'98 Journal Archive
12-29-98 Still feeling good. Some minor joint pain and swelling of hands, but all told, I'm doing great. The asthma is easing. Abd. is still tender, but that's always there. I can live with it. 8-) LOVE this cooler weather.
12-9-98 Well, its becoming a bad habit about waiting a long time between entries here.8-) I've been doing very well, all in all. The hives are still around, but only ocassionally. The cooler temperatures and decreased sun strength has helped a LOT. I'm being extra careful about scrubbing my hands frequently while in public places to keep the dreaded "flu" and pneumonia at bay. So far success.
I've also been pumping vitamins and colloidal minerals into me. I've found the B vitamins are REALLY important to me. When I take enough the jerking of my muscles stops. Cool. :o)
I am having the best Christmas I can remember this year. I have energy, joy, and abundant Christmas cheer. I am well. I am not overdoing. I am enjoying myself.
I wish everyone a very Merry Christmas and a bright, prosperous New Year. ((((HUGS)))
10-9-98 Boy, its been a long time since I wrote. I have been sick with various problems for some time now and just haven't had the energy to write. Got another asthma attack, then over did things and had a small flare, then got bronchitis. I am getting better from both the bronchitis and my body's reaction to the antibiotics. Now it seems its all coming back. Having trouble breathing again, but I have managed to get some housework done. 8-)
Had my birthday a few days ago---which was made special by getting cards from my email friends. One very special friend sent me a gift that I'll cherish for as long as I live.
I have started increasing my herb and vitamin intake. I got a great book on natural healing and have started adding what they suggest a little at a time. I'll keep you updated, if at all possible, about how it goes.
8-31-98 Learning not to eat apples. Guess there is too much fiber in them. Really messes up my stomach. Otherwise doing well. Feel weak and dizzy sometimes, but that may be from having to sit at home without moving around much.
8-30-98 Feeling better. Really not having any problems worth mentioning. The meds are dong a good job of keeping my arthritis symptoms down. I am having spells of dizziness and weakness, but not anything I can't handle. Keeping cool.
8-17-98 Well, not a single "friend" has asked me if I needed anything. I'm stranded, running out of bread and food in general and no one has thought that I might need something since my car broke down. Typical I guess. Just walked through the heat and sun the other day to give a "friend" a perm and haircut, but has she asked if I need anything? No. It wasn't easy on me doing all that, but I thought I'd save her money and aggravation. So much for that meaning anything to her. Guess they all just haven't thought of it yet.
8-15-98 Feeling better. The asthma seems to be easing and I'm feeling more energetic. Having a lot of trouble with my balance, which I guess makes people think I'm drinking. haha. I'm experiencing more facial and muscle ticks, especially on the left side. There are still feelings of vibration inside me. Very weird. Its like my organs are twitching all at once. I'm thinking central nervous system problems.
My car broke down today. 8-( I have my neighbor working on getting it fixed. 8-) I hope I get it back soon. I was getting use to having it.
8-4-98 Breathless still, but not as bad. This time when I got my anti-inflammatory refilled they gave me Etodolac instead of the pure generic. Guess they were out of the other. This medication seems to be working much better than the other. I'll stick with it if the arthritis keeps under better control. There was a huge difference in the price, but its worth it.
Spoke with my mother. Seems lupus and autoimmune problems definitely runs in the family. Grandmother, mother, father, and me. Considering all the families I've been hearing that have multiple cases of lupus, there seems to be a genetic predisposition to it.
8-2-98 Things have been on again/off again.My arthritis has gotten worse, I'm having more and more spells of breathlessness where sleeping laying down is impossible. I'm just not doing the greatest, but I'm hanging in there. Every day I try to do the most I can--to get out--to do a few more chores. I don't always succeed, but I'm trying. 8-)
7-14-98 Feeling pretty good these days, but I'm staying in the A.C. and staying out of the sun. I'm still getting the occassional call for these men--of various names. American Express refused my registered letter concerning this man's actions. I guess they imagine that will excuse them if this man gets credit with my ID. Nope. I'll take them to court, registered letter or not.
