First before I get into this, a caveat: I do not like using my cerebral palsy is an excuse for being the way that I am . Because obviously there are plenty of weight normal people with cerebral palsy and plenty of weight and normal people in wheelchairs. On to the main topic.
I have been trying to figure out how to wrangle an inconsistency in discussing Lymphedema. It appears that if you are overweight, and you have some other factor in your medical past like radiation from cancer or an unknown as of yet predisposition to it, you are more likely to get Lymphedema. Therefore it seems to me that when someone begins to become overweight there are always discussions about high blood pressure, diabetes, cholesterol joint difficulties asthma, strokes and heart disease. You are told about them all the way along; you are warned that if you don’t get your act together these things could happen. Why isn’t Lymphedema part of those discussions in everyone’s wellness visit who shows signs of getting obese or is already there?
It is a down the road condition that affects more and more people. Those supporting and advocating for the Lymphedema Treatment Act say that it has many many more people living with Lymphedema then even are known. Of course there’s conflicting information some sources list it as a rare disease some sources list a really large number of folks with Lymphedema. Regardless I I want it talked about in every wellness visit of any person that might have it in their future just like diabetes just like high blood pressure just like strokes asthma or joint problems. It would take 2 additional seconds and it would least give us name to put your problem should it ever come up. And even if people hear it and don’t make changes it would be caught sooner if people knew what it was. I I had swollen legs for years and thought it was merely my bad eating choices and nothing else that were causing my legs to swell, so I never discussed it with my current doctors and they never mentioned it.,
For reasons that are endlessly debatable in my family and my circle of friends, ranging from no willpower coming to a diagnosis of insulin resistance, to addiction, I have not been able to get my act together. I am very overweight. The doctors all give me the simple one line answer that I have Lymphedema because I am fat. One even debated with me vigorously that it could have absolutely nothing to do with the fact that I had Hodgkins lymphoma a cancer of the lymph nodes back in the nineties. If I did not have radiation for the cancer that cancer in my lymph nodes could have had no effect on the processing of lymphatic fluid through the system 20 years later. Snark. They also have done one other thing. I’m ready to take mine, as far as heart disease, stroke, high blood pressure, and asthma, along with joint problems because I was told to expect them. Oh and type 2 diabetes if it ever shows up. I will then say to myself in my head,” well Flynn, what the heck did you expect given your eating habits of the last 40 years.?” Here’s the problem. I was never told about Lymphedema until 2012. I did not know what to expect. I did not know that once I got the Lymphedema losing weight became even more of a Sisyphean task pushing that boulder up a hill because the fluid retention makes you gain weight irrespective of what you eat and if you eat badly because of course you’re upset at your situation, it only gets worse. I would have liked to have known this was coming so then when it did I could say well what did you expect shrug and then move on and do what I could. I was not warned that this could happen to me simply because I was heavy.
The more information we have as patients the better outcomes we will have. It’s not our fault that Lymphedema is only discussed for 15 minutes during an 8 year long medical school career. It’s time to take it out of the disease closet dust it off and start talking about it.
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So for the uninitiated, before lymph-edema showed up, I already had cerebral palsy asthma, obesity and a few other prizes. Lymph-edema, when received…is not unchangeable. It can be slowed, it’s effects minimized…
But I’ve read about the endgame on other sites (that I’m not going to link to…)…
It’s important to say that the endgame could be a long way away for me, as long as 18 years away. So I don’t see this as ‘terminal’ in the usual sense. But ‘progressive and incurable’ is a true statement about lymphedema.
It involves increasing deformity of limbs…. also possibly back and neck…pushing on a track that feels to me away from being a woman and on toward the old, ugly designation of freak.
Yes, I know, no one in the disability community likes that language. *I* don’t. But it’s what I’m seeing and feeling, both physically and emotionally. This idea of increasingly obvious limb deformity over time is particularly bad timing for my emotional life as well.
I had been quite accepting of my singleton status [relieved, actually. Relationships are too damn much work.] until recently when I realized I’ve developed something of a small crush on a distant acquaintance I’ve only met once…that now has utterly no chance of ever being anything else. Dammit.
Possible skin breaches unless I am insanely vigilant about every red mark or pressure on skin.
Wide weight variation…sometimes *daily* as the lymphatic system labors to get the excess out of the system.
It’s going to interact with my existing asthma in such a way that eventually congestive heart failure is a possible end scenario.
I’m trying mild exercise and weight management as these do buy time and have critical positive effect.
I also use a pump, that is quite a symptom reducer, in partially mimicking what a fully functioning lymphatic system does, in moving the fluid out of the blocked areas of my legs, and into the better functioning areas of the body for processing. Compression bandages hold the pumps advantages for twenty-four hours or so.
I am also considering weight loss surgery, because weight loss is such a positive for lymphedema symptoms, but it’s my understanding that any surgical intervention for any reason runs the risk of further damage to lymphatic pathways both in the legs and elsewhere in the body. It’s up to me to determine how much risk I can tolerate.
What I’m really frightened of though is that I won’t be able to keep up !positive attitude necessary to get through any and all of that.
I compare myself to others with multiple serious impairment with some sort of end date on the horizon. And find myself wanting.
I just don’t think I can pull the ‘brave’ thing off, as regards this sh!t.
Ever since my time with lymphedema began, there have been some nagging uncertainties that recently got more nagging. There have also been some positive developments…rather geeky cool velcro leggings custom measured and able to be put on by anybody without any fainting couches, pearl clutching, frantic denials or suggestions of placing me in a skilled nursing facility.
