Thursday, January 8, 2009

Why I Haven't Been Blogging

Just updates here.

It turns out that people with disabilities can have gallbladder problems too. No surprise to us, but to some doctors... I'll be having my gallbladder out next Thursday and a liver biopsy at the same time. So my abdominal pain is about to end. Tell me, why is it women (the urgent care doc and the surgeon) listen and do the right tests and a lot of men (internist and ER doc) just think we are just inventing issues?

I ended up at the urgent care clinic on December 19 with continuing abdominal pain and fever, was able to get a HIDA scan on Christmas Eve, then have had the usual delays in getting results and appointments because of the holidays. The urgent care doctor was excellent--very sharp--and I wish did primary care. One piece of not so good news is that she thinks primary biliary cirrhosis, an autoimmune disorder, is a possibility for me, and she said that's serious and not really treatable (not quite true). She impressed on me the need to see a GI specialist, but the earliest appointment was a month out from that day, with any biopsy to be done later. With the gallbladder issues concurrent, the surgeon can take care of the biopsy so I don't have to do it separately and much later (that appointment will be moved back because of surgery recovery). The rheumatologist knows about all this (he had been urging me to see a liver or GI specialist) and has ordered the antimitochondrial antibodies test.

The cardiologist agreed that my blood pressure issue is not from a general cardiac problem but rather from gallbladder or from the steroid injections the week before. It measured low in his office (vindicated). We can try something to bring it up if we need, but neither of us wants to add anything new to the mix. A small amount of atenolol's still necessary for the heart rate.

I haven't really wanted to deal with discussing the liver issue so have just kind of shut down for a bit in terms of blogging and talking to others. Although this could account for all the other autoimmune issues I've been having as well, I remain hopeful that removing the gallbladder will drop my liver enzymes to normal and that maybe everything else is fine or an anomaly. I have gone off all drugs that metabolize through liver except 1 to 1 1/2 doses of hydrocodone a day (at 10/325, that's about one tylenol for the liver) and have gone back to half an atenolol most of the time. I even went off Zyrtec-D, which in the past I would have fought tooth and claw for if I were in some survivor-like apocalyptic situation. I'd still like it, liver counts are high. In an unfriendly way. And Nexium and arthritis drugs. Frankly, I'm feeling a little desperate when I consider lack of pain control options for the long term. As long as things don't get worse and I can take something, use the scooter, and get adequate help, I can do okay.

I also had a rhizotomy on December 23, which the pain management doctor agreed to do in an attempt to reduce my pain and my need for pain medicines, given the liver problem. It doesn't have a high success rate, but he gave it a try. I apparently had more L5 pain than I thought, but the SI joints still hurt a lot sometimes.

My dad was in the hospital with heart problems and a close call but is now home and doing better than before. I was getting concerned--he didn't look good and was having problems that would send most people to urgent care or something rather than waiting it out for a few weeks until a regular doctor's appointment--and an immediate admit to the hospital.

I have been able to enjoy a lot of time with the kids and extended family during the holidays and wish everyone were home again more.

I talked to my counselor about applying for disability (rather she suggested it). I just don't want to admit that I can't work. That I can't work today is fine, that I can't work next month or the next or the next is difficult. I know I can go back off disability but it's a big mental step to take, even though we need the extra income. We also had to talk about some of my doctors, because I can feel upset about the experience of dealing with some of them.

Three doctors' appointments next week, then surgery. Surely I can ride this through the next few weeks and feel better after that. It will be pleasant once I don't feel so queasy every night.


yanub said...

I was in fact wondering how you were, so I'm glad for the update. I don't know what it is with doctors not listening. My experience hasn't led me to favor either gender; I think they go through strict training on being dismissive, but it often seems urgent care doctors do a better job of hearing us out than our regular doctors. It's almost like they have learned they have to pay close attention or something.

In any case, I hope that this particular turn of events marks improved health for you.

FridaWrites said...

I've been very pleased with this particular clinic when we've had to take the kids for weekend strep throats and na immediate pre-vacation illness. She clued in to the other three autoimmune issues and thought, oh, high liver counts, better make sure that's not autoimmune.

The new rheumatologist, who's male, is also really good at paying close attention to detail and at listening.

FridaWrites said...

Honestly, I just didn't want to say anything to people before or during the holidays, about the liver, especially to family and close friends (some read this blog). It took me a few days to tell my husband and sister even. Family did know about the gallbladder though.

D Phoenix said...

I've been wondering about you as well. You've been through a lot in the past month or so. I really hope that the gallbladder removal with help stabilize things a bit for you. Did the rhizotomy help at all? I'm just kind of stunned at how much you're having to weigh and balance. I assume you've not kept anything from your partner, right? You've got him on your side helping with decisions?

I'm sorry you've had to give up some of your pain medication. That must be really hard. I suppose pacing yourself is going to be really important right now. Maybe that new scooter will help a bit.

I had to deal with the physiological challenge of going on disability. It is tough, but it is also a way of embracing the reality of your body. It can also be a good safety net for you: you can be on it while you can't work at all; you can have it as a safety net if you are able to go to work and then things flare up and you need back off for a bit. I'm not dismissing the hard stuff emotionally, but it can be a real relief to make this step.

Fibromyalgia and the Tiger Within blogs about her decision to stop work:

Mostly, though, I wish you well for your surgery and I hope it goes very smoothly. If you want to email me, I'm here. Take care, you.

Anonymous said...

Good luck and I hope everything is better after the jump. XO

FridaWrites said...

Hey, both of you!

Donimo!--how are *you*? The rhizotomy was a partial success--I had more L5 pain than I realized. Still having some bitchy SI joint pain, but it was well worth the try. And yeah, my spouse has been dragged into all the decision making and is giving a lot of support. We're on the same page with everything and see my illness/disability the same way, which is good since we see so much else differently. I probably should research more on the disability claims soon-it would help.

Hi, Snoops--you're on the family email list again and can post something on your blog if you like after.

D Phoenix said...

I have a tonne of L5 and SI pain, so I'll be interested in your progress with the rhizo. I had never heard of this procedure. Does it make things feel numb, though?

Me, I'm hanging in there. Our house is still chaotic and our office is too toxic to be in because of new wool carpet. We spent a bunch of money to upgrade to wool and thought it would be all natural... nope: it's treated with moth-proofing. F'ing hell. We're still waiting for contractors to finish up the house and I'll have to deal with fresh paint this week. I had really thought I could avoid the toxic stuff: they were supposed to have this finished while we were in the hotel. So, I'm stressed with this going on and on. My abdominal pain is quite bad lately and maybe that's stress or maybe it's just a coincidence. Dunno. I'd just like some stability. Thanks for asking :)

So, I'm not online a lot due to the toxic computer space. I'm not blogging right now and not reading so much, but I will check in to see how you're doing.

FridaWrites said...

No, I don't feel numb at all--I just feel pain free with L5. And reduced pain in the SI joints--about 30%. It's a little difficult to tell how well that worked since I've been more inactive because of the gallbladder pain. So we'll see. :) I can still get some bitchin' pain sometimes, but I feel that I can concentrate a lot more.

Ooh, mothballs, that's terrible stuff. I'm sorry all the contracting has dragged on so long--that flood was a doozy to say the least. We desperately need to replace our carpet but I don't know to what. Not wool, apparently. We've gone much more environmental with cleaners, laundry detergents, etc.

Good to hear from you! I've been wondering if you've been hanging in there too.