Monday, June 27, 2011

I'm Not Certain .....

.... but I don't think I could be any more exhausted than I am right this very minute.
It is now 11:00 and this is truly the first time I have been able to sit down and relax since I left for the doctor's office at 1:00 today.  I didn't get home until around 10:00.

First off, I had my first physical therapy session this morning.  Not my first time to have PT, but the first one since my shoulder surgery.

Let's just say that I was less happy leaving than I was when I got there.
On the up side .... I was able to watch Venus get her butt kicked lose graciously in only 2 sets.  And on the double-up side .... I was able to watch her sister Serena lose this morning (also in only 2 sets) before I had to leave for PT.
I think those were the high points of my day.

I finished PT and then came home to have a business call ..... yay for Camp Widow getting close!
After our meeting it was time for me to go sit in this new doctor's (new to me) office for over an hour.
I asked 2 other women waiting with me if they were new .... they were not.  And yes, there's always a wait.  Especially on Monday's because that's "infusion day".
No, I didn't ask, but I have a fairly good idea and didn't want to learn any more about it.

So I finally get called back, weighed (ugh!), temperature and BP taken.  No problems there.
I then sat in the exam room and waited again.  This time the wait was much shorter.  He came bustling in, introduced himself, and then managed to bring tears to my eyes by shaking my hand.
Have I said that I seem to hurt all over?
Yeah ...

He sat down, looked at my paper work and then asked who sent me.  I replied that my regular dr. had.  He asked why.  I said that they told me that I needed to see him because my blood work came back positive for R.A.
He looked at the papers again and then said that he wouldn't consider my "number" to be positive.  It was the lower region of positive and he said that doesn't count.

I didn't know whether to laugh or cry.

I really did want to hear the words, "There has been a mistake.  You don't have R.A.  Now just go skipping merrily on your way and enjoy the rest of your life."
But.
And this happens to be a rather large "but".
I.
Am.
In.
Pain.

Constant.  Never gone.  24/7.
Sometimes it eases up a bit, but that's only by taking some very strong meds every 4 stinkin' hours, which I don't want to keep doing.  I know that after a while I'll grow accustomed to that med anyway and then it will no longer relieve any of my pain.
It was at about that time that I began to think I may be losing my mind.

Then he started to ask about my symptoms .... when the started, how they progressed and how they limited me.
He then asked what caused me main throughout the day.  "You mean, besides your hand shake?", I asked him.
He smiled and said that his handshake was a test to see how his patients are doing.  He could tell that it had hurt me when he did it.
What a lovely person.
Then he examined me .... every single joint, every swollen appendage, my lungs, my heart and my liver,.

 He concluded that I did, indeed, have R.A.  (don't know if it was the feel of each of my joints, the always-swollen appendages that used to look like legs and feet or the fact that he made me nearly jump out of my skin every time he touched a joint).  But .... he would not give me that diagnosis until he took 7 vials of my blood, put my on steroids for 2 weeks and then had me come back in.
I asked him what the side affects are to steroids and he immediately said, "Weight gain.".  And then my eyes filled with tears again.  He said, "I know.  I hate to have to tell people that but it's true.  But it's only 2 weeks so it'll probably on be a couple of pounds."
He does not know my body.
If I even look at a picture of something fattening I gain 3 pounds.
And here I am, still 5 lbs over where I want to be because of that damn patch.  So great.  Let's just keep adding to that.
And ..... if I find that the steroids help and let me reduce my intake of pain meds, then I do have R.A.  Which also means that I'll continue to be on steroids far longer than 2 weeks.

Poor guy .... he knew I was upset.  He told me again that it would only be a couple of pounds.  I retorted that it wasn't just the weight .... it was also that I didn't want to look like that!!  And I pointed to a picture on his wall of a pair of gnarled, misshapen, frozen hands.

He told me not to worry about it and to not lose any sleep over it (and I told him that the pain was preventing that anyway to no big loss).  He said to just wait and see.  And that it could be worse.  At least it's not cancer.

Well, yes .... let's all do a happy dance for that fact.

I told him that I had already been through "the worst thing" .... and he agreed .... a little sheepishly.

Besides, he didn't seem to been in any pain at all as he was writing all of this stuff down.  Must be nice.  I can't even hold a pen anymore without resembling a cave man.

So papers were signed, prescriptions filled out and orders for more blood work were given.  Seven vials, one appointment set for 2 weeks, and paperwork all about RA  later .... and I was out the door and then in my car, with instructions to research RA and learn every thing I can about it.
I tried vey hard to not cry as I sat in my car.
And I didn't.

I'm going back to my former attitude.  Is it what it is and there's no sense worrying about it right now.
And besides .... after all I've been through, I'm pretty sure I can go through anything.

But I'd really, really like to not have to.

Happy Monday/Tuesday, Peeps.

5 comments:

okierand said...

I have never commented, but wanted you to ask your doctor about enbrel or humira as a treatment. I have psoriatic arthritis and they work. Much better than steroids,

Linds said...

I know all about pain from the CRPS and the weight gain and the tablets - endless meds, and the lidocaine patches so I can get some sleep at night. Then the weight gain makes the pain worse and the body image takes a dive and the pain - it doesn't go away. Ever. And then it is almost the anniversary of Geoff's death and it is all LOUSY. You know? Yes, of course you know.
believe me, J, there are times when our lives have mirrored each other so incredibly..... Keep believing. Keep praying. Keep plodding on. I am there alongside you.

Beth said...

hugs.......so sorry you are still hurting. Do your research, not only on RA but on doctors; I am not saying yours is not good; but there is never any harm in getting a second opinion. there are sooooo many new meds out there you might not have to suffer the side effects of steroids. Ask your PT, they probably have referrals from lots of different doctors and may have an opinion. Wish I could help, but I only know rheumatologists in Boston and Phila. Continued prayers.

Patti said...

Oh I so wish you did not have to go thru this stuff, but guess we just do what we gotta do. I just hope it all helps you feel better. When you do your research, see what they say about food, cause my SIL controls her RA that way.

Anonymous said...

Just a lurker here...
My aunt was diagnosed with RA in high school and was in such constant pain that she could not walk without crutches. She is now in her 40s and is a waitress part time because of the amazing meds they have found for her. She even bowls on a league. Hold out hope, there are really meds that work. It just takes a bit to find the right combo.