Thursday, May 30, 2013

As Promised, Medical Follow-Up

I managed to see 5 doctors all in one day -- today. This was with only 2 appointments originally scheduled. It's an impressive feat. 

Our adventure started at 8 am on the 8th floor of JHOC. That's Johns Hopkins Outpatient Center to you normal, healthy people. It's pronounced Jay-Hoc, if you want to sound in the know.

We allotted time for me being slow, traffic, and parking, but we were still a few minutes late. I literally mean a few as in 3 or 4. Then the computer system had a major meltdown checking me in (couldn't handle my history or medicine list...?). So I seemed more like 25+ minutes late by the time they sent me back.

And do you know the first thing the woman doing a very painful test on me says? "Did you know that your appointment was at 8 o'clock?" 

Hmm, let me think about that. I know I made a conscious decision to wear my Superwoman panties today and it seems like you, Ms. Thing, decided on your bitch panties.

No, but seriously. I try my best. And as Kevin insightfully pointed out, these are the people who regularly treat disabled people with debilitating conditions. Good job.

And I seriously was wearing Superwoman undies. My best friend gave them to me, because I'm her Superwoman, or Supermoo if you prefer. Some people might think a grown woman giving another grown woman superhero underwear is weird, but I think that is weird. Anyways, I had a feeling today would be the kind of day that called for some superhero inspiration. 

I've spent a long time getting to my point, so I'll try to be concise. The test was painful, as it was the last time I had it. The technician was a bitch, unlike the previous tech I had for the same test. The primary nurse for the Hopkins specialist I saw was kind, compassionate, and thorough. I can't tell you how nice it is seeing someone in the medical community who understands my disease and knows I'm not crazy or exaggerating or a wuss or whatever. The doctor was also nice and understanding. He is the protege of THE Hopkins specialist, and he was training a Brazilian doctor. Baby steps, but so awesome that awareness is spreading. 

I'll share with you my text to my bestie so you feel equally special. 

So yes, I still have TOS. I'm still not better. And just like EVERY NEW DOCTOR DOES (no matter the condition) he wants to start at square one. Does it matter that I had unsuccessful PT before? Absolutely not. Maybe it'll be better now that I'm in more pain post-op. I am really looking forward to that. Now I've said before what an ace Kevin is in terms of being a caregiver, but he is not used to shit like that from doctor's. He was frustrated at how useless this appointment was, knowing that means prolonged pain for me. It sucked telling him that sadly, this is something to get used to. But in a weird way it was a nice change of tune for me to be the comforting, reassuring one. 

Now the referral for my heinous rash was actually useful. Thoracic doc suggested I see a dermatologist very soon. I went to the derm department 2 floors below, showed the receptionist my neck, explained, and politely asked if they could find time for me today. She worked magic and managed to squeeze me in just two hours later. 

Kevin and I dined in the main hospital's Cobblestone Cafeteria. We also visited the chapel for some much needed prayer and meditation. I gave him the insider's guide to Hopkins. 

I was seen by not one, but two, dermatologists. And they concurred the rash, that has been growing for the last two weeks, was caused by an allergic reaction to the surgical glue used to close my incision. Thus, the rash clearly circles the incision. 

For those of you keeping score, this does NOT make sense, because surgery was 2-months ago. So, this allergic reaction waited 6 weeks to stir. I know, I know. It doesn't make any sense. But three Johns Hopkins doctors were pretty sure that despite logic, that's my problem. They prescribed me a steroidal cream to slather on and around the rash and (because of my immune deficiency) an antibiotic, just in case there are other issues going on. 

If you're keeping score on another count, this'll be my third antibiotic in the past month. It's this vicious Catch-22, having no immune system. Docs always prescribe antibiotics because my deficiency keeps me so at risk, but then my immune system never can learn to be strong on it's own. I take a probiotic daily, whether or not I'm on an antibiotic. (From late 2011 to early/mid 2012 I was on various antibiotics for 9 months straight. Nonstop. Never got healthy. Just a frame of reference.)

Four docs down, one to go. Fifth was not at Hopkins. Number 5 was my pain management appointment. That appointment was originally scheduled for next week but we thought it'd be a good idea to consolidate and save Kevin from having to take another day off. The reason we initially didn't do that is because my pain doc is on vacation until next week, so the appointment would be with the PRN. I love nurses. Usually more than doctors. This office is one of the exceptions. But I figured this appointment is just refilling a few prescriptions. No big deal, right? Wrong.

Due to a lot of pain and a very long day I was incredibly emotional and showing it. We waited for more than 30 minutes for the appointment. In the waiting room I was privy to hearing, separately, two of the nastiest, most entitled one office could hope to face, back-to-back. Both women we old enough to be my grandmother and through their loud rants I learned they both only take two medications a day. And they both suffer from temporary painful ailments. They ripped the receptionist a new asshole, for things she had nothing to do with. They both are still gainfully employed. One of them threw a fit that the docs were running late because she had to get home to her cats, because she breeds (don't get me started). The other spent several minutes complaining that she has too much natural gray and wah-wah-wah the time spent on the upkeep and the last dye job came out brassy. And they were both throwing gigantic poor-me-pity-parties about everything. When they both left I started crying, in the waiting room, our of exhaustion and out of anger. It's hard to express to fire in my gut, in my soul, when I hear stuff like that. I hope I live long enough to earn my grays. I hope at that age I'm only on 2 medications. I hope I'm physically able to work. It's common for us sick kids to feel frustration with people who seem to take for granted the basic things we dream of. I usually keep it together better, but after today I just couldn't. The combine of mental and physical exhaustion was too great (remember, I also typically spend my entire day in the couch). I shared my frustrations with Kevin, and fought to hold back the tears, but the spilled over when a nice older lady nearby got up and brought me a box of tissues. 

So by the time it's my turn to go back every bit of exhaustion from the day has set in. I shared all my updates from Hopkins and lack of surgical success with the nurse. I not only had to beg for attention and my refills, but I also got a lecture. This lovely lady decided to lecture me on making "mountains out of molehills" in regards to my pain and my life problems. But like the women in the waiting room, I think "if you can physically hold down this job, how can you even think you can comprehend my world?"

Today ended with too much nausea to eat much dinner at all and a feeling that I ought not get out of bed tomorrow. Sometimes you just need a day. Or several. 

Thanks all for messages, texts, thoughts and/or prayers today. You guy are, as always, so very wonderful. Keep it up, because this journey is most certainly continuing. Also, will someone remind me to get around to finishing the "what is wrong with me" post so everyone can be caught up?! Thanks again!!