Trying to Get Care: The Neverending Story

 

I'm going to attempt to pull things together. There's a lot of connections I've failed to make here I think. Let's see if I can connect all the dots.

So. The ultrasound that came back hinky...that has the highest odds right now of being cancer. For the record, I've asked for imaging. Several times. I don't know why. I just had a sixth sense about it but I couldn't warrant anyone's attention. It still might be fine, it's just got higher odds is all. The diagnostic flow through is that I go for another ultrasound in six months. If they're still in not listening mode then, I'll get a second opinion then. That's the plan.

But. The risk is making me more concerned about the grapefruit sized bulge. So far, no one knows wtf it is.

And. Then I have the hip issue in the mix in the same general area as the bulge.

Meanwhile. The new pulmonologist is doing their best to torpedo my asthma care. We're coming up on a year with them and I'm so frustrated. They have been really dysfunctional to the point of not doing math correctly. I don't have the meds I need and they're actually dismissing me with the 'you're anxious' bullshit...which is a first. Usually I get the weight bias not anxiety, but okay. I guess this is what happens when you lose weight. They just switch up the reason they dismiss you and deny you care.

I really do not want to wander through the system to find another pulmo. The asthma is totally capable of being well controlled. I'm really busy with everything else. Just give me the meds for the asthma action plan so I can manage the rest of my body. Please. But naturally, they are insisting on doing anything but what works. I'm going to have to deal with this somehow or else I'm not going to have the tools I need to stay out of the ER and hospital. 

However. There's no guarantee another pulmo will be any better. They all play this sick game of 'prove you have asthma or you can't have meds.' Still. STILL! But proving I have asthma to them causes me harm. It's so fucked up. I can't believe this sick game hasn't been squashed. It's just so fucked up. I know. I said that already, but it's really fucked up. 

Currently. I'm off my inhalers trying to make sure I'm symptomatic for the next round of appointments. I figure if I can get them on board with mildly out of control asthma, that's better than waiting until a respiratory infection nukes me. The respiratory testing they did previously was all positive for asthma too. I've proven I have asthma to this doctor. I can't fathom why I'm still going round in circles about prescriptions that keep the asthma in the box.

Of course. Now I have asthma a lot. Which is good for my goal, I guess, but sucky to deal with.

Plus. I'm doing PT on the hip, trying to qualify for the next level of care. I've got my second opinion in a different specialty set up. Mainly I want to be sure the grapefruit isn't a serious issue and that it's just arthritis. As the PT aggravates everything, I'm gaining some additional insight that makes me think there's more happening here.

Also. Hip PT is kind of awful. I have this super young guy in perfect health, who has never had multiple tumors fuck them up, who hasn't read my chart, who is prescribing dangerous exercises, who is too young to have the life bullshit I'm dealing with, who still believes in toxic positivity and dumps it all over their patients.*  

You know. It's really fucking easy to be positive when nothing is wrong. I'm less interested in whether I feel optimistic or pessimistic, and more interested in achieving efficiency on whatever it is I need to go through. Respect my time; don't fill it with platitudes. You're not my friend, therapist, pastor, or life coach. I'm beyond value judgements. Just find it, fix it, finish it so I can have a fucking life. 

I don't care if I'm happy at fucking PT. I want to be happy living my life.

The teen. Their blood went to Mayo. Yes, it's all become that extra. We're waiting on the results. There've been some abnormal values on other tests, but nothing easy, nothing plug and play diagnostically. I'm not sure what they're going to do, a lot depends on Mayo now. We had the out-of-state specialist clinic consult and have a plan there. Whether it works, I don't know. Some of that depends on Mayo, too. 

We did run into what I took as Lyme stigma at the clinic. "Tell me what here has actually been diagnosed by a doctor."  Sigh. At some point we're going to stop telling doctors about Lyme. It's not worth the stigma. They use it as a signal to negatively categorize their patients. The woo shit has done a lot of damage and the doctors have made it worse--no one forced them to stigmatize the patients...they chose that. 

And this is a specialty where no one with Lyme is going to ask them for anything anyway! So getting all guarded and weird over simple health history was just not necessary. Anyway, we're not woo so I think that shined through. I hope.

*I do wonder how often they spew this crap to men vs women. I wish I'd had the presence of mind to ask them about it. It had a very 'you should smile more' feel to it. If I could smile away my health problems, I wouldn't need PT or anything else. Ugh. Gross. What are they teaching PTs in college in terms of patient psychology and life stages? Someone needs to tell them not being 20 is a whole different world and you can't scold or shame people into being positive, that whole approach is dysfunctional and registers as manipulative for many people which means people lose trust in you. Come on, people. Try. Please just try to not be a ridiculous dipshit.