Hi, I'm Jami. I'm 30 with le in 1 leg

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Hi, I'm Jami. I'm 30 with le in 1 leg

Postby Jami » Wed Jan 31, 2007 5:33 pm

Wow, I just found this site yesterday and I have gone from ecstatic to sad to hopeful reading stories and information posted on here. I don't want to make this too long so I will give you my story as brief as I can. I was injured in a bicycle accident at age 8, big knot and bruise on left thigh. Then the swelling started at my ankle shortly thereafter. I was diagnosed with lymphedema and thats when my mother, God bless her, started taking me to see all sorts of Drs. I have primary le because after a surgery to put a shunt in my groin at age 11 they found only one lymph node. I have had a wright linear pump and still have a lympha press. I knew back when they put me on them at such high pressures that it was hurting my leg. I went to Austria, the Vodder Clinic at age 15 for MLD. I learned there that the pump should only be used on a very low pressure and that I should not have any more surgery because it just damages the lymph more. I have had cellulitis 4 times the first time they thought it was appendicitis and removed my appendix. After that I was like " I don't have an appendix, it's something else!" I have gone to Jersey, Dallas, Oklahoma city and now Tulsa for MLD treatment. Currently I am in stage 2 or 3, no pitting anymore. I start treatment this week again and my goal is to get fitted for a sleep garment and new stocking. I know that weight is a big factor and I want to get back on a MCT (medium chain triglyceride) diet. That really helped me before. I have gained probably 50 lbs. in the last 3 years, part of it from pregnancy but mostly from bad eating habits. I think I battle with depression over not being able to do the things I want to with le. Anyways, sorry this was so long. I hope to hear back from anyone who wants to talk. Thanks for starting this site.

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Postby suzeeq » Wed Jan 31, 2007 11:56 pm

Hi Jami, I just wanted to welcome you. Glad you found the site. It's very helpful. I usually check the site every day and post every now and then. I don't feel so all alone now. It sounds like you are on the right track, starting MLD, wearing compression hose and a night garment. I have not tried any of the night garments yet; I bandage every night and wear my hose during the day. You have certainly been dealing with this issue for a long time, as alot of people on this site have as well. Some were not diagnosed correctly in the beginning and are dealing with some serious problems now. It sounds as if you have things under control. Any exercise that you could do would be beneficial, from moving the lymph fluid to overall better health. Walking is great and swimming is good too. Take care. Susan
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Postby silkie » Sun Feb 04, 2007 3:51 am

Hi Jan

Glad you found us Sorry i have not replied sooner

I have a weight problem to both primary lymph and lipedema

pregnancy increased my weight and nothing seemed to move it regular diets seemed to increase it all the more

I am glad you found a diet that does wrk for you

I found that no gain is fantastic a pound lost is even more so slow and sure is the best just patience is hard to keep when it happens so slow but it does if you dont expect 3 dress size reduction in weeks reality is the old plodding away slowly it does happen

Excercise even a little movement regulally each day will improve flexibility this in turn helps you do a little more each week untill you be suprised the improvement you get

swimming is fantastic if you feel comfortable and at home in the pool
walking is good keep to low impact excercises as high impact can damage or lymph systems

Good breathing excercises to will help the lymph movement along with muscle movement

look forward to hearing how you are and how your progressing


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