View Full Version : Having trouble coping...

08-19-2006, 07:53 PM
Hello, My name is Amber and I am having trouble coping with my lupus. For five years I have suffered from auto immune disorders.

When I first got sick it took 6 months before I got a doctor who didn't dismiss me as a lazy moody teenager. I was 16 when this onset. The doctors told me relax more, excercise, eat healthier, etc generic bs that means they don't know what they are talking about. I finally got a doctor who listened to me as my condition excellerated and had me tested.

She suspected Lupus or rheumotoid arthritis. Perhaps fibromyalgia. She sent me to a rheumotologist who immediately diagnosed me with Mixed Connective Tissue Disease. Later I was diagnosed with fibromyalgia. My specialist who I am incredibly lucky to have is a genius. When I describe a problem he immediately knows whats wrong and how to fix it. Not only that he really cares. He treats me like a human and not an object like those first two male doctors who dismissed me. MCTD is not actually its own disease but a disorder with the symptoms of many other auto-immune diseases including rheumotoid arthritis, lupus, and a few others I can't remember. The medication lowers my production of white blood cells which are overactive and like to attack my organs if left unchecked because they think my organs are foreign invaders. FYI because of this I rarely get normal sickneses.

With medication (prednisone and plaquinil and diclofenac) I was able to control my disease and started to get better. I was down to a weight of 149 the smallest I'd been in years especially considering I'm only 5'2 barely. My life was starting to get back on track. I'd finally learned to cope with my illness and had restored some semblance of order to my life.

A year and a half ago or so I got sick again. My specialist whom I see every three months to moniter my disease saw some irregularities in my blood and kidney function. My protein levels were dangerously low. He suggested I might have to have a renal (kidney) biopsy. He suspected Lupus. I was devastated. But first he sent me to a nephrologist to verify his suspicion. He didn't want to have unwarranted tests if they were unnecessary.

I saw the specialist and she ordered a renal biopsy. It was a terrible experience because my test was delayed and I had to stay overnight in the hospital. A week later the test confirmed what both specialists suspected. I had Lupus Nephritus.

My nephrologist immediately gave me the choice of cellcept or a monthly injection of a mild chemo therapy. I chose the pill because I someday hope to have children. She bumped my prednisone up to 60 from what my rheumotologist had tapered down to five.

Five months later I was in the hospital with pneumonia. My legs had ballooned up recently and I looked as my friends said the michelan man (or state puff marshmellow as me and my boyfriend joked). My doctor said it was normal because protein controls water retention and my kidneys were bleeding protein through my urine. Also the high dose of prednisone didn't help. I gained 60 lbs of water weight in like three weeks. I'd never had much an issue with weight having come to terms with it years before. But 60 lbs is too much for any sane person to bear.

During that hospital stay I was put on water pills which later I was taken off because they were too hard on my kidneys. Luckily the weight gain leveled out the water pill became less necessary. I am now at a steady (hehe fluctauting) weight of 170-190. Usually about 185. I was also on lisonopril (a blood pressure medicine) because it helps retain protein but they also took me off that because I started having dizzy spells because I had low blood pressure to begin with. Oh and I'm taking lipitor because the overactive kidney active makes the liver produce too much cholesterol. At one point I was taking 24 pills a day and for me that was horrible.

I was starting to feel better but when my rheumotologist said my MCTD was under control my lupus would flare up and vice versa.

Four months ago I started to get weird back pain. I've suffered pain for years but like a florist who stops smelling flowers I'd stopped being able to sense pain unless I actively concentrated or if it was intense. It was an excruciating pain in my lowest ribs on each side both bone and muscular. Sometimes the pain would wrap around to the front side of my rib cage. It was a pain so intense I sometimes couldn't breathe. I have asthma too but the inhaler barely put a dent on this. It's hard to describe.

I'd been seeing an osteopath which is a glorified doctorate chiropractor but the pain just seemed to be getting worse.

A month ago my mom who takes care of me (I'm 22 and unable to work, on welfare as I wait for my SSI case to go through court) rushed me to the ER because I couldn't breathe and the pain was agonizing. My breaths were so shallow and taking a deep breath sent a shooting pain through my lungs. I could barely walk 2 steps before I burst into tears. The stuck me twice with morphine and exrayed my chest. I couldn't take a deep breath so it made exraying me difficult. After the exrays they sent me in for a cat scan. They told me my lungs were 50 and 75% collapsed. They sent me home with percocet.

