It’s definitely Monday. You know those Mondays when you can’t get motivated and the day drags on forever? Yup, one of those.
I mentioned to my neurologist/physiatrist that sometimes when my body gives me trouble I can’t feel when I need to pee. She tested my urine to see if I had some kind of infection (and I didn’t think I did as this started more than a year ago). When my urine came back clean, she ordered a bladder and kidney ultrasound.
The test begins with an ultrasound of a full bladder, so I had to drink 20 ounces of water an hour before the test and not use the bathroom.
I selected a facility near work, so I could head over directly after my shift. The lobby was loud, and it seemed like every female patient had a two-syllable name that started with A. And then, an old lady stumbles awkwardly through the waiting room, bent strangely, a heavy purse dangling from her arm and, even more maladroitly balanced below her stomach, a toy poodle.
Yes, a poodle.
She practically falls into the chair at registration, and soon after completely her paperwork, releases the dog on a retractable leash and it’s running all over the lobby. It’s certainly not working, and it’s certainly not wearing the appropriate gear to be a service dog.
The ultrasound tech did a magnificent job and we talked at length about Stitch Fix, my publishing company, higher education and then she asked me about my educational background. Maybe she’ll buy some books.
There is a new accommodation popular on the internet– image descriptions. Nancy and I were talking about it last night, because she has her cell phone now and is receiving email and interacting with the web it new ways.
She asked a question that has bothered me about these descriptions since I first encountered them– who benefits from them? Depending how the description is written, it doesn’t help and if the text near the image is well written (in an email, newsletter or blog) a description should be in the text. (But I’m also trained by my experiences with Nancy.)
If I described a selfie of me as a woman about 5′ 4″, brown eyes, glasses and brown hair in a floral dress many of those details mean nothing to a blind person. Details that matter would be I have wild curly hair that flows past my shoulders, I have uneven fingernails but smooth skin, and a long sundress with ruffles and a kick pleat on both sides. And when I walk, my gait has a scuffle to it due to my cerebral palsy.
See the difference? Pun intended.
Most of the images I see described feel like they were written for someone who had seen at one point. A congenitally blind person does not attach meaning to colors or conjure the same connection to concepts like “sky” that a sighted person does. Just like when I interact with darkness, while I use techniques Nan taught me as to not harm myself, my concept of that condition and hers are different. When the electricity goes out at night, nothing changes in Nan’s world except the television won’t work.
I feel like too many attempts to acknowledge and address the needs of the disabledfocus on the experience and needs of the able-bodied who become disabled which are often different from the needs of the congenitally disabled, even if the impairment is the same. In my experience, the able-bodied community wants to fix disability and would rather see the disabled person function in the same manner as the “normal way” rather than adjust their expectations and methodology to accept a method easier on the person with the disability.
Again, in my experience, people with disability learn the “right way” and must struggle with the “right way” and even accommodations can focus on allowing the person to perform the task the “right way,” until the disabled person, a clever occupational therapist, or empathetic mentor finally discover an alternative method that might not look like the right way at all.
And sometimes that makes the able-bodied community uncomfortable. Consider the brouhaha one can often encounter when dealing with handicapped parking spaces and who deserves them and the “rules” regarding having a service dog in public.
And on top of all this, we have the able-bodied community who experiences temporary disability or permanent disability. When these people can’t go of their “right way,” that is when we start to see efforts to make the disabled experience feel more like the able-bodied one. It’s actually person who went blind at 30 or the person slowly experiencing vision loss who wants to hear about the color of my hair.
And those seem to be the type of accommodations that “catch on” and “stick.” Because it’s an activity easier for the person extending the gesture. The sighted person writing the description looks at themselves as if looking in the mirror instead of imagining how someone might find him in a dark cave. And the answer is not “with a flashlight.”
In more personal news, thanks to the hard work of my chiropractor, Nicole Jensen, and my trainer at Apex, Andrew, my body might be overcoming its last episode. It’s annoying to think I must maintain three workouts a week to keep my body from seizing up and forgetting how muscles work.
Yesterday, I could feel my leg pulling and turning wooden as I like to say. I can only describe it as I can feel it pull away from my body. It no longer listens to my nervous system and it feels like I have to pick it up and drag it with me as if it were a prosthetic.
