The trip to Los Angeles didn’t happen. I’m going to leave it at that. I’m applying the funds for the ticket to fly back home for a two-week stay. I still owed the airline money, but thankfully it was less than sixty dollars. As usual, the dates for my annual visit correlate with those of the Minnesota State Fair. Instead of going to Los Angeles, I drove to Orlando. I basically stayed in the hotel room all day, went to the pool in the afternoon, and enjoyed eating a lot of new food in the evening. In the process, I wrote many reviews and shared my pictures on Yelp. I also drank too much and got sick because tequila is gross and one sip of that nasty substance is all it takes to make me ill — proof that it doesn’t matter how much watermelon there was in that margarita, tequila and I do not mix well. Going to the pool was one of the first times recently where I didn’t give any fucks about what people thought about me. There were those lookers but I didn’t let them get to me.
As the days approach to my departure for my home, I’m reminded of many things I miss. I miss bland food that I can’t find replacements for down here. I’ll probably buy a couple half-baked pizzas and freeze them, just so I can enjoy them within the first few days of coming back. (Seriously, I will.) Frankie’s. Fish sliders. Oyster wings. Jucy Lucy. Clive’s. Jin’s. Wild rice soup with ham. Beer cheese soup. Caramel roll. Walleye! Walleye!! Walleye!!! This list of food doesn’t include what I get at the fair. I thought I may return back heavier, but after overeating for a week in Orlando, I still haven’t gained. I stepped on the scale for the first time in a month because I was sick of someone telling me what I can and can’t do to my body. (In a passive-aggressive voice: I get it, you hate fat people and you’re changing yourself, but you don’t need to go and shit on everyone else.) I’m perfectly fine with the number because it’s just a number. I feel great!
But then there’s the part of me that says, “I’m in trouble.” I have an excess amount of energy which only means one thing: I’m manic. Have I ever voluntarily wanted to clean the whole apartment? (The answer is no.) I can’t sleep. I’m moving around way too much. (OK, this shouldn’t be a thing but it is usual for me.) Next Wednesday can’t come soon enough. The following weeks after won’t either. It’s not necessarily a bad thing, I just don’t like the symptoms. It’s incredibly hard to describe to someone how I feel if they’ve never experienced the same thing.
My major problem happened suddenly on December 31, 2017. I left the apartment to pick up lunch. When I made it down the stairs I was in some pain and thought it was something I could push through. Once seated in my car, I knew something was definitely wrong. I called the local emergency room and was talking with the triage nurse to get me pre-registered. I was placed on a brief hold and was told I should call 911 due to my symptoms. Not wanting to do that immediately, I called my mom who suggested it was probably for the best. I called 911 and the dispatcher thought I had low blood glucose, which wasn’t the case. My major complaint was hip pain. By this time, the pain had gotten so bad that any movement made things worse. I was taken to the crappy hospital, by my choice, which I won’t name. The ride was horrific on my pain. Every little bump in the road made me scream on the inside. I was basically frozen in one position trying to prevent pain.
Once at the hospital, I was assigned to a room, which was still dirty. There were blood droplets on the floor near the corner of the room. The dirty sheets were removed from the gurney and replaced, so I know the room hadn’t been properly cleaned between patients. I was asked to roll from one gurney to the other and it was painful. I then asked if I was in a good position because I had no intention of moving unless absolutely necessary. The doctor had to do a rectal exam to make sure I didn’t have an emergency situation with nerves, and then it was thought my pain was caused by a bladder infection. The nurse asked me to use the restroom but I told her I wouldn’t be able to go and I just asked them to use a catheter. This is where things got gross. I wasn’t prepped properly before the catheter was inserted, so I worried about a possible infection. (Thank goodness I didn’t get one.) I used that opportunity to finish urinating into a bedpan. The nurse said to call when finished, which I did, three times. I was sitting on the bedpan for over an hour before I was assisted with the removal. The nurse spilled urine onto the sheets, then poured the contents of the bedpan into the hand washing sink. The nurse was able to change my sheets without me having to move much, but threw the used linens on the floor instead of putting them in the used linens bin.
So, as you can see, these safety and cleanliness issues made me doubt this hospital. I’ll get back to that later. Later in the evening I was told I didn’t have an infection so I had an MRI done (without contrast) and the doctor said I had a pinched nerve. The MRI without contrast can’t distinguish between old scar tissue from my previous surgery and what is considered normal.
