I lost nearly 200 pounds after being told I couldn't due to lipedema diagnosis.

[BlueLucy]

Last edited Sat Sep 23, 2023, 11:02 AM - Edit history (2)

I started this journey weighing 360 pounds, my current weight is 165. I still have lipedema, it's very visible and painful. They're nodules that expand, swell and acquire fluid around them. If they are not removed, the fat could easily come back with a small slip away from a very strict 800 calorie anti inflammatory diet. My insurance denied coverage for lipedema surgery saying I was lacking in conventional therapy even though I had done so much conventional therapy work on my own. The problem was they wanted receipts and I did it the low cost way. I have spent hours on the phone the last few days. I am a fighter. I am not giving up! I'm worth it! I want to be pain free! I want to have this excess skin removed! I deserve it! I worked hard, and I want to be more mobile so that I can continue to do more.

I was able to change my Medicare insurance with an effective start date of 10/1/2023 instead of having to wait for the new year to a insurance that is known for being more friendly to lipedema patients according to people in lipedema circles. I'm working with Coverlipedema,com who will help me fight and even have a surgeon in Gig Harbor WA willing to do all the paperwork. I'm close. I can't stop now. I'm on SSDI and work part time on a farm here locally at the fruit stand. My rent is more than I make.. Insurances wants me to pay for lymphatic massages and medical grade compression garments. Also, even though Gig Harbor is only 2 hours away, I will still need hotel stay several times. I'm lucky, many women have to travel out of state for this. I appreciate all the help I can get. I have uploaded some pictures. Please let me know if you an see them. https://ibb.co/album/BGJbrq



https://www.gofundme.com/f/conventional-lipedema-therapy-for-insurance

[MOMFUDSKI]

1. Wow!

You look great and bet you feel even better. We always have to be our own best friend. Keep up the fight

[sinkingfeeling]

3. I agree!

[BlueLucy]

5. Thank you so very much.

I have thrown everything I have in me into this battle. I will never stop fighting.

[marble falls]

2. Quite an accomplishment, and with no cooperation from insurance, good on you!

[BlueLucy]

4. Thank you so much!

It was no easy feat! I am so very proud of myself, actually. I continue to fight. I have to.

[marble falls]

6. I can not get rid of the twenty pounds I regained after getting over my illness this year ...

... you are truly (to use an overused and misused word) awesome.

[mountain grammy]

7. You should be proud of this accomplishment

I wish you all the best in this fight and it appears you're fighting to win. What a journey.

[highplainsdem]

8. Congrats, and good luck with your fundraising. But your GoFundMe link won't work for

donors. The "manage" section in it takes people to your sign-in page.

You need this link in the OP:

https://www.gofundme.com/conventional-lipedema-therapy-for-insurance

[BlueLucy]

9. Thank you!

I fixed it!

[The Third Doctor]

10. You look great. Awesome job. You are very inspiring.

[BlueLucy]

12. Thank you! nt

[Hortensis]

11. Fabulous progress! You look good!

Our prevention-based healthcare obviously needs to include the additional care people in your situation must have. Glad to hear you have others to work with.

[LatteLady]

13. Amazing progress! Hang in there and persevere

I have lipedema too, did conservative treatments which do help somewhat but not nearly enough. I’ve now had 2 lipedema liposuction surgeries and the reduction in pain and increase in activity level are wonderful. So you’ve done a GREAT job so far, hope you are so proud of all you’ve accomplished, and don’t give up now!

I did one round of a Very Low Calorie Ketogenic Diet and did lose weight. Have been in a maintenance phase to stabilize, then will do another round starting next month.

This disease is not well known or properly managed/covered in this country. I saw 3 docs before finally seeing a physical therapist for leg pain and declining activity level, she’s the one who said “Do you think you might have lipedema?” I had never heard of it before! One of the docs told me to drink more water, lose weight and exercise. Thanks doc, I never thought of THAT.

[BlueLucy]

14. Thank you so very much.

It's nice to have others who know the struggle. It's hard to lose weight. It's even harder with lipedema.

[MLAA]

15. Congratulations on this huge milestone of your journey!

Your gofundme is working now and was able to add a bit.

[BlueLucy]

16. Thank you so much!

The compression garments fortunately and unfortunately keep having to change in size. Thank you!

[50 Shades Of Blue]

17. WOW! What an achievement! Amazing and inspirational! Go get 'em!!!

[Backseat Driver]

18. Sending you good vibes because you have accomplished so much toward a worthy goal:

to be a more healthy patient by improved chronic disease lifestyle changes, but now by additional elective surgical means that insurance won't cover. I'm assuming they deem it cosmetic rather than functional. I'm glad you've found a support group and physician that can help document the medical necessity of the changes you seek. I once worked for a plastic and reconstructive surgeon, so I can relate to this dilema. Good luck to you completing this journey to more fully obtain and recover your pain-free, active body contours. Awesome job becoming a healthy candidate!

[1WorldHope]

19. Incredible! What a journey you have been on. You are a beautiful

person and a determined fighter. Don't give up! I'll pitch in.

[BlueLucy]

20. Thank you so very much.

I am a fighter!

[BlueLucy]

21. Bump for visibility. nt

[William769]

22. Good!

[BlueLucy]

25. Thank you so very much.

[NowISeetheLight]

23. Great Work

I'm happy for you. Insurance denying surgery for something like that is just cruel.

[BlueLucy]

24. Thank you so very much.

[BlueLucy]

26. Bump for visibility. nt

[BlueLucy]

27. Bump for visibility. nt

[leftyladyfrommo]

28. People like you are my heroes. I have friends with

Serious autoimmune diseases and they are absolutely amazing.

[BlueLucy]

29. Thank you so very much.

Autoimmune disease very much triggers lipedema.

I started my weightloss journey weighing 357 pounds. How did I get to that weight? As far back as I can remember is puberty.. I started getting this pair shape.. saddle bags, that I could do nothing about but I weighed about 150 at 5 ft 6 inch. I had 3 children and weighed about 220 pounds with my last with all the weight in my legs and hips. During this time I started complaining about leg pain, thinking I had leg cramps, jimmy legs, and deep pain in my hips that would wake me up at night. In 2012 I was diagnosed with a rare lung disease called Pulmonary Langerhans cell histiocytosis. It's an autoimmune disease, a blood disorder, a type of cancer. I had it in my lungs and on my scalp. I'm in remission but I am convinced that the inflammation of that disease coupled with menopause caused my lipedema to explode. I gained over a hundred pounds during this time putting me at 357 pounds. I'm in incredible pain, my arms, legs, thighs, hips, neck and back. I'm doing a lot of complaining and that is when I was diagnosed with fibromyalgia wrongly I now know. I was given different types of non opiate pain meds for fibromyalgia pain that never worked and doctors always suggested I just want pills.. A fucking nightmare that lasted a decade!

I was pretty sick with PLCH for several years but I quit smoking and had an aggressive treatment so I am in remission now.

[leftyladyfrommo]

30. Wow! What an incredible journey. nt

[BlueLucy]

31. Bump for visibility. nt

[nolabear]

33. We've talked about this before. DM me if you want to share details.

Stunning how little understanding there is, eh? We can eat next to nothing and it’s slooooooow if at all.

CoverLipedema is great but the paperwork is incredible!

[BlueLucy]

34. Bump for visibility. nt