I must have stared at this page for 20 minutes trying to formulate how to put into words what I'm feeling. Trying to make sense of how I went into a vein doctor's appointment for what was supposed to be a routine ultrasound with an expected diagnosis and came out with not just that but a 'bonus.' I should start by saying it's not the big C. I guess I'll give you background on why I went to the leg doc in the first place. When I was a kid, my dad's mom was always pale as could be and had horrible spider veins. She wasn't heavy or anything but she was a nurse so long shifts on her feet. I always hoped I wouldn't suffer the same fate but I knew the vascular system was probably at least pre-disposed. Mom gained weight after having me but couldn't seem to lose it. She had many tests done but no cause could be found that they were willing to treat. After that, she developed lymphedema but was not diagnosed until it had gotten severe. Back when she was diagnosed, it was a relatively unheard of disease and certainly never talked about that I'd ever heard. People are just treated like "well, you're fat" and it's not until it morphs into something disfiguring that they bother to look any deeper. You know, when it's too late?
This disease essentially stole my mother from me. Yes, we were close but the things we could do together were limited because she got to the point it was incredibly hard to move. Those mother daughter shopping trips you may take for granted with your mom? Couldn't do them. The ones we could do were always having to make sure a place to sit was available and her disease was always a constant companion. As a tween, you're already self conscious enough but I knew Mom's condition brought even more when we were out together. It's not that I was embarrassed to be out there with her, but sometimes her condition brought stares and that just made me want to fight everyone because they weren't seeing her. They just saw a super morbidly obese woman and made their own assumptions about who she was and how she got to that weight. Even when she got weight loss surgery back in the late 90's, it did afford her about a 150 lb. weight loss however, the lymphedema made it so there was little difference in her 'tree trunk legs.' She had better mobility but still not great in the grand scheme of a normal life. She kept about half the weight off over the years but that effing disease was relentless. She had weeping legs at times which one doctor 20 years ago told her meant she could never have surgery for knee replacement because her skin would never heal because of the fluid. (The small bit of looking this up the past week shows that yes, risk of infection appears to be higher than someone without it however it was not necessarily impossible as her old doctor led her to believe which infuriates me. It depends on stage, the doctor, and the patients adherence to very strict post surgery instructions.) Their attempt at treatment back then was doctors showing how to wrap her legs in bandages which took two people at home to do as she wasn't able to bend as far as she needed on her own and as soon as any fluid relief was achieved, that went away within three hours of the bandages coming off. Family attempted to do it as often as they could but with no real relief, it wasn't worth it to her to continue if nothing was going to help. There were leg pump sleeves but they were $9k and not covered by insurance then despite very obvious need. I watched this chronic, incurable disease chip at her until she passed. The searing hatred I had for it and what it essentially took from both of us, her- her mobility and to some degree quality of life despite finding a way to still live a very fulfilling life socially and me- the simple pleasure of mother daughter activities most people take for granted.
So when the vein doctor I went to said (without knowing my family history) "you also have lymphedema", I lost my shit. Yes, I knew I had one leg a little larger than the other for many years but the fact that I have a discernable leg shape, in my head, told me that it was just a possibility but all of these years of exercise likely kept it at bay. Apparently not. All I could hear was how my life was about to change. After the vein surgery, she wants me to start physical therapy to get and learn how to do lymphatic massage. She said she was going to order a leg pump (supposedly covered by insurance- it'd better be because I'm not paying thousands of dollars for this thing) and I would need to do it an hour a day. (We'll see. Some stuff I'm reading in my research tells me that is overkill for the stage I assume I am and could actually cause new problems.) I would need to wear those hot, horrid compression socks I've used on and off over the years every day to keep it from progressing. It was like having dodgeballs lobbed at your face as you sob. I told the Mr I was finally being punished for everything I've done to my body. She said there's a genetic disposition which plays a part but she was hopeful. This was 'not your mother's disease' and how she does lectures all the time to PCP's to show the before and after of the treatment which shocks all of them because they keep doling out the same lazy advice my mom was given decades ago. Advice that she clung to thinking she had no other options and assumed that insurance's stance on treatment hadn't changed in that time. Then I was just friggin' angry that none of her two doctors over the past 20 years bothered to say "hey, let's revisit this to see if there are any new options for you." Knowing what I know now about the vein insufficiency, ablation could've likely helped her. I can already hear her saying "I can't with the fluid in my legs" but the needle is no bigger than the cortisone shots she got on occasion for her knees. I stopped telling her about the new advances we would hear about including this Kevlar injection the Mr read great things on about 10 years ago for her bone on bone knees because there was just always a reason why it wouldn't work. I should've pushed harder.
Anyway.
We went home and I sat there spaced out and bawling intermittently. The time constraints already on the coming weeks, the incessant reminders popping up in my email of the things I already can't keep up with in attempts to lose weight, heal my feet, attempt to get out of mental ruts, etc and the thought of saying I need another 90 minutes a day (according to the vein doctor) to hook up to a machine and massage myself was too much for my brain to process. Of course, more weight loss was recommended and said it can only help. No shit, Sherlock. I haven't exactly sat on my ass since the end of January and the results have been minimal. I feel like my entire life is about maintaining this old hooptie of a body held together by duct tape, caulk and rust. The mental toll this has taken given my deep personal hatred of what this disease did to Mom and now, potentially me, is nothing less than leveling. Again.
The more time I have to sit with it and knowing how easy it was for me to get a supposedly free pump ticked me off given Mom didn't have that available to her. Thinking of how her veins were likely blown as well and how easy this process is now to fix vein insufficiency compared to 22 years ago the first time the Mr had it done and it was a hospital procedure complete with twilight meds and Frankenhose that cost $400. Now it's an outpatient procedure done in less than 30 minutes with nothing bigger than a needle hole which she could've easily tolerated. I'm more angry about her not being given the same opportunities I am. It's like when some new breakthrough hits the market after your loved one who passed could've benefitted from it. So there is also some, I don't know, survivor's guilt that this will be easy for me to manage in comparison.
All I can say is thank God for the Mr. I don't know how I would even be standing after this between Mom's passing, and now my chronic health problems. Gosh, remember when I just wanted to lose weight to be like, thin and shit? 🙄 I'd like those days back please.
I don't need LE advice from anyone who has it right now, please. I'm not there. This diagnosis is more mental than anything else because of the lifelong torment that dogged Mom and secondarily, me. Nothing really changes for me except adhering to getting in more movement but I can't put into words what it's done to my headspace. I need a friggin' break from everything. I feel like I'm not being given time to heal from anything before the next thing comes busting down the door. Are we actually in purgatory? Because it's kind of feeling like that the past few years. I've done some research. I'm putting some shockwave into the mix as I've seen a few studies about the positive effects it can have. I will get into the right mindset about it but that isn't right now. Right now I just need to process and regroup.
Thanks for listening.
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