A Swell(ing) Journey Part XI: The Frustration Chronicles

11 10 2008

Eight months.  I’ve been lugging around an extra 30 to 35 pounds of seemingly unexplainable fluid in the lower half of my body for eight months.  It’s kind of like babysitting someone’s three-year-old for 8 months, 24 hours per day:  I’m ready for his parents to come home and relieve me of the weight.

So, here’s the update.  For the past 5 weeks, I’ve been attending daily physical therapy.  They were wrapping the swollen areas up like a mummy, and the wraps remained on until I returned the next day.  They would unwrap, let me go wash up and then re-wrap it a bit more tightly.  The negative side of this is that it’s a bit uncomfortable and makes something we generaly take for granted, showering, impossible except on Sundays when I got to be wrap-free.  Let me just say, giving yourself a sponge bath is not really all that easy or fun.  The positive side of this is that it means I have everything I need to dress as a mummy this Halloween.

So, is it working?  Unfortunately, no.  It was kind of squishing down my legs and making them look better, but the fluid wasn’t leaving my body, it was just moving to the unwrapped areas.  In fact, we decided this week to stop doing it.  The doctors are still perplexed.  The physical therapist is perplexed.  Even my own three-year-old is talking about “The Swelling.”

Next, we are trying a new drug to go along with the lasix and some massage therapy at the physical therapy shop.  The past two days have been a bit better, but nothing has happened that allows me to get on here and say, “We’ve found the answer!”  I’m waiting to hear back from the specialists in St. Louis as to what I am to try next.  My doctors continue to tell me this should NOT be permanent.  Basically, all of the unfixable conditions that might cause this have been ruled out through various tests.  I do not have lympedema or cancer or a heart condition or a liver condition or any problem on chest x-rays.  Numerous scans have shown no blockages or blood clots.  Whatever I do have remains a mystery.  It’s still possible this was a strange reaction to a medication, but I’ve now been off of Rapamune (see previous entries on this subject) for 6 full months.  The doctor I see who felt strongly about this being the cause is now beginning to doubt it.

I’ll keep you posted, and I appreciate all your kind words and prayers.

p.s. Would the rightful owners of a 30 pound fluid monster please claim it?  I don’t really want to take care of it any longer.




15 responses

11 10 2008

I’ll keep you in my thoughts. I’m sorry they are having such a difficult time pinpointing what the problem is. I’m sure it’s very frustrating for you (and your medical staff, too).

I have an extra 35 pounts as well but that’s all MY fault…and the pizza. 😉

11 10 2008

F–k! This blows.

That was classy, wasn’t it? I think that, at this point, you have become a mystery worthy of the attention of the wider medical community. Are there any specialists in the US or anywhere else you might attempt to contact? If your doctors are unable to help you, shouldn’t you consider getting the answers from others?

Massage therapy is always good to take 😉

35 extra pounds worth of pizza, that’s a lot of pizzas!

11 10 2008

Well, crap. You really are trying to horn in on my territory, with your own WTF Disease, aren’t you? *sigh* I know it is not a club to which anyone wants to belong. Overheard this past week, and now high on my list of favorite expressions, “Pray like hell.” I continue to do that for you.

13 10 2008

Thank you for updating. Been checking periodically and wringing my internet hands over the silence.

I can’t think of anything more frustrating than not being able to figure what is wrong. Here’s hoping one of the doctors gets an AHA moment very soon.

13 10 2008

Keep your chin up, Matt. I can’t imagine your frustration but I have a good feeling this will all be an odd memory in the near future.

14 10 2008

Surely I have a caped crusader outfit here somewhere, since I feel the desire to begin doing my own medical search — because, you know, I have no medical degree and no real knowledge of anything:)

But seriously, the wrap thing? Not so good. If the next idea doesn’t at least sound scientific, maybe a drive to Mayo Clinic? If they suggest leaches, the answer is NO! We might as well go back to when you thought it might be worms. Did they ever . . . never mind.

Yes, I am a smart ass, but an aggressive problem-solving smart ass who’s totally ready to call someone and yell at them for you! “WTF? THIS VIP/MAN HAS A BLOG TO WRITE!” (I know, I keep hearing that thing about honey versus vinegar but my diabetes prohibits me from going anywhere near honey, & the lack of sweet treats makes me edgy.)

But I think about you & wonder how you’re doing every single day when I go on WordPress! Does that count for much? I hope so! Cause all those other people out there with weird stuff, I don’t think about them at all:) You’ve got the whole slot wrapped up.

14 10 2008
Taoist Biker

Geez, this is unbelievable!

(My extra 35 pounds are burgers and ice cream.)

14 10 2008

Fluid-monsters are pretty unwelcome as far as monsters go, so I’m sorry you haven’t been able to conquer this thing yet!! I am however glad to hear that they’ve ruled out all the super-serious things, and I also hope this means that they’re closer to unravelling the mystery that’s so heavily cloaked in mummy wraps right now! (…see what I did just there? lol…*sending good thoughts!* 🙂 )

15 10 2008

Hello again, my petit Michelin, I was describing your monster to someone when Teeni the blogger mentioned Celiac Disease as being a possibility that might explain the swelling. That’s allergy to gluten. I told her I would relay the message to you. 😉

17 10 2008

Have you considered a voodoo hex could be the culprit? Like something out of “Thinner” except, the opposite?

Have you ticked off any suspicious-looking Jamaicans lately?

18 10 2008

Damn. Nothing sucks worse than subjecting yourself to an uncomfortable treatment only to find out that it’s not working.

…Well, nothing except having the mysterious condition to begin with.

19 10 2008

That has to be uncomfortable… Hope it goes away soon or a simple explaination and fix is found…. wishing you the best.

21 10 2008

Maybe you should check the Celiac connection listed above…and enjoy the massages in the mean time! Good luck with all of it!

23 10 2008

Hi everyone. Thanks again for the well wishes. To address of few of the questions/comments. I have been to doctors (including specialists) in 3 states now, but I have not been the Mayo Clinic. Who knows, that may be in my future. I’m assuming the Celiac thing has been ruled out. I read about it and the symptoms, and I don’t really have those symptoms for the most part. However, the doctors have frequently asked about the other symptoms and have done numerous blood tests while considering many possible causes. Based on what they have asked me, I think they already considered that one. However, when I return to the doctor next week, I will bring it up. Thanks again, I appreciate your thoughts.

23 10 2008

Man, and I complain about retaining water once a month! No longer.

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