Against Medical Advice

There is no doubt in my mind had I not had insurance the hospital would have booted me out when all indications were that I was stabilized from the reaction I had with Copaxone and tests showed that I did not have a heart attack. The only reason they wanted me to stay for further heart tests was because of my family history of heart disease.

When are doctors going to realize a person who lives with a chronic illness know their bodies better than anyone does? Most importantly, chronically
ill people know when they need medical help and are intelligent enough to seek
it when needed. If you are like me, the less I have to seek medical
attention, the better off I am.

Give me a break, do you honestly think I care I had to sign a piece a paper that I was leaving against medical advice because I did not want to stay for a freakin stress test the next morning. The way I saw it the hospital just wanted to get more money from my insurance for an overnight stay...I HATE STAYING IN A HOSPITAL. Did they really think I want to be poked and bothered every four hours when my vital signs were stabled, just to have a stress test the next morning? Hospitals recommending and insisting on unneccesary hospital stays is one of the problems with our health care system.

I experienced my third Immediate Post Injection Reaction after my Copaxone injection. Seconds after pulling the needle out of my thigh and grabbing the cotton ball to stop the blood that oozed from the injection site. A volcano erupted inside my body. It felt as if the medication exploded. I literally felt a burning rush travel up the top half of my body and slowly flow back down to the soles of my feet. My eyeballs rolled backed as my chest tighten with every rapid heartbeat. I was scared out of my mind, I could not breathe, thank God, my husband felt something was wrong and came upstairs to check on me.

As he dialed 911, I prayed for calmness and not to fear what was happening. I knew in my mind it was an IPIR experience and I held on to the belief no one ever died from one. The grip on my chest eased to the point I could breathe a little better. I thought my experience was about to be over until the severe itching and whelps start popping up over my body and a strange taste entered my mouth.

I start cursing living with MS and the medication that caused the hell I was living now. I could not understand why this was happening to me again. I thought IPIR’s were so rare that the odds of me having one again were slim to none. Well, the joke is on me. I was told that when I experienced my first one in 2007, yet I had another one months later in 2008.

On the transport to the emergency room, my tongue felt as if it was swelling and the itching made me want to peel my skin off. The EMT feverously injected an IV in my veins and shot me up with Benadryl. By the time I made it to the ER, I was drowsy and in a better state of mind. Hours later after an infusion of Solu Medrol, my body felt like its regular multiple sclerosis living self. The ER doctor asked how I felt and I told her the truth, she informed me that my test came back good and my vitals were stabled and I could go home after she consult with the ER doctor in charge.

I could have been knocked over by a feather when she came back in and said, "We want to keep you for further tests." "Why!", I asked. She said, "There are other test that they wanted me to take in the morning to check my heart." There was no need for me to stay to take further heart tests the next day, so I refused to stay. I explained to them, "I have a cardiologist and I have been given all required test because of my family history last year in May. You asked how I feel and I told you I feel much better than when I arrived, my vitals are stabled, and the heart enzyme blood work came back indicating all is well, therefore, there is no need for me to stay overnight for further heart testing in the morning."

I kid you not they were trying to put the fear of God in me. They went on and on about the chest pain I had with the IPIR and it was in my best interest to let them perform further testing because of family history. I was getting annoyed with their persistence about staying in the hospital. Why it is medical personnel do not really listen to patients who are in tune with their health situation and body is beyond me. Did they not hear me! When I said, “I recently had the tests they wanted to perform done by my own cardiologist and I will call him first thing Monday morning to follow up on why the wanted me to stay in the hospital.” The last place I wanted to be was in a hospital and my birthday was coming up Sunday, when I knew all was right with me again.

This may sound strange, but I was elated and confused knowing I was not going to die after having an IPIR. I was and still am confused on what to do about a disease-modifying drug to slow down the progression of my multiple sclerosis. Should I continue taking Copaxone? I know Copaxone is working for me because I have not had any new brain lesions and my exacerbations have been less lately during the years I have been taking Copaxone. Unfortunately, the IPIR reactions are worse each time I have one. I am obviously, in that rare percentile that experiences IPIR while taking Copaxone. It is a terrible experience and I do not like going through it, but who is to say I will not have worst experiences on my other three choices of a DMD. I thought about not taking anything at all, but after talking with my Dad. I promised him I would continue taking a DMD for my disease For now, I am going to take some time off from taking my daily injection until I make a decision on what I am going to do.

