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Post by christel on Sept 29, 2014 20:38:57 GMT -5
As I mull over the most recent developments and options in the treatment of my leg ulcer, I am becoming a bit overwhelmed. Although I was quite anxious in moving forward more quickly and getting on with other treatments a couple of weeks ago, I am now feeling a break in the pain (yay!). I have actually realized this today in relation to the past few days. The trick now is to take it easy and let my fragile body continue to heal. I am going to follow through with the MRI on Friday, and then have one of my regular checkups with my rheumatologist on Monday. As of now, I have not made another appointment at the hyperbaric chamber clinic. Once I commit there, it is most likely going to be daily treatments for about 30-45 days in a row, as much as I can ascertain. A copay is paid at each treatment, also. Cha-Ching, cha-ching...oh, I just don't know. I think I will just get these next two appointments taken care of and go from there. If anyone has any ideas, feel free to shout them out!
Christel
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Post by jeffn on Sept 30, 2014 17:44:16 GMT -5
Lots of decisions for you Christel. Good news about the lessening of pain, is the leg ulcer getting a bit smaller too? You have had quite a time with this thing. As long as your ulcer is not getting worse your "getting through the next two appointments" is reasonable and then you can base your ongoing decisions on those results. Glad you are in a bit less pain.
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Post by nhnancy on Sept 30, 2014 17:55:06 GMT -5
Christel, maybe the lesser pain is a sign of healing....that is a big plus! and being kind to yourself, relax, eat some foods that fight inflamation, do some yoga, relax...it helps with healing as well as laughter......:-))
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Post by christel on Oct 6, 2014 5:04:58 GMT -5
Good Monday morning!
Off to U of M scleroderma clinic for my recheck today, hyperbaric clinic consultation tomorrow, and long-awaited MRI of left ankle on Wednesday. I continue to struggle with pain and burning in left lower leg, including ability to walk only very short distances. Sounds like a fun week, eh? Guess I have to do what I have to do to get better once and for all!
I will keep you posted. Have a good week!
Christel
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Post by jeffn on Oct 6, 2014 6:45:52 GMT -5
All the best this week Christel! Take it easy between appointments as you do have a busy week ahead. By the end of the week I am sure you will be WAY tired of poking and prodding. How far away is the SD clinic? Hang in there and we will be looking forward to your next update.
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Post by christel on Oct 10, 2014 18:34:27 GMT -5
Hello, friends! It has been a long and exhausting week, but I knew that was going to be the case. Had my rheumatologist appt. on Monday (75 miles one way-nit an easydrive). My rheumy is on board with MRI and trying hyperbaric treatments. She did say, however, that good wound care is still about 80% of healing and that it would take a long time. Unfortunately, the underlying causes of wounds is a bit different in scleroderma (usually due to vasculitis) and responds to treatment differently. In other words, continue to be patient. Tuesday was the hyperbaric consultation. This physician is confident my wound will heal, but again emphasized good wound care.. We are now waiting for authorization from my insurance company. That was requested on Tuesday, and I am a bit more than disappointed that it hasn't been authorized yet. I was hoping to be able to start treatment on Monday. You go there five days a week for probably 4-6 weeks. My leg continues to be painful, so I just want to get going with this thing, before something else takes hold or I end up with it getting bigger yet... MRI was on Wednesday, and that showed no bone infection, but lots of changes to surrounding tissues. My left ankle is actually very stiff and has decreased range of motion due to my decreased (normal) walking. I am trying to exercise it gently without causing more pain and trauma to the area. Kind of tricky! My left calf is super sore and tight, also. I was very fatigued all day today, although I did sleep fairly well last night. I think I overdo it when I am having a better day, and then I pay for it the next day...! I don't think my life is ever going to be 'caught up'. Oh, well. Yet more updates as they become available...
Christel
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Post by nhnancy on Oct 11, 2014 12:46:26 GMT -5
Oh Christel, hoping your ins. comes through with approval! oh the red tape...ugh! Are you still using manuka honey? Have you researched anything else natural you can ingest to help with the healing process/inflamation...I know pineapple has anti inflamatory properties, turmeric... Best wishes for you! Nancy
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Post by christel on Oct 13, 2014 18:09:50 GMT -5
Still no authorization. I am so disappointed. It is amazing, though, how much less pain I have when I stay off my feet! Trying so hard to be a patient patient!
Christel
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Post by jeffn on Oct 13, 2014 19:56:54 GMT -5
Hard to be a patient patient right? Hope you hear from the "powers that be" soon! It can be frustrating for sure. At least you see some improvement when you rest it and stay off it. Like you are supposed to do - ahem. Is it getting colder out your way? Warm then cold here, the weather can't seem to decide.
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Post by christel on Oct 14, 2014 7:52:19 GMT -5
Weird warm here, they say. I never left my house yesterday, and I may not go out today. (After all, to be a good patient, I need to stay inside, right?!) Rain off and on, too. Guess we should be glad the true cooler weather isn't here yet. Just a matter of time.
Have a good one, guys and gals.
C.
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Post by christel on Oct 14, 2014 17:05:05 GMT -5
Denied!! Oh, how disappointed I am. I am supposed to get a letter with the reason and instructions on how to appeal. The physician is going to request a peer to peer review, which she feels will help. In the meantime, I am worried that my wound will get larger and / or get infected again. Plus, I am so tired of not having a life. C.
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Post by nhnancy on Oct 15, 2014 17:38:55 GMT -5
oh, it makes me so mad when ins. cos deny.....i thought they were there to help you get better....grrrrrrrrrr...I am glad ur doc is requesting a peer to peer!
((((((((christel))))))))
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Post by jeffn on Oct 15, 2014 20:43:30 GMT -5
Keep pushing Christel - squeaky wheel and all that. Like Nancy says at least your doc is on your side by the sounds. Hope it all works out.
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Post by christel on Oct 16, 2014 5:52:36 GMT -5
Quick update: appeal meeting at 9 a.m. today. Check back for further developments!
C.
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Post by jeffn on Oct 16, 2014 6:31:47 GMT -5
Fingers crossed!
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