My mom arrived to help me during the first week of January. During the second week of January I left the house for my second MRI with contrast so the doctor could get a better picture at what they were looking at. The ride there was fine, but the minute I got out of the car and tried to walk to the clinic, I couldn’t. I took a step or two and just kind of bent at my knees trying to gather strength for another two steps. I was trying my hardest to be a “big girl” and not ask for a wheelchair. A man and his son must have seen my mom and I in the parking lot because he comes out and gives me a wheelchair. In my mind, I would rather put up with small steps than sitting. The sitting hurt, and the minute I got inside I stood up and leaned on the check-in disk and apologized to the receptionist because I was literally in her face while I was in this position. I then got as comfortable as I could and lied on a wide chair before having to get back into the wheelchair to be wheeled to the MRI. There was a slight delay and I couldn’t take the pain of sitting so I had my mom push a bunch of chairs together and I lied on my stomach. The technicians were worried about me. They could clearly tell I was in pain and I said I would be fine during the scan because I get most comfort while lying down.
Just like the first scan, I was taking the noises I heard from the scanner and made my own music. I think at some point I must have been audible since the technician broke in a few times to ask me if I was doing OK. Yes, I was doing great! I didn’t want time to pass because I was surprisingly comfortable during the scan. Since that visit, each day I had to leave the house, I had a mindset of, “Just think! One less visit that needed to be done and I will be good as new before I know it.”
If only I knew it was going to be that easy.
A week after the second MRI scan, I had a follow-up to discuss the results. I called the clinic and told them I was in so much pain that I couldn’t make the visit and asked if they could do the consult over the phone. The PA-C was helpful and told me the next step would be to meet with the surgeon to discuss treatment. That appointment was made for the third week in January. I met with the surgeon, just to be told to meet with a different surgeon and to get an epidural steroid injection that my insurance would require before surgery would be considered for coverage. I was upset that I had to meet with the surgeon just to have to meet with another one down the road. I had my spinal epidural performed in early February. Surprise! It didn’t work. The two I had years prior never worked, the second of which made things worse.
It’s now February 16 and I’m meeting with the surgeon. He says I will make a great candidate for surgery, albeit higher risk due to obesity, and that surgery should help me immensely. Great! Surgery is scheduled for late February. During my pre-op physical, the anesthesiologist didn’t have any concerns. However, later that day, I got a call from my surgeon saying my A1C was too high and that I would have to visit my endocrinologist to get that number to an unrealistic number before surgery could be performed. I met with my endocrinologist, which my mom also wanted to confirm as being a bitch, yelled at me for being out of control and blah, blah blah. Let me just say that when you don’t have anything to live for, you don’t take care of yourself. I mean really. Things were awful. Lowest of the low. If I were able bodied I would have definitely checked myself into the behavioral health hospital. I give my insulin four weeks to make things better, get another pre-op physical, and make extra clear that I don’t want another repeat of last time. Again, I was reassured that things looked fine and there didn’t seem any reason why I wouldn’t be able to have surgery. Unfortunately, that visit had me extremely pissed off. My mom drove me 40 minutes to the hospital, just to have a nose swab performed.
March 29, surgery day has arrived. I get to the hospital, am checked in, put into a gown, compression stockings, back prepped and ready to go. Then the anesthesiologist asked me questions and her body language seemed off. After she left the room, I started to cry and said to my mom, “I thought she was going to say no.” A few minutes later, the surgeon comes in and says he can’t do surgery because I could die. I wanted to tell him I didn’t care because I had absolutely no life and was living 23 hours and 50 minutes of each day in bed. The surgeon, using his special words, suggested I get “that other surgery” because it would help me in the long term. He was referring to bariatric surgery. He told me I needed to get up and move around more. I told him the pain was so bad that I couldn’t do anything. He told me that I should hop around on my one good leg because my pinched nerve was “just a pinched nerve” and that I shouldn’t be having so many symptoms with it. “100 years ago people with this pain would have had to live with it.” That’s great, but this isn’t 100 years ago and medicine has advanced.
I was furious. When my mom and I got home, she called the hospital on my behalf because she was worried about the quality of care I received. Mainly the fact that it was expected I may have had a pulmonary embolism and the hospital let me walk out the door. Later that day I called a different clinic and had my second opinion scheduled for two weeks later. The following Monday, I called the surgeon to ask what needed to be done so I could have surgery performed and I was told the surgeon didn’t think I was a good candidate and didn’t think the surgery would help me at all. I was effectively dismissed from the clinic with a referral to a pain specialist. I should make note that at this time, I was taking 10mg hydrocodone every four hours like clockwork. On Thursday that week, I had an ultrasound scheduled to check for blood clots in my legs, which none were found.
