12-28-99 While I'm here taking out expired Christmas things I might as well update this. 8-) I've been doing pretty well. I had a mini-flare a couple of weeks ago and I swear, you could have just shot me and put me out of my misery and I would have blessed you. haha I guess I got the flare and a VERY deep depression at the same time. It only lasted a few hours, but BOY was it rough. Otherwise, I've been pretty good. I'm dealing with the suspected bouts of diabetes pretty well and have figured out that more protein eases the symptoms. I'm not eating many sugary things--don't seem to want them.
Oh, news--haha I ate my first citrus fruit in years the other day--a wonderful tangerine. NO ABD. PAIN. I'm not going to go nuts on this. I KNOW too much really hurts, but one once in a while now doesn't seem to irritate the bowel lining so much. YES!! haha I got my Christmas present this year. 8-)
11-3-99 Its taken time to get over the move, but I am feeling a LOT better. I've almost completely gotten off of all my medicines--except for blood pressure. I'm having so many varied small signs that I think I've developed diabetes. A real disappointment, but it happens a lot with lupus. Heck, it isn't like there are too many foods I can eat. Now I may have to give up sugar. It would explain the strange nerve problem I've developed and the sores and all. Guess I'll have to go to the doctor before long and get tested.
The up-side is that maybe I will feel better. I'm not too sure its worth it, though. I can't eat dairy products, I can't have oranges, grapefruits, tangerines, or any citrus. I can't eat dried beans. I can't eat too many raisins, pinapple, and too much bulk causes me problems. NOW I won't be able to eat sweets? That really sucks. Since lupus patients should avoid nutrasweet--something I'm allergic to anyway--that really limits things. What a pain!!
8-29-99 Well, a lot has been going on. Moved to the desert to help the lupus--and it has helped some--but still suffering shooting pains in toes, fingers and other joints. My sinuses have cleared up and my asthma isn't as bad, but sometimes I wonder if it was worth it. 8-) I got totally exhausted with the packing, moving, and traveling. I still don't think I'm over it all. I've been having a lot of trouble with fevers and edema. My ankles swelled so much they looked like balloons. haha Been battling the lupus blues again...what a pain. Its not like I haven't enough trouble. haha Not sleeping well again. Seems I can't sleep more than 4 hours every other day or so, but its better than no sleep for three days. 8-) The interstitial cystitis isn't such a bother with the Urispas the doc gave me, but I seem to be taking more of the med. lately. Perhaps I am having trouble adjusting to the water balance in my body here. Have to drink more water, which sets off the spasms. Then there is the diuretic I have to take more often.....Oh well, maybe it will calm down soon.7-1-99 Things have been pretty steady. Had a day last week when I was exhausted all day, so I was forced to stay in bed. Sitting up was too much work. 8-) Saw my doc yesterday---new meds. Something for the bladder spasms caused by the cystitis. He's going to try me on the new arthritis drug---Celebrex, but I'm going to get a few tablets before filling the prescription fully. There are so many warnings--including allergies to other NSAIDs---that makes me cautious. Maybe I won't react or have troubles with it and it will control my pain better. 8-) He finally got to hear how erratic my heart can beat. haha The nurses have been telling him, but my pressure was so high yesterday that it was really acting out. haha It doesn't do it all the time, but sometimes it really feels as if there is a bird in my ribcage--trying to get out. 8-) One prescription I cannot make out--no matter how I try. haha I can't even make out what its for. 8-) Unusual for me. I can usually read the most obscure writing. (Lots of experience.) I'll get all the new ones filled tomorrow. I really need the anti-spasmodic med. I hope it cuts the pain.
6-15-99 Still doing pretty good. Stiffness and random pains, as usual, but my energy level is up some. I even went out of town and back in one day and feel well. 8-) No flare from not having slept for 36 hours and riding 600 miles. haha I say that was GOOD.6-9-99 Transient toe pain still, but otherwise doing pretty good. Went out, got a little sun by necessity, but felt pretty good afterwords. The red areas on my neck got a lot worse, but they'll fade if I stay away from the sun. 8-) They never go totally away. I'm getting pretty good about covering all of the red areas on my face, cheeks and neck. haha Doesn't help much when I sweat in this heat, though. 8-) Water-proof make-up helps a little.
