Please pray, help if you can

Thank you, dear friends in Christ!

I've had a really rough last few days as far as pain, and yesterday when my hair suddenly started falling out, I called the doctor and made it very clear what kind of physical shape I'm in, and I have an appointment this Tuesday. I also talked to them about Anna and will be taking her and her test results with me and we'll figure out if he can handle her too. Just want to make sure it's in her best interest, as he's not a pediatric one.

 

We are back from the doctor.

He said that the specialist Anna is scheduled to see is one of the best and coupled with Anna's age, he said to go ahead with that appointment instead of seeing him seeing Anna. He looked at her and her bloodwork and made suggestions on what should be done. I feel reassured that the hand discoloration is not as frightening as it looks. (a number of people lately have commented on it)

For me, he ordered more specific tests than the ones I had. Of the ones done already, 5-8 were bad. The new ones are more specific to lupus. They did the blood work today, and I go back in four weeks. While he was gone I looked at the notes and it looks like when I go back, he'll have me start a trial of a medication called plaquenil. I've never heard of it, but at this point, I'd be willing to try buffalo poo if he thought it would help. Ew. Just grossed myself out. Yuck! Maybe not.

 

There won't be any news until one of us goes back. I'm scheduled for a return visit and discussion of the latest blood tests in mid-May. Anna is scheduled for the end of June. She seems to be doing pretty good right now, so that makes me happy.

 

I can't wait to go back. I'm in a pretty intense spell right now and the degree of tiredness is scaring me. I'm sleeping all night and still being overwhelmed and sleeping a couple hours during the day as well, remaining tired a lot of the time I'm awake.

There has been some inflammation in my eyes. I wasn't aware that eyeballs could do that, but they were aching a lot and I've become very sensitive to light, wearing sunglasses indoors and out a lot of the time (esp in schools and with the new "green" curly q lightbulbs everyone is using), and went to the retinal specialist where I had my eye surgery before and that's what he said. I'm on steroid drops now, and today I think it may just be a tiny bit more tolerable. It's only the third day on them, so hopefully it's just too early and they'll help a lot more than this, but any improvement is good anyhow.

 

Nope, it doesn't have anything to do with allergies. Right now the eye medicine is a quadruple dose of omnipred. From reading the bottle, it sounds like a type of liquid prednisone.

I was able to walk to and from the car without too much discomfort from the sunlight, so it's starting to work a little bit. It'll be nice when I can do more.

Hubby said I slept very solid last night...for all 12 hours. I'm fighting to stay awake now, but am giving up and gonna go ahead and get a nap in before it's time to start making dinner. It's a really good thing I took myself off of Lyrica, because that made me very sleepy, so I can't imagine being awake at all if I was still on it. That would be weird. Yet it helps with nerve pain, so I'm starting to wonder if the trade-off is worth it. Hrm. I'll have to see what the doctor says when I go back, because this isn't working out well right now as far as being able to function in a normal...or even semi-normal fashion.

 

Thank you. I've got two appointments coming up next week.

 

Had an appointment today and kinda lost my temper. I still haven't had anything done to make me feel better or a solid diagnosis. The doctor brought up more tests and a kidney biopsy because I'm losing a lot of blood, and I'm so sick of all this that I just told him I wasn't willing to discuss it and I'd rather bleed to death than be touched again for another medical test. Then I left. Maybe when I'm not so tired I'll be able to think more clear.

 

We're very familiar with the Cleveland Clinic...Anna went there for her heart when we used to live in Ohio. We actually had an appt. there again last year, but didn't keep it as she was doing good at that time. It's a very decent hospital. We were surprised when we went to the Oregon health and science center for her heart, that the doctor there and the one from Ohio were both well aware of each other. Sure made communications easier!

We just got a call the other day that Anna's appointment has been moved from June 23 to JULY 28th because the doctor won't be there on the 23rd. I was pretty much speechless after they told me. If we want it moved up, we have to call her referring doctor and have her request it moved up.
But she's already done that, which was how we got the June 23rd appt. in the first place.