Next week I went to my rheumotologist who ordered another catscan and a bonescan and sent me to a pulmonary (lung) specialist. The results of the bonescan were activity in my neck, jaw and shoulder (the shoulder I forgot to mention had been also experiencing deep aching sharp shooting pain the same as my ribs and lungs). My rheumotologist suspected my lungs had pleurosy (inflamation of the lung lining related to lupus). The lung doctor thought the same until examining me he poked and said I had some condition I forget the name (which means muscle, joint, tendon and bone pain in my rib region). He said he wanted to give me a breath test and a lung biopsy but based upon his examination I may not need it. In two months he will see me again and exray me. Between the ER Catscan and the second catscan my lungs had improved. He didn't want to put me through expensive, painful tests if unnecessary. If I do have pleurosy that means the lupus has moved into my lungs and thats a very bad thing.

However, I saw my nephrologist last week and as far as the lupus is concerned I'm doing phenomenally well. She said if the lupus had moved into my lungs usually it shows in the other lupus affected areas. My kidneys were doing really well. Only issue she had was with my anemia (I'm iron and vitamin b-12 deficient) not improving. I'm on iron pills and been getting b-12 shots for two months.

I have my doubts despite what she assured me.

I've been very lucky to obtain kind caring specialists throughout my illness. I think I'd have never made it through these past nearly 6 years without them and the love of my mom and gramma.

For the last four weeks I've been stuck I think five or six times with needles, been to five specialist appointments.

The pain isn't getting much better. I try to take Ibuprophen instead of the percocet when I can help it but any exertion over twenty feet sends me into a fit of pain and gasping. It hurts so much and I feel so utterly useless.

Last week my rheumotologists nurse called me about the bonescan. It was the pulmonary doctor who had told me the results since my next rheumotology wasn't til next week. The activity in my neck concerned him. Apparently I have some calcification on my thyroid gland. He had me go get yet another blood test and an ultrasound on my neck. I won't know the results until next week.

Hypo-thryroid something or other could account for my lethargy and weight gain.

Yet I wait fretting for the test results. And as I said I'm not feeling better. At the end of the day I feel like sh*t. The muscles in my back agonize and it takes twenty or so minutes for me to relax and settle comfortably Once I sit. For the muscle pain to diminish and the gasping to return to my normal very shallow breathing.

I don't want to die but this pain makes me wish intensely that it would end and the only thought that crosses my mind at those moments is death would be an end. I'm not the least bit suicidal. However, god this hurts so much and I hate it. I'm so depressed and normally a shiny happy chipper person. This isn't me this depressed enraged hopeless person. Rage has been an issue throughout my illness but I'm usually able to control it.

I feel like crying everyday but my lack of breath keeps me from weeping. For some reason the tears won't slip past my eyes. :oops: I need to cry.

Now I face what seems like a hopeless future. My friends, boyfriend and family are great and supportive but they cannot overcome the intense pain, loneliness and isolation I feel. The doctors assurances do not comfort me. I feel like I'm dying though my brain says be reasonable you are not. Medication can help. Everyone is trying so hard to make me better.

I've come to the conclusion I will never have children. I don't think with my illnesses I could carry a healthy child to term nor would I want to inflict my children with this horrible condition.

I look at people with babies with a growing resentment. I'm starting to hate my friends for being healthy. I'm crying right now. Two days ago I finally was able to cry. Usually that makes me feel better. Now it just makes me feel hollow. I feel empty and useless and hopeless. I feel like a bag of bricks holding everyone back and dragging them down. They love me and try to reassure me but the feeling remains.

I'm crying and now I can barely breathe and my shoulder is aching and my ribs are starting to hurt. I feel a little better for sharing but I came to this site because my mom told me I should find a support group and there are none in my area. For a long time pride kept me from reaching out for help. I try not to burden anyone so I rarely ask for help. My mom and gramma have fibromyalgia and grams has b-12 deficiency but it's not enough. I need to speak with people who truly understand how I hurt inside.

I've never been a fearful person but now I'm scared all the time. I don't want to die. I don't want to die.

I do believe in God but my faith isn't strong enough to comfort me. I don't blame God but sometimes I find myself asking what I did to deserve this. My mom says I'm a kind gentle person. Everyone says I'm a fun spunky lively kind gentle person. But this kinda feels like punishment. I must have really screwed up in a past life.

Why does it keep getting worse? Why can't I cope? Normally I'm a very accepting person. I often console and comfort and advise my friends because I'm a natural empath and I understand people and their problems. So why can't I do this for myself? Why can't the healer heal her own aching heart? Why can't I use my wisdom and intelligence to quell my fears?

Please someone help me...

08-19-2006, 09:32 PM
Dear, Dear Amber.... what terrible experiences you have had for being so young! Your story touches my heart and I wish you could understand how deeply I feel for you. Your strength thus far amazes me and I can tell it's that same strength that will see you through this most difficult time. Let your loved ones help - don't disconnect yourself from them. They want to help, trust me. Talk to your doctors about your feelings. It's important that they know and they too can help. Many auto immune patients take anti-depressants regularly and it's NOTHING to be ashamed of. These diseases are frustrating. The treatments are frustrating. Patients need any and all help they can get. This site can be a great comfort also. I've found it to be very helpful. I don't even have an official diagnosis yet! But I'm sticking around because everyone here is very knowledgable, friendly, and most importantly empathetic.