5-28-99 Toes are full of shooting pain and are keeping me up tonight. Overall, I feel a lot better. Had a spell of the depression, but it didn't last long, thankfully. I suppose I just get so tired of being so restricted and ill. The pain eventually weighs me down, then add not being able to do all the things I really enjoy and depression is understandable. Did have a strange spell of muscle weakness during the last couple of weeks, which is improving slowly. It was like I didn't have the strength to sit upright or open simple bottles. I wasn't TIRED, especially, but weak. Everything felt like it was too much effort. Arms were heavy, back weak, legs preferred to just hang. Strange. Having a lot of problems with the skin in the groin area---getting sore and irritated for no reason. Sometimes it seems like a yeast infection, but it doesn't act like one and doesn't respond normally to treatment. Guess its just one of those things. 8-)
5-5-99 There's been a slight improvement overall. Tonight I'm having hives, but not feeling so bad. Breathing has eased almost completely. My joints were hurting a lot the past few weeks, but now they are improved. Still have the ocassional random pains which vary from minute to minute, but that is bearable. Energy level rises and falls. Having the muscle twitching again. Hand spasms so bad it is difficult to hang on to things. Looks like another sinus infection on its way, also.
Does it ever stop? Do things ever settle down into something predictable? Guess not.
4-21-99 Major asthma problems. Had to get on my Theophyllin just to get a little sleep. Can't do anything when I can't breathe. Just walking is difficult. Starting to feel better now that I'm on my med. I really hate these spells!
4-17-99 Feeling better. The medications seems to be keeping most of my pain down finally. Still having some minor breathing problems, but today I'm not hurting so much. I've been talking with people writing me lately about the lupus issue and possible causes of it all. Considering that Neanderthal's suffered from autoimmune disease--as seen in their bones--I can't see how so many people claim modern living brings this condition about. I suspect more and more it is genetic--something that comes with being human. No food or life-style could possibly be in common between us and "cave man". It sounds like just a way to make money off of people who suffer--or just plain ignorance. I personally am very "fed-up" with being blamed for my condition. I HAVEN'T done anything that millions of others haven't also done, yet I get lupus from it? Does THAT make sense? If ancient people--without modern foods, modern medications, modern life and cares--can have arthritis, which is an autoimmune disease that can be proven, why does mine and all the other sufferers' condition have to be caused by "not eating right", "not living right"?
This isn't to say that I don't think there is anything that can be done to deal with the condition. I think with modern science and products we can assist our bodies in repairing itself--much like antibiotics help the body to fight disease. I'm going to keep up with my herb/supplement trials. I also think that a positive attitude can help the body to heal. What I am rebellion against is that it is something I have done to bring this about and that by following bizarre diets and complex "plans" that I can be healed. I resent someone nodding their head and saying things like, "Its from potatoes", "its from diet"--like that makes my suffering less. Ridiculous! If that was the answer we would all be cured. If that was the answer then "cave man" had a more varied diet than it is henceforth believed. It doesn't make sense, people.
4-9-99 Got a lot of sleep last night, though woke after 4 hours and went back to sleep a couple of hours later. Feeling energetic today. I'm wondering which comes first---no sleep, feel bad or feel bad and thus no sleep. 8-) Getting enough sleep seems very important to my feeling of energy and well-being. Sounds obvious, but we're not talking just feeling a little tired or choosing to stay awake. Wonder if I were to actually get sleep--by whatever means--every night if I would feel better. I've always had trouble sleeping. Hmmm, need to work that out and see what happens.
4-6-99 Having a rough time, though today I'm feeling a bit better. Haven't been sleeping well. Toes, ankles, fingers, and hips have been giving me fits. Allergies have been acting up with all the pollen. Energy level has bottomed out lately. Sometimes its too hard to even sit up. Like I said, today is better. Hope this is the start of an upward swing. 8-)
3-20-99 Tongue is better, and my muscles have stopped hurting so much. Still having the random attacks on various joints, but that is better than what I was going through. Energy is slowly building back up after the last flare. Starting to feel like living again. 8-)
3-11-99 Tongue has been very sore and red now for about a week. It gets very red and feels raw. Fissures develop on my tongue's surface after each episode. (Pretty soon my tongue is going to look like an eroded hillside. haha) I was reading an ADA article not long ago about how an alert dentist can determine lupus by the fissures in the tongues of patients. So much for doctors saying the tongue problem isn't associated with lupus. Nothing helps this condition; with me anyway. I've tried a number of things. I stick with eating soft foods until it goes away; avoiding too hot or too cold foods, also. This too will pass soon. Until then, I do the best I can.
