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Jenny Wonders
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Girl, van I relate to this one too. I didn't catch how long ago you were diagnosed with lupus, but I've had it since I was 11, so it has been 15 years. I have always been a very active, strong-willed person, so even as a child I hated asking for help and would constantly push myself beyond my limits. I think because I was so young when I was diagnosed, it took me much longer than some others to learn that my pride was not worth more than my health.
In the past two and a half years I have had two surgeries on my left foot, two surgeries on my right foot, and two surgeries on my right leg. All of which left me either on crutches or in a surgical boot for a minimum of 8 weeks each. I spent lot of time in bed, and a lot of time getting yelled at by my family for trying to do too much on my own. :-) I did however discover lots of TV shows that I previously had never watched! Lol
It is always difficult for us to ask for help. In a world full of so many lazy people who want to be waited on hand and foot, we wake up every morning lots of times just hoping and praying to get through our day.
Lola, thank you for being strong enough to ask for help, and for reminding me and everyone that we are not weak for reaching out for help.
I'm not sure what it all entails, but I'm willing to help you out with whatever you need help with if I can. Contact me and let me know what I would be doing.
Help Me
After being diagnosed with Lupus somethings changed and others stayed the same. My pride was still there full force. I had a very hard time asking for help. I chose to push myself beyond my limits. I changed the way I did things to make them easier to accomplish without help. Fourteen months ago...
I can 100% relate to this blog. In the last two and a half years I've had a spinal tap which resulted in needing a blood patch a week later, a broken 5th metatarsal in my left foot which resulted in a cast from the knee down for 6 weeks, an elbow infection called osteomyelitis that caused 9 days in the hospital followed by 6 weeks with a PICC line at home giving myself IV antibiotics twice a day, then surgery on the left foot that was still broken when the cast came off, then I broke the right foot the same spot as the left foot and had surgery immediately to put a screw in the broken bone just like the left foot, then I had necrotizing fasciitis in my right leg (flesh eating bacterial infection) which almost lost my leg and also almost killed me, spent 16 days in the hospital then wore a wound vacuum for three months, re-broke my left foot and bent the screw while I was in the hospital with my leg (bc the nurse aid that was sent in to help me get up to the bathroom was 67 years old and 5" shorter than me and I lost my balance and rolled my foot and it rebroke) then after the 3 months of wearing the wound vacuum I had a skin graft which put me in the hospital for another week, that healed, I tripped on my bed and rebroke my RIGHT foot and bent that screw also, so first I had surgery on my left foot to replace the bent screw, that healed and I had the same surgery on my right foot to replace THAT bent screw...and that's been the last 2 & 1/2 years.
On top of that I was taking 20 mg/day of prednisone, so that combined with being immobile due to my injuries and infections, I had gained a lot of weight. I also lost my 94 year old grandmother who I was close with my entire life so I had a lot of emotional stress going on.
I am 5'8" tall, so I'm not a small girl, but my healthy weight is 145-165 lbs and I was up to 196 lbs with full moon face to boot. My rheumatologist put me on Rituxan (a drug that is FDA approved for RA, not lupus, but they're finding it works on a lot of lupus patients) and since then my prednisone dose is down from 20 to only 8 mg/day!
I also take a natural supplement called OPC-3 which I really think has made the difference. There are many kinds of OPC-3 and I recommend them to everyone with a chronic illness. I am the first to admit, I thought it was a crock of $HIT. I only started taking it bc a friend wanted me to, and I was AMAZED. It helps with both the pain and the fatigue.
Moral of the story I spent a long time basically immobile and gained a lot of weight. Once my peed dose dropped and I was able to start doing more, I've lost 40 POUNDS! I am currently 156 pounds, and I haven't been under 170 in over 6 years. I am ecstatic.
So I understand the frustration of being where you are at right now, I've been there. Just hang in there, you'll get to where you want to be! I quit drinking soda at home, and I was drinking about 2 liters of Coke a day, and now I drink zero calorie Crystal Light, so that alone cut literally like 3,000 calories and a lot of sugar out of my diet. Plus all that sugar.
So you do whatever you can, and have faith that you'll get there! I have faith you'll get there. And while you're getting there, you are blogging and touching the lives of SO MANY people going through the same thing.
Everything happens for a reason. God knows what he's doing. If God beings you to it, He will get you through it. Remember that. :-)
Love ya Lola!
Jenny
Watching Weight
I have bitten the bullet and started a diet. The combination of the Lupus medicines and my leg being broken for over a year have left me feeling a little plump. Now that I am able to walk again, I can get my body moving. The main goal of the diet is not to reach a certain number on the scale, bu...
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May 31, 2011
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