As predicted at the end of my last post, I did not post at all last month because it was busy. Here is how my month went…
First up was the wedding weekend. On a Friday, we traveled from Illinois up to Iowa to attend a wedding on Saturday. We thought my body would behave better if I spent the day Saturday resting rather than traveling. At the wedding, I saw many people I haven’t seen since high school (9 years ago) which was fun. I didn’t take as many photos as I wish I had.
It was a gorgeous, Disney themed wedding at a country club, and as you can see, the bride looked the part of a princess. You may remember when I was doing a fundraiser and there was an article in the local paper – this is the kind lady who wrote it! If you’d like to check out her blog and excellent collection of short stories, click here.
The next day, we headed to Wisconsin for my college roommate’s wedding. Unfortunately, all the stimulants I had taken to attend the wedding the previous day meant I only slept 20 minutes the night before, but I didn’t care. Makeup hid my long night well, and I was excited to be there for her big day.
You may be wondering how I survived this weekend. In all honesty, I am wondering too. The best answer I can come up with is: a devoted husband, medication, good planning, and stubbornness. I refused to miss either wedding. I decided as long as I don’t throw up on either bride, simply being able to be present at both would count as a win! I made a packing list 2 weeks in advance and began packing a few days early. My husband did all the heavy lifting, the driving, and also thought to pack a cooler of ice packs and create me a bed in the backseat which helped A LOT.
Medication was the other hero of the weekend. Stimulants helped with fatigue, focus, and blood pressure. I had pain and nausea medications, medication to lower my heart rate, medication in case my blood pressure gets too high or low… you get the idea. Traveling with me makes traveling with a baby look like a breeze. I have been doing my medications a month at a time using this organizer, which made packing a bit easier, although I still need to pack my “emergency” medications.
After those two weddings and all the travel they entailed, I felt like death for a week, but that is to be expected. Aside from ordering items for my stepdaughter’s birthday, I rested so I would be able to make it to a cookout at my parents’ on the 10th. The day came, and I hitched a ride there with my uncle since my husband was working. Since I can’t get out much, I love car time with my family members. 🙂 Unbeknownst to me, my husband got off work early and surprised me by arriving at the same time I did. We had a great time celebrating my siblings, and my little cousin who might as well be a sibling.
After the party died down, we decided to try for a nuclear family photo, then a photo with all the “kids.” … “try” being the keyword here. My brother’s girlfriend fits right in with us weirdos.
The following week, it was time to hunker down and finally prepare for my September appointments. I was to see 4 doctors in the next 2.5 weeks, 3 of them new. New doctors are tough because I have no clue what they will and will not know about my conditions, what they will want to know, or what sort of records they’ll be interested in. I do my best to make an educated guess and put together a history for them, and sometimes even a timeline relevant to their specialty. I identify which articles I may need to give them for reference, and put those in a folder to have on hand if needed. I also do a little research to determine if there are any tests I would like to request, or conditions I want to ask about. This all ensures if I do not feel well during my appointment, the doctors will still have all the information they need.
Unfortunately, the past few weeks had drained me. I knew exactly what needed done, how to do it, and was set up to do it, but my brain simply refused to cooperate. One day, I sat there for hours with nothing more than one page of a “headache timeline” to show for it. With encouragement from my blog Facebook page, I got through it. In the following days, I churned out 3 quality histories.
Side note: If anyone has tips on a magical pillow or chair to position my arms and back perfectly to work on the laptop with my legs propped, please do share.
On Friday the 16th, we traveled up north to see an endocrinologist. My husband’s map app tried to save us time by taking us on this weird route through Chicago instead of staying on the tollways. It definitely wasn’t quicker, and there may or may not have been a period of time where I considered the merits of peeing in a bottle in the back of the car. After 3 hours in the car, I arrived at the location exactly when my appointment was about to start only to find an elevator out of order. While my husband parked the car, I climbed the three floors of stairs, stopping every so often when I was about to faint. I was thanking myself for all the prep work I had done since I knew my body would be angry for awhile. I finally arrived to my appointment, winded and about to pee my pants only to find there was a second elevator I could have used, and that the doctor was a little behind so I had plenty of time to visit the ladies’ room. 😀 You gotta laugh.
