This is going to be a vent post. I've had a lot going on and on my mind the last week, and it's all still weighing pretty heavily. I know some time and patience will help ease that burden, but I thought perhaps y'all wouldn't mind me venting some here, to those who can understand. Pardon if it is very rambly and meanders all over the place.
First, last week a friend of mine with no medical insurance ended up in the hospital. She was coughing blood and urinating blood... turns out she has Goodpasture's Syndrome, which apparently is pretty rare. Besides that being a big enough problem, I was anxious that she tell the docs that she has had some pretty major joint pain as well. Goodpastures is auto-immune, involving the kidneys and lungs. She's been sharing with me about her joint pains, and I've been concerned before now that she might have something lupus-y. Since she had no insurance, I didn't press very hard for her to see a doc. I kinda wish I had anyway now, though it really wouldn't have changed anything.
She got worse while she was there, and after two days they h ad to knock her out and intabate her (sp?). She unfortunately also has Von Willebrand's, which made the bleeding in her lungs all that more dangerous. We were all in knots, hoping she pulled through. She did, thankfully, but still has many struggles. She remained in the special care unit for a while before finally being moved back to the more general heart/lung section once more. She's very emotional and upset, afraid to be alone, and sometimes feeling extremely defeated and giving up. Her mother thinks she needs psychiatric help because of this, and while it's true that she has a history of doing things that are detrimental to her health and sanity, I don't think these depressing thoughts are entirely all that indicative of her normal state of mind. They have her on all sorts of drugs, steroids included, and I know those can really mess up one's emotions, NOT to mention being in pain and being in the hospital and being told you'll be there for weeks to come as you recover, and that you might have to take medicine for the rest of your life. I worry that her mother calling for a psych eval might only make things worse rather than better, but I'm staying out of that issue myself. Not my call.
So overall, I'm really worried for her. I've spent at least part of the day for six days out of the last ten at the hospital with her and her family. I'm exhausted, I've pushed myself right to the brink of what I"m physically capable of doing, and have been sleeping a lot for the last three days to try and make up for it. Sometimes I feel guilty for not being there more often, for not doing more, for not being MORE supportive, but I've got to back down and take care of myself.
Right in the middle of all this, one of our cats started throwing up. No biggie, cats do that. Except he kept throwing up... and kept throwing up. All day, every hour or two, he'd throw up foam. I was getting worried, then alarmed. But money is tight, and we can't afford to run to the vets on a whim. So by the time we decided he needed to see one, our usual vet was closed. If we paid an extra $140, they'd see him after hours. ::facepalms:: Not an option. I managed to find a vet still open nearby and we took him in. So the vet, after hearing our story, starts catagorizing our options. While doing EITHER the bloodwork OR the x-ray wasn't too bad price-wise, if the results came back negative, we'd have to do the OTHER thing we didn't do. If they came back positive on either option, we'd have hundreds or even thousands of dollars worth of treatments he'd require. Which meant that in the end, it would be wiser to skip it all and just put him to sleep. I was nearly in tears, and asked if it was possible that neither was the problem. She said it was possible, but she really should examine the cat first to get an idea of what might or might not be wrong.
So she does so, and it's positive. She felt no obstructions, he wasn't painful. In fact, when she let him loose, he was a good deal more alert and active than I'd expected him to be. She suggested giving him antibiotics and some fluid under the skin, and sending him home to see how he does. We took this option gladly. I was nearly in tears at the thought that we might have to just put him down then and there, so I was ready for any option that did NOT lead to that immediate outcome. Good news is that he's acting normal now, three days later. He's out of the woods and doing fine. We think he probably ate a poisoned bug, as we got a new bug service two weeks ago. Gave us such a scare, though! It was NOT an opportune time for such a thing to happen, let me tell you.
SO, the cat thing happened the same evening I got asked to stay overnight with my friend in the hospital. (Thus why I've been so tired.) Friday was coming up, and my rheumy appointment was that day. I'm always nervous when an appointment approaches. ALWAYS. It's too serious to me for it not to get me worked up. I try to keep my stress level down, but it rarely works.
So we all trooped into the doc's office. Son had to come with us this time, which was a first, but he's a good kiddo, and didn't get involved at all, bless him. I had my handy book with the notes about what I wanted to talk to doc about. Doing so always makes me nervous, because I feel like I'm asserting something is important when I don't KNOW if it's important or not. Eh, I'm a wimp. But I still do talk to him about these things anyway. This time around it was hair loss increasing, blood not clotting like normal, getting a low temp when I nap for an hour, and a question about the connection between my hyper-extension and pain.
All of it was essentially dismissed/explained, which is good I suppose. It seems I'll just have to become resigned to hair loss, which I'm not happy about. It's aggrivating to be finding my hair everywhere, on everything, at all times. It's embarrassing, and it's also demeaning to run a brush through my hair and see how much comes out. ::sighs:: I'm not terribly vain, and I'm not too worried about bald spots. I just don't like my hair coming out, that's all. It's an equally unsatisfactory answer about my blood clotting... apparently I have to just endure that too. I've made such a bloody mess twice now when I knocked a scab off a small bite or abrasion on my leg. That's embarrassing too. It's pretty easily dealt with, however, since it just means I can whip out a bandaid before it becomes a problem. Just one more thing to deal with in this mess of symptoms.