The only problem with these leggings is that they are not inexpensive and not covered by Medicaid…
I have been uncharacteristically quiet about the following, done more research and gotten some quiet off the record answers that don’t make me happy in one sense…but give me some relief in the other sense because in any medical situation….I just want the effing facts. Right here, right now, right away. Not so I can deny them or act like I can change them, but so I can know how to work through them.
For the last six months because of fear of being sued, or really not knowing, no one has been able to tell me the effect of a rather uniquely unfortunate situation on how this is going to progress.
A lot of folk with lymphedema got it due to breast cancer…a cancer that tangetially got a hold of a lymph node and attacked it…and so ten or so years later the system is weakened, lymphatic fluid is blocked and lymphedema shows up.
When I had Hodgkin’s lymphoma, the last cat scan before chemo showed sixty (count em’ ) sixty nodes as being affected by the cancer. I don’t know what the chemo did to the nodes themselves…thankfully it knocked out the cancer.
When I got the lymphedema, it was explained to me that it is incurable. Treatment can manage it, limit the open skin or infection that can come with it.
If no other causes intervene though, the endgame is congestive heart failure. That’s not a maybe. I do not have congestive heart failure at this time.
So…I asked, um, what does that mean
“You could have two years…you could have twenty.”
Inside my head, I investigated the two colliding facts that seemed to be running around in it taking up a lot of space. One, my lymph notes were *already* beaten up twenty years ago. Not one or two, but many of them. Two, this is a clear signal that my lymphatic system is working poorly. The conclusion I’ve drawn, that I’ve shared with a few medical people, is that I’m unfortunately on the shorter end of that timeline. None of the ones actually responsible for my care will commit to a yes or no answer on this, for fear of being sued, or fear of being right or wrong….but there are some that became good friends during the very early going of this in rehab while I was still in the hospital.
Everyone who knows me knows that I have this unfortunate habit of standing on the last nerve of the worst case scenario…
but these friends of mine, (not anyone currently treating me for anything) when I gave them my “I’m probably on the shorter end of that timeline,” scenario, have looked me straight in the eye and said: “You’re smart.”
So, that’s annoying, this reshuffling about how is my life going to go…
And, there is a new paradigm about, if any of the current folk responsible for looking at my legs see any atypical swelling, anything that looks different fromwhat is ‘normal’ for them now. then it’s “call the doc right away, this could be an infection, go to see him or go to the er…”
Don’t be doing anything *important* because you might have to drop everything if there’s a two centimeter change in the size of your legs…then it’s all earnest medical testing and sudden alteration of whatever you might have planned.
I’m trying to normalize my relationship with food (and eliminate as much salt as is humanly possible) and there are many days I am not sucessful, in part because I’m so completely freaked out about this.
But, unusually for me (*very* unsually) I don’t like talking about this out in the world.
Because it wastes any good times I have during the day.
Obviously that’s time that cannot afford to be wasted.
This is why I need everyone in my life, as I have asked before….to please handle their own freaking *lives* and let me manage this in relative peace, so that when you visit or call I can (at least mentally) mostly be the person you remember, not let the Scary Lymphedema Stuff out of it’s prescribed area of my life, and we can have a good time.
I’m not going to whine too much.
But…lets say it was unlikely that you’d either a. be involved in any travel…or b. pursue a relationship.
Say 10% or 20% likely…even before the lymphedema set in.
I’m just saying it’s surprisingly difficult to see those reset at absolute zero.
Even if I win the lottery or something…no plane to Ireland or Rome or worse yet no plane back to Paris…
And vis a vis relationships..One person I’ve had a small torch for for a long time, but it’s been quite manageable. They’re my friend and I’m glad it’s set at that level, but… It’s still difficult to shut it down entirely.
The second person never knew, and still doesn’t, that he was ever even on my radar…so it won’t be as tough…I’m a tad bit wistful… I only met them once, and thought that if we ever met again…perhaps.
I’m handling it, to a point.
I’m just saying I’m surprised at how difficult it is to put things entirely aside.
But I recognize that as we get older, *everyone* able or not, has to do this to a degree.
In addition to my cerebral Palsy, Asthma, Carpal Tunnel, Depression…Theres this new thing, lymphadema I don’t know. But I’ve received confirmation from a medical source I trust that my case of lymphedema has a bit of a different twist than others.
It’s an illness common to cancer survivors…breast cancer patients are the most common recipients of this sort of consolation prize.
But in my case, my original cancer was cancer of the lymph nodes. Because my lymphatic system was weakened in the first place, it makes the lymphedema more dangerous to me in particular.
While the cancer has not returned, per a medical professional I trust, this is a sign that the whole lymphatic system is weakening. Lymphadema is not curable, and will not go away.
With the agressive therapy, I can hold the line on this for a time, against progression to congestive heart failure. My heart is in good shape at this time.
(One really annoying thing about the therapy. ) in addition to all the time working physically I *have* to lie in bed and keep my legs up for at least two hours during the day. *That’s* not going to help any weight loss goal 😦
One thing the docs don’t know is how much or how little time it can be held off. Could be twenty or thirty years. Could be six months.
One thing the docs do know: Barring some other intervening illness or injury…eventually my lymphatic system will shut down, and that…will be my endgame.
So, betwixtandbetween. Not directly terminal…but it feels pretty odd to have a likely ending scenario mapped out already.
But dumber still. Someone said I ought to be pissed at my oncologist.
WTF? The guy gave me *twenty years* and however many more i’ve got!
I’m not going to ‘get mad’ at him.
Sure, 85 % of me is peeved at The Universe for handing me this.
(14% shrugs like a Frenchman and says c’est la vie. The remaining 1% says it’s been a damn long wait to see my husband, and if that’s how it’s going to roll, well then that’s it.)
And it’s so darn nebulous, I forget about it sometimes. When I do think of it I don’t know how to feel about it from day to day.