7-6-98 I had a rough last night. Got too hot shopping Sunday. I didn't exactly go into a flare, but I could barely walk because of pain and stiffness. For some strange reason I'm having visual problems like I did when I was having migraines. This usually happens when my blood pressure is up. Luckily the pain of my migraines ceased as I got older, but still I have the visual effects and general aura.
I was diagnosed with classical migraines when I was 19--after having them from the age of 13. With classical migraines you get wiggling light displays that obscure your vision, then--and sometimes before--you get an aura of some sort. I generally smell coffee, though I don't drink it or particularly like the smell. Tonight I smell chocolate--more enjoyable.8-)
I no longer get the nausea and vomiting or the excruciating head-ache. About the worse that happens now is that I have to pull over while driving and wait for my vision to clear. (I'm going to have to proof-read this later as I can barely see it. Excuse any misspellings until then?)
I'm going to take some blood pressure medicine and relax. I've been under a lot of stress lately.
7-1-98 Health-wise, I'm pretty good. I'm still having breathing problems, but since I started on my medications I have tons more energy.My tongue is sore--which I found out isn't caused by the medication but by lupus. Otherwise I'm great. I have even vacummed my house! WOW! There isn't a dirty dish to be found anywhere. The laundry is getting caught up. Its amazing! I am so thrilled!
6-19-98 Well, as if I didn't have enough problems, now someone is trying--or has succeeded--in stealng my identity. It started by getting credit card aplications in someone else's name, but with my business name and my address. Someone went through my trash tonight and I've been getting calls from people looking for these jokers. (They sound like bill collectors. Not nice either.)
Don't I have enough problems without this? Does anyone have any advise on how to stop this? If I couldn't sleep before, I really can't now. This is too much.
6-17-98 I've been on the medication the doctor prescribed for nearly a week now. The Lodine is doing its job and my joints feel nearly normal. I had to stop taking the lasix, though. I cannot express how badly I felt while taking it. EXTREME weakness, nausea, feeling faint and too weak to stand. I had spells where I could barely breathe or take care of myself. Not good when you're alone.
So I stopped taking the lasix and now feel much better. Maybe the lasix and the BP meds were too much, but I was feelng more than just dizziness from low blood pressure. I felt extrememly ill. I'm starting to recover from its effects finally. Guess I'll have to tell him that if he wants me on a diuretic, its going to have to be another kind. I won't take that stuff anymore. Nothing is worth feeling that bad.
For some strange reason my tongue is so sore I can barely eat or drink anything. It has to be either the Lodine or the Atenolol. I'm pushing B vitamins in me because sometimes that helps. I hate this. Its like the entire surface of my tongue has been scrubbed with rough sandpaper. Every nerve is standing up to be counted.
Even gelatin or creamy foods hurt. Graham crackers are a torment. Bye-bye to one more thing I have to give up. Maybe its only temporary.
I didn't mind giving up milk, since I never really liked it anyway, but I miss eating cereal. I've had to give up dried beans--oh, for a plate of pinto beans and bread! Or black-eyed peas. Or Great Northern Beans. Ok. That's enough torture. :-)
I'm going to get through this. All in all I'm feeling better and have more energy. (My dishes are finally getting done.) The inflammed tongue is a small price to pay. I'll see what the doctor thinks if it keeps up.
6-10-98 Well, had my doctor's visit. My BP was as I thought--high. (190/108) Had that icky procardia under the tongue again to bring it down. My doctor just shook his head with a "We got to get that pressure down" speech and gave me 2 prescriptions for new BP medicine.
It was a good day to go see him. Every finger, toe,and joint is stiff and hurts, except my back. He put me on Lasix again--guess my lungs are filling up again. I have a prescription for my Lodine--plus samples--cough syrup for my occassional bouts of coughing until I'm ready to die, and something I have to look up for insomnia--when I decypher it. 8-)
At least he isn't like most doctors I've had that want to pop me in the hospital for my B.P. problems.Guess we've known each other long enough for him to know he would be wasting his breath. 8-)
I like that man. He is so caring and sympathetic--gentle. He asked me a few questions and kept saying, "You poor thing. We'll take care of that."