So, after Nicole got everything aligned Wednesday, and an upper body/core session with Andrew after chiropractic care, and some reflection Thursday from my new cardiologist, I walked to the gym Friday. We did legs and some barbell squats. And some planks. I haven’t done planks in ages. Held steady for a minute.
Andrew asked me functional questions about what my legs were doing and I had to remind him, “I can only tell you what it feels like, I really on your observation to tell me what’s actually happening.”
Because with cerebral palsy, my muscles rely on repetition and routine to remember how to function. As I understand it, my brain’s instructions just don’t make it there. So my lower limbs just do what they want, until I consciously connect them all and just like learning to fold clothes into perfect little 9×9 squares as I do at Stitch Fix– it only works when the action is embedded into muscle memory and the thousand steps it takes to execute just happen without thought. THAT is what I am hoping to achieve. But as I learn what to correct and how, someone (and that’s Andrew) needs to observe me to make sure I don’t miss anything.
Folks, I don’t feel like writing this. I’ve had so many demands on my time that I don’t even think about what I can write or when I might have the time to do it. I’ve had one job interview, told one I wasn’t interested and have a third coming up Monday. Today was the first day at least this week that I didn’t feel like my leg would fail to support me.
I had some incidents last week where my overscheduled life led to idiocy (like leaving the rats in their play area, leaving the house and driving 20 minutes away before I remembered them) and some joyful times too, but honestly I feel like I write my calendar out on Sunday and don’t even have a chance to look at it until Thursday.
I gave my doctor the new paperwork for the absence management company last Thursday and I haven’t seen any evidence that they received it. I continue to struggle through my issues at work (though today was the day where I didn’t feel like my body was falling apart all day but more on that in a minute) meanwhile… I have a hard time keeping my feelings in check when I see others milking whatever they can to get special treatment at work.
One woman had a migraine all week but did her job.
Today we had a massive barbecue at work, and an appreciation luncheon yesterday, as the local managers rush to spend their budgets before we lose our jobs. Despite this feasting, I have lost 2 pounds according to the doctor’s office (and I hope that it might be more since I have increased my sodium so much that their should be some water retention with that).
In the photos, you can see some of us going through the food line, my friends concentrating on their bingo cards, and a friend’s demolished plate.
After all of this, I went to a new cardiologist. A female. I swear I know her from my nonprofit work and I have to wonder if she served on a board somewhere I worked. Yesterday, I went to the chiropractor, my beloved Nicole Jensen of Back in Line, and then went to work out with Andrew at Apex Training.
So, I told everyone my theory. And to date, no one, including the new cardiologist, has disagreed.
Fact: In January, my blood pressure went up. I don’t know why. I was taking Lexapro at the time to try and keep my blood pressure lower, because it was due to stress (and I had lost my father a year early and don’t hear from my other family members, even when I try to reach out so the idea of a low dose SSRI didn’t seem like a bad idea). I had been on that medication about a year. I also take baclofen to help my legs move better, which I started more consistently in November, but had been taking since May. My doctor advised me to watch my diet and my sodium.
Event 1: March 1 I dove down the eight concrete stairs at work, smashed my finger (in a bad sprain that has left it still quite bent) and almost passed out after the event. My blood pressure was fine.
Anecdotal evidence: I had eaten a lot of fast food that weekend.
Sidenote: Saw the hand rehab specialist/occupational therapist for the first time during the day March 13, went to work late, and had set up balance physical therapy to begin March 20 at the request of my doctor.
Event 2: At the end of the day March 13, about 7:30 p.m., I fell down the stairs going up to my room after a big meal. I had had Little Ceasars and Taco Bell that weekend. The bruising on my back knocked the wind out of me and my face was gushing blood where I had slammed it into the air conditioner that my daughter had rested on the floor. Went to the ER for stitches, found out I was in afib.
It took some time after that to get the results of the heart monitor back (I’m fine), and it took some dickering so the beta blocker didn’t give me low blood pressure and postural hypotension. But I kept having episodes of each.
Later, in June, I was told to stop taking the SSRI because I had a risk of fatal arrhythmia.
