In the last week, I’ve spent nearly forty hours waiting in doctor’s offices, surgery waiting rooms, and emergency rooms.
My mom saw the surgeon last week, was quickly scheduled to have her parathyroids removed, and Friday she had the surgery. After a rough weekend of recovery, we were back in the Emergency Room yesterday, expecting to find that she’d had an unexpected plunge in her calcium levels (which is common after parathyroid removal).
Unfortunately, the opposite was true. Her calcium had risen to dangerous levels, again. Which means, unfortunately, the parathryoid is not the fucking cause of her hypercalcemia.
Fucking hell. Back to square one.
My poor mom. She’s fighting to keep teaching; she made it to class today after seeing the surgeon (I was driving, obviously). We see the endocrinologist on Monday; we’re going to fight to get her a medication that the surgeon suggested. They are also suggesting a specialist in New York.
We are both immensely frustrated.
I have not been the most patient daughter. I’ve argued with my mom about her medications, I’ve resented the need to force her to eat and drink when her appetite wanes (the drinking is key to keeping the calcium down), I’m damned tired of not being able to do my work as I sit, once again, in a hospital or doctor’s waiting room.
It’s just that we thought it was over. We thought the surgery would fix her. And it hasn’t, and we still don’t know what’s happening, and I’m pissed off about it.
And then I get pissed off at myself for not being patient. For not being a gracious daughter. For snapping at Charlie and Tori because I’m so tired and so weary. Then I feel badly for feeling sorry for myself because of course my mom has it worse.
God willing, we can keep her calcium down. God willing, we’ll get to the bottom of this. God willing, I’ll find it in me to be more generous. I’m taking my friend Julia’s advice, and taking some time to put on my oxygen mask. Tomorrow I’m working at home, alone, while Charlie takes my mom to class. Well, I hope. We will have to see what tomorrow brings.
Meanwhile, prayers, please, that the doctors figure out what the fucking fuck is going on. Thanks.
{ 16 comments… read them below or add one }
Oh, good heavens, what next? So sorry this is going on. 50% of medicine is unknown etiology, but there are answers, do not give up. You have every right to be frustrated. Mom will be ok. Keep hanging in there.
I completely relate to your frustration…been living it for 5years. Just one foot in front of the other
I second Jo-Ann’s comment. My mother has been gone for a year now, but for MANY years before she passed, we faced the battles of mystery illness, forced eating and drinking, medication fiascos, etc. Of course, her problem was not the same as your mothers but please know that I can empathize with you completely; it can be so hard!
Ugh. This sucks. I hope they figure this out soon.
Yes, take time for yourself wherever you can through this process. You’ll need some down time to stay sane.
I’m so sorry. Sending you many good wishes.
Oh god, they took all glands out? Unbelievable, that the Calcium went up again and not dramatically down, what should be usual. Is it possible that your mom has Hypocalcemia but not Hypercalcemia!? That’s really confusing! I’m sorry for you both.
Does this help? http://thyroid.about.com/library/endocrine/blmultiple-endocrine-neoplasia2.htm
Oh dude, I feel ya. Not exactly the same, but upending my life trying to keep dad in his house like he wants is some kind of frustrating, and patience has never been my forte. I keep thinking that I decided this was the best course of action and he can’t help the situation or who he is so I have no right to be impatient about it…but hey, we’re human. And that’s gotta be disppointing, when you think you have it solved and are on your way back to “normal,” and then…not. hope you get answers soon.
So sorry, I hope you get answers soon. Hang in there!
It truly sucks! The constant trip to the doctor’s and specialists, the getting tests, the waiting and waiting and waiting. Surgeries that don’t give any answers, but still knock your loved one flat. And the fear and worry…constant fear and worry. I’ve been there with my son. And the worse thing is, he got better, but they don’t know why, and they still aren’t sure what he had(has?). I actually took photos of him sleeping because I was afraid he wasn’t going to live. I am constantly afraid of him having a relapse of whatever it is he was sick with.
I hope you get your answers. Where is the real Dr House when you need him/her ?
I so feel for you. Been there too. My dad had hypercalcemia, the docs thought for a long time that he had a stroke. Took them way too long to figure out he had lymphoma (hypercalcemia can be a symptom). If they haven’t checked that road out—have them do that. Better sooner than later. Hang in there, keep your mask on, and try to be kind to yourself.
Praying and have lit a candle for you both!
I’m sorry the surgery was not effective – another reminder that medicine is not an exact science. Yes, it is disappointing and frustrating. I hate the idea of undergoing surgery that ultimately wasn’t necessary. Don’t feel guilty. Just discovering the hypercalcemia was a breakthrough — you are way ahead of where you were several months ago.
Oh Cecily! I have been there and I totally feel your frustration and impatience. It is so hard to take care of our parents when we’re also trying to work and take care of kids.
I can say in retrospect, now that my mom has been dead for 3 1/2 years, I am comforted by the times I remember being there for her and haunted by the times I was short-tempered or impatient. God, if I could redo some of those moments again I would in a heartbeat! Just remember this too shall pass and live in the moment. Maybe that will help.
So sorry :( Hard to get your hopes up for things to finally start to normalize. I totally relate to the losing patience/guilt cycle. You are doing your best. And that is enough. Hang in there.
First, prayers and good thoughts to all of you.
Second, I know how you feel. My son has a physical disability that requires therapy four days a week and regular trips to specialists and imaging centers to monitor his issues – all on top of the regular pediatrician, dentist, etc. He’s 14 and it still goes on. It is exhausting, frustrating and generally just a big pain in the ass. It’s OK to say so once in a while. It’s hard for people who don’t have to do it understand how draining it all is (on top of the fact that your mother is not well which is stressful enough).
Take some time to find ways to accomplish what you need to accomplish, and please ask for help to take other burdens off of your shoulders. Also plan some Cecily time to stare out the window, take a bath or read a book. You will be more patient if you make time to focus on yourself regularly.
You are doing the best you can. I hope you know that.
I’m sorry. That sucks.
As a rather unusual hormonal patient myself, the most helpful thing is to find any other patients like your mom and talk to them–they will know so much it will amaze you. And read the medical literature.
I have not found endocrinology to be a cutting edge area of science. If it’s not diabetes or thyroid, it may as well be from Mars in my experience. So balance out the medical input with info from patients who’ve been there and the medical literature (which for rare things is usually something doctors have forgotten studying, I’ve often been surprised to find I know the literature better than my doctors).
M