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Hello everyone!

Please grab yourself a nice cup of tea or a nice glass of ice water and take an intermission as this is a long 'introduction'.... Apologies well in advance... :sorry:

I'm Heidi Leora & reside in Atlanta, GA. (USA).... Some of you teased me in chat late Tuesday evening into very early hours of Wednesday morning because I thought our weather was cold.... but then you all mentioned residing in IL with wind chill factors of -30! I think the 60's is too cold for me! :wink2: Like I said, I would LOVE to live where it's warm in the high 80's and above year-round... I don't quite think that'll be happening any time soon or at least in this life time! Oh well...

OK.... I was "officially" dx with Lupus September of 2000. I had pancreatitis and it was then I had several skin biopsies (which I will NEVER go through again)... every one of the biopsies tested positive. I have been asked numerous times if I drink alcohol at all... Sure I'll have a glass of wine once a year or so .... and absolutely will have my pina colada or margarita on special occasions which is oh I would say 3 times a year. So it is quite apparent I don't drink daily or even weekly. So I'm not an alcoholic. I was drunk ONCE way back in college and NEVER AGAIN. Trust me, I kept that promise! :wink2:

It is believed I may have had lupus for years and years because I had peritonitis which very nearly ended my life in 1976.... My husband & I had our first child in 1985 and exactly 3 days after the birth of our daughter, I developed life threatening peritonitis again.... this time we were told there were still 'remnants' of placenta that was not entirely cleared out which in effect caused problems for me. I went through surgery for that and came home a little over a month later.... it was a very, very difficult time for me but it was important for me to live for my new family. We then found out we were expecting again Halloween of '86.... That was an absolute surprise for us... the pregnancy was just beautiful! Labor/Delivery was only 12 hours and I refused all medications. I opted for natural childbirth. We had midwives deliver our daughters.
I ended up with cervical cancer in 1989 which blew me away. I of course had to have a complete total hysterectomy. I was extremely fortunate to have had the hysterectomy when I had it. My cervix was twice the size of a football. (American football)...
After all of that, I resumed living life to its fullest by skiing and of course being a ski instructor.... I then started to experience incredible pain in my fingers, jaws, feet to the point they would turn a very ugly dark purple/dark gray.... doctors couldn't figure out what it was that was causing that. I kept telling the doctor I saw at the time it only happens when I'm cold or nervous.... It hurt so bad if anyone dared try to touch me... I eventually found out it was Raynauds Phenomenon. I dealt with it just fine... but whenever it became low 60's, I had to make sure my body 'knew' it was not cold but in a warm/hot environment... wearing mittens/gloves does diddly squat! I can sit on my hands/fingers and still it will turn blue.... I don't think this will ever change. Well... we then moved south due to job relocation. I was very, very active and always the octopus I used to be. I had 20 things going on at once... (I hope you know this is an exaggeration!) but I always kept myself busy. Our children were un-schooled and then in September of 2000, I collapsed.... found out I had pancreatitis and no! I am not an alcoholic at all... I'm a WATER-AHOLIC! I don't even drink soda and haven't for oh gosh.... maybe since the late 70's or early 80's? I don't drink juice, I don't drink tea usually. I certainly don't drink coffee. I'm all about water! Ice w/water and sometimes I'll throw lemon in it with mint....
It was from September of 2000 to this day life turned upside down not only for me but my family. I suddenly couldn't do what I always used to do. It was very frustrating and it still is to this day. My daughters who are now 22 and 20 tell me I'm very lazy.
My ANA count (Anti Nuclear Antibodies) count just kept creeping up more and more... I refused medication because of my experience oh I think hmmm... maybe 7 years ago (?)... My Rheumy put me on a medication called, Plaquenil... before I could go on that, I had to have my eyes examined... I remember that as if it were yesterday... I thought I was not going to live. That's how BAD Plaquenil was for me. I was sicker than a dog... I'll never forget that.