I asked my doctor to see the nutritionist and she said I was not eating enough salt because of the cardiac diet recommended and washing what sodium I did eat out of my system. Within three days, I felt 90% of myself.
Now, I mention all of this because one of my original theories about why this had happened addressed salt. I had thought the universe was punishing me for eating all that bad food, and my first cardiologist whom I saw in the hospital, pushed the idea away. And that’s why I went to a new doctor.
I also believe the afib could have been caused by the bodily trauma of my fall down the stairs. And that I feel so awful when my blood pressure is 110/60 because of my cerebral palsy– that my body just needs more than that to make this body move.
And my new doctor believes that I’m on the right track. That:
Lack of salt might have initiated the symptoms which led to the falls in the first place.
I might never have an incident of afib again.
And — when I’m ready– we can potentially change or eliminate the beta blocker.
Honestly, with losing my job this fall, I’m not sure now is the time to take my heart off anything that helps keep me calm. She also mentioned that I might do better on an extended release formula.
That’s all I got. And this took up the last of my free time. Sigh.
If you read my post on Monday, when I was in tears and in pain all at the same time, you might recall that the absence management company used by my employer denied my most recent absence on the grounds that I am only “allowed” to have one episode per month, according to how they read the form that my doctor filled out multiple times.
Now, I know some doctors are more idiot than useful, but I assure you mine is not. For him (or my neurologist/physiatrist for that matter), I would gladly hand over one of my O- organs should he ever need a kidney or a live liver donor or a lung (I have two). So it irritates me beyond belief that the absence management company sends out a four page form but always bases the determination on one question.
It’s just hard. I work with a lot of people, and few people know how hard it is to have a body that works great one day and completely fails the next. And most of the people who work in the warehouse and have accommodations (because most people who have a permanent and chronic condition don’t want to work in the warehouse) have them for a temporary amount of time due to surgery, injury or pregnancy.
And any time a disabled person asks for an accommodation (like adjustments to a work station or permission to have a tasking canine at their side), there will be other people who take advantage if the system. Everyone’s body is very different, so two people could have the very same condition and still need unique accommodations. And I think some people lose sight of the fact that a reasonable accommodation for a person who needs it makes the situation possible and that it is not necessarily designed to make the situation easier.
When I tell you my leg feels like it’s facing the wrong direction and just drags along like a dead tree stump, believe me. And when I’m standing there afraid my leg may not continue to hold me up, believe me. And when I have to fight with absence management companies and agree to policies that allow me to take unpaid leave in accordance with the conditions approved by the absence management company, because my employer will penalize me if I continue working and meet less than 100% of their expectation… all of that causes me stress.
And I have a neurological condition that prevents my brain from telling my lower body to relax. Do you know what happens then? My discomfort gets worse. It is a big decision for me to tap out of work and use my intermittent leave. I’m losing my job in a little more than six weeks. I have no paid time off because I use it all for doctors appointments.
And to receive an email before I even get home that implies I’ve abused my leave is infuriating. My boss told me to stop stressing so much, that we’ll figure it out. His boss encouraged me to redo the forms again because she doesn’t want my employer to have any reason to question my productivity or attendance. She also doesn’t want me to risk losing my meager severance.
The claims examiner never sent me a new form. I imagine he or she posted it to my file in the app. Because while all warnings and denials come to my personal email, good news and important documents seem to appear in the app with no acknowledgement.
But being me, I kept a blank from last time. I sent that to my primary care physician’s office with a note that I could fill it out over the weekend and drop it off on Monday. Because I don’t want them to have extra work. My doctor’s assistant said that would be good.
And it turns out– I saved a previous form that I modified on Kami. I changed the dates and fixed the offending question and submitted it electronically to the doctor’s office a few minutes ago. I’m emotionally drained and the whole experience has me drained.
Five Tips if you are dealing with medical paperwork & paper pushers
Keep extra blank copies. When you receive a document, try to get an electronic copy and a print copy. Obviously, if you have an electronic copy, you can print one. Print a blank copy and set it aside for your medical provider. Before you interact with an electronic copy, duplicate it. That way if you make a mistake or someone loses something you don’t need anyone’s help to get another copy.