Take care Amber and remember you're not alone. My prayers are with you.


08-20-2006, 07:03 AM

First of all, let me give you a big ((HUG)). You deserve it! You are a strong person. You've tackled so much for someone so young.

During my bad days, I lay in bed and question myself, what did I do to deserve this? :( I've been diagnosed just a few months ago, so this illness is new to me. I'm still learning about it. I'm still learning how to cope with it. I don't like to complain too much or ask for help. I have my mom who's willing to help me with anything, but, there are times when that isnt enough. :( My boyfriend has been understanding and supportive. There are times when I look at myself in the mirror, and cry. So much has changed so quickly. I look like a different person due to the hair loss and some weight gain. I feel like a totallly different person. I'm 30, but, my body feels like it belongs to a 90 year old. Fortunately, my medications seem to be helping me. I still have those bad days though. But I guess its something that I have to get used to. I've had this stupid headache since friday. All I want to do is stay home with the shades down. There has been times when I don't answer my phone calls. It does get depressing. :cry:

I've learned that sometimes life hands you situations when all you can do is put one foot in front of the other and live moment to moment. :wink:

You've joined the right place. Everyone is very supportive, understanding, friendly, and oh so empathetic. :D Whenever you need a shoulder to cry on or a friend to laugh with, you can talk to me/us... :wink: Welcome to our Family! :wink:

08-20-2006, 09:20 AM
Thankyou guys, that's just what I need. It really helps to be reaffirmed this way. Yesterday I spent three hours combing through the posts before and after I made my post crying the whole time.

I too have suffered the hair loss. I used to have the thickest, beautiful, dark-brown hair. When I was younger I wished for thinner hair because it was so thick and heavy to manage. Guess I should have been more specific with my wish. Lol. Thankfully my hair is starting to come back and I've stopped losing huge chunks whenever I brush it. I don't shed like a polar bear in summer anymore. I think the vitamins and medicine helped that.

I miss being able to swim in the sun. When I go outside I pray for dark days so I don't get sick. I glare at the sun like a hated enemy. My eyes are super light sensative and 15 mins exposure to direct sunlight puts me out a few days.

As a child I was fascinated by vampires and wished to be one because they embodied strength and immortality to me. Another wish I should have been careful about because now I am like one. Anemic and photosensative. Sometimes when my boyfriend throws back the curtains in the morning I hiss. My boyfriend and I have jokingly nick named me vampire.

I have native american blood in me and so I've always had easily tanned olive skin. Now I'm as pale as a ghost.

You know the funniest thing is I was looking the best I have in ten years a year and a half ago. During the remission of my illness I suppose. Sometimes when I look in the mirror after bathing or brushing my hair I cry. When I ballooned up it made large, deep purple marks across my torso and smaller squilly pinky purple stretch marks across my bloated legs. Strangely most of the bloating was in my legs and belly, the rest of my body was unaffected. I felt like a malformed zebra.

I'm on some sort of anti-depressants which helped at first but the overwhelming pain and quick degradation of my condition sank me into a pit of despair.

I do get joy out of life though. My mother has the most beautiful garden in a tiny backyard filled with flowers of all kinds. Marigolds, roses, clamatis, two giant happy sunflowers, pansies, sweat peas, nashtirshta, wisteria, geraniums, and many more I do not know the names of. In the early morning before the sun shines on the garden or late evening as it sets I can sit in our padded rocking bench and smell the flowers and enjoy the vivid colors.

I really enjoy video games too. The ones with good stories. They help distract me from my pain. When I'm feeling well enough to write or draw that helps too. Someday its my dream to be a fantasy, horror and science fiction author. Maybe even a few romances. I like to mix genres. I quite proud of a fantasy horror novel I've been writing during my illness. Its 346 pages long (hand written). I just got a laptop from my step dad a week ago which is why I was able to connect with this forum. Now comes the arduous task of transferring dozens of handwritten stories to data. It's worth it though.

I love my laptop. When my fingers touch the keys the words just flow as they never could when I used a pencil. I think much faster than I can write but type almost as fast as I can think.

Buddhabelly and Triciaf thankyou and hugs. As for your headache Buddhabelly I suggest you drink lots of water. I find that inflamation has the effect of burning up excess water in the body. It makes my brain burn. But when I drink water the burning lessens.

Remember though you look different on the outside you are still the same wonderful people on the inside. Up until recently I've been strong but there's only so far a reed can bend in the wind of a hurrican before it snaps. Now it's the time for me to pick up my broken fragmented pieces and pray for the storm to end. Because even a broken stick can be glued back together.

