Fiercely Independent Pam

Tag: amazing friends and family

  • 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!

  • My Life as a Plant…

    My biggest hurdle in dealing with my medical issues, is not the pain, constant appointments, or missing answers, but rather the unbelief of others. Whether it is doctors, nurses, friends, family members, or even strangers, it’s so hard to deal with people who believe that there is no way I could have so much wrong with me. It eats me to my core. I know I have to deal with these feelings and I need to let people have their own feelings, but it’s not easy. Much like a plant, I can weather a storm, but still need some TLC at times.

    I can handle the medical procedures, medications, and pain. I boost myself up and put on a smile along with my crazy curls and deal with what has been handed to me. I believe that it is not to hurt me, but rather teach me and help me be stronger for myself and others. I shut down and wilt like a plant when others don’t believe or think they can solve all my issues.

    Lately, my wilting and shut downs do not portray my best-self. I get upset, cry, and become very anxious. This cycle just keeps me in a place that I do not enjoy, nor does anyone around me. I will continue to work on this but it’s so important and easy to be believed. To the medical world, do your homework, my issues, while mostly invisible, are still very much real. Things like shunts, surgeries, and medications do not happen without having proven needs that are not arbitrary, but reality for myself and thousands of others.

    To my friends and family, it sucks that I am not reliable anymore and that I need help. Please always tell me if I am asking too much or you are not able to help. I promise it will not change our relationship. Ghosting me or not explaining the distance, hurts and will impact our relationship, which I hope neither of us wants. To strangers that feel they need to comment, I will simply let you believe what you want, your comments sting, but frankly, I don’t have the energy to fight for a non-existent relationship.

    All of this might seem a little cold or not like me, but it’s self-preservation at this point. I’ve chosen to subscribe to the “Let Them Theory”, in which I recognize that I cannot force or make anyone do anything, only people can change if they want to. It has been a freeing practice, and has helped me not to stress about relationships.

    For now, I will recognize that my body does not look like a temple, but that doesn’t mean I don’t want to treat it that way. I really am the lost plant on clearance begging for a little water, sun, and love. I will push through the ugly soil, but just need to believed that it is possible. My scars and experiences tell a story that I am proud of.

  • I hate being sick…

    I found this quote (pasted below) and realized it said so much of what I feel on a regular basis. Those, thankfully rare moments that I really consider where I am in life. Having chronic illnesses means always finding a balance between obsessing about getting better and pretending your life is normal or in other words, embracing the reality versus ignoring the facts. Most of the time this is for self preservation; nobody, including myself wants to hear about the struggles all the time. I often tell people that my full-time job is taking care of my health and that isn’t really a joke.

    When you couple chronic illness with invisible illness, and add in rare diseases into the mix, you are faced with a ongoing problem of being believed, but almost anyone, after all no one should or could have all of this. My list is crazy(simpliefied): Primary Immune Deficiency, Asthma/COPD, IIH, RA, POTS, Adrenal Insufficiency, Type 2 Diabetes, Hashimoto’s Disease, Migraines, anemia, SVT, pituitary tumor, kidney stones, urinary issues, back/neck/hip arthritis, endometriosis/ovarian cysts(now a non-issue due to recent hysterectomy), severe allergies, history of PE and DVT and depression/anxiety. I am always aware and thankful for the other scary stuff that I have been diagnosed with and then proven otherwise like MS and Myasthenia gravis. I am well over 50+ surgeries and have been plagued with orthopedic issues from a bad car accident and stupid bad luck, along with years of playing sports. My medication list is ridiculous and it gets slapped with “Poly-pharmacy” all the time, something that the good providers see as a potential problem but not sure how to handle it. I swallow pills and give myself injections like its my job!

    I write this today, not for pity or attention, but mostly for my own good and hopefully someone else will feel less alone in their own medical journey. I do not expect my family, friends, or my “tribe” to fully comprehend all of this, as I barely do. I do hope that those who surround me with love give me grace to be imperfect sometimes. In turn, I vow to keep fighting and giving myself this same grace. I will continue to “Not let the hard days win” as I have won !00% of my battles against bad days! I will continue to search for new treatments and support, my biggest adventure in this area is attempting to get a service dog for mobility, assistance, medical alert, and of course companionship; all of this would be a total game- changer.