Well, let's see. I'm 34 years old, and have had lupus for 21 years, so it's not easy to know how to begin this. How about just "in the beginning..."
I was at school (which I loved, by the way) and began noticing that it HURT when I crouched down in front of my locker. The knees, the hips--excruciating joint pain had entered my life. So it was off to the doctor for me.
I was very lucky in this respect, because after some blood work and a brief hospitalization, my Doc was able to identify that I had lupus. I say lucky, because in 1978, lupus was still widely unknown and, more often than not, misdiagnosed.
My Great-aunt has had lupus for most of her life, and spent at least twenty years of her life in a living hell because every doctor she saw told her there was nothing wrong with her--that it was "all in her head". I can only imagine how horrible that must have been, and am so grateful that I was spared such nonsense.
I was immediately transferred to the care of a rheumatologist in Birmingham, Alabama, who started trying to get the lupus under control. A variety of drugs were tried, but from day one I have been on Prednisone, a steroid that is as devastating on my body as the lupus itself--but without it, I wouldn't be here, so who can complain?
Remission--now there is a word. That is when the body shows no symptoms of disease, and medication can be greatly reduced or even eliminated. That is one thing I have never achieved--in well over 21 years, I've not had one remission. That is far from the norm, and rarely heard of, so I keep hoping....
So, now I was a thirteen year old adult. I say that because my chidhood was gone. No time for me to worry about what to wear to the dance or whether or not so-and-so liked me--my biggest concern was "Will I be able to get out of bed today?" And with the severe joint pain and fatigue, not being able to get out of bed was a very real possibility.
Lupus is a disease with so many different symptoms that no two cases will ever be the same, but from the beginning, I've suffered from joint pain and skin involvement, and a very painful phenomenon that my doctor labels "typical lupus belly pain". Imagine the pain of childbirth, but with no reward at the end of it. When this strikes, I have to go to the E.R. for a shot that contains a muscle relaxer, pain med, something for nausea, and a booster dose of a steroid. Luckily, this usually brings the demon pain to heel.
I learned at an early age that everything has a price--in a very extreme way. As a young adult, there are some things that you just NEED to do--like socializing and class functions. While I did keep mostly to myself, I tried to participate in things when my health allowed--like class field trips. But it had a price--one that I was forced to pay. "Paying for it" is just a normal part of life--"I can have fun today, but I'll pay for it tomorrow" is normal in an adult's life, but it's a shame for a child to have to face. But I would make a decision based on how much pain the event was likely to cause me, and then decide whether the enjoyment was worth the price. That is a practice I still employ in my life, but as with everything else, inflation has hit, and the price is quite steep at times. But life is to be lived, so pay I must, for refuse to give up! CARPE DIEM is my motto!
Well, another installment here is past due, so here goes...As I said, Knowing where to start and what to say about 22 years of my life is a bit daunting, but let me just share a few random memories...
I remember being different--never fitting in--having it pounded into me repeatedly--my brother shouting to me in anger one day "You're not NORMAL like everbody else!" - God, that one still brings tears to my eyes. One of my friends telling me "You should hear what people say about you behind your back" but not telling me what because she "didn't want to hurt me". Another friend, on my first day back at school after diagnosis and weeks in the hospital at the age of 13, after my reply of "systemic lupus erythematosis" to her query or "What's wrong with you?" jumping back from me with a yelp asking "It's not contagious is it?"
All these things shaped me, set me apart from my peers. That same frightened student is now one of my dearest friends, and she tells me that it wasn't like that, that people admired me for my strength, my intelligence--that prior to my sickness, it was just assumed that i would be validictorian. With so much missed school, though, my grades did drop a bit--I still graduated well up in the top ranks of my class, but at times it was hard to keep up. I can still remember a few times, though, having the teacher announce that she would have scaled the grades, but for the fact that one student made 100--hiding my paper in shame and fear of the other student's anger. I never felt the admiration--only the fear and isolation.
