It’s been a while since I’ve written, in this very public online journal of sorts that I’ve kept since 2006. A journal that has been the primary influence of improving my writing and reading skills beyond the rudimentary levels I was provided by my local public school system.
So much has changed since I last wrote. A disk in my back has decided to give me immense pain that only sleeping or laying in bed seems to resolve. A mountain of issues cropped up on my Jeep. My job has done a 180 on me, with two people resigning at this point, and I’ve had several computer jobs pop up on me.
Much like the Bowie song, I feel under pressure. Tremendous pressure.
About a month ago, while doing nothing out of the ordinary I seemed to have slipped or herniated a disk in my lower back.
Working at the school of medicine has it’s advantages, as I have a wealth of information at the ready. When this happened, I was meeting with one of my MD faculty members, assisting in the countless and newfound quirks in this new building.
After standing up from my desk, I began feeling an immense amount of pain in my lower back, of the burning kind. I continued on my way to meet with the faculty member, who noted that my back looked “too straight”. I think he was referring to my lumbar region.
The next day, the pain in my back was gone. Instead I had severe pains in my upper left thigh and hip when I put any weight on my left leg. It made me feel as if I needed a new hip. I could barely stand the pain. 2 MDs and a PHD (she writes the Anatomy text book) agreed, I had a slipped disk that was pinching a nerve. Located somewhere in the L4 or L5 region of my spine. Even sending me a handy-dandy graphic from her textbook.
I got on the horn with my primary care physician who got me in rather quickly. She prescribed me some oral steroids, and told me to call back in a week if I wasn’t feeling any better. The steroids definitely helped but the pain was not gone. I called her office after a week, and have yet to hear anything back.
On the recommendation of one of my MD faculty members, I then reached out to my Neurologist. I was able to get in rather quickly by seeing their nurse practitioner. She advised physical rehab and stated that I would be contacted regarding scheduling. I have still not heard anything.
I have been using my girlfriend’s TENS unit, and she ordered an inversion table which recently arrived. They are the only things that have provided any sort of relief.
Last Wednesday while at work, I stood up to go meet a faculty member for a session on familiarizing him with the new technology in our new building. That’s when it happened. My back started hurting tremendously. To the point where I laid down in the gurney that just happened to be in the classroom I was in.
For the rest of that day, it was just intense back pain. Of course it couldn’t stop there though. The next day, I began having intense pains in my left thigh whenever I would bear weight on both legs. This then proceeded to move to my hip.
Upon this movement, I reached out to my primary care physician and asked to get an appointment as soon as possible. They called me quite swiftly, and I was able to get an appointment the next Monday.
Meanwhile, I just laid around. Moving from bed to couch and vice versa. No OTC pain medications would help, so I did my best to keep from receiving the pain at all.
At my appointment, my doctor said the left side of my back was “very tight” when compared to the right. My blood pressure was through the roof too, at 150/110. She had me do bends, moving to the back or left resulted in levels of pain that I could not bear. She provided me with a prescription for steroids, and told me to call her if I was not better within a week.
Under this amount of pain, it has been impossible for me to physically go to work, I have done my best to do as many things remotely as possible. Working at a medical school, those I work for are understandable.
Here it is, late Thursday and the pain has subsided substantially. It is still there, but I no longer let out moans of pain uncontrollably when taking steps. I’m going to give it a go tomorrow and see how it goes. Right now is crunch time for me, taking a day off in August when you work in higher education is a bad thing.
If this pandemic did anything to me professionally, it showed me and many others how important the role of technology plays in our everyday lives in this abundantly interconnected world.
Many were given the opportunity to work from home. I did too, but many times I didn’t have a choice. I had to go to the office and take care of a situation.
Now, as we are starting to see real traction on the other side of this my responsibilities have been increased. Responsibilities that sometimes cannot be managed by a single person physically, as it’s impossible to be in multiple locations at a single time. My frustrations were just below the surface until I received an email newsletter that is sent to people in my division, UITS.
This email literally is talking about me
This was how I learned of this happening. I didn’t get an email from my manager, my director didn’t send an email to the department letting them know of this. There were 0 official communications on the subject.
Roughly a year ago my manager asked me how I felt about / if I think I could manage Nursing, but later on told me that Nursing wanted to keep with their current model.
Then about a month or so ago, my printer guy who has also been the IT person for Nursing told me that there was some plan to hire him under my department as the IT person for Nursing. He said that it was all hush hush and that nothing was official yet.