I eventually found out about a doctor 'south' of GA who specializes in FMS (Fibromyalgia)... this doctor claims every single patient he sees has FMS.... Oh... I forgot to mention... I was seeing a pain specialist because I suffer to this day and age from extremely SEVERE left flank pain. It's so bad that I am so often tempted (by thought only) to get my long knife sharpener and just drill the blasted thing in my left flank and take one of my chef's knives and cut it out... the pain is what is the most difficult to deal with. It NEVER moves... it's the exact same spot day in and day out since 2000. I used to be on ahh... (thinking)... Duragesic patches... I was on 275mg but the patches literally ate through my skin too much. I was in even more pain and decided it was high time to seriously look for a physician who is familiar with lupus... so I went to the doctor in the south which is about a 2-hour ride one way.... he put me on Oxycontin, I think lortab, xanax, ambien, I cannot remember the others... I was finally able to function but no where near where I wanted to be... I was able to get out of bed, bring the girls to/from school since they were no longer being unschooled. I had no choice but to put them into commercial schooling. (Public schooling) very much against everything I wanted to do.... but they did quite well and we are very proud of our daughters. :)
The doctor I was seeing in the south did some inappropriate things which I will not discuss publicly on the list. I kept seeing him because I couldn't find any other physician's who knew about lupus. The rheumy I used to see rejected me because of personality conflict. He felt I should have handled Plaquenil but let me tell you, I was very, very sick.... I will never, ever go near that stuff again. I ended up contacting "The Lupus Foundation of America" They put me in touch with a couple of physicians who in turn contacted my Primary Care Physician locally... We started from scratch in the hospital because I was hit with pancreatitis again... It blew me away because I don't drink!!!! I have told all of the physicians that I DO have chardonnay, or two other drinks I like but only on special occasions like at Mitzvahs, weddings but otherwise, nah, no need to at all because I like water and only water! My ANA count was over 4000 which isn't too bad... but rather than calming down, it kept spiking higher and higher till it hit 7634.... The doctors in DC & my PCP converse very frequently and decided after all was said and done to put me on chemotherapy on high dosages... I started chemo in ahh... September and was on methoextratate but my count never did change and the protein in my urine was a worry among other things that I cannot remember right now... Then I *think* in October it was, I started Cytoxan... FINALLY, FINALLY!!!!! :)wink2: ) my ANA count was going down quite rapidly... right now my ANA count is in the 4000 range which is a lot better... it has to go down a lot more though.... I do struggle with a very low WBC (White Blood Cell Count)... I just rec'd my results and it's 1.3 right now... too low. My RBC (Red Blood Cell) is also on alert at 2.0. Both counts are on 'alert' status. My RDW Platelet (I have no earthly clue what that is) is very high at 19.5 and Lymphs (all of them) are very low.
I struggle with energy. I'm ALWAYS tired and I mean to the extreme. I just want to curl up and sleep non-stop... but I constantly feel guilty because I'm told I'm lazy and that does hurt me a great deal. I truly, sincerely WISH I were lazy... I truly believe it's the illness and medications I'm on. I have extremely severe pain every single day. The pain 'quiets' down when I'm lying down in bed. I put my side of the bed at a low number so it isn't uncomfortable for me. When I sit up, especially stand up, walk, the pain is blinding beyond imagination. I don't ever show my pain.... I just silently think of ways to calm the pain down... sometimes it works, sometimes it doesn't.
I have lost all of my hair and am still on Cytoxan. I'm on (I think) 250mg. I was on a higher dosage but because my WBC & RBC was low, the doctors cut down the dosage by half. I may be on Cytoxan most of this year or at least until the end of the summer.

