Category: About Me

  • Navigating the World of Hospital Visits: My 5 Top Stressors!

    Being in the hospital is never fun or even tolerable at times. My complicated medical history means I have become a self-proclaimed expert at hospital stays. I have learned the good, bad, and downright ugly parts. Navigating hospital stays are stressful, especially when you are on your own.

    I thought I would provide my top 5 stressors when I am in the hospital in no particular order along with how I navigate them, somewhat successfully; I am a work in progress to say the least.

    1. Medical Gaslighting: defined as: Medical gaslighting happens when a healthcare professional dismisses, minimizes, or invalidates your symptoms and concerns. This can cause you to doubt your own health experiences. It often stems from unconscious bias, a lack of knowledge about certain conditions, or medical paternalism rather than intentional malice.
      • I try hard to ignore and stand my ground in a kind manner. This is the hardest thing for me as my anxiety is triggered easily by gaslighting due to previous experiences.
      • Being a woman comes with the “consequence” of a higher risk of medical gaslighting.
      • I try to remember that medical gaslighting is not intended to be taken personally, it is a problem with the provider, NOT me.
    2. Not accepting my experiences and knowledge.
      • Sometimes providers are amazing at asking for your input since you have lived with this condition sometimes longer than they have been treating it, other times, not as much.
      • I have found, again, keeping my composure and using kindness gets me much further and allows me to share more of my story.
      • Being prepared by having my medications, allergies, previous surgeries, and conditions listed clearly in a file or printed show organization and usually garners more respect from the provider.
    3. Being ignored or not answering call bells in a timely manner, especially for toileting requests.
      • I completely understand that at times, personnel aren’t able to come right away, it is acceptable up to twenty minutes or so, but after that, is just cruel.
      • Trying to prevent, as much as possible emergency situations by requesting help before you are going to have an accident.
      • Not being demanding with the call bell unless it is truly an emergent situation.
      • Explain your special needs ahead of time to as many people that need know. In my case I let my tech and nurses know that I self-cath and it needs to be over the toilet. I will keep to a schedule as much as possible but may need their help in between and that means it’s urgent.
    4. Questioning other doctor’s diagnosis’s or previous tests/procedures in an unprofessional manner.
      • I do a lot of research to find high quality providers from speciality places. I travel near and far as needed. It is very frustrating when a general hospitalist or similar tries to rework an entire treatment plan from a specialist.
      • If I do not believe that the hospital provider is going to honor a treatment plan I try to just let it go and plan to touch base with my provider when I leave the hospital to review what was changed and what I should do. Keeping calm and knowing I have a plan after discharge helps a LOT.
    5. Not being allowed to advocate for myself, especially when there is no one else around.
      • I am often in the hospital by myself without friends or family. This requires me to be a “well behaved” patient as well as my own advocate. Two roles that sometimes conflict with each other.
      • I try to remind providers that I am my own advocate and that I do not have family present. Sometimes that allows them to “hear” me in a different light.
      • I start off gently when advocating, I only stand my ground or get aggressive when my anxiety gets the best of me. I try to explain that I have a lot of medical anxiety and ask for forgiveness if I get aggressive, but stand my ground on the issue. I often ask them to come back after I can compose myself and apply coping strategies, which may include prn anxiety meds.

    This is just the surface of what I find frustrating in a hospital, but the most important to me. Dietary issues, attitudes, and facility issues are secondary. Naming my medical anxiety seems to be the best solution for me to feel comfortable and heard. Using a combination of coping skills I have learned and practiced as well as additional medications when appropriate goes a long way. I also, always try to remember that health care workers are overworked and stressed too. A smile and a warm greeting can sometimes keep any situation from becoming hateful or uncomfortable for anyone.

    What are your stressors in the hospital? How do you manage them?

  • Seven Years Ago… The Best Decision I Didn’t Make Myself!

    I know I write about my Facebook memories a lot, or at least it seems like a lot. It really is my favorite feature of Facebook- I love looking back at the last 16+ years. On this day, seven years ago, I made it official that I was not returning to work (teaching or as a principal) but, with my doctors guidance, filed for long term disability and would be moving to Florida to spend some much needed time with my parents. I was so mad that I couldn’t make the decision for myself, I never thought I would get over that!

    At the time, I felt like a complete failure. I was a talented teacher who couldn’t teach and needed to move in with my parents at 40+ just to make ends meet. It was devastating! My entire world was turned upside down and I was faced with fitting everything I wanted with me for the foreseeable future (and Sofi, my 80+ pound lab) into my Rav4.

    I gave away most of my furniture, put some precious items in a storage unit, and packed up Sofi and I for an adventure that neither of knew what to expect. It turns out that this was the best thing that ever happened to me. Sofi got to live her best retirement life and I traded the classroom for some amazing and needed memories with my parents.