Warn the provider. Call the office or use your electronic patient portal. I had my first intermittent leave form filled out by my neurologist, but had to pay a $25 fee and it took two weeks. The second time (and the third time and now the fourth time) I asked my primary care physician. I know from past experience, he fills it out with me and doesn’t report it to the office so I don’t get charged the fee. Ask if the provider would prefer you book an appointment so he/she can evaluate you, if you can email, mail or hand deliver a copy.
Do as much as you can yourself. At this point, I discuss a lot of these things in the patient portal via “ask a non-urgent medical question” to my doctor, which I know is read by his assistant. I literally start with “This message is for X. I apologize for another paperwork request, but my employer is giving me trouble again.” I send a form I filled out (except for the doctor’s name, date and signature of course) AND a copy of the blank form with the notation “in case my responses are not accurate, hopefully I did not misspeak”). On paper forms, I use post-it notes to direct the doctor to the actual medical stuff.
Record the answers. Part of the reason I can fill out most of these forms is because I keep and file the forms. So I use the doctor’s previous answers and update as needed. That way you sound like your doctor, because you are using your doctor’s language.
Keep copies. I always ask that they leave me a copy at the front desk so I can pick it up. I always point out to them this is not to check up on my physician, but to make sure no paperwork gets lost in the system. I have experienced several instances where the absense management company mislaid a fax, then changed my examiner, who never received a second fax which meant I was mired in paperwork for a month trying to get one of my short-term disability payments. If they give me a copy, I scan it and upload it to them directly, either my email or whatever the primary interface is. And if they lose it, I can email the scans again and not have to bother my doctor’s office.
Following up with the dietician
The dietician called me consistent. I did not lose any weight. I did not gain any weight. But my orthostatic hypotension has all but disappeared. But to maintain that, I need to consume three to four times the amount of salt I have been eating. And monitor my water intake. She perused my macro balance and my diet from the last month and really did call me consistent. So I guess the next step is to deal with my weight.
Speaking of weight, the nachos I had for dinner didn’t help.
Cool Ranch Doritoes
two slices organic American cheese
Sam’s Fresh Pineapple Salsa
Spicy Cuban Black Beans
Avocado Crema
Nutritional Yeast
600 calories. 20 grams protein.
Maybe tomorrow I’ll tell you how/why I missed the event at the Parkland Community Library. Maybe tomorrow will be smoother.
Not The Matrix. As in the movies. The absence management company.
I have an intermittent FMLA leave that I use when my body can’t tolerate my job. I thought, after having two different doctors fill it out at least three times (yes, I lost count) that I was approved for 40 hours a month of leave. Now, not understanding that is probably my fault.
But the curt paper pusher that told me I had 15 days to submit new paperwork could have been more patient. Apparently, my leave only entitles me to ONE episode per month of UP TO 40 hours. I called out sick in mid July and left work ninety minutes early today– so that 9.5 hours is not allowed because it’s in two episodes not one.
This is the type of bullshit one has to deal with when you try to advocate for yourself in an able-bodied world.
My hip has been inflamed– at least that’s what my darling chiropractor says, I say it feels crooked and like I’m dragging around a tree trunk– for several days now and getting progressively worse. So when my numbers slipped down to 97% today I tapped out, in part because of discomfort but also because the discomfort was causing me to fall behind and if I fall behind I will be penalized.
And the concern becomes: if I end up “not fully performing” in my end days, will I lose my severance?
But these are all my thoughts at the end of the day. At the beginning of the day I had to release my cat Fog from a crate and package a fecal sample for the vet. He has worms. I know it. I see it. As a cat rescue worker, I had the first medicine of defense, Pyrantel, but that didn’t work so he might have a tapeworm (that comes from ingesting a flea) and that requires Drontal which I don’t have. I think Touch of Grey (one of the two remaining fosters) might have worms, too.
Southern Candy didn’t come to work today for her own health reasons which had a friend and I ready to send out search and rescue dogs.
And Gayle, my friend and the art director, had eye surgery today which was pretty serious stuff but she texted that she can see so all is well so far.
Meanwhile, my neurologist responded to a message I had sent during her vacation and now she wants me to go for a urine test– but no one seems to know where I can go. And I don’t have time to go. So, if I have to go for a urine test, I thought I’d check with my doctor and see if I need other tests before my upcoming physical. They ended up ordering a urine test because the neurologist didn’t yet. But they missed the part about the other tests.