I remember being sick with this or that for a few days, and then being afraid to go back to school--afraid of the way the other kids would look at me--again, that knowledge of seperateness and isolation from others. So I would postpone it---fake another couple of days--just to avoid that feeling---not realizing that the more I missed the worse it would be.
I was prone to muscle spasms a lot back then. I remember lying with my neck on a heating pad in the downstairs living room--having Tylenol 3's for the pain, but not being able to take many of them. My dad has always been big on this fear of addiction to drugs like that, so they were doled out very sparingly. I guess it is a good thing he instilled that same fear in me, because anyone with chronic pain is at risk of addiction. I've never had doctors that were overly generous with the narcotics anyways, so that helped, too. Even now, when my spine is in such bad shape that my back never stops hurting, I ask for only 15-20 Lortabs a month, and I hoard them for the really bad days when I have to be out and about for various reasons.
Ah, a pleasant memory concerning pain meds:
A couple of years ago, I was helping a friend run a fireworks stand. There are seven very steep steps to get inside, and climbing it had caused some serious inflamation in my left knee. It's been replaced twice, and is in very bad shape now, and I have been told that if it messes up again I will most likely have to have the joint fused. Ah, forgive me, I did say this was a pleasant memory didn't I?
As i said, it was badly inflamed, very swollen, and unbelievably painful--but it is not in my nature to stop in the middle of something, so I kept on going. I was out of prescription pain meds, and was hitting the Ibuprofen pretty heavily. My nephew Josh, then 5 or 6, has such a tender heart, and a very sharp mind. I remember talking to him on the phone one day about the impending visit from Santa. He asked me what I wanted for Christmas. Having recently moved into one of my Dad's apartments and having traded for a newer car, I was quite happy and told him that I really didn't need anything. With his charming childish innocence he said "You should ask Santa for a big bottle of medicine so you won't have to hurt so much. My eyes filled with tears at his love and concern for his Aunt Susan, and I mumblingly agreed that that was indeed a good idea.
But that's not the best part of this little tale. The swelling forced me to go to the doctor to have some fluid withdrawn and one of those wonderful shots in the joint that relieves the pain for a few days. I took advantage of the visit to have the doc write some refills for my standard meds. Well, she was almost out of script sheets, and squeezed everything onto one sheet. Well, I take Prednisone, so they always give me five refills on it. She also gave me 50 Lortabs on the same sheet, so when I took it to the pharmacy, I wound up with an unexpected windfall of pain meds--it was that "big bottle of medicine" that Josh said I should ask santa for--what a wise and dear little angel he is!!
Well, let me hit upon a concept that is very important to me, but one that gives the doctors fits: QUALITY OF LIFE IS MORE IMPORTANT THAN QUANTITY. Back when I was younger, and had to rely completely on the doctors to treat my disease, I spent a lot of time in and out of hospitals due to a wide variety of problems resulting from a lupus flare. With steroids, the goal is to stay on the lowest possible dose, since it is a case of the treatment being almost as bad as the disease. I look back on those days a bit angrily, seeing in my mind that Dr. sitting in his cushy little office when my mom would call him and tell him how badly I was doing, begging for him to dole out permission for a milligram or two increase in the Prednisone to get me through a flare. It didn't do much good, because he usually refused, and I would wind up in the hospital with serious complications from a flare and on unbelievably high doses of the drug to try to beat the monster down--I think my parents pretty much thought they had lost me on more than one occasion--all because some Dr with a god-complex more than an hour away wouldn't listen to a mere patient.
After I got away to college, though, and did some reading, and was becoming much more intune with my body, I became good at listening to it. I began regulating my own medications based on what my body was telling me. Perhaps I am a bit too liberal with the Prednisone at times, but my idea of a liveable dose is nowhere near that of a doctor's. But tell me this--what kind of a life is it that must be lived in bed crying from the pain, with fatigue so severe that even lifting a finger is at times too much of an effort?? Not one I want to live, I tell you!!
I keep my prednisone at a level where I retain my mobility--I still have my bad days, and I still have to "pay for" overdoing it, but by and large I LIVE my life. And I haven't been hospitalized from the lupus in 10-15 years, so I must be doing something right. I'm not saying you shouldn't listen to your doctor, but your doctor certainly SHOULD listen to you--nobody knows their body better than the patient themselves!