Anywho, all is well for now and I enjoyed my birthday with my family at home :) I will make a decision soon, but I am leaning towards staying on Copaxone because at least I know what it will do to me unlike the other DMD's.

My Goodbye Letter From Copaxone

April 18, 2008

Dear D:

Thank you for taking the time to talk to us the other day about your experience with COPAXONE (glatiramer acetate injection). We're sorry to hear that you are no longer continuing with your daily injections. We know there can be many concerns and issues for maintaining therapy, and sometimes these concerns may seem to outweigh the benefits of therapy.

Although you are no longer on COPAXONE, you are still eligible to receive Shared Solutions program offerings that are not specifically designed to support COPAXONE use. We will make sure you continue to receive these materials. We wish you well in managing your multiple sclerosis and encourage you to utilize the support of your local chapter of the National Multiple Sclerosis Society. If you and your doctor decide at any time that you should resume COPAXONE, please contact Shared Solutions so we can provide you with materials and support to help you maintain therapy. Take care and good luck.

COPAXONE is indicated for the reduction of relapses in relapsing-remitting multiple sclerosis.

The most common side effects of COPAXONE are redness, pain swelling, itching, or a luomp at the site of injection, flushing, chest pain, weakness, infection, pain, nausea, joint pain, anxiety, and muscle stiffness. Thesee reactions are usually mild and seldom require professional treatment. Be sure to tell your doctor about any side effects.

Some patients report a short-term reaction right after injecting COPAXONE. this reaction can involve flushing (feeling of warmth and/or redness), chest tightness or pain with heart palpitations, anxiety, and trouble breathing. These symptoms generally appear within minutes of an injection, last about 15 minutes, and go away by themselves without further problems.

Warm regards,

The Shared Solutions Team


The Shared Solutions team and Copaxone have been great to me over the years. I experience all the common site effects except (infections), I was becoming tired of the common side effects, but I knew I had to suffer the bad to benefit from the good, which was slowing the progression of my multiple sclerosis. Like a trooper, I suck it up and injected myself daily.

It was hard to deal with the common side effects over the years, but I DID IT. What gets me is how the Shared Solutions Team nonchalantly referenced what some people experience besides the common side effects. As someone who just experience it a second time Shared Solutions need to freaking stop referencing an IPIR experience nonchalantly.

Speaking for myself, it is one thing to get use to the common side effects, but they are out of their freaking minds if they expect ME to get use to the "what some people experience". They also fail to mention when in what some people experience is your body could break out in hives. Maybe enough people has not experience a break out of hives when going through an IPIR experience that last longer than a freaking fifteen minutes to mention it.

I thank the Shared Solutions Team for offering their continue support, but I DECLINE to continue my association with you.

I NEVER WANT TO SEE ANOTHER VIAL OF COPAXONE IN MY LIFE! I been there and done that and I do not believe in backtracking. Copaxone has done all it could do for me and it is time to move on. I done nothing but think about what treatment I will or will not take to continue slowing the progression of my multiple sclerosis since the night I knew I could no longer take Copaxone.

My reality is the treatments that are available for me to take all have common side effects and "what some people may experience" problems. Unfortunately, for me I experience common side effects and "what some people may experience" on every medication I take. It’s just a matter of WHEN it will happen to me. I will worry myself to death wondering when I will experience the worst of what can happen being on a medication.

I have decided to try Tysabri, because I believe Avonex and Copaxone worked in slowing the progression of MY multiple sclerosis. I have my days with mobility, but I am not permanently immobile, I have my days everyday with pain, but I am on a regiment for pain that works for me that I am still functional, I have been fortunate not to wake up and not being able to see, I have been fortunate not to have lost my voice. Although there are other problems we MS'ers experience, the ones I referenced above are the ones I feel blessed I am not having permanent problems with and I can continue to enjoy living life how I know it.

When I was diagnosis, I FEARED loosing my mobility, sight, and voice. I know it could still be a reality, but I had to conquer that daily worry of fearing what I feared the most living with MS. Second Timothy 1:7 and Psalms 23 help me when I FEAR something. Those biblical verses are the same verses that will help me conquer what I fear about Tysabri. By the time I start my first Tysabri infusion I will have a peace of mind of what I fear the most selecting Tysabri as my next therapy to slow the progression of MS. Taking RISKS are part of LIFE; we all have done at least once in our lifetime. Okay, I have done it more than once :) I am going into this new treatment well aware of my risk.

I admit, but now I release that I feared I could be that small percentage of people who contract PML while on Tysabri as a treatment.






I am witness that...









"God has not given us a spirit of fear, but of power and of love and of a sound mind".

