long time

I can't believe how long it has been since I last blogged. Life has been absolutely insane. I recently found out that I have CTS in both arms stemming from above my elbows all the way down to my fingers. It has been a very long and painful experience. At least we now have a name for the pain in my hands and arms. I already had neuropathy, but we couldn't figure out why the pain kept going up my arms. I just have to wear braces when I go to sleep. Hopefully it will work. I'm also doing my physical therapy, so they have added some items just for my nerve pain. I used to hate physical therapy, but now I love it. Yes, it can be painful. But after we find to what extent and where it is most painful, then we can treat it and learn to minimize the pain. I have been doing a lot of pool therapy which has done wonders for me. I feel like I can do anything in the pool. Which can be both good and bad, sometimes I overdo it. It is really easy to do.
My family and I have been going through some struggles, especially because I am no longer working. Financially it is so hard - but we are praying that God will soon answer our prayers. I feel like I have almost exhausted every means we have. How life has changed because of lupus and the pain that I feel every day.
Today, I was having a lot of stomach pains. I cried, now my head hurts more than ever. I took vicoprofen and vicodin - now my stomach is all better, but my head and leg hurt now. Well actually I have to say my head hurts the most. I don't think I could take anymore drugs -- because then I would just be useless for the rest of the day. Life as a vegetable is also an awful thing. It is either extreme - veggie status or pain!! hmm...which sounds better? I've been on both sides and I would have to say pain is actually better. I feel like I'm alive at least.

everyday BURDENS

Here I am, staying home to get better, right? I'm not sure if I am happier or more depressed? My daughter refuses to leave my bedside thinking that I won't wake up after my naps. She is 14, this is the time she spends with her friends having fun. I keep encouraging it, but there is always something...I have filled my days with endless tasks. I try to move it around so there are days where there really isn't much going on...like today. I have a massage scheduled. Due to some unfortunate events, the carpool won't work today. So I have to rush my daughter to camp. I would ask my husband, but he has been stressed out to the tee. I did a phone interview yesterday, taking a significant pay cut, but a job nonetheless. I don't know how long I could last working. I could barely be here and I am at home. Am I asking too much for a regular life? I'm a burden to my daughter, to the point where she won't leave me alone. My husband is working more and more so that he can support us. I really hate feeling this way. I just want to go away and not think about being sick. I have another doctor's appointment tomorrow morning. I am tired of being pushed this way and that way. I am obviously just barely surviving.

hi there :D

Thanks to the random people in my life, who help by listening and showing me that there is much more. I have officially re-started bible study. My mission is to read the book of Matthew. Or at least that is where I am picking up :) Thank you for listening, as always.

the EXTREME heat

Today was a very HOT day. I went to church with my family with the exception of my husband. He has been working every Saturday because he is trying to make up for my earnings. My church doesn't have air conditioning & it was almost horridly hot. I think that being spiritual helps me get through my rough patches. Sometimes I get angry at God wondering where he is and why isn't he helping me?

I have been officially disqualified from unemployment. Now I am not sure what to do? I got the disability forms in the mail from the Social Security Administration. My husband wants me to apply for disability and I have a hard time accepting it. I heard it is hard to get on disability. I don't know how much work I can really do and be productive.

My family (husband & daughter) has been so wonderful to me. They have been getting my drinks and helping me around the house and also while going out. I have been able to use my wheelchair but other times I don't want to. Both of my arms, wrists & hands hurt badly. I can't lift anything more than a magazine. When I go grocery shopping it is the worse. It is very painful. I usually have to put lidoderm patches.

I do my physical therapy twice a week, in the pool, electrical stimulation and massage. Stretching seems to be the most important key to pain management. I didn't realize how much more it helps to stretch instead of taking another pain pill. I just did another DEXA scan, plus I did the modified berrium testing last week. I guess I should know some results by Monday. I have two appointments and one on Wednesday. Hopefully it turns out okay. My rheumatologist seems to say that my lupus is doing okay. But I know sometimes when I stand too long my knees hurt and turn red.

Well wish me luck in getting disability! I have an appointment in the office in August. Hopefully it won't be such a pain to get.

hmm...?

I am not sure what I am doing these days...I have been unemployed officially for almost a month. I have so many errands to run each day-to-day that we never really get to enjoy our days. Now that has to suck more than working, right? Who knows?
Nowadays - I just wander around. Hopefully I will find my way.