Back to that price, though--steroids cause deterioration of the bones and joints--both knees have already been replaced--the left one twice. The hips are near the point of needing replacing, but I will put that off until I can no longer get around, since my body doesn't heal well anymore--the last knee replacement resulted in a staph infection that took nearly a year for me to get over.
And now the latest bill has come due for my years of Prednisone--the deterioration has struck my spine. I have constant back pain--you just have to learn to live with most of it, and avoid lifting and bending whenever possible.
I am very lucky in that I am qualified for a Home Health worker through my Medicaid--she comes twice a week and does my heavy housecleaning for me. I take my older MR brother shopping with me, and he does the lifting and carrying. As long as I am careful and protect it, it's pretty much bearable, but anytime I fall or if I forget and lift something I know I shouldn't, the spasms will strike ferociously a few days to a week later. They are horrible--they start at the base of my spine, and work their way back and forth to the top of my head. If I don't move, I'm, okay, but each time I do have to move, I am struck with another wave.
I fell last month at a craft show, a week or so before my birthday. This 35th birthday of mine was the worst imaginable--I was awakened at 4 a.m. by the feeling of someone trying to rip my spine from my body--definitely NOT a good way to start your day, you know? I was completely unable to get out of bed that day for anything but the necessaries--like trips to the bathroom. Luckily I had a good supply of Lortab and Xanax, and managed to spend the next two days in a drugged haze of pain, avoiding movement as much as possible.
A few weeks ago at the doctor, she pointed out a noticeable curving of my spine, which means that it is getting to the point where I am going to have to see my Orthapaedist--I will, I will--one of these days. Hehehe, I am the world's greatest procrastinator! I am also getting tired of writing, so I guess that concludes this installment of my life with lupus--maybe in another 5 or 6 months, I will get around to part three! Later!
Well, the lupus has really been raging lately--it had me a bit scared. When I go into a bad flare, it always frightens me--I start to feel time slipping away from me--start to obsess about all the things left I want to do before my time runs out--and then ironically do none of them because I am usually stuck in bed.
This flare was like that--I was covered head to toe in the painful lupus rash--it feels somewhat like a bad sunburn, and manifests as raised round welts mostly on my arms and torso. The places I most hate to have the rash is on feet and hands--when its on my hands, I can't craft, or even hold a book, and worse, on the bottom of my feet--walking is almost impossible--imagine, as I said, a bad sunburn, but then imagine having to put all your weight on it to walk--OUCH!
Lots of rash this time, and lots of joint pain--almost all I did for over 2 weeks was lie in bed and worry and fret that maybe this was the last flare. Was almost out of pain pills, had just one Lortab left, and was saving it for the trip to the dr, because I knew I would need help just to be able to leave the house. But I cracked on a Sunday, and took it because I was just hurting so bad. Couldn't go to the dr the next day, because that was the day my housekeeper was due, but I went Tuesday afternoon finally. I mainly went for refills of my meds, it's not like my GP could actually do anything to help. She is so good to me though--wish I could find a Rheumatologist that would talk and listen to me and treat me as an intelligent and rational human being...but my dr problems are a topic for another day! I was up to 50 mgs of prednisone, a very high dose--not good for me at all--my blood pressure was pretty high, so I had to get something for it too. One of the sick little problems with a flare is that it requires higher doses of prednisone, which keeps me from sleeping--the drug hypes me up and prevents rest--but when the lupus is bad, I am in desperate need of rest--the less I sleep, the worse the lupus gets, and the worse the lupus gets the more prednisone I have to take, and the less I sleep...you see the problem?
I was so sore, and was very relieved when she gave me a refill for my lortabs--I hate having to rely so heavily on narcotics, but the pain has reached a point where little else helps, so I do what I have to do. Got refills for my xanax too, which is helping me rest better. We discussed my search for a new lupus dr, and I am determined now to start the search. As a sort of after-thought, I asked her if she knew anything about the DHEA I take for my lupus--the OTC hormone treatment had seemed to help my lupus right after I started taking it, but the effects had worn off. She looked in her books and couldn't find it, so she called the pharmacy and found out that my 50 mg dose COULD be doubled, so I began the increased dosage the next day.