"The Lord is my shepherd;
I shall not want.

He makes me to lie down in green pastures;
He leads me beside the still waters.
He restores my soul;
He leads me in the paths of righteousness
For His name's sake

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.

You prepare a tale before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely, goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the Lord
FOREVER".

As of this moment I am letting go of my fear of Progressive multifocal leukoencephalopathy (PML)

No! No! No! To Copaxone

Like the Amy Winehouse song..."No No No to Rehab", I am singing "No No No to Copaxone." It happen again last night, this time it forced me to the emergency room. Immediately after my injection my heart and chest felt tighten to the point I could not breath and became dizzy. I start itching like a heroin addict looking for a fix and my body broke out into hives. As much as I hate calling 911 for an ambulance to rush me to the hospital, last night was no time to be hating.

By the time they arrived, I was still struggling for air, itching like mad, and my blood pressure was off the charts. The EMT's were great they hooked me to some oxygen, put the IV in with one stick, shot me with some benadryl and rushed me to the hospital. I felt that I was dying...I obviously survived because I would not be writing this post.

After hours in the ER hooked to the machines while oxygen flowed through my nose and a shot of Medrol I pulled through. I do not care how rare this reaction one can have being on Copaxone is, I am through with Copaxone. I trusted my doctor the first time I had an IPIR reaction and she said, "Its so rare and random you will probably not experience it again. Copaxone is working so well for you I do not think you should stop taking it". Hell, the second time came less than six months from the first time and it was worse.

Fool me once shame on you, fool me twice shame on me...No! No! No! to Copaxone

It is time for me to do research on the other disease modifying drugs except Avonex (been there done that). I have a feeling when I talk to her later today and she have me come in she will suggest Tysabri. Personally, I am not feeling Tysabri and I do not know enough about Rebif and Betaseron. I do know I want to continue to slow the progression of multiple sclerosis, so I have no choice put to select another disease-modifying drug.

I get so frustrated with MS and its unpredictability; I damn sure did not think my evening would end with an ER visit. I had romantic plans after receiving some unexpected roses and a beautiful card from my better half. Well, all is good now...if any of you have insight on Tysabri, Rebif, or Betaseron enlighten me. I still plan to research the drug, but it would be nice to know how it has been for any of you who are taking one of the three I have to choose from.

UPDATE

I was too chicken sh*t to try Tysabri and I did not want to go through the motion of taking Rebif or Betaseron. Therefore, I went back on Copaxone in May 2008. Hopefully, I will not have another IPIR.

Right Ass Out From This Point On

I thought it would get easier as the years passed, but it does not. Everyday I prepare myself mentally when it is time to take my Copaxone injection. I tell myself "This is the day; I will not take minutes to press the auto injector button to release the glatiramer acetate into my body." I am still waiting on that day.

I wish I did not have to take an injection everyday. I wish researchers discover a multiple sclerosis drug to slow the progression of MS that does not involve injections or infusion. I wish I did not have Multiple Sclerosis, I wish, I wish, I wish so many things when it comes to living with MS.

My injection site choices are my arms, thighs, stomach, and ass. I know I should probably say buttocks, but eff that I am pissed. My stomach is the best place to inject myself, I have not experience a bad experience there (knock on wood). When I inject my arms, thighs, and ass the pain is more noticeable, injection sites are more noticeable, finally the worst part of it all in those areas I have experienced IPIR and nerve reactions.

I talked about one of my IPIR reactions, but I never talked about my nerve reactions until this post. Immediately when I removed the needle from my right buttock, the nerves on my entire right side went haywire. My body went limp and I dropped thank God I was in my bedroom and fell on my bed instead of the floor. All I could do was cry from the excruciating burning pain that was traveling a nerve path. I cursed having MS at that moment. The severe burning pain is gone, but I am left with nagging pain in that nerve. Morphine is not keeping this nagging pain away. I am reduced to taking Lortab 10mg for this breakthrough nerve pain because I dared to inject my right ass to give the other parts of my body a break.

I should have known better because this happened about a year ago when I injected in that area. I thought since it has been awhile, it would be okay to inject there again. I freaking found out the hard way how wrong I was. Come to find out from my primary care doctor I can no longer have ANY injections in that area because the nerve is damaged.

What a life, MS is like a box of chocolates...day to day I never know what to expect from MS. I do know this for sure...My right ass is off limits to needles.

What Should I Do

IPIR happened again tonight the only difference is that it lasted for two minutes. It is times like this when I just do not know what to do.

