Lymphedema in legs

Posted by mariwy59 @mariwy59, Aug 2, 2017

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, Volunteer Mentor | @hopeful33250 | Jul 24, 2018

In reply to @hopeful33250 "@johnbishop It sounds like a great program. I appreciate your sharing your experience. I especially like..." + (show)

@johnbishop I'm looking forward to hearing how your evening goes. It should be interesting to say the least. Teresa

John, Volunteer Mentor | @johnbishop | Aug 9, 2018

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

John, Volunteer Mentor | @johnbishop | Aug 9, 2018

I had my meeting with the knee specialist today in orthopedics. I feel a little sheepish after my appointment. After we went through the x-rays and he had a chance to examine the knee and discuss the symptoms I am having he thought the best treatment would be physical therapy even though there is advanced degenerative arthritis with bone on bone and loose bodies in the knee. My pain is really more aching maybe a 2 or 3 on a scale of 10 but no real sharp pains unless I try to move the right leg in a lateral movement. The doctor said the replacements are normally for people having a lot of pain and the outcome in my case might actually cause pain in the knee down the road. He thought it would be best to start with PT and stretching exercises for the tendons and muscles and then see where I'm at. Possibly have a steroid shot or the gel shot to add a lubricant in the joint. My daughter went with me to the appointment which I'm glad because she is more objective than I am and can see the big picture. Sigh, if I had just listened to the doctor at my lymphedema follow up appointment when he couldn't get me an appointment with orthopedics. His recommendation was setting up an appointment with PT and possibly a steroid or gel shot in the knee. Some men are just stubborn and need to hear it twice. ☺

Reminds me of a very old IBM song I first learned going to their basic school for customer engineers here in beautiful downtown Rochester, MN.
Ever Onward - The IBM Song
-- https://www.youtube.com/watch?v=_EqwvLzBWAs

Happy almost Friday!
John

Teresa, Volunteer Mentor | @hopeful33250 | Aug 9, 2018

Hey, John, @johnbishop

No need to feel sheepish at all. It sounds like very good news. I generally prefer to do anything other than have surgery. PT is always a great experience for me and I'm sure it will be good for you too. I usually have PT at least twice a year just to keep tuned-up and walking the straight and narrow road! I'm listening to Ever Onward as I write, this must be an IBM original 🙂

Teresa

John, Volunteer Mentor | @johnbishop | Aug 9, 2018

In reply to @hopeful33250 "Hey, John, @johnbishop No need to feel sheepish at all. It sounds like very good news...." + (show)

I am somewhat relieved. Definitely was not looking forward to surgery.

lioness | @lioness | Aug 9, 2018

In reply to @johnbishop "I had my meeting with the knee specialist today in orthopedics. I feel a little sheepish..." + (show)

@john Bishop thats a cute little ditty thanks for letting me know yoir results hope new mask is better Linda

thankful | @thankful | Aug 10, 2018

In reply to @johnbishop "I had my meeting with the knee specialist today in orthopedics. I feel a little sheepish..." + (show)

@johnbishop- John, real men tend to be stubborn, but I enjoy your transparency! I have been getting some PT weekly and once you find a great PT, things are always better.

thankful | @thankful | Aug 10, 2018

In reply to @johnbishop "Teresa @hopeful33250 and Linda @lioness -- Sorry for not posting sooner. The test a week ago..." + (show)

@johnbishop- Masks for me were everything. Once you find the right mask John, Cpaping becomes much more enjoyable (did I just say that? 🙂 Well better! As I mentioned in an earlier post, I have been using C-pap for close to 16 years and have washed my water resevoir and mask(s) for all those years. I've seen a few of those advertisements for the SoClean 2 machine, but have had thoughts is this just another gimmick? Anyway, I would love to hear your thoughts on it after you have used it for a while. Thanks, Jim @thankful

John, Volunteer Mentor | @johnbishop | Aug 10, 2018

In reply to @johnbishop "Teresa @hopeful33250 and Linda @lioness -- Sorry for not posting sooner. The test a week ago..." + (show)

@thankful -- I had thought the same thing, just another gimmick but after a week of daily washing the mask, water reservoir and hose it was another thing to do that messed with my morning routine and added about 10 minutes or so. My normal rise and shine time is 5am so I'm not looking to add more morning stuff to do. Granted that it's not a hard task to do. It just takes a little time. I did learn to drain the hose better -- pretty quick lesson when you get splattered in the face. It is spendy but I figured in the long run it's going to save me some time and make life a little easier. I would stop by your local medical supply store and just ask for a demo to check it out. This is only day 2 of using it but it sure was easy this morning to just take off the mask, unhook the headgear and drop the mask with the hose still connected into the machine and close the lid. You can program the time it starts or just push the manual button. It's noisy for 7 minutes but then I leave the room. After the cleaning cycle, the mask has to stay in the chamber for approximately 2 hours for the disinfecting (?) cycle. I'll let you know after a few weeks how it's going but right now it's looking pretty good.
John