SIGH......
That's the only thing I could think of to write when I sat down to compose this because that's exactly what I did. I let out a big sigh.
Last week I told you about my upcoming MRI and the follow-up doctor's appointment. The good news is my MRI didn't show what the doctor thought she saw on my bone scan.
:| The bad news is that one of my blood tests, which I think I mentioned several weeks ago, was positive for lupus. I keep saying it was positive for a strain of lupus, but I'm not sure if that's the correct phrasing because I am just learning about this disease.
Although I do have some symptoms of fibromyalgia that don't correlate with lupus, the main concern and problem is the lupus. Fibromyalgia is secondary.
SIGH.....
You know reading about lupus isn't that great of an experience. It's bad enough that I have been feeling worse lately and that I already experience the chronic everyday pain. It's just so much information and since my appointment yesterday I have forgotten almost every specific thing the doctor said. The general stuff is still hanging around in my brain, but there's more information I need to know.
This is the line they hooked to me last week when I
had the MRI. They had to test my blood for something
and put some stuff in there half way through the MRI,
which - by the way - was no fun.
I have oodles of more blood work in the process (they took like 100 vials of blood yesterday) and a couple/few more tests. One, which I am so not looking forward to, is a "pin prick test." The doctor says, quite stoicly I might add, it's a little uncomfortable.Ya think?
It's called PIN PRICK TEST! Great. I've already told everyone that I know that someone is going with me for that test.
SIGH....
I can't seem to stop sighing. Like my friend says, "Well, you're okay, right?"
I kind of smiled and said, "If you want to interpret like that. ... There isn't a cure."
"Yea, but now, you're okay?"
"Yes."
"Well, that's good." Leave it to him to look at the bright side of things. He always does so I guess I need someone like that around. "We're going to have to fight this together." Well, now that's even better.
How do I feel mentally? Right now I am pretty "up," so to speak. Although my brain is tired. How do I feel physically? Not so great (really hurting/sore) and I'm totally and completely exhausted.
The results of the blood tests (vitamin levels, hormones and some other stuff I can't remember) along with the urine test and the pin prick test (testing my nerves' reactions) should help to solidify a plan of action and a way to cope/live with this. For now... I just...
SIGH...
Right now, it doesn't seem important how much I weigh. Well, LOL, it's important to me, but there aren't really any updates in that arena. However, if you can give me some tips on incorporating the doctor mandated exercise (15-20 minutes a day, six days a week) into my schedule I would really appreciate the suggestions. And the prayers. I'm just saying.
16 folks a chattin':
It'll all be okay. Just get through with the tests at least you know what it is and soon know how to deal with it. Good luck.
At least you know what it is. The only thing I know about Lupus is from House, so I don't think I can help much, being that it is never Lupus...
But I'm sending you prayers and hope that a cure can be developed.
Wow Petula, I can really sympothize with what you are going through. As a thyroid cancer survivor, looking back I can honestly say, the testing, poking and prodding is a light thing. Managing the disease is where you will need your strength. I will lift your name in prayer and that your symptoms will not overtake you mentally or physically. Jesus can and will see you through this.
I'm so sorry to hear this, and it must be so hard for you now. I too will be sending lots of good energy your way.
At one of the tv segments I did, I met an author in the green room who wrote a dual memoir with her doctor about her very rare strain of lupus. She was the sweetest lady! Her book was a real story of hope, and if you'd like I'd be happy to dig up the title of it for you. She did a great interview on the show too.
My mom has Lupus. If you ever want to talk to someone living with the disease let me know. I think that the fibro is likely to really be Lupus. It is so difficult to diagnose I am glad that you finally have an answer at least now you can really know what is ahead. Prayers for you and again, just let me know if you want to talk to my mom. She will be here in September too
It's called Dancing at the River's Edge by Alida Brill. She is so sweet, and I feel so lucky to have met her!
ack i'm sorry. i know allll about uncertain symptoms and testing and diagnosis. i know a lot about Lupus, actually, because i have had concerns i might have it, off and on over the years, for various reasons. the best resource online in my opinion is lef.org
look for lupus under 'health concerns' or 'treatments' and they will give you all the best information research and treatments, including supplements and nutrition. that is how i turned my health around the last five years with chronic pain and fatigue, etc.
NYT did a 'day in the life of' on lupus that was great, it has a few minutes interview with six people living with lupus
Sorry to hear about it. Hope that things will get better for you.
My husbands twin brother has lupus. 99.99% of the time he's great. It's just when he has a flare up that it bothers him. Take care my friend!
I am lifting you up in prayer. Stay strong!
like the others have said, you now know what it is, so that uncertainty is out of the way. learn everything you can about it and what you can do to help yourself. i don't know what your feelings are about holistic healings or herbalism or anything of that nature, but i really believe in it. after all, all the medicine had to come from somewhere, can't just come out of the air. keep your immune system strong and that will help.
Wrap thee in cotton,
Bind thee with love,
Protection from pain,
Surrounds like a glove,
Brightest of blessings,
Surround thee this night,
For thou art cared for
Healing thoughts sent in flight.
much love to you my friend!
You guys are more than fabulous! Thank you for the comments, love and support. Thank you for the suggestions and concern. PJ, love the poem. Valerie, thanks for the book title. And, everyone, you'll never know how very much this means to me. Thank you!
I am so sorry about all the health bad news. I WILL keep you in my prayers and send special prayers for you and the babies. You are always in my thoughts, so now you'll be there moreso. I hope the future tests go well.
I've just decided to get up from my desk and take 10 minutes to go ride my bike or take a walk. Every day. In addition to going to the gym.
Can I tell you how much better I felt today? It was the first day I've tried this. So far, so good.
Wow, Petula. That is a scary diagnosis. I'm sorry that it is just another thing for you to deal with right now. I'll keep you in my prayers. Hugs, pally.
Petula, I'm sorry to know that you are going through dealing with this illness. I know someone else with it and I know it can be tough.
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