Now we’re all confused.
My neurologist is afraid I have some sort of UTI, which I think I’ve only had one of those in my entire almost-fifty-year life and I remember pain being part of that equation. Why they think I might have a UTI contributing to my issues I don’t know.
But there’s just too many things I need to figure out and organize. And I’m mentally and physically exhausted by it all.
The questions become:
Why must organizing care be so complicated?
Why do employers make health-related issues such a hoop-jumping process?
It is 4:38 a.m. and I’m drinking dark roast coffee, double caffeinated, and thinking. I gave myself permission this week– despite being behind on publisher-related business– to work on my own novel, the fourth volume of the Fashion and Fiends series, Road Trip. I’m about one-quarter through the second draft, which is where the bones of a story usually beefs up and becomes what the reader might recognize as a full-fledged book.
Every day, despite whatever struggles have me in their grasp, I look for beauty in the moment and the world rarely disappoints me. But ever since learning my day job, Stitch Fix, is closing our warehouse and my end date is September 15, the blend of anxiety, stress and hope is taking a toll on my medical and physical health.
The dietician is right. I need more sleep and I need more salt. I had been on the path for some weight loss but the crushing heat and… everything?… has led to a tendency toward snacking again. First with almonds, then an evening cocktail. Sunday night I didn’t have the strength to eat a proper dinner so I had some nuts and some peanut butter pretzels in measured portions, and then a single serve bag of potato chips because I still felt weak and my sodium levels for the day were still garbage. And at that point I finished off the brownies. And last night, I skipped the gym because my joints were screaming and my trainer picked up a cold at work. So, I started with a nice decent, 100-calorie portion of Ritter Sport chocolate stuffed with raspberry rose filling and ate the whole damn bar.
I am pressed for the time to care for myself properly. I lack the financial stability to work less or even to pursue treatments that might help. I’m not “disabled enough” for government support and it’s hard to be in this vague middle zone.
And that doesn’t just apply to people with health issues. It’s hard to be older in our society. It’s hard to be a working parent, and perhaps harder to be a stay-at-home one because so many people either resent you for being able to do that (or don’t think about the sacrifices you make to do it) or look down at you for gaps in your professional resume.
It’s hard to balance your dreams with your job, because despite respect for the enterprising spirit, succeeding in business– especially a small one without capital or experienced backers– is hard. It’s hard to be young. It’s hard to be poor. It’s hard to be uneducated.
That’s one good thing about a mass facility shut down like the Stitch Fix Bizzy Hizzy. We can also talk about how hard it is, how sad we are, and how so much of this whole situation just sucks.
So, I hope today is a good day. Or at least better than yesterday. Because yesterday was so hard I almost cried at my station, table 18 in women’s QC. The humidity in the warehouse was stifling. I couldn’t keep up– in part because my support team did not meet my accommodation’s 100%. There were four people on the support team. One did he best but didn’t normally do that work and it took him half the shift to remember my accommodations. Then, due to his physical conditions, he didn’t always get all the items for me. I know he didn’t see them.
Another person just didn’t do them. This person tends to skip them, yet does them reliably for another person who has asked for the same accommodations as mine for a temporary situation. I worked next to this person the last time she was in this situation, and she managed to do all her work with an hour to spare and now she spends a lot of time in the bathroom and wandering around talking to people. She’s even made comments about my work performance.
Which makes me ask, to no one of course because who wants to be that jerk, if the point of reasonable accommodations is to allow a worker with a disability to perform at the same level as an employee with no such limitations, why are others given the same accommodations as me but yet have time to spend playing on their phone (I have seen so much TikTok), having long conversations not even at their stations, and slipping into the breakroom for extra rest?
I was told I could do what I needed to do as long as I met my numbers. Many of these other people are high performers who are very good at their job. I am also good at my job, but my body just cannot bend and move with expediency. So, I have to spend my “bad days” working as hard as I can and pushing until my joints scream to maintain numbers, because I cannot use my medical leave unless my numbers are firmly at 100% or I will be penalized, a.k.a written up and put on a probation of sorts. I worked so hard yesterday… my numbers hovered at 98% most of the day, so I couldn’t even use my approved medical leave.