I know my doctor’s office panorama habit is a bit quirky. Someday, maybe I’ll make a giant mural where all the panoramas make one big picture. If I am being honest, I imagine the mural forming a middle finger because while I appreciate my medical team, I don’t enjoy my illnesses or spending hours each month in their offices.
- The anti-21-hydroxylase antibody, which I am very positive for, requires yearly testing of adrenal function which is done via an ACTH stimulation test.
- Regardless of previous “all clear” testing, each year there is a 20% chance of me developing adrenal insufficiency.
- To explain yearly versus lifetime risk: Imagine there is a particular number you have to roll with dice in order to get the condition
- lifetime chance = you roll the dice once in your life and your fate is decided
- yearly chance = you roll the dice each year and previous years’ “good rolls” do not impact this year’s roll
- She also said with this particular antibody, I could develop premature ovarian failure. However she cannot check my female hormones while I am taking hormonal birth control pills. At the time, I said no thanks because I’ve been on hormones for a decade and do not feel well when I am off of them. However, later that week I decided to go off of them so we would know what I am dealing with in terms of future fertility.
- She wanted to check all endocrine (pancreas, adrenal, thyroid, parathyroid, ovarian) function in case I am developing Polyglandular Autoimmune Syndrome. She also wanted to do a thorough thyroid workup since I have a family history of thyroid issues I have an impressive thyroid family history – Hashimoto’s, Graves, thyroid cancer.
- She initially seemed less than thrilled with looking through the history I had put together for her. I think what she didn’t realize at first is that while 8 pages of lists and charts may seem like a lot, they are all clearly labeled and it is saving her from looking through hundreds of pages of records. By the end, she thanked me and said there was no way she would have gotten all of my history during our appointment if I hadn’t organized it for her.
My parents met us at our house with my stepdaughter. I was even more excited than usual to see her because I had decorated for her birthday. I wrap her door differently each year, then we get a photo of her dressed for her party in front of it. This year, her theme was hula girls.
The following day was her birthday party. An enclosed space with a dozen children, family, a jump house, and a climbing wall may not have been precisely what the doctor ordered for the migraine that sprouted up from all the traveling the previous day, but it was still a lot of fun! Something good about always being sick is I have a lot of practice at not letting how I feel affect my enjoyment of things. Afterwards, E told me she had been famous for the day.
This brings us to Tuesday the 20th, I met a new neurologist. My autonomic neurologist is excellent, but I wanted someone closer to home to manage my headaches. I went in hoping he would be down to try Botox since alpha blockers, beta blockers, and gabapentin all were fails. When I arrived, I was impressed with the waiting room. I consider myself a bit of a connoisseur of medical office interior design, and this design made me feel as though I have a disease with a lot more funding than most neurological diseases get. 😀
The exam room was standard and fairly difficult to panorama.
- He was a fan of both the small neurology-oriented binder made just for him, as well as my Binder of Doom. I should write a whole blog post on the different types responses I get to the binders I bring in. 😀 When I am lucky, a doctor reacts with interest.
- He initially skimmed the 2 page neurological history I had written, which is normal. After the third time something he read made him ask a question, and before I could answer he realized was answered in the following written sentence, he said, “I think I am going to start at the beginning and read through.” I’ve spent years fine tuning how I write a history, and is nice to see signs it is paying off.
- He wasn’t sure if I could have Botox or if it was contraindicated, but said he would research it. My rheumatologist, geneticist, autonomic neurologist have all okayed it, but in the moment, I forgot.
- He wants to do an EMG and NCS since my new nerve pain behaves as though there are large fiber nerves involved and my last EMG was in 2014. This testing is going down next week.