When I received that email however, it threw me into a fit of rage. In the last 6 months I have been named the “Lead IT Support Person” for an entire building and now, whether they want to admit it or not I have to support the entire School of Nursing. Even if we hire that guy, if something happens – the responsibility will fall directly on my shoulders.
So I did what I’m known for. I sent a long email to my director and manager stating my issues and my concerns. I don’t think my director fully understood – but my manager did. When I was young, such things would have gotten me fired from a position, which happened to me several times. But at IU, holding truth to power is many times embraced; and I for one appreciate that.
I’m appreciative for what I have, but I have had to navigate all of this with no increases in wages. IU suspended cost of living wages last year, but they are slated to begin again this year. I’m starting to feel that I’m in a similar spot as to the one I was in around 2017, when I learned that two people who I helped hire for positions based off of mine were earning 13k more a year than I was. It felt like a slap in the face.
All of this has led to costs for me personally, as my energy levels have plummeted. A typical day for me is to go to work and then lay in bed for most of the evening when I return home. Sleeping most of that time. The most recent revelation is that I am in a lot of pain doing small tasks, such as walking to my vehicle, standing up, etc. This pain lasts for hours after the event. I do not know what is going on with me; and it is seriously scaring me. I have reached out to my physicians and hope to do something to start mitigation of this by the time we leave for our first vacation in 2 years.
WARNING: This post will have details and images of a graphic nature.
I suffer, with countless others with an auto-immune disorder of the skin called Hidradenitis Suppurativa. This condition normally shows itself when a person enters puberty. It is passed to a person when one of their parents is a carrier. There are varying stages, but this condition never truly gets better. It’s more about mitigation.
At the time in the world when I was becoming an adult, my case of this was only getting worse. I was going to the ED at least once a month in unbearable pain. My own doctors could not figure out what was causing these painful boils that would appear and grow. They called them carbuncles.
This was when I was placed into a trap. The doctors didn’t know what to do and they couldn’t resolve my issues. This is when I was prescribed large amounts of opioid based pain medicines as if they were candy. It was common for me to have 500 pills on hand at a time. The medication didn’t resolve my issues; or relieve my pain however. It only put me in a state of intoxication. This was not how I wanted to live my life.
This was long before social media, I think even WebMD was fairly new at the time. It was hard to find answers on medical issues that were not mainstream. Almost impossible when there was no clear answer as to just what that issue was.
Insert the woman who I came to call Princess Patti. I first found her through a blog she wrote. In it she explained this health disorder and screams of “me too” rang out in my head. She sold little pins that said “HS” on them, and I bought one.
Patricia Jane Fiore
As social media platforms overtook the way people socialize in this world, Patti and I found each other again. She had created a group for people with this disorder, and it was then that my world was changed. I learned that I wasn’t the only one having issues receiving proper medical treatment. I discovered I wasn’t the only one who felt shameful about what this condition had done to my body, and the smells that emanated from the sores on me. I literally found an entire world filled with people JUST LIKE ME. It was liberating to say the least.
Always sweet, always loving. She was a girly girl who loved Paris, The Golden Girls, her Schnauzers and her family. Many called her mamma Patti, as she cared about them more than their own mothers did.
Over the years, she and I would become very close and then drift apart on a repeating cycle. She lived a complicated life, as did I. I had been through my discovery phase of all of this; she continued helping those just finding out, giving them the support and tools they needed to face this new world they didn’t sign up for.
HS Tattoo She Got. She was addicted to them afterwords.
Then I had a surgery to fix the scar for my Vagus Nerve Stimulator, and the world came crashing down. My case of HS (I will call it that for the rest of this post) became like a wildfire out of control. My problems were primarily located in my inner thighs but had now migrated to my underarms, almost overnight. It was devastating.
Patti had the worst case of HS I had ever seen before, and yes she shared images of her afflicted areas with me. She was able to turn her struggles and disasters into a strength for me.
Her HS had began in her vaginal/pelvic area and spread, the most common place for women to get it. At one point the doctors inserted a mesh implant; which wreaked all sorts of havoc on her. She almost lost one of her legs due to one of the surgeries she had. I don’t know if the implant or something else was the cause of, but she also had cancer at one point. That kept her from receiving many of the treatments that are now given to people – like me. She couldn’t have sexual relations like normal people do anymore, and she was constantly battling with Sepsis and other serious life threatening problems. Yet she persisted.
I was just going through our messages, and here’s one of note she said to me. “I think you’re a good man with great intentions , you’re a good person with a good heart and wants to do the right things.”
Here is the thing that troubles me however. According to the entire HS world, and a screenshot from her son (attained through a friend I met through her), she passed away due to a heart attack this week.
