Posted by: twistsoffeet | May 2, 2011

FREEDOM


Yesterday was my last day at work and now I am free.

Free to sleep later than 03:30 AM, free to sit in the Jacuzzi and sooth my aches and pains or swim or do nothing.  At least for today.  I now have only 9 days before I leave on this grand adventure of mine.

Only 9 days of anxiety caused by wanting to begin and knowing that I am unable to leave until 05/10/11 .

All of my friends and coworkers have said their goodbyes and wished me well, even though I will actually see most of them one more time before I leave.  My Superintendent was kind enough to let me work a few extra hours, so I was able to earn a few extra dollars.

I had been thinking that I really need to have more of a purpose on this trip of mine, something to focus this blog on… so that maybe it is more interesting, but also so that just maybe something good can come of all of this.

I had a bit of a plan, but it think it somewhat came together and solidified yesterday.

I have already written in this blog that I have rheumatoid arthritis. But most people do not really understand what a horribly debilitating and crippling disease R.A. can be.  So today I will tell everyone a little about this affliction and also share some insight into how it has affected me.

Rheumatoid Arthritis is a auto-immune disease. It is just one of well over 100 forms of arthritis.  It is, in an oversimplified nutshell, a disease where a person’s immune system gets confused and attacks its host body.  In my case it attacked MY body.

I hear people say all the time that they have R.A. in their hands,  knees, or hips.  In actuality, if you have R.A., it is in your whole body. Part of diagnosis is to take blood samples and test for Rheumatoid factors.  The disease affects people differently and in different parts of their bodies. For some reason, a person’s immune system gets confused and thinks that healthy living tissue is a foreign invader and it attacks this healthy tissue in order to rid itself of the invader.

There are many theories as to why this happens, and I have had people tell me it was due to trauma such as a severe injury or even mental trauma.  Some people say it is caused by other diseases, and still yet others say it is hereditary.

In my case it could be any of the above as I have had mental and physical trauma, and I have had many diseases and illnesses.  And I have relatives with the disease.

My personal feeling is, at least in my case, that some genetics play a part and that injury weakens the body, making it more accessible to many illnesses.  I also strongly believe that other illnesses can play a part in this.  For my case, I had a severe case of human parvo just before my R.A. symptoms showed up.  For those that have never heard of this disease, I will say almost all of us carry the antibodies of human parvo.  However, most people do not suffer any effects from these antibodies and this disease.

In my case, I was in the smallest percentile (ie. less than 1/100th of 1 % of anti-body carriers) who not only are affected but severely affected.  It was horrible, but my immune system apparently did what it was supposed to do and killed off the living anti-bodies almost over night.

I am sure people are saying, “Just what does this have to do with R.A.?”  So I will tell you my thoughts… I believe, and although there is no proof, it is possible that since I had genetic pre-disposition and had been weekend several times from injury, that when I had my bout with human parvo, and although my immune system did what it was supposed to do, some of the living antibodies survived in parts of my body with low blood flow– such as bone or tendons and ligaments.  Since my immune system realizes that there are still living antibodies of human parvo in these tissues, it started attacking the places it recognized as being fortresses and refuge for these antibodies.  Thus, it is attacking my bones and tendons, ligaments and cartilage.  Keep in mind this is just “My theory.”

When R.A. attacks a person’s body, it eats away at your joints, causing inflammation, swelling, and destruction to connective tissue.

It is painful beyond description.  I have had days– and even weeks– at a time where I was in such intense pain that I would eventually pass out.  At these times, I was unable to sit or lie down.  I was unable to walk or sleep.  Trying to push buttons on a TV remote would bring tears to my eyes, and if someone was to shake my hand I would scream out in pain, be brought to my knees both figuratively and literally.  And although I was never suicidal, I did have thoughts that if the disease would just take my life I would find peace.

However, I never wanted that and never gave up.

After my diagnosis, I was treated with methotrexate. This is one of a number of drugs called DMARD’s (disease modifying anti-rheumatic drugs).  Methotrexate was originally developed as a chemotherapy cancer drug, and it has a very close association with the deadly chemical warfare agent known as mustard gas.  It has been shown to actually cause or contribute to the onset of certain cancers.

Since R.A. itself will probably not kill you directly; it is distinctly possible that the drugs used to treat and manage– but not cure– this disease can themselves kill you.

It has also been shown that a key part of managing R.A. is leading an active, healthy lifestyle.

In other words, eat healthy, lose weight, and keep very active.  Avoid high impact exercises, since joint tissues such as cartilage, ligaments, and tendons, and even bone, are already dealing with the stresses of the disease.

For me, I believe it is extremely important to do resistance exercises to build muscle that will support your skeletal system and take pressure off of joints affected by your R.A.. I do walk a lot, but walking  has impact and as such causes intense pain and even bone on bone impact and wear.  I continue to climb rocks when available, but I ride my bicycle a lot.

By riding my bicycle, I am able to keep my body moving, losing weight, and keeping up a healthy blood flow through my body in areas that generally have low blood flow rates.  All of this adds up to being, in my opinion, a very healthy and positive way to manage my disease and keep the crippling affects at bay.  This also provides numerous other health benefits and so becomes a win/win situation for me.

My hope in writing this blog is to draw attention this very common disease that is frequently very misunderstood by the masses, while at the same time showing it does not have to destroy your life.  Hopefully I can provide inspiration to others with the disease so that they go out and become active, keep moving, get to a healthy weight, and lead an overall healthy lifestyle, therefore contributing to managing this horrible disease by being very proactive in its management.

I do not intend to discourage anyone from seeking help from a Rheumatologist nor taking advantage of the medications including methotrexate in assisting this disease.  Without having used these DMARD’s including methotrexate, I would not be able to be living the life I now lead.  Methorexate had a horrible effect on my body, and I no longer use it, but it was invaluable in getting my disease to a manageable point where I could seek out other methods of treatment.

So go see a Rheumatologist, get active and keep moving.  And hopefully, if you have R.A., you will be able to keep the pain and crippling affects of the disease and lead a somewhat pain free life.

I am not a doctor, so all I have written here is my opinion and a very simplified description of the disease and its management… so please, if you have the disease go to a professional and learn more about R.A. and managing it.

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