This might be hard to believe, but by Wednesday night, I knew it was helping--it was the first night in weeks I hadn't been covered in rash and too sore to move. Evenings are when I feel the lupus worse, because I take my prednisone at 6 a.m. and as it wears off the lupus gets worse--this last flare the 50 wouldn't even take me to lunch time--during worse flares in the past I have had to go to twice daily dosages to keep the beast beat down--but anyways, for the time being at least, it appears I have beaten the lupus...I hope and pray it stays away for awhile so I can get caught up on things--it's amazing how far things get behind in just a few weeks!!! But the good thing about the intenet is that it's always here waiting for me when I get back!!! LOL, later!!!
Well, things are a bit chaotic lately--lots of nervous upset in my life, which could have been a contributing factor--probably was--but the lupus recently flared very badly. I have been on the DHEA, started at a dose of 50 mgs, and had worked my way up gradually to 150--it seems that it hits some sort of wall in its effectiveness with controlling the lupus in my system, and the difference is overnight. I mean, one day I was fine, and the next, I was fighting for all I was worth to even be able to get out of bed--joint pain was horrible, and the rash was all over--even the dreaded bottom of the feet rash!! UGH!! So I was in serious trouble.
I immediately went on up to 200 mgs of the DHEA, but got no relief, and was up from 20 mgs of prednisone all the way to 50 or 60 some days for over a week--lost track, all I knew was that the lupus was out of control and it was NOT going to beat me!! Unfortunately, as the DHEA falls into that herbal sort of category, neither doctor not pharmacist can or will give me any info about a maximum safe dose for the stuff, so I have been afraid to go any higher. If anyone out there has any experience with this, PLEASE, PLEASE click the email me link below and let me know!!
Well, after about 2 weeks on the 200 mgs of DHEA and 40 mgs of prednisone a day along with it, the lupus finally began backing off a tad--after about 3 1/2 weeks, I was able to decrease the prednisone to 30, and thats where I sit right now--the lupus is there, hovering in the background, just waiting to pounce again, and it is sort of frightening--especially since the DHEA had been such a lifesaver for me, and now it seems that I am about to hit some sort of wall that I can't break through--the only info I found online suggested a 200 mg doseage for lupus patients so that's what I am basing things on--intend to do a bit more surfing on the subject tonight, but would dearly welcome any advice or experience of fellow lupus sufferers on the matter!!
It's a bad day today--lots of pain. At only 11 a.m., I am already on my second 10 mg Lortab. Hopefully it will kick in soon, and I will get a bit of relief. Mostly it's my knees, especially the right one. Too much walking and stair climbing lately--every morning I wake up and roll over from my right side and try to get out from under the covers on the left side of the bed without bending the right knee, because it is always screaming at me. First I limp to the bathroom, then I go for a pain pill. I set my alarm clock for an hour early so I can lie back down if necessary to let the pain pill have time to take effect. I will be so glad when the holidays are over, and I can go to bed and sleep for a week.
It's been fun, but I have been pushing myself unmercifully. I always do a bit of charity-type things this time of year, but this year I was a bit overambitious. The Saturday before Christmas, my Mom, my two nephews, and I delivered Christmas goodies to two different local nursing homes, and the week before that I had done an awful lot of baking to get ready for that event. I've had a lot of fun, but as I said, it was very hard on me.
My problems don't seem to be all that much lupus-related, though. I have been and am still on 20 mgs. of Prednisone daily, and for me, that's a very low dosage--especially considering all the stress and overdoing I have been through. Sort of confuses me, though. I wonder if perhaps the joint pain could have a source other than the lupus. Most lupus patients I know of have more than one disease they are forced to deal with--maybe that's what's going on with me. I sincerely hope so, for though the possiblilty of another disease would seem to be daunting, the alternative would be infinitely worse. I am sure than seems almost an insane comment, but allow me to explain.
