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Lymphedema in legs
I was diagnosed with lympedema in 2007. Due to unforseen circumstances I am now on disability so i cant stand for long periods of time without excruciating pain. I have to change so many things in my daily life but one thing that is bothering me is the pain I feel all the time .Try to do things to put in the back of my mind. My condition seems to be getting worse with the stiffness . I watch sit and fit on TV when can which helps some but the thought of not being able to walk at all has me terrified.
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Teresa @hopeful33250 and Linda @lioness -- Sorry for not posting sooner. The test a week ago Sunday went well. It was quite an experience having leads glued to your head, face, upper shoulders and legs for monitoring brain waves, heart, breathing, and movement. Getting the gunk out of your hair wan't too bad. Rooms are nice, room service to wake you up is great ☺. Met with the doctor on Monday and went over the results. It was pretty eye opening. He wrote me a script for a CPAP and I've been using it for the past 10 days. It's a little difficult getting used to but not as bad as I expected. I may have to find a different mask. I got a Fisher & Paykel Simplus full face mask and am having a little trouble with leaks around the nose but I suppose it's because I'm a side sleeper that moves around a lot. Cleaned the mask and hose enough to know I didn't like it and went to a medical store and bought the SoClean 2 machine to do the daily chore stuff. The lady at the store said I could take back the mask that came with it as long as it's within 30 days so I might do that to get one that feels better.
Life is definitely a journey...hope all my Connect friends are feeling OK.
John
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3 Reactions@johnbishop I'm looking forward to hearing how your evening goes. It should be interesting to say the least. Teresa
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1 Reaction@john how did it go Linda
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1 Reaction@thankful -- Thank you Jim. I will definitely remember the tip about the mask. I didn't like the nose mask at all but will have to see what happens when they try it on the sleep over test. Will try to remember to post an update Monday.
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2 Reactions@johnbishop- John, I went through the same type of sleep test in the local hospital in my area over 20 years ago and it was an eyeopening experience. I remember waking early the next morning and sitting up and feeling "Oh, I remember now the feeling I used to have after a great nights sleep"! I was so refressed! I am a real mouth breather and therefore they generally want to recommend a full face mask for that reason. As I was getting fitted for one I would take it home and use it only to be awakened by the leak alarm. I tried several full faced masks and it seemed I had trouble with all of them. The tech told me that she guessed I had a "Tweener" shaped face which means simply I'm in between sizes. I felt them a bit claustrophobic anyway. I have used the nose mask ever since and it works great for me. I do use what is referred to as a chin strap so that helps keep my mouth closed and forces me to breathe through my nose. The one thing I would say about what you were mentioning is that I also find myself easily stuffed up especially during allergy season and within 10 min. the pressure coming through my mask totally clears that up. I use the Fisher/Paykel Zest mask. Welcome to the Darth Vader ranks! You will never regret it! Hoping you are able to get that knee worked on soon as well! Jim @thankful
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3 Reactions@hopeful33250 -- Mayo really does do a great job prepping you for the test. I thought about taping a short video with my phone once I get hooked up if they let me. It will be interesting Sunday night.
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1 Reaction@johnbishop It sounds like a great program. I appreciate your sharing your experience. I especially like the idea of the video before the sleep study. Mayo really preps patients well.
Teresa
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1 ReactionI met with the Sleep Medicine doctor today thinking he's going to say "you have sleep apnea and you will need to start using a CPAP machine". After filling out another 3 page questionnaire on sleep habits and related stuff, the doctor examined me and asked a few questions. One being what do I think is a part of the problem. BAM - I got to tell him I always thought it was that I have trouble breathing through my nose because it seems to be blocked or partially blocked all the time. I can do a sinus rinse and it might feel good for a minute but then back to feeling partially blocked. So, he looked and a few minutes later told me the rinses won't help. You have a deviated septum. The left side of the nose is partially blocked. He told me he thought I had obstructive sleep apnea and wanted to setup an overnight at the clinic and asked me if I agree with his assessment. I told him I did but...
I hate the buts, but I'm more concerned with my knee getting fixed than I am about the sleep apnea. Then the good doc that he was brought my thinking back into line with reality. If you have to have surgery on the knee, the surgeon will look at the sleep apnea and want to know it's not going to effect the outcome of the surgery. He wouldn't want a patient gasping for air coming out of surgery. So I put on my happy face and said lets do the official sleep apnea overnight test and that way they look at your brain waves, heart, breathing and record a video of your sleep so they can compare the timeline and know what's happening when you are doing all the wiggling in bed (or some words to that effect ☺). So, next Sunday night at 6:30 pm I have to report to Mayo for the overnight and then meet with the doctor again Monday morning. So I hope to have it all out of the way in preparation for my consultation appointment in Orthopedics with the knee specialist on August 9th.
One thing really nice about my appointment today was the Sleep Medicine folks have their act together. After my appointment was setup, they took me over to the area where you will be staying for the test and you watch a 10 minute video of the test that used an actor for a patient. After the video they brought in a CPAP mask that fits over the nose and we did a trial run to see how it works. Let me say I was a little apprehensive but the technologist explained the goal of the test and if one mask didn't work they have 2 others they can try. I'm kind of worried that if you use the small one that just covers the nose you have to keep your mouth closed. My thoughts...fat chance. I guess I will find out Sunday night ☺. I was put at ease by the thorough explanation given to me by the tech so Kudos to Mayo Clinic. Will let you know next week how it went!
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2 ReactionsHi Jim @thankful, I do use a reusable gel pack that I keep in the freezer once in awhile but not normally after exercising. I will have to give it a try. All the best to you too!
Happy Friday!
John
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3 Reactions@johnbishop- John you are very welcome! You are amazing! Working on pre knee surgery exercises is so smart! I would recommend putting a bag of ice on your knee after each exercise. Very regenerative for sore joints. Everyone I have ever known that had a knee or hip replacement seems to always say they wished they had done it sooner because how well it has worked out. If the knee replacement is what they recommend I would definitely encourage you to go for it. All the best to you! Jim @thankful
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