I will write another post as far as how relatives/friends, etc treat me when they learn that I have lupus and especially now that I'm on chemotherapy to treat this wicked disease that should never have reared it's ugly self.... I absolutely detest lupus with a passion. I would have LOVED to participate in the lupus walk-athon but there is no earthly way I can walk to our mailbox that's at the end of our driveway w/o experiencing blinding pain.

This is the LONGEST post I think I've ever done.... I certainly hope you had a couple cups of tea or had a break (intermission) reading my post.... Future posts will NOT be long like this at all.

I truly look forward to getting to know you all. I am often not on the computer lately because I'm constantly not feeling well.... so I will try my utmost best to log on as much as I can!

~ Heidi Leora

"There are many paths to enlightenment.
Be sure to take the one with a heart."
- Lao Tzu
 

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Hello Heidi Leora and :welcome:

I will not even attempt to compete with you on length of post :lol:

I'm glad you have decided to join us here but so sorry to hear that lupus really has given you a very raw deal altogether. I'm am lucky to have much milder involvement and now, after 10 months of treatment (including your dreaded plaquenil!), I am feeling much much better and able to function even if at a slower pace than before.

I think a lot of us were extremely active before and it is terribly frustrating not to be able to do all those things we used to do. People have a job understanding that when you "look fine" :hehe:
I have even, at times, thought that I was becoming lazy. I convinced myself that it was that. Luckily, I then started getting the odd good day and on those good days I felt I could run a mile (fortunately I was sensible enough not to try :lol:). The good days have become more frequent for me and I am hoping to go back to work, very much part time, in a couple of weeks. I'm self employed, so I can regulate my work to a certain extent. The main catch to that is the high social security payments we have here and the fine balance between working enough to pay them and overdoing it.

I really hope the cytoxan continues to work for you and that you will now move towards some better times. Hopefully then, you'll have the time to readjust to a different way of living and remember that you are defnitely not lazy.

hope to speak again soon,
Katharine
 

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Dear Heidi,
I am sorry you feel so bad. I am fortunate because my Children, a little younger than yours, are sympathetic.In fact my Daughter has Lupus too, and I have no relatives to upset me.
X Lola
 

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Wecome Leora

HI Leora


it is good :rolleyes: that you are familiar with the site and you are posting. I have truly been overwhelmed with the information available here, because when so many things are happening to our bodies, over amost all our lives we need support from somewhere as our dream and aspirations must be redrawn so that we are happy, even though perhaps families, friends and many doctors are not aware of the suffering that lupus and its symptoms inflict upon us. :eek:

But like you I will not be beaten, when the mindnumbing events, such as
strokes, seizures, not being able to talk and having to teach self to talk again to resume our life work, to overcome the negative thoughts that doctors have, and even the wrong things that some doctors do as I have also experienced, I am fighting towardsd/x :wink2: as no doctor where I live has helped in any way, but I've gone much further distancewise to sek d/x.
like you I have children, 2 daughters like you. Mine are grown up , but they just want a doctor to say -you've got what. But I've found that it is only up to ourselves to work out with a doctor, and we might have to go through many to find the one/two we need, as you say- personalities clash and I've put them behind me.
All the best for the future, hope to see more of your posts.
mary
 

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Hi Leora,

Nice to meet you! You have certainly had your plate full. I am sorry to hear your in so much pain, and so exhausted.

I hope that you begin to feel much better very soon.

Hopefully, in time, other's will realise just how sick you really are..and, you will stop being told your lazy. That sounded very familiar. :(

Take very good care of yourself.

Looking forward to reading more of your posts...

Friend,
Sandy
 

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Welcome to the site. So sorry for everything you've had to go through with symptoms and your family. Certainly, lupus can cause pancreatitis although it is on the rare side. It's good you are back on some lupus medications - sounds like you may have gotten them just in time.

My daughter has grown up only knowing a mom with lupus - and thankfully so far she manages quite well and is very kind to me. Then again she's 3 so she believes that when she gives me a kiss all is better quite magically! I do my best to act normal but then there's days like today where I have to spend most of my time in bed and she will take turns snuggling with me and playing with her toys.

Take care and welcome again!
 

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Hello Heidi Leora,
I'm so glad I read your post. I'm sorry to hear how hard its been and the pain you have to go through. I like how you know about your blood and the tests. I need to do this and try to understand. My family doctor has been the one trying to help me and he is worried about my blood and keeps changing my meds, to get a lower count. I have been thinking for a while that I would like to have copys and learn how to read them.
I know just what your saying about the gloves and mittens don't do crap and how painful your hands can be. Mine turn dark purple and I get little cuts on the tips that hurt. I have got to stop smoking the doctor says, and I have been trying but its so hard right now. I know it sounds like I don't care if I am still smoking but I Do. I want to be around for my kids and grandkids and I don't want to lose my hands or feet.
I just wanted to say thank-you for your post and I am thinking about you it helped me to read it.
Love Susie
 

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Hello Heidi,

Welcome to the Lupus Site. Lupus is a crazy disease and can be extreme as you have learned. It sounds like you are on oral cytoxan so the fact that you like water is a very good thing as its important to keep your bladder flushed out when taking cytoxan. I hope you are now under the care of a lupus specialist, I know there are at least a few in the Atlanta area.

I understand about the pain. It is only in the last few months that I can actually drive more than 3 miles from home and go shopping without a wheelchair. I am fortunate the that fentanyl (Duragesic) patches work in combo with another pain reliever for my pain that is Lupus/Scleroderma related. I do have Fibro with the Lupus and take different medications for that pain to be "controlled".

You will find that you are not so "unique" here on the forums. It is great to have a place where others understand the frustrations and problems we have living with a chronic illness.

Take care,
Karen
 
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