That hurt mentally and physically.
When I first received my accommodations, I was placed at table 18 at the back of the line so the support team could leave me all the boxes coming out of the refix department (work that needed to be done over for one reason or another) and then share that work with anyone else who might have similar needs.
That stopped. I was told at first it was because there wasn’t enough work. Then it was because they were afraid I couldn’t finish it all. But I’m really thinking it’s because the other workers complained. And I wouldn’t care– but I’m struggling. And it’d be really nice to be able to go to work without wondering what I will endure and how much it will hurt.
And for the record– I usually do between 105% and 110% when my accommodations are met.
And I only got accommodations after the company switched from a weekly performance average to a daily accounting. I typically meet 100% per week, but usually once a week or so, I can only hit 95%. So after two years and several shift changes, my employer changed how I had to do my job. I used to be able to do it without accommodation.
Last night, after the representative from Susquehanna Service Dogs left, The Teenager and I went to Taco Bell because it was late and I was famished. Despite eating my meal and half of the teenagers– somehow I woke this morning extremely lightheaded and with a blood pressure of 110/60. The issue did not resolve until 5 hours later.
When we settled into the house last night, I noticed a wrapper on the floor.
“Hey, when did you get Nutter Butters?” I asked the Teenager.
Apparently, the dog had stolen them and eaten most of the pack. The dog just looked at us guiltily and wagged her tail.
And we had bought her a cheesy roll at Taco Bell.
I told some leads and supervisors about my service dog approval at work today and then when those closest to me had heard the news from me, I sent an official email.
It’s not my most eloquent work, because I’m utterly exhausted. It says, “I have been placed on the list for a service dog. It’s about a three year wait because they raise a puppy with my input for me. I don’t know what the next three years will bring— but regardless of whether I still work here or move on, I would like to initiate a conversation about whether a service dog would be considered a reasonable accommodation. Legally, it is considered reasonable if it helps me with my disability while at work, does not put any person or company interest in danger, and if the dog would be safe and not exposed to danger for its own welfare. The dog could help prevent falls and help me get clothes and other items out of the cart and off the floor.
We have a couple years to pursue this conversation and I have 2-3 years to raise the $5,000 to pay for the dog. So to have that investment pay off, I want to bring the dog to work.Also I am working with Susquehanna Service Dogs which is a very reputable and supportive program.”
One of the other people at work asked me what I would name the dog. I pointed out that I think financial donors get to name the puppies and so once I met my puppy and learned its name I would probably develop a nickname for it. He wants to know the potential nicknames.
I haven’t named a dog since the late 1970s. Preschooler me named our Old English sheep dog mutt “Cheezie” because she liked cheese.
And a local professional offered me a discount on his services so that I could use the extra funds to put aside for my service dog. That was super kind, and just goes to show that when you walk in the world with kindness and try to support those who support your community, that the karma comes back.
I came home from work and The Teenager had planted my flower from Southern Candy, exactly as I envisioned it.
I did some work for the publishing company, drank a cup of coffee and headed to the gym since I missed Wednesday having fallen asleep at 6 p.m. Andrew promised to go easy on me, because lately my blood pressure is high, my heart rate is low, and my blood oxygen keeps dipping to 94%.
I had a great workout, and even made it home without a fall or incident.
I shared my basic granola formula with Andrew, made salmon and couscous for dinner, and finished the gummy bears with The Teenager.
Being that it’s Friday night, I’m up a little late as The Teenager and I were talking about service dog gear, Gunnar kennels, and ADA service dog rule cards.
Then I came up to take my shower and Opie shot out of my room and Louise followed him. Louise is the tripod foster from Feline Urban Rescue and Rehab scheduled for adoption June 10. She hasn’t voluntarily left my room since I worked second shift. When the house was quiet at 1 a.m. she would normally follow me to the bathroom.
Although I have not received the official email, the representative of Susquehanna Service Dogs who came to tour my home today gave me the verbal confirmation that I will soon be on the waiting list for a mobility and balance dog. I’m just about one year in to the four year process, and the representative confirmed that it will be 2-3 more years until I receive a dog.
But that’s good as I have to pay off some debt and save the $5,000 to pay for the dog.
