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I should probably put these updates atv the end of this but...
update Feb 4 2015, I was diagnosed with calsinosis cutaneous. I have had it for a while but has never been a real problem. until the past year or so. It too is something some Lupus patients get. This one really frightens me. Again it is something there is no cure for and it is disfiguring disease. It makes doing simple things difficult,(as if I needed more of that) I am now seeing a hand therapist to learn how to adapt and accept that there are things I am just not going to be able to continue to do.
I decided to put this update at the top rather than inserting it at the bottom, it's a long read.
Anyway, I had my right knee replaced a year ago in April, it is doing Great and has relieved me of a lot of pain. It is so wonderful to be able to walk without the pain in my knee. I still have the pain in my feet but it is nowhere as bad.
Also , I have officially been diagnosed with Chronic Kidney disease. My kidney function is at 32%. I have known I have had type 4 Lupus Nephritis for a while, but never was told what my kidneys were functioning at, now all of a sudden I'm seeing all these Dr. and specialists and my meds are increased and am being monitored by weekly. Anyway, that's where I am today. After being told, I was consumed with nothing but "My Kidney problem" and what was I going to do? Am I on my way to Dialysis? What other problems are going to occur because of this? etc.. etc., Well I'm over that and back to taking it one day at a time
And now back to my original story....
I have had "SLE" (Systemic Lupus for those that don't know) since age19. I am now 59 Because of medications and numerous health problems I have had to battle a weight problem. I am a member of TOPS, (Take Off Pounds Sensibly)which has helped considerably. My hope is, that your comments and stories will help me achieve my goals.
A little, (LOL) of my history.
I was diagnosed 1n 1972. Little was known about the disease, it was rare and especially rare in men.
I was originally diagnosed with ghonnerea. Lupus test will show that if an anti DNA is not done. Once they figured that out they told me I had Discoid Lupus. I had a very bad rash over 70% of body.and arthritis was setting in.two years later it progressed to Systemic and I started getting worse The following year I had some minor kidney involvement and had to go in the hospital for a biopsy. Fortunately they got it under control. in 75 I had a stroke.. Cerebritis, inflammation of the brain. I was just married, my wife was going to school and pregnant and I was in a coma with less than a 30% chance of living. i was in a coma for two months. I was even told I died 17 time or my had heart stopped. I also believe I had an out of body experience. My wife threatened the hospital, the Doctors, military and anyone else she could think of. The Dr. finally told her they would inject me with a gram of steroids. It had never been done before but it would either cure me or kill me. She agreed. Almost overnight the lesions on my skin and face started disappearing but I was still out. Leslee, drove two hours everyday to be by my side. The Dr.s were ready to give up hope because I wasn't responding. finally i responded to Leslee's voice. once I became coherent I noticed her condition and stated, "you're pregnant!) She replied, "Yes" I said. maybe we should get married She told me we were. Then I realized I couldn't remember anything beyond waking up. The last date I remembered was 16Oct72. Almost 4 years was gone. To this day three of those years are still missing. I had to learn to walk again. Muscle atrophy from being immobile for so long. Had to learn to write again and needed help with reading. I was down to just under 85 lbs. with a 22in waist. The first day I was allowed to leave my room, Leslee wheeled my in a wheelchair out side. I had not been out in months and the only thing I knew was a green room and people in green smocks. I was mesmerized by all the people and the colors. When I went outside I couldn't believe the birds and the trees and how beautiful everything was. I began to cry. At that moment, I knew God had given me a second chance. He wasn't ready for me yet. We all take for granted all of life's precious little gifts because we get wound up in everything going on around us we forget what is important. And that is living. And being with the ones you love.
The bad thing about the steroids is you just can't stop taking them. they have bad side effects. I am still on them to this day, but, I am down to 5 mg.
Because of the steroids I have had three eye operations. Developed aseptic nuecrosis and have had two hip replacements. My right knee needs to be replaced.(i keep putting it off), and my left soon to follow. Both shoulders show signs of deteriorating. And now I'm having problems with the back of the eyes. Now, all that was due to meds.
I have also had paracarditis (inflamation of the heart) I have these nodules all over my hands which deforms them I am getting deposits all over my body which they have yet to explain and a problem with my feet they can't seem to fix either. Oh. and lest I forget a heart attack in 1996.
(Update, I had another heart heart attack in April of 2011 and had to undergo a quadruple bypass. Here it is almost a year later and I am doing well. I am back to exercising daily and trying to make better choices)
I am now,also seeing a nephrologist and have been diagnosed with a Type IV kidney involvement.
I recently( May 2009) Had surgery on my left hand,(carpel tunnel and they attempted to remove some of the nodules from my fingers. Unfortunately the surgery did not go as well as I had hoped. I do not have as good of use as I use to and face the possibility of having to give up playing guitar. But I can always learn a new instrument. The good news is, The pain is gone and I'm feeling better. It took a year for it to heal.
(Update I am back to playing guitar, not as well as I use to but good enough for my purposes. I have to modify some chords now and then and my fingers don't always do what I ask of them, but I am playing!)
In May of 2011 I suffered a heart attack and had to have a Quadruple bypass. The recovery seemed to take a long time and I put on some weight in the interim. I have taken the weight off and then some I am happy to report.
I get up every morning and thank God for my life, what I am able to do and the gifts I am blessed. My wife my children, my friends. I have been told by friends and strangers that I am an inspiration and I kind of believe that is why I am still around.. to give people hope.