From her oldest son, a trusted source sent me this. I removed names to protect privacy.
I cannot find any documentation anywhere that such things are normally noted. Not the newspaper local to her area(s), nothing. While I do not doubt her son’s words, it’s hard for me to find closure. The state in which she lived has peculiar laws on public records, and I can only lend that to blame. She’s the kind of lady that I would have driven half way across the country to attend a funeral for. She made that much of a difference in my life and the life of others. I want to pay the greatest of respect to the woman she was and the woman she became. I want to show her family just how appreciative I am for sharing her with the world.
The saddest part to me is that just a couple of years ago, she was filmed for a production called “For the Hayters.” It was supposed to be on MTV, something I cannot confirm. There is a video on YouTube that I will share however. The title? “43 and Dying” It’s sad foreshadowing of what was to come that truly breaks my heart.
I honestly thought I would pass before she ever thought about going. As a community we have faced many deaths. Many suicides. There comes a point where a lot of people just cannot take the pain, take the internal torment any longer. I didn’t know any of those people; but it’s guaranteed that Patti did.
The community Patti built, the community I’m a part of is tattered and in pieces. All of our collective hearts are broken right now.
Your pain is over now, may you find some peace you weren’t able to find in this life. I will miss you forever and always, my Princess Patti.
Today I received my 2nd dose of the Pfizer Sars-Cov-2 vaccine.
The first dose gave me some really strange side effects, and I have planned the 2nd to give me the same if not more intense bodily reactions. So I took the rest of the week off work. Although I can never truly take off work.
I actually got dragged into a situation that happened in the new building. Numerous emails; missed phone calls; the whole 9 yards.
Then I laid down most of the day. It’s now 11:45pm.
I am proud to be part of the part of society that appreciates science and how it can positively impact the world.
With the pandemic in full force, I cancelled Thanksgiving and Christmas festivities with my aunt and uncle. My uncle said it was the first time in 60 years that he hadn’t came home. They are in their 70’s and I didn’t want to risk their health.
It’s commonly known that this and other coronaviruses can silently spread, as some people can be infected and contagious without even knowing. I have been careful, so has my girlfriend. But my daughter’s back and forth lifestyle finally caught up to us, and her.
I had her for almost a week around Christmas, but not including the day itself. It was that day that she spent with her mother, per our divorce decree.
The day after I returned my daughter to her mom, my ex wife texted me to inform me that her husband had been admitted to the hospital with double pneumonia caused by covid.
I was floored. She went onto say that he had been sick since the 18th of December. I was enraged. I demanded our daughter get a test, as she had obviously been exposed. Her mother refused. I offered to do all of the legwork and get her tested myself, she still kept up her stonewall tactics. Instead of continuing to argue with her, I called my attorney. By the time he called me back, she gave in and scheduled her to get a test.
The results came back, positive.
My daughter hadn’t shown any signs or symptoms of infection, sans a runny nose here and there or a sore throat. After the results came back however, she apparently got sick.
Then we started showing signs and symptoms ourselves. I felt very flu-like, but had no fever. My girlfriend however got what seemed to be a full onslaught of Covid symptoms. It seemed like she could barely breathe, and would get light headed after walking ten feet. We all immediately ordered tests, with all results being negative.
Then, in the middle of the day while sleeping, I heard a scream. It was her daughter. She had fallen down half a flight of stairs in my home. I instantly called 911, with VBFD paramedics responding within a minute. I wasn’t sure if the fall had broken anything or made any of her ongoing spinal issues worse. She spent the day in the ER, where they performed a series of tests. She turned out to be okay physically, but still well in the throngs of symptoms. I was concerned.
It’s been a couple of weeks since those events happened, and while she is still healing, she is significantly better now. I still worry about her though. I still haven’t seen my daughter since the weekend after Christmas. My ex wife started texting me again, and I told her that I want her to get another test before I see her again. She didn’t give much resistance, but still refuses to test her household. I don’t understand.
I miss my daughter, but I will never miss the onslaught of ways in which we have felt due to this exposure.
Last weekend my youngest daughter had a follow-up appointment with the IU School of Optometry about her eyes. They were concerned about her retinas, but hadn’t elaborated as to why. We found out that they were abnormally thin but not giving the usual symptoms. Stating the symptoms are that of someone with “egg shaped” eyes, which she doesn’t have.
Her vision is okay, but she has a prescription for reading and close visual activities at school primarily.
During the exam, they dilated her eyes and then took images of them. While I was not able to get direct copies, I was able to take photos of the photos. Years ago, I was able to take similar photos of my own eyes.
