I haven't written in here for quite a while because I think, so far, that I am in remission. I barely break out in hives as much so haven't had to take any Benedryl at all for the past hmm... two months I think or whenever was my last blog. I still have the joint stiffness and toss and turn at night. I can sleep now, not total insomnia, but I still have those wonderful long movie dreams all through the night because I'll wake up from the stiffness then go back to sleep to start another dream. My hands still close up in a tight fist on their own so my wrist and fingers hurt. I get really hot all of a sudden, like fevers, sometimes out of nowhere. The pain on my chest has changed to a different spot near my left side of my heart but it's still the same sharp pain inside. I've just learned to deal with it when it happens.
I think I'm in remission because I've avoided having any stress in my life, but by doing that, I hardly go out with my friends, I don't date at all by avoiding to get a boyfriend only because I'm very emotional about stuff, so best for his sake, not to be around me! and of course, my least favorite part, avoiding being out in the sun. Living in sunny California is really hard because you want to ride your bike, walk your dog at the beach, you want to be at the county fair and walk around and just be alive. I know for a fact now that if I am in the sun for a long time and/or I have stress I get a flare. I provoke it. Soooo, this is why I am in remission.
I did go see my Rheume this past September. Well, what's to say, from my 1st visit in July he was so thorough, concerned, a good listener. This 2nd visit was not so much the same. You can tell when your doctor hasn't read your chart and they say, "so where are we at?" Well Duh? you had me do bloodwork so I think we should discuss the results maybe? would be nice to know. So according to him all is good, which I felt was true as far as I could tell on my own. He didn't really ask me what I felt lately so I said I had written a list, which he barely even seemed to absorb. My list had like 23 or so items to discuss. I think because my bloodwork was showing I was "normal" my symptoms didn't matter much, so I just said straight out, I guess this is all part of having Lupus. So the doc now is sending me for my next follow-up with a "Physician's Assistant" at a different location so that just tells me I'm not in the top 5 of being in that bad shape. I took that as a good sign. I guess I could have taken it a different way, if I was a pessimist, and thought he made me feel not that important to keep me under his personal care as his patient, but sending me off to the lower key assistant actually made me feel okay. I'm okay..... get that through my thick head!
I did get the sleeping pills prescription out of him as he was running out the door, 5 mg Ambian I think it was, but my friends talked me out of taking it, said I didn't need any more junk pills destroying my body, so I didn't get the med. They suggested I stay up watching TV when I can't sleep, which I never thought of, really I didn't, so that has worked, but now I don't even try to sleep because I'm addicted to shows like Snapped, Bones and House re-runs, and HGTV and..well the list goes on. I'm sure you fellow insomniacs know which ones I'm talking about.
Also, as Doc is running out the door, I asked shouldn't I get my eyes checked? After a year aren't I supposed to since I'm taking Plaquenil? Which he realizes, yes, that would be a good idea to check them. Only later when I get my referral it's to see an Optometrist. I don't know about you all but I don't know all the Doctor titles but when I called to make my appointment with the Optometrist I asked if they were going to dilate my eyes so I'd make sure I had a ride home and not drive myself, they tell me no, they're only going to check to see if I need glasses. Well duh?, I already wear glasses so this does me no good for my Lupus annual eye checkup. So I pull out my old business card from my last year's eye exam and it states the doctor was an Ophthalmologist. So I call my Rheume Doc and tell the nurse I think I'm being sent to the wrong eye doctor. I explain to her to tell my Doc, I already wear glasses, I really don't think I need to see an Optometrist, so reluctantly she tells me she will call the Doc and ask him. So the next day, I'm told I'm getting a Referral to an Ophthalmologist. So as I have read other Lupus blogs say, us patients really need to stand up for ourselves and say what we have to say for our own well being. Doctors can make mistakes, I'm sure they don't like to be corrected, but it's your body and your insurance. Don't be afraid to speak out for yourself to get the care you need. It took me two years, but I finally got my own Primary Family doctor to believe me when I said I need the 5 day Z-Pack antibiotic when I had bronchitus two weeks ago. I told him frankly, I'll come in to see you, you give me Amoxicillian and two days later I will be at the Emergency room at midnight fighting to breathe, so why don't you just do me the big favor and prescribe me what I really need now. So he has now for the past two years. I like my Primary doctor, he believes me now, he's the one that I kept insisting something was wrong with me since last year June 2009 until he diagnosed me himself by November 2009 that I probably had Lupus. So he believes me a lot more now when I say, I know what's wrong with me Doc.
So as for my work, things are okay, I'm not stressed. I just go to work and do my job. My boss has backed off now that he hired the "back up" lady even though she bluntly told me from day one, that she was not hired to be the back up. Okay that's fine. I haven't missed work being out sick so that has been a good sign too, about the remission part, not the new lady my boss hired.
My plan now is to maybe move back home now to my hometown in Texas. My son is going to graduate high school next year and once he picks out a college to go to whether here in California or if he wants to go back home with me and go to college over there will be figured out by next July. I've been gone over 18 years from my hometown. I have no family here except for my kids. I only moved to California when I was married as my ex-husband is from here. I only stayed for my son to be around his Dad after our divorce and for my daughter to finish college, avoiding pregnancy issues or my son getting in the bad crowd if he couldn't make new friends had we moved back to Texas while he was still a teenager. All the responsibilities I have put on my own shoulders to raise my two kids without their Dad's being around but they turned out great and I'm proud. But now Mama is dead tired and beat. I want to get a simple job, a small little place for myself and my dog, hang out with my sister and my brothers back home. I miss them and I have been gone for a long time. Later there will be grandkids so I'll need some rest to recupperate and get ready for the next cycle in my life...being a Grandma. Boy, I'm old, but you know what, I'm really looking forward to it! (just don't tell my daughter)
