I’ve been visiting your site off and on since I was diagnosed with AS in June of 2012. I must say it has comforted me when I felt like I was only person in the world who knew this kind of pain. Just to know there are others that understand what your going through helps tremendously, however I don’t wish this on anyone.
Things started happening about nine years ago. I developed a blood clot in the ring finger of my left hand. They found a blockage in my ulna artery which in turn shot a clot to my finger. With much testing and various doctor visits, cardiologist, oncologist, etc. they couldn’t find anything wrong. So naturally I did the blood thinning regiment for a year no problems, I’m fine. The doctor takes me off blood thinners and we do the aspirin route. A year to the day another clot same hand middle finger. We go through the same routine as before, no problems and the doctors can’t figure out whets wrong with me. They have tested for cancer , Lupus… the list goes on and on. Now however I’m on low dose blood thinners for life because of the clotting issue. Over time I notice I’m feeling drained and my back has been hurting more, my whole body for that matter and I’m just not feeling good anymore. As a women we tend to try to justify what we’re feelings, so I chalked it up to being over weight, my age and my physically demanding job as a special education assistant teacher. I’ve always been very active going and doing nonstop but all of the sudden I found myself not interested in much of anything because I was so tired all the time. Anyway this goes on for four maybe five years and on April 27,2012 a Saturday, I having lunch with my husband, I look at my finger, God only knows why, another clot. At this point I’m already under stress from my job, I have a daughter graduating high school, my son is in a life threatening crisis and my mother in- law is coming for a visit : ) a clot I don’t need. It unnerves me of course but I’ve been there done that. We start the whole thing again. This time however I’m also prescribed anxiety meds because of everything going . I continue with my normal life. About a week later I wake up in the middle of the night in excruciating pain in my fingers. My hands feel like balloons, my legs hurt everything is painful I’m literally sobbing. My husband works nights but my daughter heard me( now mind you I have a very high tolerance for pain, so this is quite unusual).After ER visits and more doctor visits and test I still have no answers, it was extremely frustrating! My pain has increased, I can’t lift my arms, I can’t walk and when I do, I shuffle like I 100 years old. I’m sick, dizzy ,tired, and the PAIN is unbearable. This may sound dramatic but I literally thought I was dying because no one could find out what was going on. Finally on a visit to my hematologist he looked at me and said this isn’t you, you never complain, always up beat. You need to see a rheumatologist. I must have looked horrible : )
I went and of course more test MRI’s, x-rays, everything. The some of test come back and she tells me I have beginning stages of Lupus… Oh Joy! A few weeks later the rest come in and its confirmed I have AS also… Double Whammy!! So here it is June I have all this to process and decisions to make and priorities to get straight.
I’ve spent the last year trying to learn my limitations ,my triggers and just dealing with it in general. We’ve been trying to get my meds right because unfortunately Humira, Enbrel could cause me to develop full blown Lupus. The plaquenil and mexotrathate have been working pretty well so far.
I’m so much better than I was a year ago. I agree with a young lady who posted she thought it was a blessing because we are strong enough to handle it. This is so true, even though you may think your not, your stronger than you think. God only gives burdens to his strongest warriors.
Thank you for this sight. You are much appreciated by so many. Together we are stronger and will continue to fight the fight with dignity and grace.
Trudy Hatmaker 47
Texas, United States of America