Sorry for the delay in posting new things, but I've been incredibly busy. Of course if you're following my Instagram, you have an idea of some of the things that I've dealt with the past few days.
On February 13, I woke up to the doorbell ringing and my dogs losing their furry minds. When I opened the door, there was a florist with an arrangement of a dozen roses and baby's breath! I was so shocked! The florist didn't want to just leave the flowers outside because there was what qualifies as a Winter storm in New Mexico going on, so he just kept ringing the doorbell until I got to the door. And as you all know, EDS means I move extremely slowly. My poor dogs. But anyways, the flowers were from my husband and they were gorgeous! They remain gorgeous, sitting proudly on the middle of our dining table. I really don't like sharing romantic things my husband does with the public as they happen, as I feel those things are between us and meant to remain private. So I'm sorry, but there was no Instagram post of the flowers. I do enjoy everyone else's posts about the things they do with their significant others (it's one of my favorite things), but personally I don't feel comfortable posting those types of things until after the fact. When I went to put the flowers on the table on Tuesday, I realized just how incredibly dirty my house was. I couldn't have those flowers in a dirty house. No, sirree.
Fun fact about me: I often have manic episodes that result in crazy amounts of things getting done. They usually last a few hours. This particular one came on suddenly and lasted for five hours. Riley recognizes the look in my eye and will hide to avoid getting a bath. Jeph's soft and shiny coat and freshly-trimmed nails tell the tale (tail haha...I'll see myself out) of how he did not heed his sister's advice and failed to hide in time. Poor little guy hates baths. I have done every trick in the book, but to no avail. On Tuesday, I drained the tub and got in with him. He hid between my legs and was okay with getting the soap rinsed off as long as he didn't get dragged from his hiding place. I mentioned before that he likes showers, but he is simply too big now for me to hold him and clean him and not drop him, especially if he wiggles.
The house enjoyed a deep clean. The living room, garage, kitchen, dining room, laundry room, and bedroom were all taken care of. I had to shower three separate times, as I am allergic to all dust and my manic cleaning kicked up quite a lot of it. By the time my husband came home from work, I was exhausted on the couch, hardly able to move.
I was vaguely aware that a year prior, my husband had got down on one knee and asked me to be his. But I assumed we would just be happy about it and save our celebrations for Valentine's Day. I assumed wrong.
My husband told me that we had dinner reservations for 7:30 and that the flowers were indeed meant for February 13, not 14. I was completely flabbergasted and excited, but so very tired. Husband let me take a nap to gain a few more "spoons" (the way the chronic illness community refers to energy*). I had a beautiful time dressing up and doing my hair and makeup extra fancy. Husband kept the destination a secret until we were there. It was this gorgeous restaurant, in our city's preserved antique section of town. It was candle-lit, the food was open-fire-cooked, and the waiters were all obviously professionals who were proud to make this their career. As they should be. What a meal! Steak, crab legs, fresh salads, soups, bread, mousse, and more! It was honestly magical. As was our server's impressive beard. I could go on and on about the merits of this hidden restaurant jewel, but I think I'll keep the rest of this particular memory between my husband and I.
Then came Valentine's Day. Oh, what a day. It began with getting up disgustingly early to drive my husband to work so that I could have the car for the day. What I thought was going to be only a fifteen minute drive to a new Internal Medicine Specialist turned into a forty-five minute evil hell ride, as I had the address wrong when I had looked it up the day before. I'm not even supposed to drive more than ten minutes at a time, as my head and neck end up in an extreme amount of pain. And here we were, having gone forty-five minutes one way. Riley was carsick by the time I finally pulled into what appeared to be a dilapidated old hospital.
Again, if you know me you know that one of my Traumas that fuels my PTSD stems from a terrible hospital/surgery experience. Walking into a converted hospital was not a good idea, but with Riley gently tugging me along, I opened the door and headed in.
