Too long but needed to vent
by, 03-14-2011 at 12:38 PM (888 Views)
Wow, it has been such a hard month! I don't know if it's winter and the cold or if my body is cycling for another huge flare. I have been in so much pain!! And, of course, there's the swelling around the joints and my eyes. I've known without a doubt that I have Lupus for months but if there was any doubt, it's completely gone. The Reynauds and the Sjourns just nag. I know I sound like a constant downer but this is pretty much the only place I let it all out. I hate all the medication and I'm scared to death of being on 50mg of pred. even though anything less simply leaves me as limp as those Fall leaves I didn't rake. I have calls into new rheums in hopes of starting a new team of doctors (per my pcp suggestion) to get things under control. I just don't understand why an ANA score is the definitive in Lupus! I need relief! I heard there's a new medicine out and am reaching my hands to God that it's something that will work for us. Believe me, I never feel a lone -- I know there are so many of us suffering! I pray that there will be something that will help us all to live a better life.
My prednisone takes my moods up and down and I hate it! My poor son must want to "duck and cover" at times because he never knows who I'll be at that moment. I try so hard not to be snappish but when you hurt and you're chemically altered, it's tough not to be tempermental. In a little bit of fairness to me, he's 16 and obnoxious at times but beyond that, he's truly a fantastic guy. I feel badly for my parents because I can't help them like I would like to. I guess there's just a lot to do and I feel very helpless to contribute.
I continue to have this maddening craving for yogurt. I mean, literally waking up with eating yogurt being the first thing on my mind. I've also started waking up at around 2:00 am, starving. That has never happened before!! I can't eat much at one time because it will literally make me physically ill, but there's some type of chemical imbalance going on that's driving these new hunger pangs. I've become religious about my vitamins in hopes that maybe I'll catch the imbalance and improve how I feel overall. I also have started with the "frothy" urine -- a sign that I'm passing protein from the kidneys. I've read that it's not that big a deal so I hope that's true. My overall feeling is that the Lupus is really settling in so my desire to get that doctor team in place has never been more urgent.
And let's talk friends! Don't you ever feel like you don't want to really contribute to a conversation because your whole life has become about illness? I have two very, very dear friends who have husbands going through life-threatening illnesses just as I'm going through mine. We can commiserate and I am grateful I can offer them support. My very dearest friend's husband, who has been my friend as well since we were 13 has many of the same issues I do. He doesn't have Lupus but he has terrible issues with his lungs and his future prognosis is not good. It always seems like one or the other of us is in the hospital and she and I always exclaim "can you believe this is happening to us?!" We met when we were 13 while I was briefly in OH with my family during a job transition. We looked like identical twins and in spite of only spending that brief time together, we have been as close as two friends can be. They even schlept me back and forth to Cleveland Clinic when my fibro first started. I called her the other day to tell her that they want me to go to Mayo. But if there was one thing I learned about traveling to a high profile clinic, the clinic stays put and you have to go home. You really don't get much further ahead regardless of the talent. I'm still tossing around the Cleveland Clinic idea if for no other reason than just to see her and her family. We laugh SO much and I swear I felt better for months after seeing her just because of that. My other dear friend is suffering the financial aspect of having a severly sick spouse like I am. We trade all the secrets we know about saving money. She's also someone who will help me look at the positives and God bless her, I need the reminders! We pray for each other and we both know how much the other cares. Sometimes that alone will help you feel better. She has several new grandbabies so I get to hear about them and that makes me very happy. If I were even mildly stronger, there's no way I could stay away but I'm not even sure I could hold one right now. If you knew how I felt about children you would understand what a terrible shame that really is!
I just took a moment to get a glass of water and had to call in my son to stablize me. This darned dizziness is simply ridiculous! I can tell it will be a "cane day". To think I just turned 48 and already have to keep a cane close at hand seems impossible to fathom! The other day at Walmart I almost used one of the mobilized carts but I just can't bring myself to do it. I know there is someone out there who needs it more than I do but if things continue to progress, I may just have to grab the darned cart!
Well, I kind of hope no one stuck in here until the end of this blog. I just needed to put down my thoughts, complain and hopefully reread it and realize life will go on. I won't lie -- if this is my future, I won't be sad if I don't live to the ripe old age of 100 but I'm not ready to give up yet. And then there's that new medicine. And, of course, maybe that team of doctors will come through and I will get some relief and be able to be the active, involved woman I was before, maybe even helping others with Lupus and Fibro. I believe I will close with that and keep that as my focus.
God bless and a wish for a pain free day for my fellow lupusites!