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View Full Version : This is long...sorry needed support for years :)



poetgal
03-28-2008, 08:27 AM
Hi Everyone! My name is Christine. I believe I have been here before, at the start of my journey, about 5 years ago. I am 41 years old and am officially diagnosed with Unspecified Connective Tissue Disease. I have come to the point where I firmly believe the reason for this may be the timing of my blood work, and possibly that my rheummy does not specialize in Lupus. However, she is a kind, caring woman and she treats my symptoms and my illness well. I have lately become more frustrated with the strain on my life this illness is having and the fact I have no one to relate to. I have begun to read again about lupus and feel this is the one place I can find people who "get" what I experience. So, although I don't have the official diagnosis yet..I am hoping I am still welcome here :cry: :cry:

I know many of you have experienced the frustrating and sometimes long process to an actual diagnosis. My Rheummy treats me exactly as a lupus patient, and clinically I meet all of the criteria for lupus, except for the crucial blood markers, which I know are important. I have had one instance of an elevated SED rate, one instance of an elevated RF(rheumatoid factor), and more recently my all of my red blood counts were somewhat low. But nothing blood wise was ever too impressive. My muscle enzymes are recently consistently elevated too.

My initial onset began immediately after a hysterectomy in 2003-this was followed by a series of surgeries due to a mistake during the hysterectomy. I was in and out of the hospital about 13 times over 4 months-including a major surgery. After that, all bets were off. I was never the same physically. Of course, at first, it appeared to possibly be menopauses related (despite hormone therapy), or the body reaction to stress. However, quite soon after this ordeal, I developed mouth infections, joint pain, significant neuropathology, persistent feet cramping, eventual pericarditis, asthma, and a host of bizarre symptoms over a year and a half.

My sister has had SLE since age 17 (much more mild than whatever I have going on to date) but my family is aware of how these illness can act. I did seek out help and look into the possibility of something along those lines. I went through so much personal and adjustment and frustrations with the community of doctors. One doctor I saw for my lungs told me he was certain I had SLE but it would take time for the dx to occur. My neurologist at one point thought I may have ALS and sent me to a specialist to rule this out.

Along the way, I began to self medicate with wine. Prior to my illness I had been extremely active. I had exercised 5 times a week, working full time, mother of three. When I became sick...the level of fatigue and pain...well..you all know. It is just something which can't be expressed. The combination of what I thought was "harmless" drinking to ease the pain developed quickly into an addiction! That was a whole other road I have tackled through this journey. Thankfully, I have have not drank in a year! But for a while, that complicated things further.

At this point I am living as healthy as I can. I go to graduate school, I am employed, but currently on short term disability b/c of a recent flare. I have just had my fourth episode of pericardits. I have hair loss, skin rashes, constant joint pain, mouth sores and dryness, memory problems, partial complex seizures for which I am medicated, neuropathy in my legs and feet, severe cramping on a regular basis, memory difficulties (maybe from all those medications!!).

My world has changed drastically, but I find I am mostly adjusted. I would really like to talk to people who understand. Mostly I DO feel out of place a bit not having the lupus diagnosis. I understand UCTD is a diagnosis. But it is not as if there is support for it around! And I truly believe I have lupus...and it is a matter of time.

More recently, I have had some sadness around how people don't get the whole illness. That has really hit home for me. My Rheummy wrote a letter limiting me at work to only 9 hours per day and not to work past 7 pm..and they have a real hard time with that. I am in good standing and I have been there 7 years! I believe the nature of the illness...looking okay sometimes...being able to have bursts of energy, times of brief remissions...all that..people do not realize how you feel. Also, I have a hard time keeping commitments to my children and friends. And I find myself worrying if they think I am lazy, or I push myself too hard and pay for it later.

I am sorry this was so very long. But I needed to get all that out. Thank you so very much!!! I am asking for suggestions and thoughts I suppose. But more than that..I just want some people who "get what I am going through!

