Long Health Update. If you aren't interested, feel free to move along. So, my weight has been a battle for me my whole life, right now even more so because I have 3 hernias that have now merged into a single huge one. Literally my main tendon that runs down the middle of my belly is torn apart. Why don't I get this fixed you ask? Simple, I've been to 2 different surgeons and neither of them will touch me until my BMI is under 35. Meaning I have to lose 125 lbs before they are even willing to touch me. One thing I've been trying to determine for years is if I have lipedema and/or Dercum's disease. I want to know this for several reasons: 1. How will these diseases impact my ability to lose weight successfully? 2. Do we need to make changes to what I'm doing now to increase the liklihood of success? 3. Am I doing things now that are hindering my success because they are exacerbating theses diseases? 4. How do these impact my mobility and what can we do to improve what I'm doing to get me more mobile? All in all I think these are relevant questions, and I'm sure there are even more I haven't considered. So I've now been to 3, yes 3, different doctors at UT Southwestern, which is the major teaching hospital in Dallas/Ft. Worth. A surgeon, a lipid specialist and a plastic surgeon. All 3 have been nothing but disappointment for me. On a good note, I did finally get a diagnosis of lipedema, likely I'm in stage 2 or 3 (they aren't sure which). But the only thing they said they could do was liposuction and they would only do that after I'd gotten my BMI under 35. Oh and their only recommendation to get me down to that BMI is bariatric surgery. I refuse to do bariatric surgery because frankly I don't think it has a proven track record. I know people who have had it and it's been very successful. I also know people who have had it and either died from complications, or had it and it was a complete failure. They lost no weight at all from it. When I went to the plastic surgeon last Friday and told him I am looking to determine if I have these two diseases, he immediately stated "I don't even know what Dercum's is". He was at lease familiar with lipedema. I had in my hand the diagnostic criteria for Dercum's from the National Organization for Rare Diseases (NORD) website. He didn't ask to see it, and frankly with all my medical trauma I completely blanked on offering it to him. I meet 80% of the diagnostic criteria for Dercum's and 56% of the criteria for lipedema. He then proceeded to look me over, having NO CLUE what the criteria were for Dercum's and tell me "I don't think you have it." And people wonder why I have medical trauma? Is it really that difficult to say "I don't know what that disease is and can't give you a proper diagnosis for it. Let me find you someone who can." instead of what he did? And what's even more stupifying is these doctors are at a TEACHING HOSPITAL!!! They are the ones teaching the next generation of doctors! So, the good news is I have 1 diagnosis, but no real plan for how to successfully manage it, incorporate it into my current weight loss efforts, nada. I'm literally back to square 1 with the Dercum's, and no clue where to start looking to find someone with any kind of knowledge to be able to properly diagnose it. So yeah, I have a LOT of big feels around this whole situation. I am really glad I'm working with Dr. Tro's team. Both Alice and Dr. Laura reached out to me, validated my feelings, want to research it more and try to help me with what they do know, and educate themselves about these diseases to incorporate it into our treatment plan. Thank you both so much for that. For being in my corner and for checking in and just letting me vent. That alone has been a huge help. So yeah, not doing my best. Feeling alot of big feels. If you have a normally working body, please keep in mind what a privilege that is. Especially when you interact with someone who isn't that lucky.

Posted by tralbert1771 at 2023-06-26 19:31:41 UTC