The Mast Cell Dance of Decreasing Spoons

 My husband involved a doctor this week and I was steaming mad! It's been quite the week. Bear with me, this will be long.

Sunday, stupid Sunday, I climb out of our car, open the back door for the handicapped friend we always give a ride to church. Just as I'm standing up a man with a shaggy ratty-looking sheepdog walks up and the wheezing starts. I get away from the unwashed and ungroomed dog. Every time I turn around the dog is near me. By the time I start donning my N95 I shout at the strange man to get his dog away from me, that I keep moving away from him.

Earn dirty looks galore for donning the mask and have a few unpleasant interactions with people of the church. One guy from Africa asked me how I was, and I truthfully wheezed out "Not good!" only to get the lecture from him about not trusting Jesus enough. 

Can we talk about this for a second? If you ask someone how they are doing. You can see they are struggling then why would you not offer to pray for them or say something simply acknowledging their realty, even just a simple "Oh dear!" would be better than blaming the sufferer. This seems to be common in Evangelical Christianity. 

I spent the rest of the service gobbling down drugs, using the portable neb, or with me head down below the counter the husband sits at to run his ministry. I made myself as small as possible to avoid any interactions with boobs and incompetents before going home to lay down and scarf down more meds. I avoided the altar prayer ministry because a few weeks ago they'd done a full out demon removal from some random lady. I do not want anyone doing that foolish quite dangerous in the spirit nonsense anywhere near me. I've seen it again and again at my old church and seen the harm that type of thinking does to folks without any long term benefit. Better left in the hands of certain Catholic priests, not the general public.

The next morning I'm shambling and stumbling, very much almost out of spoons, but I needed fruits and vegetables. The husband needed a few things, and we had errands to run. It all went well until it didn't. At the fruit market - this place where fruits and veggies are heaped on rudimentary wooden tables -

 I'm walking around with my full basket, just needed a few potatoes and I'm done. I stop in front of the potatoes. Start suddenly wheezing out of nowhere while feeling someone trying to nudge me away from the potatoes calling out a strident, "Excuse me, I NEED POTATOES!" I turn to see whose bumping me with their cart because I stopped for a millisecond at the potatoes and see an older, well I cannot call him a gentleman, man with a haughty proud look on his face, and a scruffy looking poodle yapping, pulling at the lead wearing a "Service Animal" vest. Clearly not a service animal. They're good about making people keep their various animals out of the fruit market, but not in the face of someone claiming to have a service animal. I ask him to step away from me since I'm allergic to his dog. He says no because his dog is "hypoallergenic" and I'm blocking the potatoes. World's fastest shamble over to the other end of the store, potato-less, don the N95 again, pull out the drugs and furiously dope again! Worst Monday ever. 

We cut the errands short and head home to more drugging and laying down. I am mostly in the bed for the rest of the day. Two full days lost to this nonsense.

My husband, bless his soul, doesn't fully understand this evil thing I deal with. He starts saying I need newer better doctors. I point out there's no one in Costa Rica that's ever treated what I have, and the clinic director has worked with my pulmonologist in the States to keep me well. The newly released mast cell biologic meds aren't available here, neither are some of the other meds so I do what I can and mule what I need back from the States. He keeps saying someone somewhere should be able to "cure" me. I have to explain for the tenth trillioneth time that there is currently no cure for this evil systemic mastocytosis. 

The next morning he has one of his twice a week Spanish language lessons and comes home very excited. One of the ladies in the class asked him how I was doing, and he told her about my mast cell. I'm already side eyeing him because he's violating my personal boundaries and Hiipa laws by telling her in four part harmony about my issues. 

Turns out both of her parents are internal medicine doctors and instructors at Johns Hopkins. I smack my head and HUGE SIGH because I've been seen at Hopkins and treated rudely and dismissively by an allergist at the Allergy and Asthma Research Center. He ignored me to rerun tests that are not helpful in mast cell because they don't show the full picture. ELISA testing frequently is useless for mast cell, showing false positive for some allergies while showing only a mild reaction to the things that provoke the worst asthma. It's not traditional asthma or allergies. I did have a great ENT and a wonderful OT therapist that helped me greatly there, but the allergist acted like he didn't know what mast cell was. Keep in mind this was more than ten years ago.

So the husband is waxing rhapsodic about how these two doctors are interested in helping me and I'm all *the wheel is turning but the hamster is dead* level of non-excitement. The doctors reach out to me via email and ask for a medical history. I give it to them, including pointing out that I've already been ill treated by someone at the allergy center. I hear back quickly, they seem to be blown away that the first time my IgE levels were measured they were 27,000. Normal is under a 100. They tell me, surprise surprise, they cannot help me, but they will introduce me to a kind, compassionate and experienced with mast cell doctor at the allergy center if I'd like so that I can get that newest biologic med.

Fuck me, fuck my life! Getting this newest drug would mean likely a year or more living in my kid's basement in Maryland and trudging back and forth for the shots every week or two. I'm sick, but not sick enough to contemplate that. I'm here, I'm coping, I'm in a slight remission state and dealing. I'm not at 27,000 territory yet. I haven't used an epipen in ten years. If I get worse I'll be taking up these doctors on their help. 

I think the husband finally gets how rare this bullshit is and has an inkling what the suffering is like. Having another set of doctors tell him there is no cure only levels of remission state or full blown state is helpful I hope! Please, no more bullshit!