rob
03-28-2008, 10:15 AM
Hello Christine,

I'm Rob, I'm a 40 year old guy from Maine who was diagnosed with SLE in 2004. I'll start by saying you don't need to feel out of place, or think you don't fit in here. You most certainly are welcome here, and with your symptoms, and family history, I can't imagine it not being Lupus. You'll find you are not alone, there are many members here who haven't yet recieved a 100% clear diagnosis. I suppose I'm lucky, once I put the pieces of the puzzle together, my diagnosis came quickly, and it was pretty clear cut. I'm on full disability. I was a small business owner, and had to give it all up. I also had a long term relationship with my girlfriend/wife to be end after the diagnosis. It was a good thing in the long run, but it hurt like hell for a long time. I've been down the self-medicating route myself. My demon was prescription drugs. Addiction can add huge problems to an already bad situation, as you are well aware. I hit rock bottom, decided to end it all, and was lucky to survive. Some days, life with lupus is terrible. But it still beats the alternative. Many of us here are learning to treasure our good days, and push through our bad ones. One universal thing I believe, is that talking to others who "get it", can make a huge difference in coping. I have had many of your experiences. Looking healthy, and being judged for it. Wishing people could understand that beneath that placid surface, is a war going on inside my body. On my good days, I'm very enthusiastic, and I've managed to stay in decent shape despite some of the side effects of the drugs I'm prescribed. So I look like an in shape, happy guy. I don't go anywhere on my bad days, so nobody sees the other side. They don't see the opressive fatigue, and they cannot comprehend the total blank my mind can become. I've gotten lost on my way home, forgotten how to drive a vehicle I've driven for years, and forgotten how to spell simple words I learned in the first grade. I don't let any of that show. So much of what you say, has been experienced by people here. Many of us are in active flares at any given time here. I hope you realize you have come to the right place. There are some wonderful, and knowledgable people here. And there's even a bit of humor too. Welcome!

sits_inthe_corner
03-28-2008, 01:29 PM
Hi Christine,

Welcom and you fit right in here :) I'm a 48 yrs old, live in eastern canada. Lupus runs strong in my family. I'm not currently diagnosed but I'm being "investaged" and I go to do battle with my family doctor on tuesday.

I want her to switch me to another rhuemy as this one is not running tests and doesn't believe in lupus. (Just picture the look on my face)

So far my family doctor has biopsied a rash and it came back as a lupus rash. She said my blood work shows me as being boarderline. So I'm in the same boat as you are...undiagnosed...and they haven't kicked me off this board yet :D

I have arthritis spreading though my body like wild fire.

So far my work has been patient. Fortunatley my job is not physically demanding. Guess I switch careers at just the right time lol.

I took pamplets in to my supervisor and informed her what I was being tested for. I explained that my mother had lupus and my sister has it.

She has worked with me to eliminate things from my job that could be done another way, and has given me other duties that do not stress my body.

I think the more we edcuate the people around us the better.

My mother was in alot of pain. No one ever dared to think for two seconds that she was lazy....she was a mountain of strength to me...fiesty and full of spit. I loved her deeply and respected her. When she said she was tired we all hopped to it and took over what needed doing.

My sister is very much the same way and I admire her stuborness when dealing with her illness.

Some people will never understand....unless they have first hand experience. To those people I just give a fake smile and think "what ever". We do what we have to do to get by. And hopefully we have people in our lives who love and respect us for who we are.

I've adjusted to how I am now, as compaired to how I was two years ago. I've spent the past 1 1/2 hunting down things that make my life bareable.

If you saw me "walking" down the street two years ago, you would have called an ambulance. Now I walk fairly smoothly...pain well hidden.

Speaking of lengthy...think I'll stop there :)

Nice meeting you and I look foreward to chatting with you again.

Which of your joints are affected? I have quite a few.

Shyce
03-29-2008, 02:01 PM
i keep overdosing and i know its wrong. i do it with the prednisone and whatever else is prescribed from time to time. i overdose on painkillers. sometimes 6 or more at a time. i overdose vitamin supplements.

if i need to leave the house i take everything, painkillers etc... so i can "feel functional" for the time. then i just come home and sleep.

i know its wrong, but then on the other extreme i sometimes just suck it up and take nothing @ all, for days, weeks even. cause im trying not to overdose and disguise the pain. it doesnt even work all the time.

how do i get it right? how do i stop this crazy course im on? i really dont know. no1 should experience such horrid pains

Saysusie
03-30-2008, 01:39 PM
Rachie;
You are right, it is quite dangerous to continue on the course you are on. The best suggestion that I can make is that you go back to taking your medications only as prescribed. If your meds are not controlling your pain, perhaps you can ask your doctor for a different prescription, but you must go back to taking your meds ONLY as prescribed.
Once you do that, you will give the meds an opportunity to build up in your system so that they can do what they are supposed to do. But taking too many at one point and then taking none at another point is doing the exact opposite of what you are trying to accomplish. You want to relieve your pain, then you have to take the medication every day, for the prescribed amount each day!
Also, ask your doctor about a referral to a pain management clinic. They may have some very good suggestions about how you can do better managing your pain!

