Fiercely Independent Pam

Category: Mental Health

  • Lucky Day “19!”… What Will the Day Bring?

    The number 19 has always held a special place for me as it’s my birthday number. I have also found a lot of people in my life who share this fact with me- kind cool! Being a goalie meant that using 19 as my uniform number for lacrosse wasn’t an option, but on random days I put on a real jersey for fun, I always tried to get my “19.” Today’s number 19 is different. Today, marks the 19th day of being in the hospital this “go-around.” For what started as a fever of unknown origin and being “dumped” in the observation area, I’ve come a long way. I have decided open heart surgery wasn’t on my bingo card for this year. I was thinking, worst case scenario-I would have some sort of superbug that required expensive IV antibiotics and a good amount of TLC needed.

    Instead, I will, eventually, have life changing surgery with hopefully positive outcomes for everyone, but especially me! I was dreaming this morning about my dog again and how much the comfort of dog would’ve been yesterday when I was struggling. I accepted reality quickly yesterday, surgery wasn’t going to happen as planned, everything would be pushed back, and of course that also opened the door that I would be alone for surgery. I was in a sucky place emotionally and wasn’t quite sure how to get out of it. As a mentioned before, all my anxiety/depression medications got pulled and are on hold at this time, meaning I am doing this on my own(but with the loving help of my friends and family.

    In order to get my head back straight and be a pleasant person to be around again, I knew a few things would have to happen. The first, and probably most important, was finding food. I was closing in on the 24 hour mark for no food or drink and that is something 100% of the time is NOT good for me. I went from wanting a giant sundae to deciding to get some yummy Vietnamese food including a wonderful summer roll and chicken pho. I am looking forward to leftovers today too.

    After food and drinks, it was time to get back to some general pain management, I was trying to “tough it out” and realized there was no good reason for that! The final step was some good, restorative sleep with my non-invasive vent. I woke up today in a good head space again and hopefully stay in this positive place.

    I ask not to pause the prayers for the surgery but to redirect them for positive days ahead as we work through family coverage, next steps, infectious disease questions, and long term needs. Additionally, since I am back on lasix again, please say some direct prayers that the staff (and me) don’t go crazy with all these wires every 10 seconds that I have to get to the toilet and back again. Talk about dragging your baggage around!

  • Just a Silly Goose Who Has the Medical Stability of a Wet Paper Straw!

    Just a Silly Goose Who Has the Medical Stability of a Wet Paper Straw!

    I saw this image the other day online and decided it described me to a “T”! I am beyond 100% behind the silly goose trend having bought more goose outfits for my mom’s porch (lanai) goose than I care to share. Similarly, the image of a wet paper straw is vivid to almost anyone that has had to manage one of these stupid inventions. Some friends and family call me flakey or unreliable these days because I cancel more events/outings than I actually go on. Others are just relieved that I canceled, so they don’t have to worry about me getting “sick” or passing out when I am with them. All of this can be lumped under medical stability.

    Each day, outing or event is up for the stability monster to steal. I can wake up being beyond excited for something upcoming and feel great, only to have the medical stability monster to wrestle me into my bed with a migraine, pain, low blood pressure, low blood sugar, etc. My monster is very lucky because there are so many medical conditions to choose from. If he ever gets bored of that, he decided my portable oxygen concentrator doesn’t want to work, or my wheelchair didn’t charge correctly. In my world of stability, nothing is off the table.

    I used to be reliable. I used to be the one that made things happen despite what else might be going on. The only thing that used to slow me down was my crazy job responsibilities. Now, I’ve learned to not to commit to anyone or anything because I just end up disappointing myself when I can’t make it happen. Stability is a funny thing, you never think about it until you become a giant flake!

    I’ve learned to stop mourning my prior life and see the possibilities of my new life. Without my job, which is loved, dragging me down and sucking up so much energy, I am free to see other things. I have resumed regular reading and increased my prayer time. I have had time to write this blog, and start something from scratch. I am preparing myself to welcome a partner-in-crime with a wet-nose! Most important, I have learned not to measure myself by what others think about me.

    This step took a lot of work. I had to hit rock bottom several times to find the strength to change my mourning into dancing. I fully surrendered myself to my creator and asked Mother Mary for Her help to undo the knots of my life. I was honest with myself, friends, family, and even strangers. I worked hard in therapy and continue to do so. I know its not going to be lollipops and gumdrops here on out, but being honest with myself and others means that the rollercoaster of my stability should be a little less like Rockin’ Rollercoaster (now Muppets) and a little more like Dumbo!

    I will continue to battle the stability monster. With practice, a fluffy best friend, and maybe a little found luck, I will start winning more than losing the battles. After all the view from Dumbo is SO much better! I might never reach the status of my favorite stainless steel straw, but anything is better than trying to use a paper straw!

    How to you maintain your own stability? What are your go-to strategies?

  • 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?