From what I understand of the process, I will spend some more time working with dogs so that the organization can evaluate exactly what I need from a working dog companion. I will meet puppies when my name gets further up the list, and eventually one puppy will bond with me and they’ll send that puppy to a puppy raiser for basic training and then it will complete its specialized training with Susquehanna Service Dogs.
When that dog turns two, a vet will evaluate him/her to make sure its joints and health are adequate for mobility work.
Then I’ll spend several weeks training with the dog before bringing him/her home.
I think by the end of the visit with us, the representative of Susquehanna Service Dogs might have been afraid we were going to pull even more animals out of some random places.
The teenager did a great job explaining all of her animal training techniques and procedures. Even if she did babble a little due to CVS running out of her ADHD meds and her forgetting her hearing aids… but the representative of Susquehanna Service Dogs was polite, loves cats, couldn’t believe how nice our neighbor was to let us use her fenced in yard, and seemed genuinely appreciative of The Teenager’s creative ingenuity regarding household problems.
I have no doctor appointments, nor tests, for the next month. It’s been three months and a lot of professionals later… with no official diagnosis but many clues. And I’m okay with clues. The tilt table study, as I thought, came back normal so I don’t have POTS and that is good news. My symptoms share some similarities with POTS, but I’ve never fainted so there’s that. Smug little doctor man was right, but he could have been less dismissive about it.
The lovely hatch pattern on my shoulder from my fall Monday is healing nicely and I don’t seem to have any more permanent damage from it. So that’s more good news.
I’ve been keeping up with my metrics at work, but my body has felt very awkward about it.
Today I am scheduled for a home visit from Susquehanna Service Dogs, and the teenager has been working hard not only on decluttering the house but also cleaning. I intended to help more, but I came home from the neurovascular appointment yesterday, canceled the gym, took a shower and went to bed without dinner.
I slept more than nine hours. And I noticed at the doctor’s office my temperature was 98.3, which is actually high for me as I am usually around 97-point-something. I checked my watch and sure enough my temperature has been steadily creeping upward, but so has the sunshine and heat outside.
Regardless, I wasted last night by spending it cuddled with Louise instead of accomplishing anything. I knew I should have stopped for coffee on the way home.
The neurologist I visited yesterday was located in the Doctor’s Pavilion at the hospital, recommended by my neurologist/physiatrist, to consult with me about my aneurysm. It was a tiny office on the sixth floor of the building with a list of doctors and physicians assistants that had to be thirty people long. The waiting room was also small, and like a good patient, I arrived at 1:50 p.m. as they asked me to be there by 2 p.m. for my 2:15 p.m. appointment. And by some strange coincidence, I found a very convenient parking space.
I had also completed all my paperwork, confirmation and check-in online. They had me in the waiting room by 1:52 p.m. And despite the fact that I had a very compelling brand new ebook on my phone, The 8-Ball Magic of Suzie Q by Jody J. Sperling, I was way too exhausted and a tad too lightheaded to read it.
Instead, I people watched. As the small waiting room grew more and more crowded. A woman in a wheelchair that didn’t fit in the actual seating area. Her caretaker. A thin woman with bronze skin who didn’t look up and had a cane. A woman with bold tattoos who argued in Spanish with a burly man who spoke on his red iPhone once she left for her appointment. (She appeared to be the only one close to my age.) A large African American man whose accent revealed he may have had cognitive issues either from a congenital disability or a stroke– I was in a neurologist’s office waiting for a neurovascular assessment. And several more who arrived as my name was called. It was very claustrophobic.
My medical assistant introduced herself as Franky, while her nametag revealed her full name was Francesca. She said she loved my name and said it was her brother’s name. My name harkens back to my birth story, so I always experience a pang of weird sensation when someone mentions it. It’s a mix of gratefulness to be alive and also a split second decision of what do I keep to myself and what do I share.
I usually keep to myself.
Franky warned me that my providers were running behind and that they probably would not arrived until 2:40 p.m. and if they arrived later than that, she would check on me. I spent the next half hour staring out the window, and studying the models of spines. Without touching of course.
By physician’s assistant arrived at 3 p.m. and used a lot of big words, showed me an image of my aneurysm (which is on the vessel between my left eye and my nose) and explained our plan of monitoring this tiny balloon of blood in my brain. (My phrase, not hers. I don’t know her big words.)