I have an appointment with my neurologist next Tuesday, but I know I have to call and tell her about my experience tomorrow. It may be time for me to stop injecting myself daily with Copaxone. If that is the case, I am not sure what form of therapy I will try to slow the progression of MS. I know I cannot take Avonex because of the severe side effect I experienced from drug. I never tried any of the others, but I do not know if I want to.

What should I do? For now, I am not going to worry and I will wait and see what my options are.

Still I Rise

Maya Angelou’s poem “Still I Rise”
gave me strength living in America as a black woman, but today it also gives me strength living with multiple sclerosis. I considered myself in a fight for my life the day I was told I had MS. All I could vision on my tearful ride home from the neurologist office was Richard Pryor. After thinking of Richard which I knew the end was near for him, I thought about Montel Williams. I do not know about others who live with MS, but for me every day is a struggle. I fight every day just to get moving, that’s why I try to stay busy doing something. I have met and know several people with MS who had given up and they are now just wasting away. They are bed ridden, blind or sitting in a wheel chair sooner by giving up instead of fighting. By looking at me from the outside you wouldn’t know I have MS, which is why I tell people do not judge a book by its cover.

I want to continue to have the use of my legs, eyes, and not be totally depended on my family because I am bed ridden. I know that is my future, but I also know as long as I keep a positive attitude and a fighting spirit I will delay it for years or I just might never experience going blind, loosing the use of my legs or become bedridden all the things I fear most living with MS. That is why I know I have to continue to fight the invisible symptoms o MS no matter what the risks are from the medications.

The month of November is a busy month for me and MS is trying to rear its ugly head. In this order, as President of a book club I have Dwight Fryer, author of The Legend of Quito Road as The Circle of Friends Book Club guest for a reading and book signing to prepare for, I have family coming to town for the Thanksgiving holiday, and finally I have my step daughter wedding to prepare for and attend the Sunday after Thanksgiving.

The Duragesic patch and Cymbalta is giving me relieve from pain and tingles, but lately I am having terrible headaches and spasticity is now creeping in my body. It’s like my body knows I have plans and its trying to bring me down. I am good at giving others good advice, but it’s time for me to take my own advice. That’s why I blog to remind myself of that fighting spirit that’s in me, as another way to communicate to my family on how I am feeling, and hopefully to inspire others not to give up.

I am not going to lie my experience with IPIR scared the hell out of me and I wimped out taking my shot last night. I got to thinking about Still I Rise and from that I regained a new strength. I WILL be taking my shot tonight and I WILL NOT let the rising symptoms from MS that is rearing its head take me out. Knowledge is Power and I gained enough knowledge about how to handle my MS to battle my symptoms when they creep up on me.


I am in a fight, but in the end STILL I RISE…I RISE!

Side Effects

I honestly believe my death will be because of a side effect from one of my medications I take for multiple sclerosis. I use to believe side effects from medication would happen within three days of taking a new medication. My realities of that belief was diminished when methotrexate went toxic on me in June 2006.

Another reality of side effects hit home last night when I had a reaction after injecting Copaxone. Immediately after my injection my chest felt as if it was being crushed and I couldn’t catch my breath. I felt as if I was about to die from a massive heart attack. Thankfully, that crushing feeling start subsiding after five minutes, but the shortness of breath lingered on for another five minute. Of course my husband wanted to call 911, but I assured him I was going to be fine. To be honest I was worried about what happened and I couldn’t wait until the next morning to call my neurologist to find out what happened.

I was anxious to know what happen and I couldn’t wait any longer to hear back from my neurologist, so I called the Copaxone Shared Solution hotline. After explaining my symptoms to the nurse she advised me not to take the shot tonight until after I hear from my neurologist to see what she want me to do. The nurse from Copaxone told me I had a rare side effect from Copaxone that is called Immediate Post Injection Reaction and from studies of Copaxone it happened to about 10% of the people in there clinical trials, but it is not and should not be fatal. Hmm, that is easy for them to say, but it is not comforting if you experience it.

Well, my neurologist seem to think the same because she advised that I take my shot tonight because that reaction is so rare and random that it may not ever happen again. Once again that’s easy for her to say, but not comforting to me. Since this was the first time I experienced an IPIR, I will take my injection tonight with reservations. If I experience IPIR again, I might rethink my decision to take Copaxone. The only reason I decided to continue using Copaxone is because my MRI’s have been stabled for the last several years of having no new brain lesions. So for now I have to suck it up and be a big girl and take that dang shot tonight.