After our visit, they stated that they wanted to have a faculty conference to decide the next steps on the future of her eye health. That in itself frightened me as a parent. She’s only eleven years old, many eye issues cannot be cured sadly. I do not want her to have the weight of such a medical issue so early in life.
However, as someone who works for the IU School of Medicine I felt this issue had past the field of Optometry and entered the world of Ophthalmology. So I reached out to my contacts, receiving a response within an hour. That contact connected me to a Ophthalmologist, who connected me with a pediatric ophthalmologist. I sent the photos above to them.
Their rough diagnosis? Lattice Degeneration of the Retina. I of course started googling my heart out. It apparently happens to between 8 and 10 percent of the population, and can lead to retinal detachment but doesn’t necessarily mean it will happen. They asked I get a referral so records can be officially transferred. As soon as Optometry called me back, I did.
I worry about the future of my little girls eyes, but I feel safe knowing her dad can get the strength of an entire school of medicine behind her. We will have upcoming appointments in Indianapolis.
To quote my father, who said that after we had a car accident.
A week ago, a condition I’ve been dealing with reared it’s ugly head. It’s embarrassing to talk about, but I think those are the things that NEED to be discussed. That event brought on a concatenation of events that I’m still trying to heal from, both mentally and physically.
Well what is it? The condition, diagnosed through one of my own staff doctors at the school of medicine is called proctalgia fugax. I started having flares of this condition after going to a concert last year. I didn’t seek any treatment, as there are no real treatment options specifically for it.
While on the way home it started to increasingly become difficult to sit, as a burning pain seemed to become more and more intense in the area of my tailbone. It came to a point where I was forced to stop. I got out on an off ramp of the interstate to try to walk it off, but it was of no help. I then tried to lay down, no change. My girlfriend claims I passed out between walking it off and laying down, but I have no recollection of this.
From that point forward, this intense amount of pain would happen unexpectedly and at any location. I began to get this urge in my mind when these attacks would happen. As if it was one of those built in instructions from when we were neanderthals. It told me to use my muscles to try to have a bowel movement. That doing it would make the pain go away. This became my immediate reaction when the pain would start to happen.
Over time, the pain and effects of this condition lessened. To the point where I barely felt it the last time it happened. I thought I was over this, but I thought wrong.
I was woken up from the pain coming on last Sunday, and did what I normally do. But this time it came on stronger than it ever had. What happened to me is up for interpretation. To my memory I went from sitting on the toilet to waking up on the floor, face down. I had no visual memory of moving from point a to b. I did however have audible memory of crashing sounds.
With my history of seizures, I was very concerned that I had just had a seizure. When I got off the floor I received a couple other surprises. My back was red in an area on my shoulder, full of scratches and gouges. Then came the pain. I had some severe pain coming from my right rib area, directly under my breast.
My MD faculty at the school of medicine urged me to go to the emergency room, but the stubbornness in me refused. There isn’t much that can be done for broken ribs anyway. Why go? The next day I went, as I woke up with more intense pain than I had been feeling. They confirmed what I had though, diagnosing a “rib contusion / minor fracture.”
I’ve taken the week off of work, and the pain has slowly gotten less sharp in intensity, but it does remain.
Ever since the beginning of this pandemic, work has been full of changes on a level I’ve never seen before. It’s been almost impossible to keep up with the continual questions from those who depend on me, I’m learning as they are.
Personally, it’s been much of the same. Nothing I want to disclose at this point, but with my dad’s birthday coming up my normal strengths have become weaknesses.
I had to do something about it, and I couldn’t fight the need to flight – so I packed my stuff and went home. I spent the weekend in an odd state of consciousness, not living just existing. I hoped to get a lot of things done, and a friend offered his assistance – but the weather had other plans. I told him to not make the trek, I didn’t want him out in the rain like that.
I decided to start therapy again, it’s a helpful tool that I’ve used throughout my entire life. Perhaps there is something there I’m not exactly seeing that is causing all of this to just be too much.
I wasn’t even excited about picking up my youngest daughter on Sunday, something that typically changes my mood 180 degrees every time.
I know the subject of my father with my therapist made me weep uncontrollably. So it’s quite possible that’s the ticket, grief.
I took off work today, and took the trash and recycling off. I also sent the master cylinder I bought for the Jeep back. I then changed the oil, did laundry and put it away, then put my dishes away. The dishes have been done for a week, just sitting in the dishwasher waiting to be put away.
I accomplished some things today. That’s always something to be proud of right?
