Tuesday, March 19, 2019

Medical frequent customer care card? It's an idea.

I haven't given you a health update in awhile and while it's nothing exciting, it's worth sharing even if only for my own memory later on. I keep saying there should be punch cards for every doctor visit you go to and when you get a free card you get a prize or a discount. Something.

Rheumatology: My doctor has officially retired now and they haven't hired a new one so I'm seeing a nurse practitioner in the meantime. That's OK, it's not like I'm a snob on who I see, and I really only go every few months so it's not a big deal. Actually I go every six weeks but whatever. At every visit I have to do a lot of lab work because I'm on Methotrexate and that's something that needs to be closely monitored apparently. My C-Reactive Protein (which tells them the inflammation situation in my body) is still really high despite being on Methotrexate. The current theory is that I do not absorb or process medications well (which makes sense because that's what other doctors think about other medications) so I need to start splitting my dose to see if that makes a difference. I've been taking my 8 pills on Wednesdays all at once in the morning, so now I'll do 4 in the morning and 4 in the evening and we'll see how that goes. If that doesn't work then my next option is injectable Methotrexate. I am NOT excited about this because I hate needles and I absolutely cannot do it myself. I really can't. Even thinking about it makes me anxious and I feel like I'm going to cry. I really can't do it. If I don't want to do that I have to do infusions of Remicaid/Humira/Enbrel, etc. I don't want to do that because those gave my mom cancer AND who has six hours to sit for an infusion? My options aren't great and I keep feeling like maybe I want to save all of that until I get worse? I mean, I can deal right now and if I am going to get worse, let's save all of this until then.

In the meantime, she gave me this ibuprofen cream? I had no idea this existed but it does and it actually kind of works. I used it on my hands, my back, and the tops of my feet and by god- it works. It's supposed to be direct application of the ibuprofen but without all of the side effects of ibuprofen that can make your liver angry. So we'll see how that is long term.

Gastroenterology: I see this guy again in May. I think after that appointment I'll have to schedule for my follow up endoscopy to see if my Barrett's Esophagus has changed, if I have any more inflammation anywhere, if the polyps in my stomach have changed or if I have more gall stones. They did an MRI a few months ago on my liver lesion but it didn't look like it changed but they'll check it out anyways I think he said. I don't know what to even think about any of that. I take my omeprazole every day and I don't know if it does anything, I never felt like I had acid reflux before but it's clear that I do, so who knows? I still have stomach pain all the time so clearly that wasn't the fix. I am going to ask about Small Intestine Bacterial Overgrowth because I have almost all of the symptoms and honestly? I look six months pregnant right now. I keep thinking maybe it's my steroids I take, and that might be part of it, but this is just ridiculous at this point.

Endocrinology: I see him next week and I'm sure he's dreading it. I have a LOT to ask him and honestly, I get the feeling that my case is so complicated and weird that he just doesn't have time for it. But the other guy doesn't want me either and they keep trying to make me go to the Mayo Clinic, who doesn't do regular check in's. They find the problem when nobody else can and send you back to your local doctor. The endocrinologists in the other hospital won't see me because I have too many other overlapping things and they won't see me unless I change all of my care over, which I'm not willing to do because all of my doctors are actually really good. So I'm kind of stuck. I absolutely, 100% do not believe my last ER visit was stomach flu. So he's going to hear about that.

Pulmonary: I get to see this doctor next week, too! He's actually really nice and I always forget his name and what he looks like, but I remember he's really nice and talks to me like I'm special needs. But this is, according to my planner, my one year follow up to see how I'm doing with my c-pap machine and how I'm doing with my inhaler for activities. I actually really suck at remembering my inhaler which explains why my lungs feel like they are seizing when I do exercise, but I put an inhaler near my TV and where my exercise bike thing is so hopefully that helps. But the c-pap machine is AMAZING and I love it forever.

Therapy: I won't lie, therapy is really, really, really hard. My depression is still really bad and I've not improved at all on my scales they make me do every few weeks. I get better in one area, get worse in another. Then they flip flop. Then something else will get worse when something else gets better. It's frustrating. I keep going every two weeks and I've never missed or rescheduled one. I'm trying.

Psychiatry: Oh, I see this doctor pretty soon, too. I have to tell him that while my irritability/anger/unstable mood is better (not great but better), the Ritalin does literally nothing to keep me awake/alert/aware. I have also noticed I have a weird inability to cry. When things happen and it's reasonable for me to cry, I can't. It feels like when you have to sneeze but you can't, and you're standing there willing yourself to sneeze? That's what it feels like when I want to cry. But then, out of nowhere, I'll cry about absolutely nothing and I have no idea what's going on. It's really weird and I don't like it. But the Ritalin thing is not good so I don't know if he will try to increase my dose or just switch  me to the next option, Adderall, which really scares me. I hear that and I think Lindsay Lohan and let's all see where that led her.

Overall? I feel like doctor visits have really slowed down, which is good. I feel a little more normal now. I think I am going to buy myself a really nice journal and start writing down every stupid thing that I feel or that happens. I'm finding that something will happen and I think, "Oh man, I'll remember THIS and tell the doctor!" and then I don't and when I go I just shrug my shoulders and say I have no questions. But a few days later I remember and I feel stupid sending a message to ask. I feel like I'm wasting their time and I hate feeling like I'm crazy.

1 comment:

Julie H said...

Man it has to be so hard dealing with all those doctors and just trying to get through every day!