Tuesday, November 18, 2008

A Letter To People Without Chronic Pain

I am doing something a little different today. I am publishing someone's elses letter because I could have not written these words with any more eloquence or passion.

I came across this anonymous letter out in "Myositis cyberspace," and it touched me very deeply. Even though the author is unknown, I want to thank them from the bottom of my heart for expressing what many of us--who suffer from chronic illness--feel every single day.


"Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand... these are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me - stuck inside this body. I still worry about my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy." When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. Please repeat the above paragraph substituting "sitting, walking, thinking, concentrating, being sociable," and so on. It applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room.

Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally.

If you are able, please try to always remember how very lucky you are - to be physically able to do all of the things that you can do. Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time.

Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct. If I were capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language.

Also, chronic pain may cause secondary depression. Wouldn't you get depressed and down if you were hurting constantly for months or years? But it is not caused by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. That just isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying.

If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal.

I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability.

I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life.

You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able. I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot."

Tuesday, November 11, 2008

A Reclast Nightmare

Today is Veteran's Day...a day to honor and remember all veterans who have sacrificed and fought (and continue to fight) for our country's freedom.

It was exactly 90 years ago that a defeated Germany signed the armistice ending four years of the bloodiest war in human history--World War I. A day that changed history!

To all of the brave men and women serving in Iraq, Afghanistan and other parts of the globe, I salute you. May God continue to watch over you.

Do you realize how blessed we are to be living in the United States of America? For the first time in our nation's history, American's have elected an African American to serve as our 44th president.

Obama’s election is a giant victory in the long struggle against an earlier generations long legacy of exclusion and hate. Finally, it is apparent that all people are created equal!

On the healthfront, things are quite bleak at the moment. I went to the Infusion Center last Wednesday to receive Reclast. a once-a-year treatment for postmenopausal osteoporosis.

Reclast is a type of medicine called a bisphosphonate which works to increase bone density. Because it is an intravenous (IV) treatment, my docs thought it would be good for me since it would bypass the digestive system. However, no one knew that I would have such an adverse reaction.

The infusion nurse told me that the most common side effects are flu-like symptoms, fever, muscle or joint pain and headaches. So, I drank several glasses of water and took Tylenol. In addition, she said that I should drink Gatorade to replace the electrolytes that might get eliminated and cause muscle pain.

Of course I experienced ALL of the symptoms within a few hours, but no one could have prepared me for what was going to happen the next day. As I was laying in bed, my entire body started to tremble. Within minutes, both legs started to tingle and then went completely numb. Every few minutes I had a stabbing pain at the bottom of my left foot.

At the same time, I felt a strange sensation throughout my body. It is kind of hard to put into words. My hands started to spasm and lock shut. I could not open them.

As time went on, the my muscle pain intensified. I experienced the most incapacitationg bone, joint and muscle pain ever. My temperature started to spike and all I could do was cry.

It brought back upsetting memories of my life at the very beginning of my diagnosis. Did this new drug nullify everything and bring me out of remission? This just couldn't be happening to me.

The fever continued the rest of the week, into the weekend, and the pain and weakness progressed. I called my physician's emergency number and spoke with the doctor on-call. Unfortunately, he had no answers. He just suspected that something else was causing the issues...perhaps a virus.

Now, I know for certain that I do not have a cold or the flu. I have no chest congestion, coughing or sinus issues. I was fine until the Reclast infusion.

According to the Novartis website for professionals, my reaction is extremely rare. And get this, the symptoms can last for two weeks. TWO FREAKIN' WEEKS! Why didn't someone tell me??? WHY???

On Monday morning I put in a formal complaint with the FDA and also with the "Clinical Safety and Data Collection Team" at Novartis. I did speak to Dr. Rumore, as well, who assured me that there is no scientific evidence that the treatment will exacerbate my disease. That is my biggest fear at this point...that I am back to square one.

As of today, I am still running a fever but my pain has subsided to a degree. I have doubled up on my calcium in-take and will continue to drink Gatorade. If things don't improve in a few more days, I will call the doctor and he may have to hospitalize me and administer an IV of electrolytes.

I don't want to go anywhere near a hospital now...it is flu season. That would be a death sentence, in my opinion.

In the meantime, my echocardiogram the week before was normal and Dr. Rumore explained that my previous thoughts were on target about taking a statin for my high cholesterol. Because I have a muscle disease, it could be a potential problem. He suggested regular exercise (when I am back to myself) and continue the diet. The doc also mentioned drinking a glass of red wine each night. Now...that is an order I don't mind listening to!

Every day brings on yet another challenge. I am actually taking my time typing this blog, as it is difficult keeping my hands on the keyboard. But I needed to write about my experience so that others, contemplating this new treatment for osteoporosis, might reconsider their options.

I am trying to work on my doctoral dissertation. I have come so very far and refuse to stop now!

Until next time, please continue to keep me in your prayers, as I keep you in mine.

God bless.