- These tests evaluate for large fiber nerve issues. Most people with POTS have small fiber autonomic nerve issues, which this test cannot detect. EMGs are typically low yield tests, but if it show anything it will make getting IVIG much easier.
- To learn more about neuropathy, the different type of nerves, and all that, click here and scroll down to the heading “New Nerve Pain”
I woke up the following day feeling awful. I had a cold. Thanks to my extremely busy month and the cold, all of my autoimmune symptoms and autonomic symptoms were acting up at the same time. This means on top of the cold: fever, nausea, pre-syncope, headache, abdominal pain, tender lymph nodes, headache, skin sensitive to touch (including clothing). The symptoms may sound random, but when you have a systemic condition, any part of your body is fair game. Basically I felt as though I had strep throat, the flu, and a cold all the same time with some dizziness sprinkled on top. However, the worst part was A STUFFY NOSE. I would rather have all of the aforementioned symptoms than have a stuffy nose – that’s how much of a baby I am about them.
I was supposed to travel 2 hours north to see my geneticist the following day. He has a lonnnggggg wait list, so I did not want to cancel, but I did not see how I would be able to have a productive appointment. I called the office to see if they might know of someone with an appointment coming up who would want to trade. I was told not to come in because they don’t want to get and spread the cold, and was rescheduled. LOL
My Mom knows how much I hate a stuffy nose, and being the thoughtful lady she is, she sent me a koala. I recently told her I think a koala may be my spirit animal. Why? Well, they have trouble digesting the food they eat, which means they spend 18-22 hours a day sleeping. Thanks to autonomic neuropathy causing transient gastroparesis, I too have trouble digesting food and must rest in order to do so.
The cold passed and I recovered, which brought us to the last week of September and my final appointment, which was with an ophthalmologist. This was a local doctor who I was seeing to confirm I am simply a weirdo who developed myopia at the age of 26 after a lifetime of 15/20 vision. I developed myopia the same day as I got aseptic meningitis, and oddly, it varies in severity day to day. In an effort to sidestep adding a new doctor who would want all my medical records and such, I had my vision assessed earlier this year by an optometrist. I thought I was pretty clever, but alas, upon hearing about the myopia, my autonomic neurologist thought it would be wise to have my eyes checked out by a medical doctor.
It took several hours due to waiting. I am used to waiting, and as long as it is acknowledged, I don’t waste my energy on stressing about it. If I start feeling sick while waiting at an appointment, I usually ask for somewhere to lie flat. The bad thing about ophthalmology offices is there is nowhere to lie down. This meant my vampire-white feet looked like this due to the long wait:
Gross. I know. The fancy name for it is acrocyanosis. The doctor came in to find me sitting cross legged in the chair with my head tilted back and eyes closed, trying to calm my body down. He asked if I do yoga.
- The doctor knew what to check for Ehlers Danlos Syndrome, which was a pleasant surprise. I didn’t need the medical resource guide I had stashed away in my bag.
- He liked my ocular history timeline once he read it.
- There was nothing weird going on as far as he could tell aside from my eyes being dry. This is no surprise since I have Systemic Sjogren’s Syndrome.
- They had a device I had never seen for checking eye dryness called an osmometer. It looked intimidating, however it felt sort of like when I miss my eyelid while applying eyeliner, and turned out to be much more pleasant than sitting there with paper strips in my eyes for 5 minutes. It took two different nurses several tries to get enough tear to test.
Well, that brings us to the end of September. October has turned out to be another busy month so far. Fortunately, all of the busyness hasn’t been medical stuff; there has been a little socializing too. There has also been some progress – or at least the illusion of it – made on my IVIG appeal.
How is everyone else doing? I’ve heard of people who put a bead on a string with each medical appointment. I commemorate each appointment with a panorama – do you have a thing? Are there any medical topics I mentioned that you’d like to hear about in more detail?