for that yet. I'll suffer through swollen knees and increased fatigue. Besides I have to decorate the cane to make it much more publically appropriate. The medical grey and weathered aluminum do not fit into the color codings of my life just yet.

After a series of in office tests the doctor was concerned about my overall loss of function on my right side. I happen to hide it very well, compensating with using my left side more often. He was very adamit about getting me on some form of interferon therapy to keep what motor skills I had and prevent any from getting worse. We talked about many options and we both agreed on Rebif.

I will keep everyone posted on what I think of the whole Rebif thing. I know that there are a lot more things that I have to say about my personal experience with Copaxone. For some people it works for me it did not. I just wish that doctors would listen to my symptoms and not have to wait until an MRI proved that I was right that things were off with certain functions of my body. Wish me luck on Rebif and stay tuned......

Everything's Gonna Be OK with Famous Faces of MS

2009-03-26T08:35:00.000-07:00

So maybe you think that you are the only one. No one knows what you are going through, how you are suffering, and what is going on in your head. But you are wrong. There are others around you that have had this disease and have learned to conquer and battle everything MS related.

Recently Montel Williams (an MS advocate and survivor) recently appeared on the Oprah Winfrey show. Of course I missed it! I read the transcript of the show to try and imagine what was discussed.

The most important part of his message on the show was how to climb up from the darkness of being diagnosed with the life threatening disease of multiple sclerosis. He even published a memoir, Climbing Higher, depicting his inspirational struggles with MS. Where do you go once you hear that devastating news that you have to overcome the devastating and debilitating that attacks the central nervous system (CNS). You can follow him as he describes his anger, frustrations, disappointments, fears, denial, and depression. Here is a link to his book, Climbing Higher available on amazon.com. I still have to read the book, so stay tuned for my review, being a person with MS and currently struggling through many of the same issues.

Many other famous people: athletes, actors, writers, teachers, and your neighbors may be trying to survive in their new life with MS. For years many go through life without even knowing that they have the disease. Symptoms are similar to such common things as stress, pinched nerve, anxiety, depression, hypochondria, and arthritis. Symptoms are often ignored and most go through life without even knowing that they are ill. Some even hide the fact that they have MS masking their symptoms from others out of fear, rejection, or even loss of employment. Famous People with MS

Actress and comedian Terri Garr battled the Multiple Sclerosis for many years. Doctors and specialists were mystified with her symptoms, numbness, tingling, loss of balance, memory loss, fatigue, and instability. She spoke publicly about her illness on in 2002, on Larry King. Then she moved on to be a paid spokesperson with MS LifeLines hoping to provide education, support, motivation, and inspiration to others. She lives every day with the idea that "Everything's gonna be okay" (EGBOK).

If those of us who have MS can wake up each day and think EGBOK, perhaps we can make it through the day. The process of waking up and getting out of bed is painful to some and impossible to others. Fatigue is one of the hardes things to battle with this disease. There have been times that it has left me almost shackled to my bed. Then...depression sets in, which makes it worse.

This is when you have to set short term goals. I'm going to get out of bed and pick 1 thing that needs to be done today. Maybe its doing the dishes, vacuuming the house, or paying bills. Whatever it is try and get up and do it....because EGBOK.....Everything's Gonna Be Okay!