I feel I have come to terms with this disease and accept what has happened and deal with it on a daily basis. I do not look at it as a handicap (although I did accept the handicap plaque and I go to the front of the line at Disneyland and other places (LOL)
and hope it can inspire some not to look at this as a detriment but as an opportunity to help others.
Thank you for taking the time to read my little novel.
I thought I would add this story to my text. Sometimes I Backslide as we all do, and this helps me to keep myself or get myself back on track. I use this in TOPS but it can be applied here with Sparks as well.
Here something you might like to pass along to your teams or friends It's mostly pertains to backsliders
[This is most of us.] Here goes..............
Well, here I am, 250 pounds of pure happiness. Listen I have so much fun at TOPS, honey---the meetings are great, etc. Of course, I could have a lot more fun if I hadn't had to watch my weight, ill out food charts, listen to lectures. They're all right, I guess, but I've heard it all so many times before. Oh, I'm sorry, I forgot to introduce myself. But I'm sure you all know me. I've been in TOPS 4 or 5 years. They really should give me an award. .I've lost enough weight to have a twin sister here beside me. I may weigh 10 pounds more than when I joined but I've certainly enjoyed myself. You know how it is -- sometimes I think the food just jumps on me. As the old saying goes: There'smore of me to love. And those silly calorie charts we're supposed to keep --- I'm just too busy for that. I fake it most of the time, and fill them out at the end of the week. My husband can't understand why I don't lose -- He tells everyone I eat like a bird. Boy, can I give you some tips! You see, I eat very small meals, and then I sneak into the kitchen later and have a few snacks. The trick
Is to eat only quite foods like marshmallows, bread and peanut butter. I keep some goodies under the bed too. Remember, though potato chips or crackers won't work -- too noisy. My way, nobody will ever know but me. We do have ball in TOPS though. Donï¿½t we? Oh, I know, I don't get to all the meetings, but you understand how busy life is. And I do have to leave right after weigh-in a lot of the times to get to a banquet or party, but that's because of my husband's business. And then there are the holidays. Well the reason I don't come to meetings after those is because I know I gained weight. Hey remember that time I said I gained because I had company and one of you said, "What did you do, eat them?" That was so funny, I cried myself to sleep that night -- but I don't want to think about that. But seriously, folks, I'd be a better member if I weren't so busy. I'm really very lucky. I have a beautiful home, a terrifically understanding husband and four wonderful children. My husband is so good to me. We go out to eat fairly often. Of course, it's usually for business dinners
And boy is there lots of good food at those business dinners. I'd like to do some sort of meaningful work outside my home, like at school for the kids. But the children say the school has more volunteers than it needs. I used to drive them to school and pick them up but now they tell me they'd rather walk because it's healthier. My son doesn't even want me to bother going to his ball games. He says I need that time to rest. He's so considerate. Sometimes, when I'm alone, I wonder if the children are just pushing me away because they are ashamed of my weight. But then I just sit down with some cake and coffee and tell myself that's ridiculous. You want to hear the sad truth? Deep down inside sometimes I just want to die. I'm so ashamed of my weakness that I not only kid myself, but I shut out the people who could help me..... My TOPS members. I know you're all fed up with me and I don't blame you. I know what you thinking about me. How I should quit and make room for someone who will really try. How I stay home when I've gained and only come to meetings when I lose. Everything you're ever said about me, I've said to myself a million times.
Finally it comes down to one thing --FEAR. I am so afraid to really commit myself to losing weight, because once I do, it will be up to me to get the job done. And I'm afraid I'm not enough of a person to handle it. I'm afraid to fail. PLEASE don't give up on me. I need you more than you will ever know. If I don't volunteer for jobs, appoint me. If I don't call during the week, call me. Please don't let me use all those silly excuses. Make me face the truth, don't humor me. Maybe knowing you have faith in me will give me the strength I need. Force me to be the kind of person I can be. Don't let me quit TOPS. Please help me make it -- one day at a time --- one meal at a time ---- a pound at a time. Just think how great if would be if I could go the next meeting and show a loss. More than anything on earth I want to stand onstage, in white, to receive my diploma as a KOPS. Are you this person?
Are you this forgotten member? Do you need help? REMEMBER - Knowing what you want to be makes deciding what to do a lot easier. It's all up to you!
My goal is to get to 165 lbs. I originally started at 267 and am currently 191. (1/15/07)
I also want to be able to get on one of my horses without a great deal of difficulty.
I try to ride a stationary bike or walk the treadmill 5 days a week. Lift weights using the 5 factor fitness program. I do upkeep on our small ranch. And I work with horses, training , grooming etc.
I also attend TOPS (Take Off Ponds Sensibly) once a week.
I live in the Sierra foothills in Northern California
Life is God's gift to you. What you chose to do with your life is your gift to God.
Secrets of Success
| current weight: 214.0
I'm sorry you are going to have to go through some more. You have gone through so much. God bless you and may you have a quick recovery.
1193 days ago
don't forget to play ....
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1203 days ago
Looks like you are back again. We have missed you. Haven't read the chat yet so will find out what you have been up to.
Thanks for commenting on my blog.
1264 days ago
Thank you so much for the wonderful welcome Rick to Sparks with Lupus Team on my page, I do have to say I love your babies they are beautiful.
1272 days ago
thanks for the Spark friend add
1293 days ago