In November I was diagnosed and have spent the time since trying to understand what exactly Psoriatic Arthritis is. Having never heard of it prior to last year, I really had no idea what to expect or if I could do anything about it. Following the Doctors orders, I started taking the meds and trying to find out more about the situation.
I know no one who has this disease and the only thing my family and friends know about it is the infamous phrase "Doesn't that one golfer have it?"
I have decided I am going to research it and talk to others with it to find out what works for them and how I can attempt to control it. This blog is my attempt to keep track of triggers and helps that work for me. I have dedicated this year to experiment with foods, stress relievers and anything else that may help me deal with the pain because as the name of the blog says, I haven't got time for the PAIN because my life isn't going to stop for it.
My job isn't going to stop just because I am tired or am hurting. My students still need to learn and look to me to inspire them to do their best. Weather I like it or not, I am a role model for some of them and I can't let my situation damper their enthusiasm for Music. I am determined to find ways to keep myself mobile and continue to live my life the best I can.
I have to be positive in these opening blogs because I know things could very well get worse. Last summer when I was hurting the most, and didn't know what was happening, I wasn't very positive. I thought my friends and family didn't believe me and thought I was making things up. The thought occurred to me that my doctor and everyone thought I was being a hypochondriac. Health history in my family is full of bad stuff so when I don't feel well, I automatically think about the family members I have lost and their struggles with their health. My symptoms didn't match any of theirs - Diabetes, Heart trouble, Cancer - but this was different. Even though those things are terrible, their symptoms were not like what I was experiencing. I am tested yearly for all of those things and none of them were my situation. I was in pain. Pain that I couldn't seem to control. Pain that made no sense - like parts of my body were numb but yet there were pain in these areas.
The pain could move too, one day it would be in my feet, the next it was in my hands. I lost feeling in my toes and my fingers yet my fingers and feet were warm to the touch and there was no signs of circulation issues. My lower back has been an issue for quite some time. I thought that was due to stress so I started getting massages every two weeks to help with that. It feels great and helps tons but the lower back issues were still there. I started dropping things and had no grip in my right hand. In fact, I couldn't even close it into a fist. My fingers and toes would swell up. I even had to have my heirloom wedding ring cut from my finger before it cut off circulation. Then the discoloration began.
Up until this point, I really didn't think my doctor believed me. He had been a wonderful doctor to my husband who has his own health issues. My husband has Cerebral Paulsey and has been dealing with pain and ambulatory issues his entire life. So many times, I have symptoms but then when I get to see the doctor, they cannot find it or explain it away. When I came in with purple/blue knuckles, he realized the problem was bigger than he could explain. He decided to set up a series of tests and send me to a rhumatologist for further examination.
When I met with rhumatologist the pieces started to make sense. He asked me if I had ever had any psoriasis. I thought "what the heck does that have to do with anything??" but I answered, "well, I don't think so but I do have some dry skin in my ear." He took one look at it and realized I did have psoriasis issues - I just thought it was a patch of dry skin, like my father had, in my ear. Upon further discussion, I found out the dandruff that I was experiencing was psoriasis as well. We also found out that my toe nail fungus that hadn't gone away with treatments was also a form of psoriasis. His inclination was that I may have psoriatic arthritis. He proceeded to tell me some of the symptoms - all of which I have had at some point in the last ten years. He looked back into my file and found many other symptoms that I had been concerned about that were actually symptoms of the disease. The tenderness in my achilles tendon, the swelling in my hands and toes, the ever so slight twisting of my pointer finger on my right hand, the fatigue that hits me at times when I feel I shouldn't be tired, the dry patch of skin that appears whenever bad things are happening or I am taking on too much were all symptoms I had overlooked.
The moral of the story is . . . I am not crazy. I am experiencing things with my body that I do not understand. I have to learn how to deal with it and how to make my life better. It may mean that my comfort foods like potato chips and dip may actually make me feel worse instead of better. I am going to spend the year trying to find links between foods, stress, and activites and my discomfort. I will share what I find with my new friends in the support group and those of you who would like to know. Meanwhile, I am going to enjoy time with my husband and family while I still can.
Here's to the new year - may it be filled with health, love, friends, family and posterity.
No comments:
Post a Comment