Second opinion day arrived and the new surgeon was like, sure, yeah, I will do surgery. I made it clear that under normal circumstances I wouldn’t jump at surgery, but I had run out of options. I needed a pre-op along with clearance from my primary care physician. I made a visit with my primary care doctor a week later and she referred me to my pulmonologist. She said if my pulmonologist thought I was clear for surgery, she would OK me too. The pre-op at the hospital was one of the worst experiences in my life. Remember my emergency visit? Same hospital. I was worried then, I was worried now, and I was certainly worried for the future! I politely asked for a gurney and the nurse said, “No, you don’t want one of those, it won’t be as comfortable.” I was screaming pain in my head because I was given a crappy chair in which only the legs would go flat. So here I am, curled up in a ball at the bottom of a chair, in extreme pain. The visit lasted about four hours. After the visit I had to go to radiology. Again, I’d rather walk than sit, so the walk was very, very long.
But I made it! “One more visit,” I thought to myself. The visit to my pulmonologist would be my last time leaving the house before surgery and I was very, very thankful. Unfortunately, that visit was almost ruined by bad information given to me by the scheduling staff. I had to have an x-ray of my chest performed before my visit upstairs. What I wasn’t told is that even though I had an “appointment” for an x-ray, due to it being in an urgent care clinic, it was first come, first served. I was nearly 30 minutes late for my pulmonology appointment. My mom was my advocate, letting them know that this visit was absolutely necessary to my well-being. Thankfully disasters were avoided and my pulmonologist cleared me for surgery in the sense that I would still be higher risk, but nothing too extreme should happen to me. I then called my primary care doctor to let her know to contact my surgeon that everything was great and I would be ready to go.
I had my nerve decompression surgery on April 27. Initially worried, the staff I interacted with that day were friendly and professional. I guess that’s a good reason to be the first patients of the day? I get a clean hospital environment, a clear-headed surgeon and PA-C, and friendly nurses. I woke up after surgery and was initially combative. I remember the nurses holding me down and telling me I was out of surgery. I then remember having to cough a whole hell of a lot and the nurse was there every second with gauze so I could spit into it. I remember being wheeled to recovery and my mom turned the TV on to “Let’s Make a Deal.” The nurse said I had to be able to urinate before I’d be able to go home. I was scared of the pain. Finally my body gave in and told me I couldn’t hold it in any longer, so I called the nurse and she helped me to the edge of the bed. I started to cry because I was sitting for the first time in nearly five moths without pain. I then stood up and cried more. Happy tears. I used the bathroom and needed assistance with wiping and getting up, but I could walk and wash my hands on my own. I was crying. I was finally free of pain and felt happy for the first time in months. I’m crying as I write this because with all the setbacks I’ve had this year, I honestly didn’t know if the day would ever come.
I’m very thankful.
I’m now nearing four weeks of recovery. I’m hoping my surgeon can clear some restrictions for me during my follow-up on Thursday. Under the guidance of my therapist, I have filed a complaint against my former surgeon for quality of care and delayment of treatment.
What’s next for me? Hopefully a happier, newly-improved me!
Better late than never? I was able to snag a cheap flight home at the last minute, just three days before the state fair ended. I arrived on Friday (August 28) morning, had a day of rest, and my mom and I went to the fair on Saturday (August 29).
Mom also bought a bucket of Sweet Martha’s cookies. The cookies taste best fresh. Wouldn’t you know? They were all gone before I had a chance to freeze some and bring them back home. Mom and I spent the majority of the morning at the fair and returned home around 2 PM. Mom said she wouldn’t have stayed much longer than we did because it was getting a bit busy, even for her. “Old” me would have freaked out over the amount of people and I think that is a great sign that my medications are working properly.
Miss Lilli was being her usual self. The amount of time that passed since I last saw her wasn’t as long as previous times so she was happy to see me. You do not want this little girl to be mad at you. She will make your life much worse than these pictures document: photo bombing a selfie; walking on your snacks; and hogging the work area.
Mom would have bought me a plane ticket to visit anyway. Hurricane Irma had been predicted to move straight through Florida and up into the Carolinas. I would have been too busy to let Mom know that I would be safe, but being the only child, spoiled, and everything that goes with it …
I had a follow-up MRI scheduled for the day after I returned home. I received a call the day before saying my insurance declined to cover it. At the time I was upset and my medical team was ??? with communication about the next step. Later that day I get a call from rehabilitation to make an initial consultation appointment. Although confused, I made the appointment. I put two and two together, logged into the patient portal and read that I need six consecutive weeks of physical therapy (PT) before insurance will consider covering the MRI. I had my initial consultation two weeks ago and this week will be the first week of PT. I wish the process could be moved along more quickly because there’s something about maxing out benefits for the year and taking advantage of the system. I met my maximum in the spring when I was hospitalized in may for DKA. I was hoping it was going to be a quick in/out but I was there for at least five nights. By the time I was discharged, I wanted to wear long sleeves. I ended up blowing all my IVs resulting in unsightly bruises. My mom will be visiting in November. This will make a “record year” of family visits since I’ve moved down here. I think it is helpful for my mental health. I know after February, April, and September I felt renewed. I’m expecting no less for November.