X-Post -- Letter to a friend (long)

I answered an e-mail today from a college friend who has lupus, who now teaches at a university overseas.  It sums up so much of what I'm dealing with, being dually diagnosed with lupus and fibromyalgia, and on Social Security Disability.  I already see a counselor I decided to post it here.  It sums up how I'm feeling, and how I imagine many of you feel, or have felt, who have tried to overcome disability from these dreaded diseases.  I already see a therapist to help me deal with this, but I thought it might be helpful to someone else, who may be feeling the same way.

You live a great life!  I had envisioned myself doing what you're doing, traveling the world - until I was dealt the lupus/fibro blow.  I know you deal with the same issues, at least for lupus, but it seems as soon I  make progress, everything I'm trying to do is derailed by one cir****tance or another, or the dreaded major flare.  The pain has become significantly less severe with the weight loss, To date, I have lost 245 pounds, the absolute maximum my doctor will allow prior to surgery.  About 15-20 pounds of the weight is skin, and after surgery to remove it, I will weigh between 140 and 145.   The fatigue is incredible!  Every day, about  3:30 or 4:00, I am barely able to hold my eyes open, and I have to go take a nap, usually for about two hours.            I am trying not to lose hope, but it seems my dreams to overcome SLE and Fibromyalgia and be productive again are slipping quickly beyond my grasp.   I'm on hiatus from school this year, to get the loose skin on my lower body removed from the weight loss. It will be a staged process, with liposuction  first to remove the fat deposits hanging onto the loose skin, then a thighplasty, to remove the excess skin.  Each healing process is about 6 months, barring complications.  It's a medical issue, as no matter how carefully I disinfect my skin and make efforts to keep the folds dry, I end up with cellulitis or cutaneous yeast infections. I am building an antibiotic resistance, as this last infection,about three weeks ago, I had to use two different types, in order to competely eradicate the infection.  I should own stock in Johnson's Baby Powder and PhisoHex (it's still available to doctors for surgical scrub, and my doctor gets it for me).  I found this great lotion  that's made by Vaseline, Moisture Rescue, and it's better than the old Vaseline Intensive Care. In spite of all I do, I  still get the infections!  I was so scared it was something bigger, I went and got tested for AIDS!  Of course, that was negative.   So, that's what's going on with me, and it seems my dream to become a Bariatric Registered Dietician, will have to go wherever it is that dreams unrealized go, as it seems to no longer be a dream deferred.  I'm trying my best to deal with this and not get depressed.  I've always been one to set my goals very high, and I've not had a great deal of difficulty in attaining them, but perhaps I've met my match with SLE and Fibro.   I hate to think of myself as a pitiful soul who accomplished great things in the past, but is now a "has been". An accomplishment for me these days is being able to get out of bed, and make it through the day without "lupus/firbo fog".  I'm so afraid that this disease will rob me of my mental faculties, and I have even gotten  lost when taking a very familiar route.  I also dread being afflicted with the "family demon" - dementia.   Unfortunately, that's how things stand with me. I'd give more than a million dollars to be rid of  all this and go back to life as it was.   Sorry I didn't have better news,  but as the late, great Jack Gibson used to say on the radio - "That's the truth, Ruth".   Hope the upcoming school year goes well for you, and that you are flare-free!

Thank you so much for sharing this, it is I'm sure how many of us feel. I had always planned on being so independant as a senior citizen and not one of those people that climb into a rocking chair when they hit retirement age like my grandma did. I'm now realizing she probably had fibro too. I can remember her being near tears and telling my mom 'But it hurts so bad when I move around." Well I'm not in a rocking chair because I can barely climb out of bed most days. It is very disappoonting to be where I never wanted to be, however I have found some solace in being able to knit and crochet items that are donated to Salvation Army.
We have to learn to re evaluate our dreams and maybe learn to accept less. As a Chrtistian I've found the only way I can do this is surrender all the feelings to God but even then it's trying. I've had to learn to "make friends" with my pain. Not a friend I like but one who is there and not leaving so I have to learn to tolerate and live with it. It is ever present and often all consuming. I take my meds and do my stretches and anything else that will ease the pain but I know it will still be there when I'm done. Even at night it is there to wake me from the few hours of sleep I hope to get.
I wish you and your friend more pain free days than painful ones but I know that may well not happen. If nothing else know that you two aren't alone and we are with you. Feel free to post anytime and even your friend if she can use some support I'm sure no one will mind if she hasn't had surgery, we are more concentrated of the fibro than any surgery. Bless you both!

Thanks for your reply. 

I too, am a Christian, and as my friend suggested to me, I try to do something for someone else everyday that I believe will please God.

At the same time, I'm trying to figure out what it is He wants me to do, and yes, I sometimes feel angry with Him,  in that He allowed these conditions to rob me of the profession I loved, and that I felt I was called to do.  " The Lord giveth, and the Lord taketh away; blessed be the Name of the Lord."

I even used to play "reporter" as a child, with a little reel to reel tape recorder my parents once gave me for my birthday.  I would sit in my room for hours and "play radio", picking up objects and "ad libbing" commercials for the product. I'd interview my friends, who pretended to be storybook characters.  Of course I didn't know that was what I had been doing until much later, when I began to study and learn my craft.

It's something that has always been with me, and felt as natural as breathing.

I ask God why many times; perhaps I made my career my "god", and it was His way of getting my attention.  I have begged for forgiveness many times, and for Him to please restore me as he did Job.  In fact, I always say, if you want to know about me, read the book of Job.
I'm still waiting for the end of the book to happen for me.  If He did it for Job, He can do it for me, but after 14 years, it's getting hard to keep the faith, and deflect the anger and emotional pain that I feel.

After all, despite the fact that I'm saved,  I'm still human. 

It has to be even harder for you because you loved your profession, I was already "retired" in my late 30's. Hubby said I didn't have to work unless I wanted to. I was happy to leave my customer service job, even tho I liked it alot I had an 8 yr old girl and wanted to be there at home so she could have her friends come hangout and so I could keep an eye on her during her teen years. By the time she was past all that I had fibro, COPD (lung disease), arthritis and all the other stuff older folks get. I've recently developed some neurologic issues like neuropathy and some odd muscle and nerve reflex issues. Getting older isn't all it's cracked up to be,but it beats the alternative, on most days anyway.

It's perfectly normal to be angry with God and ask why, why, why me? It's even normal to question if He is really in your life and if he is why is he letting this happen? I'm sure we have all done that. All I can say is just because we are Christians doesn't mean God is going to give us a "good life", it just means He will be there to help us thru, if we let Him. I've had to learn to say NO to lots of people who were used to me being a go getter. I've had to learn to make alternative plans for activities I'd planned on doing, just in case I can't do them. I was recently all excited about starting an at home business making dog sweaters and other attire, I figuered I can do that at home and just go out on my good days and deliver to local shops. Nope I've been sick all summer with my lungs so I haven't been able to get out yet. So much for that idea! I'm guessing God wants me to spend more time sitting here reading His word. Not in my plan but that gets usurped by His plans. It's very hard and I know it's different for all of us. I just hope that in time you can get to a place where you can be comfortable where He wants you. Sometimes we don't have to like it, we just have to do it. My favorite saying to my daughter for many, many years. I wish I could wave a magic wand and make all of us better but we know how that story goes! God bless and I pray you can find some peace in all this drama that is our lives!