I predict I'll be feeling a lot better soon. I have to go back in two days to have my blood pressure checked- -understandable under the circumstances. No wonder I've been having so many headaches, but then I KNEW it was high. My head gets to feeling full and my pulse booms and I have a hard time walking and breathing.
Once, I made the mistake of eating pumpkin seeds--with all that salt. WOO, never did THAT again--once I figured out what was wrong. I nearly had a stroke--my body wouldn't cooperate with me, I couldn't walk or talk. BAD! My sweet doctor must have been unusually concerned because he did exams he doesn't normally do. Guess he was concerned about blood flow and all. (It didn't help that I couldn't tell the nurse the name of my BP medicine and acted like I didn't have a brain. Guess he wondered if I had suffered a stroke already. 8-) Just menopause and lupus. I don't have a chance of recalling my name sometimes. Its a conspiracy. 8-)
Well, that's enough for now. I'll check in with you in a day or two and tell you how its going.
6-8-98 (Going to try this again.) I thought putting the newest updates here would be more convienent for you, so here it it. If you need to read anything before this date you'll have to scroll down, but once you are all caught up, this will be easier for you, yes?
Feeling pretty good. Not that I feel excellent, but just riding the status quo, you know? There is still the headache, stiff joints with random pain shooting here and there, and my on-again off-again cough. Just something you live with.
At least I have some energy, though not a lot today.Recooperating from the week-end is becoming a normal thing, too.:-) Didn't get out in the sun or get too hot, so I'm doing better than usual. Wecooked out in the shade of our yard, sat around eating steaks, roasted corn, and my special baked potatoes with onions. I ate more than usual, but then I'm paying for it today.:-) Sometimes you just have to have a little fun at whatever the cost.:-)
5-6-98. My husband finally got a good paying job with good benefits. Down-side? He has to work out of town and the benefits don't start for six months, but now we'll have the money for my medicines. This doesn't mean I'll get on MORE medicines. I'm so much luckier than some. I don't have to be on the horrible prednisone or cortisone or medication for other problems. I just need my Lodine and hive medicine, though something for sleep helps me a lot.
I really feel for those who have to be prednesone.The side-effects are horrible--besides being physically altering. Friends and relatives hardly recognize loved ones once they have been placed on it. These people get round "moon" faces, humps on their backs, and suffer all sorts of damaging effects. The medication saves their lives, and many will eventually get their dosages cut back and go back to their old appearance, but the toll on them is so damaging. I am continually thankful I can control my disease in other ways.5-17-98. I'm having the mother of all flares. Every single joint in my body hurts. I'm suffering headache, fever, extreme exhaustion, abdominal pain, and I just feel awful. I knew it was coming. My husband came home for the week-end and I got too hot and got too much sun. I took a nap hoping it would forstall it, but nothing prevents it. I'm here, trying to swallow down someTylenol caplets--the only pill size and shape I can swallow when I'm like this--and typing at 12 MN with swollen, painful hands. If you are to understand what lupus is like I have to do this. Time will ease the impact of it on me. I'll remember I don't want to go through it again, but how very bad I felt drifts off somewhere.
5-23-98. Things are back to status quo, pretty much. The joints in my right foot and ankle are hurting with a stabbing sort of pain, my head aches all the time, and I'm having gastro-intestinal problems, but other than that I'm feeling better. The flare of the first part of the week was one of the worse I had suffered. Now all I can really remember was feeling terrible, exhausted, and the night sweats. Strange how memory of pain and exact symptoms fades so quickly. I just KNOW I will not put myself in the position of suffering that way again if at all possible.