I'm sure I've been in a more confusing lobby, but I don't remember it. I had no idea what to do, and there were no signs to tell me. Finally, I found a box of stickers where I was to fill out my personal info. Think "Hello My Name Is" stickers with a few more lines and a place to put your doctor's name. I filled out a sticker, then just stared around the lobby until I caught a passing nurse and begged for instructions. It turns out "everyone knows" that you put this sticker with your personal info in this unmarked box and then just sort of hope that the admitting staff looks in the box and calls you over and also hope that this sticker gets shredded or something. Fun. Eventually, I was called over to a desk where I was "admitted," which was confusing to me and upsetting to my Trauma Brain. I was here to see a specialist, not to get admitted into a system. I ended up getting a yellow band, as I was at risk of falling at any time. The one thing that was good about this whole admitting fiasco was that they had a separate form that asked for my preferences. What name would I liked to be called, what gender I identified as, my birth gender and name, my preferred language, my sexuality, my religion, and other questions. The admitting woman then immediately switched to referring to me as "Abby" instead of "Abigail." And didn't slip up once. And neither did the nurse who called me to the back. It was a bright spot, as I felt that they would for sure honor and respect the requests of individuals whose names and genders were different than they were at birth.
Then it was time for the actual appointment. The nurse who took me to the back obviously had not been briefed on any of my conditions, as she asked me to put my belongings on a shelf high above my head while she took my height and weight. There was no secondary option, so I put my things on the floor. She was very confused, and seemed thrown off her game. Apparently everyone she knows can lift heavy things above their heads. I mean, you'd think the giant Black Lab with "Service Dog" and "Mobility Assistance" and "Medical Alert" stickers all over her vest would be a clue. And I was right about it being an old hospital. I was led right past a place that looked exactly like the nurses' station in the cardiac unit in a hospital I had been in. I kept myself firmly focused on Riley, having asked her to "follow" the nurse to our room. I had been told to bring my medical records and had a huge stack of just the last few years (my whole medical record would fill up several cabinets). But the nurse did not want the medical records. The admitting woman had not wanted them. I had no idea why I brought them. The nurse mentioned that "Ms. Guttman" would maybe want to flip through it. I was confused as to why the nurse wasn't saying "doctor," but then just brushed it off thinking that this was a workplace that encouraged familiarity. The nurse finally confessed to me that she was terrified of dogs, and I immediately apologized and asked Riley, who was guarding the front of me, to go and sit on my left side. The nurse took my pulse incorrectly, spelled all my allergies incorrectly, and didn't want to write down any of my medications in my file. I chalked this up to being terrified of my dog. I never blame anyone who is afraid of Riley, because if someone came in to my place of business with a tarantula, you better believe I wouldn't be able to do my job!
Then came the specialist I had been waiting two months to see. I was almost out of medications, and was eager to speak to a specialist about managing my meds and getting re-fills/re-prescriptions. I've also been sick to my stomach and bleeding rectally for two weeks now, and was wanting to ask what the hell was going on with that (TMI, I know. But this is what you read my blog for, so...).
The door opens. This small woman walks in. She asks me if I am Abby. I say yes. I say, "Hello, Dr. Guttman." She says, "Oh, I'm not a doctor. I'm a registered nurse practitioner, so I hope that's okay." I was stunned. She sauntered over to the doctor's chair and began to glance over my file. I managed to say that my Special Needs Coordinator had made this appointment for me with the impression that she was an Internal Medicine Specialist and that it even said so on my referral letter from my insurance company. She nonchalantly responded with, "Oh, I misrepresented myself. But I've been a nurse for so many years I'm practically qualified to be an Internal Medicine Specialist." I wanted to run away, but my life-saving medications were running low, so I sat through an agonizing, frustrating, terrible appointment in order to get prescriptions for my meds. It included, but was not limited to: the stethoscope getting stuck in my clothes three separate times, her not being able to hear my heart and lungs because her "hearing is failing," her demanding to know why I'm on so many medications, her confessing that she had no idea what I'm diagnosed with, her looking at labs from four years ago and saying that she's sure nothing has changed since then, her telling me to go to a different health system because she used to work for them before they fired her for wanting to retire (suuuure), and her taking a full half an hour to type up four prescriptions.
