I've been trying to post this for a few weeks, but didn't have the energy. I hate to complain. I try to post postitive things. ANd that was so easy when I started the Enbrel. I was able to get out of bed without help, dress myself, park the wheelchair, be a wife and mom again, and even paint the bathroom. You were there to rejoice with me. Now I'm not sure I'm even thinking clearly.
The Enbrel is no longer working. The pain is back in full force and more than before. I find myself using the wheelchair more and more. I can't cope at all without pain medication. There are no other arthritis meds for me to take. I got the Enbrel through clinical trials, and I'm going to try to finish the study. That will be mid-June. Before Enbrel, the arthritis only affected my back, neck, hips, and one elbow. The hip pain and morning stiffness were my biggest problems. Now I'm back to always stiff and in terrible all-over pain. I have peripheral joint damage that is evident in x-rays. A few weeks ago something went wrong in my neck while stretching. Now I have numbness whenever I move my arm. (Neck, back, left arm, and hand) I wish the numbness meant no pain, but no such luck. I have a followup rheumy visit on the 27th. Hopefully the xrays showed something. Why is there so much pain? It has taken over every joint and every aspect of my life. I really didn't want to lose my hands. The iritis is back and I'll probably be on Pred for the rest of my life. I've gained so much weight in the past couple of years, I feel ugly and useless. I'm so tired of people telling me that everything is my fault. I want to crawl in a hole and cry myself to sleep. Childish maybe, but it might help.
I've been down with the flu since Saturday. Fever, chills, nausea, diarhea, sinus and chest congestion, and PAIN. The only positive thing is I've lost a few pounds, but not like I should. I'm so weak, I faint if I do anything at all. I'm tired, discouraged, and the pain is really getting to me. I'm sick of laying in bed, but can't seem to stay up more than a few hours without fainting. I really don't have the time or patience to get sick. Hope I get over this soon.
In spite of everything, I have so many blessings in my life, it seems almost wrong to complain. My husband is great, and I feel for the ones of you who do not have a supportive partner. I couldn't cope without him. He is my rock. My kids are healthy and happy. The legislation I've been fighting and lobbying for five years to get passed finally did last week. All it needs is the governor's signature. (I've got a party scheduled for when that happens!) I was approved for SSI (although I may never see any moneys!) My oldest son is graduating this year. He is also in love and soon getting married to a wonderful girl that I really like. I have been going to school since last fall (I've not been in school since the 70's) and enjoying the chance to learn. But I've missed so much lately due to AS problems. I'm going to be giving it up simply because there is not enough of me to go around. I go to school for 2 hours, come home, and go to bed. I think my kids are getting the short end of the deal here. I proved my point; I'm not too old to learn; and I can always go back later. I just wanted to learn something about computers (they didn't have them when I was in school). But just what could someone who can't lift 5 lbs do with a Cisco networking degree? There's too many things I'm just not able to do physically. It was fun while it lasted. I'm the only female in a class of teen boys. They make me feel like Mary Poppins. How I got started is my boys wanted to attend classes at the local tech center and they needed transportation. I didn't want to sit around town everyday for two hours so I enrolled in a class, too. Stephen now has his driver's license and owns his own car. So I'm redundant.
It's scary when your kids start driving, believe me.
Now for the happy part. (Maybe scary, too) My son is getting married May 24. I'm going to try to do the sewing for my son's wedding. That's what I did for years before AS took over. I would go shopping with the bride, her mother, and anyone else who wanted to tag along. We would select gown designs, fabric, trims, accessories, and etc. I always get very involved in the process. I've never had an unhappy client; they enjoy the personal attention, and I'm there if they need someone to talk to. I usually go to the weddings and help dress the bridal party. But it was different this time since this girl is marrying my son. Different for her, too, as who takes their mother-in-law along to shop for a wedding gown?
It's taken me almost 2 hours to write this. And I'm shaking so badly now, I need to get back to bed. I'm supposed to have a dentist appt this afternoon. Whatever. I need help coping with the pain. Maybe getting over this flu-bug would help, too. Anyway, love ya all. Thanks for listening and understanding.
Hugs,
Cindy
Life may not be the party we hoped for, but while we are here we might as well dance.