I bought some vitamins/mineral preparations to try out. Purchased a new type of sunscreen claiming all day protection, too. (Water-proof, UVA/UVB 45.) I'll let you know how these things work for me. (Considering how sensitive I am to the sun, if this sunscreen works it should work for anyone. Bad thing is, it has to be tested in the SUN. Guess I'm the lab rat now.:-) ) Anything for friends.:-)5-26-98. Hurray! Got a car I can drive! I went to pick up the insurance papers and tomorrow, God willing, I'll go get the tags and inspection. It is so strange to drive somewhere. I found myself very reluctant to go out, guess because I've been in the house for so long. It was freedom.
The new sunscreen I tried seems to have done the trick. I used Coppertone, 45 All Day UVA/UVB Protection. Waterproof, it says, and I need that the way I sweat--I may be a lady, but I don't just perspire--at the slightest bit of heat. I used it Saturday and though I didn't stand in the sun, I got enough to make me sick without it.
It is very thick, white, smells a little of coconut like most suncreens, and is PABA free. (PABA products do not adequately protect from the different types of UV rays.) You put it on where you have exposed skin, let it dry 15 min. before you go out. Once it was dry I put make-up on. It cautions against rashes, but my sensitive skin didn't react at all. Yours may, if you try it. I'll keep testing it with more and more sun exposure to see how much it can take.
Despite a relatively busy week-end I'm feeling good. A little stiffness that doesn't go away, but generally pretty good.
I've started taking colloidal trace mineral drops in juice and am noticing more energy and more positive attitude. I'll try it for a month or so before I add DHEA or other vitamin/minerals. I'll give each of them time to work before I add another or quit using it. I'll keep you posted.:-)5-31-98. Well, I made it through the week-end in pretty good shape. I paid dearly last night for helping a friend with her garage sale, but what, I'm expected to abandon my friends when they are in need? I stayed in the shade, but the heat index was 106. I left early, when things slowed down, yet not early enough, I guess. Every part of me hurt. I made the decision to go to the doctor next week--that's how bad I felt. I'm better today. Hands are stiff and my abdominal area still hurts, but I am better. Any improvment is good.:-)
Been driving around in my big old car and feeling like a real person again. Life is good right now. Its about time.:-)6-4-98. Feeling pretty good. I've started having pain and trouble walking because of my left hip. I suppose its arthritis. Could be pain radiating from my left kidney, too. I'll mention it to the doc when I see him. Meanwhile, I am trying to exercise the leg gently by walking more since it isn't hot to touch or anything. My having a little more energy helps with that.
I actually scrubbed the kitchen cabinets today and cooked myself a little brunch. I've been living off of sandwhiches which could just be thrown together--whenever I felt hungry--which wasn't too often. I'm getting my prayer answered and am losing weight, but I didn't really want to loose it THIS bad.:-)
Went out in the car yesterday to take a neighbor to the store. I just can't get over the freedom. I'm still feeling reluctant about getting out, but it helps to have someone with me. It was good THEY needed to go, just so I could get motivated and buy my own groceries.:-)
I don't know if my change in attitude and energy levels are tied with problems getting resolved or if its because I feel a little better or if it has something to do with brain chemistry. Who cares? As long as I have some energy I'm happy.A couple of notes here. 1. If you have lupus DON'T USE ECHINACEA without real caution. Believe me, I found out the hard way. I was warned about it, but the warning was so lukewarm I didn't really believe it. Boy, I do now. It caused so much irritation and swelling of my entire "private areas" that I just wanted to jump out of my skin and thought I was going to go nuts. I tried everything, thinking it was a yeast infection--something women lupus sufferers can have problems with. The problem didn't clear up until I quit taking the echinacea. Anyone want the rest of my bottle.:-)
2. I REALLY want all of you on medications to check them out. Because of a friend's sudden developements concerning her lupus I checked out her meds. It scared me. She is taking medications that shouldn't normally be taken together and some she may be getting too much of. I'm not second-guessing her doctor, but I wonder if the doc really realizes what she is on.
PLEASE check out your medications. I'm going to the link page just to be certain I put a medication database in for you. I found a GREAT one--with all the warnings and no pussy-footing. You must be informed about what you are putting in your bodies.
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