I was diagnosed with psoriatic arthritis about 5 years ago. Although I have lived with it for about 9 years. My psoriasis (the skin condition) flared up visually for the first time when my son was about 2 mths old. It wasn't a small thing either. Out of the blue my hands were like "hamburger meat", as my husband so nicely put it, and my face wasn't much better. I refused to leave the house. It was not long after that that I started having joint pain, stiffness and sore muscles. There are days when I can barely function, but, I try. Since psoriatic arthritis doesn't only effect your joints, but your muscles and internal organs, it confused many of my doctors as they were unfamiliar with the disease. I have had just about every test under the sun, in an attempt to diagnos my condition.
About a year and a half ago I had a muscle spasm that encompassed my entire mid-section and lasted about 30 minutes. When it was done I had to spend 2 days in bed, because I was so sore, and had pain that lasted in the area of my kidneys, for 3 months. That pain comes back on and off and last several weeks each time. I have been to all kinds of doctors to make sure that there is nothing wrong with my kidneys and have been told no. It is your arthritis attacking the muscles in that area. I have mixed feelings about that. The devil know vs the devil unknown sort of thing.
Many days I get up in the morning and the heel of my foot hurts almost too much to walk. Many days I feel like I got beat up. I get ear infections due to this an my nails are effected in big ways. I have lost numerous toe nails and my finger nails are extremely dry. Since appearance is very important to me, I have my nails done every 2 weeks. I have found after years of searching, products that I can use on my skin so that most people don't even know I have psoriasis. I have also managed to avoid medication, for I know once I start, I will never come off of them.
NO ONE knows I am sick unless I tell them. I like it that way.
Today is one of those days. I was on my feet all day yesterday outside, and today I am having a difficult time funtioning. EVERYTHING hurts.
The good news is, I still go out dancing with the girls, in 4 inch heels and go about my life. I refuse to give in. I can't yet. I just can't.
This is my life. I need to make it work.
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I understand your reluctance to use medications but did you know that PA can (and eventually WILL) cause permanent, irreversible damage to your body if not treated. You don't need to let this happen! The new biological drugs actually stop the progression of the disease, stopping or slowing the destruction of joints and connective tissue. I was diagnosed 2 years ago and I am taking Humira shots weekly. My life is so much improved and I know that I am preventing or delaying having to have surgery or becoming wheelchair-bound. There is a great online support group with lots of good info about meds and about just dealing day-to-day with PA. It's at http://health.groups.yahoo.com/group/PsoriaticArthritis/ You should join us!
best regards,
sherry z
Thank you Sherry. I will look into the group and re-evaluate my knowledge of the medications. I was of the assumption that the medications just made you more comfortable, not that they hindered the disease.
The anti-inflammatory meds and pain meds just make you more comfortable. But the immuno-suppressant drugs including methotrexate and the newer biologicals actually slow or stop the progression of the disease. In some cases they can put you into complete remission, although I haven't been that lucky. Enbrel, Humira and Remicade in particular are known to stop joint destruction, although they can't repair destruction that has already occurred. I choose to take them NOW, before I have any serious irreversible damage. That way I should be able to preserve mobility hopefully throughout my whole life. Like you, I should have many, many more years ahead and I want to be mobile! Talk to your rheumatologist about them. Many people are afraid of the possible (but rare) side effects. I understand that, but in my opinion the "side effects" of NOT taking these drugs are even worse - joint destruction and immobility!
best regards,
sherry z
Sherry was right about this site. If you are suffering, curious or have a loved one who is, check out the group. There is a ton of great information you won't get on the regular medical sites. This is also a great support group. See you there.
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