    I was worried that I would lose purpose from my life. I was worried that I would be miserable and HOT! I remember driving the many, many hours south to Punta Gorda and coming up to a stretch of the highway that was outlined in gorgeous palm trees and a bright blue sky. It was my perfect God wink that I was doing something right.

    I had about two years with my parents that consisted of sorting out their needs, pills, and insurance nightmares. We also had many nights of ice cream for dinner, car shows, and easy Sunday rides. We swam in their pool almost daily (especially Sofi) and every morning, my dad would say, “Just another day in paradise!”

    Then the harder days came, mom’s memory was failing and she was loosing mobility, she had some close calls including a major fall and emergency brain surgery followed by a long stay in rehab. Dad’s cancer began to spread and caused him a lot of pain, but he continued to do the cooking, laundry, and other jobs around the house. I taught him the wonders of the instapot and instacart and he learned all about dealing with my food allergies. Of course all of this was during Covid and we desperately needed each other’s company.

    My health continued to disintegrate. Multiple hospitalizations, needing a vp shunt, and mega doses of steroids took their toll on my body. Somehow together, we made it work. I ended up giving up my car, which was a big deal to me, little did I know that eventually I would have to give up driving all together.

    Then came the hardest days. In the same week, my dad passed away, we placed my mom in a nursing home, and I found myself alone again. Luckily, my brothers and sisters are amazing and we continued to work together to get the tasks done. My sisters ended up staying for a few weeks and it was the best kind of medicine for me! Then I found myself alone, in a house I had no business being in (too much to take care of).

    I continued to visit my mom pretty much daily at the nursing home and found that was the best thing for both of us. I showed up with an iced cappuccino from Dunkin and either a donut or munchkins each day, with the occasional break for ice cream. We planned birthday parties and I listened to some pretty crazy stories. At the time, I didn’t realize, but I would do anything to have to make one more stop at Dunkin for her!

    All in all, seven years ago a decision was made that changed every trajectory of my life, but it was the BEST decision I could’ve made. I don’t know how things would have been different but living with my parents for those years was beyond amazing. if you are living through the “caretaking” phase with your parents, just know you will barely remember the “bad” moments, but will forever remember that you were there for them, just like they were there for you!

  • A Busy Week of Ups and Downs and LOTS of Appointments!

    Spoiler alert- LOTS going on! This week was full of twists, turns, and appointments. Some good news, some complications, and of course a lot of smiles!

    Monday brought me to my second home, MUSC, for an appointment with a spinal specialist to determine what, if anything, can be done for my back and neck. It also served as a follow up on my L1 compression fracture. The doctor was excellent and had some ideas for all of my issues. He recommended a kyphoplasty for the fracture since, while it is still stable, it’s not healing well. If it is going to happen, it will be done at the main hospital by interventional radiology, but a consultation is necessary.

    Monday also brought an unexpected ER visit upon the guidance of my home health nurse. The hematoma that I ended up with at my last hospital visit was looking bad and angry. The ER wasn’t super helpful but I managed to get an antibiotic as well as a referral for wound care.

    Tuesday was a day of appointments at home. I had PT, OT and an appointment with my medical advocate. I also had a GREAT conversation with PAALS about next steps in regards of “my” service/assistance dog. I am ecstatic to see what the future holds for this area of my life!

    Wednesday was a self-care day! I had my hair cut and colored by my favorite stylist, Amanda. I shared her a smile from Seeds of Happiness with her and she was super excited to share it with her son! I also made a TON of phone calls trying to catch up with scheduling new appointments and follow ups.

    Thursday was a tough day, I really struggled to get up and shower, needing to sleep for two hours afterwards. I had an appointment in the afternoon with the nurse practitioner at my pulmonologist’s office. The appointment was intended to be a follow up for the nodule that was discovered on my lung and the follow up CT scan. The nodule couldn’t been seen because the scan showed pneumonia. I was put on an additional antibiotic (my third), nebs, and Musinex. The bright spot of the day was getting to see my nephew when my sister in law drove me home.

    Friday afternoon was my long-awaited wound care appointment. I didn’t know what to expect and what would happen moving forward. I had a 1pm appointment and was taken right back. The nurse who started the process was amazing! She took my complicated medical history, examined my wound, and set me up for the doctor. Then, the doctor decided that the wound needed a full debridement. This process was probably one of the most painful experiences I have had despite the use of lidocaine. It was miserable, but necessary. He also recommended the use of a wound vac (to be started at my appointment next week). I will visit the wound care clinic weekly for the foreseeable future and then home health will touch base weekly as well.

    Unfortunately, this week made me cancel a lot of plans because of not feeling well. I hate that sometimes it comes across as flaky. I hate even more that I miss out on good things. I used to say that at some point this will pass, but I’m not thinking that will happen. Until then, I will keep smiling, hoping, and praying!

    Me and Amanda sharing a Seeds of Happiness smile!