When the appointment was over, I gave Riley an emergency command. Her normal "let's leave" command is "Lead Me Out." Don't judge me, but her emergency command is "Let's Get The Fuck Out Of Here." She also responds to "Let's GTFO." She pulled me all the way through the run-down old hospital, through several doors, and out to the car and didn't let me stop or cry until I was firmly inside the car.
I sat in the car shaking and crying. When I finally calmed down, I realized I was going to have a forty-five minute drive home. Cue the crying all over again. Riley licked me from the backseat and grounded me until I could get a hold of myself.
My poor husband got a torrent of furious texts. He took time out of his work day to respond, as he was also horribly angry at what had happened. I decided I was going to get McDonald's for lunch. I had planned to stop by the BX (like an Air Force version of Target) when I got back to the base and pick up a surprise V-Day gift for my husband, but after that particular "adventure," I decided to grab some Valentine's Day chocolates as well.
After picking up cheeseburgers, fries, and a Shamrock Shake (my guilty pleasure that I wait for all year), we sat in the BX Mini-Mall parking lot, took deep breaths, ate, and fully put the horrible morning behind us.
Riley and I dropped my prescriptions off at the base pharmacy and headed to the BX. We took a slight detour on our way to the chocolates because Riley was alerting me to the danger of a mannequin that she thought was standing suspiciously still for just too long to be harmless. We picked up a cologne Husband has wanted for months, a sweet Valentine's Day card, and many chocolates. Usually I wait until February 15-17 to get the chocolate on sale, but this was an emergency situation.
My Care Coordinator was incensed when I told her what had happened. She told me that they had told her over the phone that this woman was an Internal Medicine Doctor, and that there was no excuse for them lying like that. She is now working on finding me an actual Internal Medicine Specialist.
Jeph was more than happy to see us when we got home, but Riley was so tired that the little guy ended up playing by himself while she slept.
When Husband got home from work, we shared leftovers from our romantic dinner. I then took an aromatherapy bath for pain, as my body was over-exhausted by the events of the day. After the bath, which was absolutely amazing, I was re-energized and we went to a Mexican sports bar for dinner. We enjoyed drinks, wings, tacos, nachos, and yelling at a UFC fight, a basketball game, and several horse races. It was exactly the kind of thing that was needed after the day we had both had. We left Riley at home because the poor girl was exhausted and would have hated the loud environment of the sports bar. I do need her 24/7, but when Husband and I go out we occasionally leave her at home to rest, as he is very good at recognizing my symptoms and signs and sometimes parents just need Date Night.
This morning, my neck is horribly stiff. I can't look to the right. Jeph is enjoying this, and continually waits until my back is turned before jumping up on the trash can. I will take a bath later, enjoying some amazingly potent oils that I got from this amazing little herbal and natural medicine shop Husband and I discovered in downtown Albuquerque. I am also wearing an Aromatherapy necklace I got from that shop, and it has been invaluable.
I'm not sure when my next blog post will be. Today, I am resting. Tomorrow morning I have a two hour Psychiatry evaluation and intake appointment and tomorrow afternoon I have a one hour Psychology evaluation and initial appointment. Tomorrow will be so tiring. Friday I see my current Primary Care Manager (aka regular doctor) and will ask about the infection in my belly button, the bleeding from my butt, and my extra nausea. Saturday, Riley has a grooming appointment at a new groomer's. We have a few days of rest and then it's off to Texas for Husband's brother's graduation with the In-Laws. Wish me luck and spoons, friends. And follow me on Twitter, Facebook, and Instagram for pictures and stories in-between blog posts.
*https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
If you're wondering why the heck spoons refer to energy...
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