My case of lupus has always been steady--no remission--but flares have always responded well to increased dosages of prednisone. And I always know when I am flaring because I have a very distinctive lupus rash that warns me. If I am in a flare now, with no rash as an early warning system, then it really scares the crap out of me.
Lupus can do absolutely horrible things to one's body, having the ability to attack and damage any organ or system at will. I have been lucky that my major bady organs have, for the most part, been unaffected. I remember diagnoses of pericarditis and pleurisy way back in the early years, but I recovered well. Kidney involvement is one of the most terrifying aspects of lupus. As I believe I have explained before, lupus is basically an immune system run amock. It somehow decides that the patient's own body is an attacking germ or virus, and seeks to destroy whichever part of the body it is against at that particular time. If it decides a patient's kidneys shouldn't be there, the damage lupus causes can lead to such severe scarring that it becomes impossible for the kidneys to do their job properly.
So far as I know, until recently my kidneys have not been affected, but several months ago after what the drs. believe to have been a mild heart attack, it was determined that my kidneys are no longer doing their job properly. One terrifying morning I awakened and couldn't breath. My chest felt as if it was on fire, and I was desperately gasping in small quantities of air in an effort to sustain myself. A panicked call to my doctor led to a trip to the Emergency Room. I don't think I was given anything for pain there, but I had already taken 2 7.5 Lortabs before I ever got to the ER, and maybe they had finally kicked in. In any event, the pain had eased, and then I was given a breathing treatment with something that soothed my pain-racked lungs even further. The Dr. ordered a shot of Lasix to clear my lungs, for it had been determined they were almost totally filled with fluid. In retrospect, I was able to trace an event that was almost certainly a heart attack back to six weeks prior to this occasion. I was told that a heart attack can result on a diminished ability by the body to remove fluid properly. I was placed on 3 or 4 different fluid and blood pressure pills, and amazingly after a couple of days I discovered that I actually have ankle bones under the softballs of fluid filled tissues that had been my ankles for as long as I can remember. Gone also was the most embarassing phenomenon of becoming winded and gasping for breath after even a short walk from one room to another--how wonderful it is to discover the joy of taking a deep breath and filling your lungs with clear sweet pure air!!
Last day of the year, and what a crappy one it's been thus far. Lots of joint pain today. It doesn't begin to approach the degree of pain I felt the other day with the esophageal spasms, but I would put it at a 7 or so on a scale of 1-10.
I slept very well last night, though, after several swigs of my green cocktail--that's something the doctor prescribed for me to help with the pain from the acid reflux--it's mylanta with a dab of lidocaine mixed in--ever so much better than normal meds at relieving the pain--the lidocaine deadens the throat on contact--good stuff!! I tried once to sleep in my bed, but it didn't work out--the acid reflux wasn't about to allow me the luxury of sleeping lying down. So I dragged my thick puffy comforter off my bed and cranked the heat up really high, and stumbled to my recliner. Oh, I had a full mg of xanax in me too, figuring it might help prevent the spasms as well as help me sleep. Somehow I managed to get as least a full 7 hours of sleep without interruption. This is an event that occurs, at most, once per month. I would have thought it would have had me feeling all sorts of chipper and spry, but when the alarm went off at 6, I dragged my covers back to my bed, reset it for 7, and dozed a bit more. I should have taken a pain pill before I lay back down, but was too asleep to dig through my purse for them.
The pain is aggravated by having to get out into the cold, and is only now beginning to ease off. Of course, the fact that I have had both a fiorecette and a Lortab could have something to do with that as well.
I am just way too old, and these bones are just way too tired for me to continue to do all the things I have done in the past. I have got to find a way to cut back on my activities and rest more. During the holiday season, though, there are just so many things to do, and so many obligations.