I wish you the very best
Peace and Blessings
Saysusie

sick n tired
03-30-2008, 04:08 PM
Hey Christine,

You do fit right in. There are a few who do not have diagnosis. I was diagnosed this last fall. I do understand the frustration, though. It seemed that the docs thought that it was "all in my head" for quite some time.

so, Welcome to this forum...

poetgal
03-31-2008, 08:59 AM
I want to thank you all for welcoming me here to this forum and for sharing some of your own experiences with me. The validation that I belong really helps. The more I read from the professional...and especially the updated criteria for diagnosis makes me think I may need a second opinion at a lupus specialist. But I do want to thank you all for the welcome.

I want to mention something else here too. I said in my first post how lupus and the pain brought me to addiction. I did not mention specifically how I am now in recovery. I feel I am really lucky to have gotten into recovery because, for ME, I have a family hx of addiction and I fell quickly into my active alcoholism as soon as I realized it seemed to stop the pain. The one sort of good thing there is I never really was prescribed pain killers during that time (because I was "self medicating"). Now that I am in recovery, I don't believe in suffering. I am treated with anti-inflammatory 2 times a day..finally I found one that eventually my stomach got used to and worked (some of them don't work at all). Plaquinil helps a little (I guess), and topomax helps with nerve pain. I do however have ultram which has some narcotic properties, and I DO take it if the pain is bad. And if I had terrible pain I wouldn't be a hero and not take something with narcotic properties, the key would be taking it as prescribed and not taking it to "get out of my head" in any way. I wonder if anyone on this site has dealt with addiction..specifically if they have gotten into recovery....maybe I should ask that in another forum... :lol:

thanks again for the welcome..yay!!!

sick n tired
03-31-2008, 09:12 AM
Hey Poetgal,

I have never dealt with addiction of a substance, but it is in my famiily. My parents were always getting on me for being a "hero" after surgery because I get off pain meds as fast as I can. I know that I have a very addictive personality so I try to keep that in mind.
I am having a hard time with the pain I have been having to stay away from them, however. Surgery pain goes away after a while, but this just gets worse if not dealt with.
I think it is a testament to your strength and courage for you to admit that there was a problem and to go about seeking a remedy for that. Good job!!! :)

K

Saysusie
03-31-2008, 03:58 PM
Hi Poetgal:
I, also, have never personally dealt with addiction. But my extended family is replete with addicted members (from alcohol to cocaine to heroin). I know that, with an addicted personality, one tends to swap one addiction for another. This is ok, if the other addiction is something productive. But, many times, addicts will swap a heroin addiction for an alcohol addiction and so forth.
You seem to be very self-aware at this time and it sounds as if recovery is working for you. Are your doctors aware of your prior addiction when prescribing medications with narcotics? If you are concerned about this, perhaps you should make them aware so that they can see if other treatments will work as well or if there are other therapies that you can try.
You are right in not wanting to suffer with pain, no one should have to suffer with any unbearable pain. I would think that, with the support you are getting in recovery and if your doctors are aware, you would not have a problem becoming addicted to prescription drugs.
I hope that you find answers and/or help that works for you. I wish you the very best!

Peace and Blessings
Saysusie

Pearl
03-31-2008, 05:29 PM
Hello Christine -

I just got back to the boards today (recovering from a fun little flare) and saw your post. Please know that you are welcome, whatever name the docs place on your version of this malady. Most of us have been through similar circumstances, grasping for whatever life jacket we believe will keep us from sinking. Do not despair. This is a wonderful place to tread water. I hope you find peace and comfort here.

Jana

poetgal
03-31-2008, 07:00 PM
Thanks again for the feedback. Yes, my doctors are aware with the history of alcoholism and that I am in recovery- I never have really been prescribed narcotics. Ultram has a very mild narcotic property..but my doctor has explained it to me in a manner I can't remember exactly but it is something like it is not exactly the same as a narcotic despite the mild property. Technically it is addictive, as in, if I were to use it daily I would need more to relieve the pain. However, it does not alter mood. Still there is always caution to be had with a history of addiction, and knowledge of trading one addiction for another is very accurate (because the "self medicating was the issue not the actual substance). But being in a program of recovery is key for me! I actually feel lucky at this point because not only has that helped me to now be sober, but I have gained a new ability to deal with not knowing from day to day how to deal with what may or may not happen in this illness.

Enough of that :wink: I go back for my blood work on Wednesday. This is the first time ever I went to her and got blood when I was in the middle of such a flare (like everything was going on at once..a lot still is). I am really hoping this time something..(besides the non-impressive elevated muscle enzyme and the slightly low red blood count) turns up.

Saysusie
04-01-2008, 08:13 AM
Please let us know how your appointment goes and what your test results are. I'm glad that your doctors are aware of your prior addiction and your current rehabilitation efforts. Let me congratulate you on your sobriety, that is a milestone that should not go unnoticed!!!! Congratualtions!

Peace and Blessings
Saysusie