As I write this today is a good day made even better by the support of my fellows. The crying last night as I've not been able to do in a month really helped too releasing pent up pain and anguish. I cried hard though I could barely breathe, my muscles spasmed and was in agony. It was worth the pain because finally I felt something of closure to the last month of endless tests and fear.

I'm still afraid and living in fear sucks. I'm still having trouble coping but it's a little better because of you guys. I will continue to turn here for support and in turn to support you. Like that one song.

"Lean on me, when you're not strong, I'll be your friend, I'll help you carry on. For it won't be long til I'm gonna need... somebody to lean on."

:lol: Thankyou. :wink:

08-20-2006, 02:19 PM

I enjoyed reading your post. You're a very good writer, I can tell just from reading your posts. It felt like I was reading a story. Good luck with your fantasy horror novel. I can't wait til you get it published so I can read it myself. :wink:

08-20-2006, 08:28 PM
Amber- SO glad you're doing better. I too can tell what an excellent writer you are. Keep at it and you'll be published in no time. I love the whole horror genre too. King and Rice are two favorites. Lestat has got to be one the best characters ever conceived! Anyway, take care and keep smiling.


08-21-2006, 12:07 PM

I went to this site today already in tears, but your post made me cry even more! You were able to express all the fear and frustration I feel like are trapped inside of me every day. What set me off today was not being able to turn the stupid dishwasher on because my hands, wrists and fingers are too swollen and painful to push the darn button. How bizarre life for a Lupie can be, huh?
I'm only 25 and know how you feel. True my illness hasn't gotten as bad as yours (although I'm being tested for Lupus Nephritis and they think it's gone to my brain). I'm so sorry. No one should have to go through what we do on a daily basis. But I guess all this suffering is making me much more empathetic for other ill people out there.
Hang in there. We're all here for you.


08-21-2006, 01:11 PM
Amber I was reading your posts and I am sorry for the ups and downs you have gone through. You may not know it always but you are a strong person. I hope you have great success with your novel. I look forward to reading it one day in the future! Hope you are feeling better today. Welcome to our family :lol:

08-21-2006, 05:51 PM
Thankyou guys again, its so nice to feel so welcome. People around me have a hard time understanding what I go through but here I can be completely open and understood.

I think sharing is such an important process of healing that wound this illness creates in our hearts. The feelings of dejection and isolation, the fear, and the pain all way so heavily on an already overtaxed body, mind and heart.

It's heartening to hear that my story is not unique but a reflection with some variation on what you all go through. Though truth be told I wish it was a fluke because I know how it feels and would not wish it on even my worst enemy.

Coming to you guys has been a real experience. I know it sounds funny but it kinda feels like as I'm stumbling there are invisible hands reaching for me to hold me up. I feel a little stronger.

I do not regret my experiences despite the trama it has caused my psyche. From a young age I've known and had the strong conviction that my purpose in life was to help others. I feel that though I have endured hardships I have come out stronger for them. When life gives you lemons make lemonade. As comedian Ron White says, "When life gives you vodka, throw a party." When I come out of the painful haze I see the benefits that the hardships have bequeathed upon me.

Angie, I hope your hands feel better. Recently I have not had the inflamation in my outer extremities (my pain is localized at the moment in my left shoulder, back and lungs atm). However I did endure three years of that horrible pain. Hugs. I hope your Lupus (if the diagnosis is correct) is not in your brain. Hugs again, that thought makes me cry for you. Although my pain may seem worse you endure just as much.

Sometimes, because I do not look sick people misjudge me (calling me lazy). Clearly I am too young to be so sick. Sometimes I berate myself for falling into self pity. Well damn, I'm not in a hospital bed dying of cancer, I shouldn't be such a woosey. But the truth is all pain is palpable and equal, whether a papercut or a gaping wound. Woops I'm rambling....

What I mean is look to your weaknesses for strengths.

I find a few sayings that help me sometimes.

My gramma says, "Those who God loves the most he tests the most."

Here is another saying that helps me, I cannot recall where I heard, and I added a bit of my own interpretation to it.

"We come into this world, raw and perhaps ugly. But life's trials temper us, pounding out the imperfections and creating a creature of beauty and strength. In time we are harder than steel, sharper than a diamond, a more beautiful than springs first blooms. Though at times we seem lumpy and unwanted we are the coal that forms into a diamond when given the chance. And though some of us are like flowers wilting before our times, we shine with beauty and grace while we remain."

I will definitely dedicate my first book to this site and the people in it, besides my family.

:D Wishing you all a good day. :wink:


08-21-2006, 06:13 PM

I always look forward to reading your posts. :) You sound like you're doing better. :wink: Keep posting and keep smiling... Have a good nite! :D