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Thread: Gallbladder problems

  1. #11
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    I think pred causes gallstones, but I'm not sure...

    I'm just so worn down. I had to walk through 50 ft of knee-deep snow (with bare legs) this morning to get to my car. It was cold, of course, but also exhausting. I don't know how I made it through the day. I drove myself and just gritted my teeth to get through the day. I've been feeling really worn out the past 2-3 weeks, no matter how much I rest. The stomach bug this week put me over the edge.

    I saw my therapist (whew) and my hematologist. The hematologist always runs really late. I expect it now, but it's still exhausting. I waited 2.5 hrs. It was a tough visit, because when I'm this worn out I feel emotionally spent, too. I expressed my frustration that my day-to-day function isn't really improving unless I compare by years. He said my test results are looking better so that shows I'm doing better. I wanted to whallop him with those results. Blood tests don't measure fatigue or even pain. They don't show that going grocery shopping one day means the next I'm completely worn out, unable to do anything at all. They don't measure not being able to work or the subsequent fallout.

    He pointed out various signs/symptoms that have improved since the rtx in October-- no Wegs rashes, no bleeding lungs, etc... But many of the things we listed come right back if I lower the pred by 1/2 mg pred!

    He said it takes years to recover and I should be patient. I don't want anyone telling me to be patient anymore. It's been 5 yrs since onset and almost 4 yrs since diagnosis. I've been plenty patient. Feeling lousy every single day for 5 yrs is not easy. He said it could be another year to get back on my feet. I told him not to repeat that, thank you very much. I just can't hear it.

    My next appt with my Wegs doc is Mar 31 and we'd probably do a 2nd round of ritux in April. We both agreed that was too long to wait, so he emailed him to suggest that we do a round of rtx much sooner, and maybe do it every 3-4 months instead of every 6. That's not the typical Wegs protocol, so I have no idea if my doc will go for it.

    I really like this doc but today I left in tears. I felt totally unvalidated and unheard. I had a 2hr drive to do and I pretty much fell into the house.

  2. #12
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    Sorry to hear that Sangye. I think the most I felt real lousy was about a year, but not four years. I give you a lot of credit and "WOW". The stamina that you have is incredible even though it takes another day to recover. I think everyone here on this forum would agree with me, " Your amazing person!"
    I think your doctor was trying to scientifically stating that you weren't getting any worse by showing you lab values and such.
    Sangye, I feel the same way with most of my doctors, "Unvalidated and unheard!" Except for the Wegeners Specialist and my local Rheumy is pretty cool
    You will get better. Really, you will. You are in my prayers every day! I also pray for the other people on this forum.

  3. #13
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    Thank you, Elephant. I really appreciate your kindness.

    It was frustrating, because he couldn't see that we were comparing apples and oranges. He was comparing current signs/symptoms with pre-flare and saying they were better. But pre-flare I wasn't dependent on pred, which is definitely masking a lot of stuff. And pre-flare I didn't have nose involvement.

    We did both agree that the Wegs has never been anywhere near remission, and that the constant smoldering is like a hot coal that has consumed so much of my energy (and tissue).

    This doc isn't a Wegs specialist, so I'm not gonna let myself get more upset at what he said. He likes to be very involved in all aspects of his patients' care, even though he's "only" my hematologist to manage the blood clot issue. I like that about him and he does help me out when another doc in his shoes would just tell me to call my PCP or someone else.

  4. #14
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    Sangye - I really feel for you and want you to know that I have thought about you everyday in the short time that I have "known" you. Your situation must be incredibly frustrating and I can't imagine what it would feel like to hear that you may be looking at a long period of time before you get well. It is pretty amazing that you could even get out and do all of that stuff -- are all of your doctors at JHU? Do they always make their patients wait so long (I understand its a specialty and "worth it" but still).

  5. #15
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    I get myself to JHU (driving, in/out of campus shuttles, etc...) out of sheer will. I've always had a strong inner constitution, even when my physical constitution is on leave.

    All my docs except PCP and dermatologist are at JHU. The waiting times depend on the docs. My Wegs doc runs right on time. Ironically, I wouldn't mind waiting long for him. It's the most comfortable waiting room--small and cozy, just for the Vasculitis center. All the patients are immune-compromised so I don't have to hyper-protect myself. If I were in there longer maybe I could also talk to another Weggie. They also have a computer for patients' use and I can hang out on the internet.

    At this point I know which docs run really late and can prepare for it. It's still exhausting, but it isn't stressful.

  6. #16
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    Sick and tired of being sick and tired; impatient with being patient ~ I know that feeling, Sangye, but it has more to do with the aftermath of the shingles two+ years ago. Postherpetic neuralgia. More patience to us, though I know saying it won't bring it on!

  7. #17
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    Ah Sangye, I'm so sorry to hear you are having such a hard time. You have been so helpful to us all when we have a problem, I just wish I could help you in some way.
    I hear your pain and frustration. This winter hasn't been easy on any of us in the east(US) either. I've shoveled more snow this year then I ever did when I was healthy.
    If I make it to April without a flare, I will have gone a year without but my Doc wouldn't let me go any lower then 7.5 on my pred. Previously I had went to 5mg. but also was under more stress.
    So it is hard to figure out.
    I've recently been doing the WI Fit. I try to do at least 30 min. at least 3 times a week. I'm not losing any weight but I've noticed I am getting stronger in areas that I lost such as balance. It also helps to relieve stress for me. I hope I'm not hurting myself by trying to keep active. I hope my body will warn me if I am doing too much.

  8. #18
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    You guys help me a lot. Just being able to express my frustration to people who understand it is worth tons. I appreciate every one of you.

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    Elephant, how are you feeling these days? What's going on with your gallbladder?

  10. #20
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    I'm so sorry to hear that! I hope the antibiotic works quickly to clear it up. Please try to get a lot of rest if you can.

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