It has been a little over a month since I last wrote and what a long month it was. What was supposed to be maybe two weeks at my parents place turned into a little over a month. Once I heard back from my doctor, I was given the go-ahead to start up the methotrexate injections again. If all went well, I could start up the plaquenil three weeks later. Thankfully I heard back from him on a Monday and was able to make an appointment to go get shot on Tuesday. When I went in for my shot they (thankfully) realized that the shot had expired and they had neglected to make me a new one. So I went back on Wednesday and got my first shot in I don't remember how long! When I started up my methotrexate again I stopped taking the prednisone. I thought this was a good idea because it was given to me to help with the pain while off my other medications and the nurse didn't mention it when he called. What I failed to realize is how long it would take the methotrexate to kick in because I had been off of it so long. I should have tapered the steroid down over the course of a couple of weeks. Needless to say I had a couple of really bad weeks. It may have been steroid withdrawal as I had several of the symptoms, or it could have been the fact that the meth (as I affectionately call it) hadn't kicked in yet and this is just how I feel when I'm not on any medication. The last two months were terrible to say the least. I was in a lot of pain (both muscle and joint), the fatigue was out of control and a zillion other things I just don't want to go into! I missed about two months of work because of this silly disease. The good news is that I'm feeling much better and the medications they gave me for the Skin Writing disease have stopped my itching almost completely. Yay!
A week ago today I moved back into my apartment with my wonderful roommates who I missed dearly. It was great to be back even though I was still pretty sore and tired. Monday was a special day. I have been debating in my head for a long time if I want to tell you something or not. My life has pretty much been an open book, yet I hesitate to share this because I don't know how people will respond. You're all wonderful so I don't know why I'm afraid to tell you :-) Maybe it is because by telling you I am admitting how much this disease has taken over my life. I'm admitting that I need help and can't support myself. I'm admitting that many of the things I should be able to do I can't. I have always been a hard worker, going above and beyond what was required of me. Now I'm not able to do that. Not all the time anyway. Not even most of the time. But these things are all true so I must tell you. It is a part of my current reality and I am going to share it with you.
Monday morning I had my disability hearing. There, I said it. I have been working on getting disability for several years now. I never told you because it is such a long process and it seemed like it would never happen. I was also embarrassed. I know I shouldn't be, but I was. There are so many negative things that people think when they hear that someone is on disability. Yes, I know I am generalizing but you know there are stereotypes out there about people who are on disability. When I Googled "disability stereotypes" words like burden, pitiful, outcast, crooked and lazy came up. Like all stereotypes, those things may be true for some people, but certainly not the majority. Some people take advantage of the systems that are in place to help people who need it. I think what I was struggling with the most was coming to terms with the fact that right now I am one of those people who needs help. The fact that Undifferentiated Connective Tissue Disease is an "Invisible Illness" doesn't help matters either. Usually when you see people who are disabled, it's obvious. They are in a wheelchair or have some other outward sign of their illness. When people look at me, I look fine. Most people can't tell I'm sick by looking at me. It's kind of like the dirty looks I get from people when I park in a handicap spot and get out of the car looking fine. If I had a cane or a wheelchair no one would give it a second thought. I always feel a little guilty. But I shouldn't. My doctor has tried to get this in my head for a long time and I think it's finally sinking in!
There are thousands of people out there who are just like me. I would never judge them as harshly as I have been judging myself. It's funny (well, not really) how quickly compassion can turn into pride; and I have always struggled with pride. I am a hard worker. I'm independent and proud of it. I don't need help from anyone. But I do. It's humbling to admit that I need help. It's humbling to sit in a chair in the bathroom and have your mom dry your hair because you can't even do something as simple as that. It's humbling to not be able to take a shower every day, because you don't have the strength or energy to do so. It's humbling to have people drive you to appointments because you know you'll be do exhausted when it's over to drive home safely. It's humbling to need your roommates to open things for you....all the time! (Okay, that one isn't too humbling, I've never been able to open things easily!)
Life is humbling right now and you know what? I'm thankful. Through this process I have learned so much. I have an excellent lawyer who has helped me to understand disability like I have never understood it before. I am reminded to stop before I judge someone because I don't know what they are going through. It's so easy to judge...to be prideful. It's so easy to look at someone and judge them in a split second and rejoice in the fact that you've got things together. It's a lot more difficult to stop, ask questions, become involved, help, and just maybe learn something from them.
There is a fine line between being proud of yourself and your accomplishments and being prideful. I for one, cross that line much too often. Being humbled isn't a fun thing to go through, but it's necessary to become more like Christ so I embrace it.. UCTD is a part of my life. While it's here I am going to redeem it. I'm going to learn from it and I'm going to pray to God that He will help me become a better, more humble, more loving person because of it.
Is there any encouragement from belonging to Christ? Any comfort from his love? Any fellowship together in the Spirit? Are your hearts tender and compassionate? Then make me truly happy by agreeing wholeheartedly with each other, loving one another, and working together with one mind and purpose. Don't be selfish; don't try to impress others. Be humble, thinking of others as better than yourselves. Don't look out only for your own interests, but take an interest in others, too. (Philippians 2:1-4, NLT)I would appreciate your prayers. I will get a written letter from the Judge in the next 30 days or so telling me her decision. Please pray for a favorable decision so that I can get some help financially, and more importantly, with medical bills and insurance. If I am granted disability I will still be able to work part time because I make well under the required amount.
I want to leave you with a story. I had no idea what to expect during the hearing. Wisconsin is so backed up with disability cases that I had a Judge from California. We had the hearing by teleconference; the Judge was at her bench in California and I sat in a little room in Eau Claire, WI. We saw each other on giant TV screens. After all the questions were asked and the testimonies given, she took a moment to encourage me. She told me that even though I was caught off guard and surprised, and even though this has been hard, God was not surprised. She didn't need to say that. It wasn't relevant to the case, but it is true and I was greatly blessed!
I'm sorry if this post is a little scattered, I've had a lot of thoughts running through my head the past couple of weeks :-)