As long as the right side of my body doesn’t suddenly experience numbness or other hemiplegia (that’s my word– I know that one from cerebral palsy lingo) or as long as I don’t start experience the worst headaches I’ve ever experienced in my life, I’m good. With a less than 1% chance per year of something happening. But should either of those things happen, I am to visit the ER immediately.
After a thorough neurological exam, I headed home, leaving the hospital around 3:30 p.m. I don’t normally drive the highways at that time, and since the Lehigh Valley has so many medical professionals it seems the 3 p.m. time has a ridiculous amount of traffic. And I still can’t believe the number of people who cannot merge. You can tell from their driving that they are terrified.
Here’s hoping I can stay awake past 6:30 p.m. tonight.
Despite waking yesterday 15 minutes before my alarm and falling asleep face down in my pillow as I tried to lift my phone off my desk to start my day, yesterday started as a decent day. It was slow, and everything seemed to annoy me. My body hurt, my heart rate and blood pressure seemed off, but my work metrics were good. Too good.
I was very thirsty all day, and ended up stepping away from my station three times during the day to use the restroom– which is not me– but my current symptoms include not being able to tell how urgent the signal to urinate is so waiting too long or not responding immediately might result in an uncomfortable outcome.
I returned to eating “real food” after a weekend of salty and sweet treats for my birthday, which made my body feel generally bloated and sluggish but had stabilized some of my postural issues.
And my hand, the one where the medical professional had done an exploratory IV last week, turned multiple colors that didn’t exist there over the weekend.
The coffee shop I had selected to meet Natalie Lowell of Exquisite Page turned out to be closed on Monday, as was my second choice, so she suggested the old familiar Terra Cafe. I had a lovely London Fog and the discussion flowed easily.
I learned along the way to the cafe that the Meet-and-Greet scheduled for FURR Louise for June 10 was actually a sight-unseen adoption, which makes me nervous with special needs cats and this one has been in my bedroom for two years and sleeping in my arms at night for at least six months.
I ate a small snack. From there I went to the gym, where Andrew– despite our schedules keeping us apart for a week– put me through a brutal workout, which really wasn’t that brutal but it felt brutal, reinforcing the idea that maybe my recent health problems are just a ramification of being 25 pounds overweight and out-of-shape.
And then I had a good old-fashioned fall on the way home. The kind that scraped my hands and bruised my thigh and chewed up the flesh of my shoulder. After a conversation with my Apple Watch, (“Looks like you had a hard fall.” “I fell, but I’m okay.”) I headed home, my pride more battered than anything else.
The Teenager made an enjoyable dinner and I had a Hostess cupcake. I could have finished the strawberry cream puffs from Sheetz. Those were surprisingly amazing.
By the time I took my shower, my wounds stung and my left hand was trembling. My heart rate and heart rate variability were low, my blood oxygen was 97% and my blood pressure was high. I decided to write a small blog entry, but when I opened my computer I saw a message from Gayle.
The content led me to believe that I sent her the wrong edited file of Larry Sceurman’s Coffee in the Morning, and so I opted to go to bed. When I woke this morning, I had received the truest of all motivational messages from Gayle.
DO NOT SECOND GUESS YOURSELF
So when I get home from work today, I’ll have to check the file. When I have more wits about me.
While normally my self-confidence wavers, Gayle’s right. I do not second guess myself. I move forward often boldly in a direction without worrying about the consequences.
I’m not sure I feel better today. That remains to be seen. I had strange dreams last night. A toilet falling over while I was using it. Having unexpected and messy female troubles. And my favorite– sitting next to my father after dinner at the table as we always did. He would be smoking his cigarettes and perhaps having a cup of coffee. The Teenager and my stepmom were sharing cheesecake as if nothing were wrong, and not offering me any. And then I realized that my father is dead, and that The Teenager and my stepmom didn’t see him. He was there just for me.
And once I realized that, he was gone, and all I had left in me was to weep.
I had fallen alseep last night with tears in my eyes. And I woke with Louise in my arms and tears in my eyes again, but this time, with the strength to face a new day.
Angel Ackerman 