But what really got to me was his decision to add a new drug into the mix. Methotrexate. Apparently it's safer for me in the long run than the prednisone, and I understand that intellectually. Honest, I do. But hearing about all the 'extremely rare' sideaffects is daunting, and then hearing him talk about how other docs would put me on six pills a week instead of four, and how they'd get swamped with calls of people puking their guts out and unable to tolerate it... this is NOT ENCOURAGING! I hate throwing up. Seriously. Hate. I'll take ANY other kind of being sick, just don't give me stomach flu. ::shudders:: I don't want to get sick on this stuff. But beyond that, it's just plain scary to be told you are gonna take a chemo drug, no matter in HOW small a dosage. My sub-conscious is NOT as willing to meekly accept the assurances that it is safe and for my own good. It SCARES me.
But it isn't just the med that scares me. It's also the acknowledgement that taking this very serious drug indicates how potentially very serious my condition is. I think perhaps this is the true heart of all my upset right at this moment, becuse writing this is making me teary. And truthfully, it's part of what's upsetting me about my friend in the hospital too. Watching her struggle has been like watching my own worst nightmare of what could happen to me. I've been able to distance myself somewhat from her situation, because she' abuses her body like crazy with drug addictions and smoking. I'm good to my body for the most part, and so her situation is NOT mine. (So I've been adamantly reminding myself.) But then to be told I'm going on this methotrexate, on top of my already teetering feelings about my friend's condition... it really has been a struggle for me. I'm fighting with myself about it all, because I know I should be pleased that I'll be taking something that might make things SO much better. But I can't seem to help being just plain scared to death. It's frightening to be facing undeniable proof that something is very wrong.
It also doesn't help my peace of mind that he's unconcerned about naming whatever is wrong with me. I know in the end it probably doesn't matter all THAT much, so long as my symptoms and conditions are being dealt with. But it leaves me in a limb of NOT KNOWING, and that fear of the unknown is a powerful fear. I'd be happier (well, not happier... more settled?) if I knew what to call it, and I could research the stuffing out of it so I could understand it. Not knowing leaves me without anything to do, without any new knowledge to arm myself with, and without that same knowledge to comfort me. I dislike being in limbo, but I have little choice in the matter. I've only been seeing a rheumy since May, and I know it can take years to be properly diagnosed.
So, then we add in well-meaning friends and family. I really am touched that they care and want to help so much, but... I kinda wish they'd stop making suggestions. Being repeatedly told to go gluten-free is exasperating. The most recent suggestion was from a distant cousin. She told me about being diagnosed with arthritis, being referred to a specialist... and how she read a story about a nursing home giving their patients a heated mixture of water, honey, and cinnamon on a daily basis, and how much it had helped them... and how she tried it, it has worked wonders for her, and how she cancelled her specialist appointment, as her doctor fully approves of a more natural solution, and that I should try it too! I'm very fond of her, and I don't want to hurt, upset, or alienate her, but I feel like throwing something. Just because he's treating me like I have RA does not mean her old age arthritis (she's older than my mother by a good bit) is anything like or related to my own painful struggles! The idea of water, honey, and cinnamon resolving my auto-immune problems is laughable, and it makes me angry. I don't WANT to be angry at her, but it still makes me feel that way. I know that she simply doesn't understand, and can't really even if she had all the info. But I'm getting tired of having to explain to folks that this isn't just 'joint pain', that there is more going on, and that I'm undera doctor's care and that I'd rather truth the doctor than the random suggestions that get thrown at me.
To top that all off, being angry and frustrated with people who love me and are showing their love via these suggestions... makes me feel HORRIBLY guilty.
So there it is. All the stuff that's rolling around inside my head and making me miserable right now. I want to cry, but I want to be strong. I want to sleep, but I want to live life. I want to vent, but I don't want to appear to be a whiner about little things. I want to share, but so few understand well enough to grasp what I'm saying. Then there's the abiding frustration that my symptoms don't match my bloodwork, and that none of it is enough to give a proper and solid diagnosis, and the guilt that comes along with partly wishing I WOULD get worse, just so I could say THIS IS WHAT'S WRONG WITH ME, instead of floating along on my doc's guess-so's and hunches.
I apologize if this was a bit much, and I apologize to those who are SO much sicker than I. I would never want to belittle your hurts and woes, and I truly AM grateful that I have as little wrong with me as I do. It just gets overwhelming sometimes, and that is what I'm hoping y'all understand and are able to relate to. In the shallows or down in the depths, we are all bobbing around in the same ocean of dealing with these auto-immune problems. Thanks for listening. ::hugs::