The easiest way for me to describe my lupus is by saying my body is on "strike". I try and negotiate the terms of the contract with prayer, drugs, rest and chocolate. But nothing has convinced it to sign the contract.
I heard a sermon today that said if you have a hard time dealing with others you can just walk away, but when it’s yourself you have issues with your stuck for life. So here I am stuck in a body that refuses to negotiate any more. I haven’t given up, I will keep on, but sometimes it is so overwhelming.
This week has been another battle of strength. Who will win, my mind or my body. I am learning to make more sacrifice’s, that I need to pick a few things to do and love and let the rest go. I can’t be in the middle of every social and if I want to continue with the ministries I love I will have to let other things go. Such a hard realization. There is also a fine line.
Today I woke up to a beautiful white blanket of snow. I love the snow. It wasn’t long before I told Josiah to get ready so we could go outside. I bundled up and headed out with him. After a few snowballs my hands started to burn in pain, the cold was just too much. My other joints started to join in. It was so hard to tell Josiah that time was up, after just a few short minutes. Luckily I have a understanding son who didn’t complain and was telling me that he had fun.
Friday, January 25, 2008
Monday, January 21, 2008
Update
I have spent the last 8 years telling myself that I wasn't going to let it get to me. That I was going to fight it and I would never give in to Lupus. But in doing that I realized I have over committed myself and therefore realized that it has gotten worse than it probably would have been. I'm not yet willing to give some things up and others I hope to never have to give up.
The new medication is still taking it's toll, every week. I am getting a terrible rash all over my upper body. The meds seem to be taking care of some of my symptoms, but other seem to be getting worse. My joint pain is so intense, partly because it is so cold and moist outside. I am having days were typing is even difficult. I have never had that issue, but I hope it doesn't last long. Since typing in my job is a must I can't loose that.
My muscles are still suffering especially in my chest. Honestly, I don't know how I would get through this with out the strength God gives me. I have been working so hard on learning to rely on Him more and more. His strength gets me out of bed, I honestly know that without that strength I could not do what I do.
The new medication is still taking it's toll, every week. I am getting a terrible rash all over my upper body. The meds seem to be taking care of some of my symptoms, but other seem to be getting worse. My joint pain is so intense, partly because it is so cold and moist outside. I am having days were typing is even difficult. I have never had that issue, but I hope it doesn't last long. Since typing in my job is a must I can't loose that.
My muscles are still suffering especially in my chest. Honestly, I don't know how I would get through this with out the strength God gives me. I have been working so hard on learning to rely on Him more and more. His strength gets me out of bed, I honestly know that without that strength I could not do what I do.
Monday, January 14, 2008
Fast Forward
So fast forward to recently. In September my pain began to get worse. I had been ignoring it for so long. Mainly because I was so tired of being told that every aliment I suffered was Lupus related and the only thing I could do was prednisone (Steroids). I refused. I would rather suffer than go back on them, so I did. By mid November the pain was no longer tolerable and I made an appointment to go back to my doctor and start treatment back up, and if it meant more steroids I would consider it- anything to be better. My doctor spent a lot of time with me discussing everything and why I had quit and why I had come back. I felt so good when I left. We decided to put me on Methotrexate, a drug I had been on once before.
The first week I felt like a train wreck on that medication. Each week it gets better with the side effects. Unfortunately the pain is not getting better. Most of last week I have hardly been able to type or walk up a simple flight of stairs. Even today my body is still on strike, but I guess I am learning to cope with the intensity a little better. Breathing is still very difficult and but I am hopeful that the metho will kick in sooner rather than later. It’s been 4 weeks, which is when I was told to start seeing improvements. A huge praise is my exhaustion level has decreased incredibly!! A month ago my days went like this: Up at 6:30 am, out the door by 7:00, sleep all the way to work. After work I would sleep all the way home, wake up long enough to climb into bed and sleep til 6:30. I am so happy to say that I can go home and spend some time with my boys. I will deal with all the side effects needed if it means I can spend time with them.
The first week I felt like a train wreck on that medication. Each week it gets better with the side effects. Unfortunately the pain is not getting better. Most of last week I have hardly been able to type or walk up a simple flight of stairs. Even today my body is still on strike, but I guess I am learning to cope with the intensity a little better. Breathing is still very difficult and but I am hopeful that the metho will kick in sooner rather than later. It’s been 4 weeks, which is when I was told to start seeing improvements. A huge praise is my exhaustion level has decreased incredibly!! A month ago my days went like this: Up at 6:30 am, out the door by 7:00, sleep all the way to work. After work I would sleep all the way home, wake up long enough to climb into bed and sleep til 6:30. I am so happy to say that I can go home and spend some time with my boys. I will deal with all the side effects needed if it means I can spend time with them.
Thursday, January 10, 2008
My Lupus in a nutshell
It first started almost 8 years ago. A couple of weeks after David & I got married I was in and out of the doctor’s & ER with chest pain. I had several tests done, my heart & lungs were normal, so there was no explanation for what was going on.
One month after it all started, I was talking with my mom & she asked if they had tested me for Lupus. At that time Lupus was a disease my mom had, that is all I knew. So I went online and did some of my own research. I learned that I had 7 of the 11 symptoms, the only thing missing was a blood test to confirm the diagnosis. I headed to my doctor’s armed with new information and the request for a blood test. I was surprised to find that it took her some serious convincing to get her to order the test. She told me I was too young and that even if the test was positive it was highly unlikely that I have this disease (I was 22 at the time).
The ANA test takes a week to come back and I anxiously awaited. When I got the call that it was positive I immediately made an appointment with my mom’s rheumatologist, the best in the state . We discussed my symptoms and took more blood and moved on with the treatment.
During the first 3 years I took drug after drug, none worked. At one point I was on such heavy doses of steroids that my liver started to have issues- not to mention the weight I had gained. So I finally stood up and said enough. The put me on oral metho and the side effects were so bad, but at that time I lost my medical insurance, so I was on my own.
Over the last few years I have done no treatments for my lupus, I have been in severe denial. Someday I may regret that denial, but for now I am learning to live on medication. Learning that pain is a constant and to stop blaming my pain & to stop making excuses for every little pain, or side effect to the disease I face. I know I can survive this, and I know I will survive this but it is only with God’s strength & love that I can get out of bed each day…
One month after it all started, I was talking with my mom & she asked if they had tested me for Lupus. At that time Lupus was a disease my mom had, that is all I knew. So I went online and did some of my own research. I learned that I had 7 of the 11 symptoms, the only thing missing was a blood test to confirm the diagnosis. I headed to my doctor’s armed with new information and the request for a blood test. I was surprised to find that it took her some serious convincing to get her to order the test. She told me I was too young and that even if the test was positive it was highly unlikely that I have this disease (I was 22 at the time).
The ANA test takes a week to come back and I anxiously awaited. When I got the call that it was positive I immediately made an appointment with my mom’s rheumatologist, the best in the state . We discussed my symptoms and took more blood and moved on with the treatment.
During the first 3 years I took drug after drug, none worked. At one point I was on such heavy doses of steroids that my liver started to have issues- not to mention the weight I had gained. So I finally stood up and said enough. The put me on oral metho and the side effects were so bad, but at that time I lost my medical insurance, so I was on my own.
Over the last few years I have done no treatments for my lupus, I have been in severe denial. Someday I may regret that denial, but for now I am learning to live on medication. Learning that pain is a constant and to stop blaming my pain & to stop making excuses for every little pain, or side effect to the disease I face. I know I can survive this, and I know I will survive this but it is only with God’s strength & love that I can get out of bed each day…
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