Grocery shopping is one thing that has become increasingly hard for me to accomplish. I always carry along my older brother, and he does do most of the lifting and carrying, but just getting in and out of the car so much is not an easy thing for me. My knees, hips, and back hurt so much even on a good day that I really just hate to leave the apartment. I do love my home though--it's a nice place, full of all the things I love. I have an excellent collection of fantasy novels, enough craft supplies to carry me through several years, a big fluffy recliner the perfect distance from my TV, VCR and Webtv, and the thing that has lately filled many long lonely hours: my computer. Through lots of scrimping and saving, and some generous gifts that I even now struggle to repay, I have managed to get a pretty impressive setup here. To start, there's the Hewlett Packard computer package, then I upgraded to a photo quality printer so that I could do a better job printing the pics from my digital camera (a generous gift from an email buddy--a truly wonderful gal). I've also got a scanner so I can incorporate some of those old fashioned photos into my creations; and, just recently, a CDRW, so that I can better store all those digital photos--a floppy disc can only hold 3 or 4 pics at a decent size and resolution, but a CD can fit hundreds and hundreds of photos on one disc--I don't really know exactly how many, because I have never actually filled up a CD!!
Besides all the peripherals that allow me to create great webpages and cards and calendars and such, I am also heavily involved in the internet. I am a somewhat gifted internet surfer, and can find information on most any topic imaginable. I'm also heavily into chatting, and am room manager of a chat room called OurDisAbilityHaven. Of all my computer and internet activities, this is the one that helps the most in dealing with my disability. Here is one of the best examples of how much it helps me: One night a new guest came in, and, as usual, I greeted him and asked how he was feeling that night. He replied that he was ok, but that his legs were hurting a bit. I commiserated, explaining that both of mine had been replaced, but still gave me a lot of trouble, then asked why his were hurting. Imagine my chagrine when he told me of a forklift accident several years previously, after which he had both legs amputated! You could have knocked me over with a feather--here I was pretending I knew how this fellow felt, when I truly didn't have a clue. Yes, my legs hurt, often unbearably, but they are still there. Imagine how much worse it must be to be plagued by phantom pains in limbs you no longer even possess. I've always been aware of the fact that, no matter how bad your situation seems, you can always look around you and see someone worse. I don't think I have ever had such a profound event, however, that slapped me in the face with such a crystal clear example. That one event affected me more than any other, though the attitudes of the people in the chat room constantly amaze me. So many desperately ill folks; but, almost without exception, they have such a great attitude and a truly marvelous sense of humor.
Consider another regular guest: His dog was in his truck one day, and somehow managed to slip it out of gear, causing the truck to begin rolling. My friend, of course, tried to stop the truck, but, predictably, wasn't strong enough to accomplish it. Sadly, the truck ran him over, and he is now paralyzed. He has a webtv, though, and an amazing sense of humor. We have had many a hilarious night discussing ways to get even with the pooch that ran him down, and have laughingly speculated that since the dog actually belonged to his wife, perhaps the accident was actually a plot between wife and dog to wipe out my poor friend for the insurance!
That's only two examples of the amazing people I meet in a disabled chat room, but I could go on and on about folks with such spirit and good will that truly boggle the mind considering the hardships they face. Lot's of the humor is sometimes irreverent, as nothing is safe from friendly mockery. What "normal" person could appreciate the hilarity of a story told by another paralyzed guest of the bed fire that happened when she dropped a cigarette while alone one day--who wisely grabbed the only liquid available to her at the time--her catheter tube? Luckily, she said, the bag was almost full, and put out the small fire quite easily. We all died out laughing, but I think we were secretly in awe of the courage of this young woman surviving seemingly insurmountable events.
This is how I keep going--I laugh through the pain, or I have friends that let me cry when I can't laugh, or entertain me in ways that only another handicapped person could ever appreciate. You get over it, you survive, and you wait for the good days--few and far between they may be, but they will be there. And when you get a good day, you store up all the good memories of the things you can accomplish--like a walk through the botanical gardens or a trip to see a play, or just a visit to a local park to sit and enjoy the scenery and wildlife; these memories you stick aside in your mind to save up for the days when you can't get out of bed; these memories you count on to sustain you until the next good day when you can make some more good memories. And with the help of some truly spectacular online friends, YOU ENDURE!!
© Friskyangel (SAB)