3-5-99 Its been a long time since I've felt good. Exhaustion is a problem again. Asthma is really acting up, though my joints are doing better. My feet are itching and burning more than usual and about to drive me crazy. 8-) I've tried the lotion, the cool wash cloths, and rubbing--nothing helps for long. Wish I could trade them in for new feet. haha This is getting REAL old.
Need to speak with my doc about the betablocker for my blood pressure considering my asthma problems. (That type of medicine can aggravate asthma.) Perhaps its time to switch medicines. I've been on this far longer than is usual.
2-17-99 Bad turn here. For the past week or so everything has been hurting---head, muscles, joints, toes fingers, stomach--you name it. As usual it isn't all the time. For half a day my ankle will hurt so bad I can barely walk and then for the rest of the day its like nothing was ever wrong. Tonight I can't sleep because it feels like I'm sleeping in fiber glass insulation. My skin itches and prickles. Last night I had a spot near the ball of my right foot that hurt so bad I could barely move my toes. This morning it was gone. My toes are staying painful most of the time, but hip, knee, and other pains come and go. Bother! I hope it is these crazy weather fronts. 8-)
2-7-99 Feeling better. Have started an herbal and vitamin regimen. Taking kava kava for sleeplessness and stress, pycnogenol--with added co-enzymes and herbs, calcium/magnesium.I intend to go through a liver cleansing program--very s-l-o-w-l-y. Have learned people with lupus and or kidney disease should avoid high doses of Vit. C and B. Those two vitamins are hard on the kidneys. Hmmm, interesting.
2-2-99 Up late again. I think I've tracked down the cause of my abdominal pulsing. Very possibly its caused by Interstitial Cystitis. A common condition in autoimmune diseases. I'm going to start a page to explain all this and other conditions. Basically the symptoms are frequency of urination, pain behind the pubic bone--and boy, what pain--and I've been experiencing something like bladder spasms. From all I've read on it, the typical treatments don't work well at all---not consistently. At Mount Sinai Medical Center doctors are having good luck with instilling DMSO into the bladder. More on this later.
1-28-99 Arthritis is really acting up. I'm also having trouble with the lupus affecting my mood. Abdominal pain is still there--and a bit worse. Fingers and toes are really hurting. Another hive attack last night. Exhausted as usual. Nothing new. :-)
1-21-99 Couldn't get any sleep before, now can't get enough. Toes are hurting, as well as hips and fingers. For a while wasn't having to take my Lodine, now back on it. On again, off again. Its the nature of the condition.
1-18-99 Feeling energetic and getting a lot done. Arthritis is still acting up, and the abd. thing is still around, but feeling great anyway. 8-) Nasal problems are about gone, too.
Looks like I'm going to have to cut this page up--index it according to year or something. The editor here is S-L-O-W. Maybe dividing it up will help.
1-13-99 Arthritis is acting up. I suppose its this weather front. Isn't bad though, just stiff. I have been having an odd symptom of late--perhaps for the last month. There is a strange--and very noticeable--pulsing in my abdomen when I lay down. It is in time with my heartbeat, so I can speculate what is causing it. I notice it sometimes when I sit, but upon reclining it is worse. Considering I sleep on my stomach--sort of--I find it keeps me awake. My left leg has been falling asleep a lot and sort of aching. I suppose I'll let my doctor check it out, but I don't think it will make any difference. Some things I am willing to do something about and some things I'm not.
Been having the nasal sores again. I can tell when they are arriving by the fact that I sneeze a great deal before they appear. It isn't like an allergy sneeze. More the feeling of starting to get a cold. A tingling feeling. Then they appear. (I have never had a cold sore, but the symptoms remind me of what patients tell me about them. Is there a connection?)
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