Fiercely Independent Pam

Tag: amazing friends and family

  • 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.

    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 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.

  • Having a Tribe:Family, Friends, and Staff, Oh My!

    Well, I am back inside- not the big house but the hospital-Again! My blood pressure, which usually runs low is through the roof, I called an ambulance when it reached 250/100. Nothing cardiac going on, but still not able to figure out what is causing the high BP and chest pain. In the meantime, I was pulled off all my meds that could raise my blood pressure, mainly my steroids that I take for adrenal insufficiency. Being off of them is making me feel pretty crappy. That coupled with needing a foley catheter again and continued pain, has me searching for some positives.

    I found hope in a great place- mainly what I am now describing as my “Tribe.” These are the people who together we help each other out and just make things happen. I could not survive without my tribe. My new friends at my community who, despite their own disabilities come visit me with cookies in hand and are available to hear me vent without judgement. My tribe includes the caregivers and employees at my community who do amazing things like look after my plants, or bring me the medications I didn’t bring with me.

    They are all there for me and I just hope that I am always there for them as well. I guess my biggest piece of advice on finding your tribe is to be open to help from anyone and everyone who is willing, you never know who is actually going to be there for you. Likewise, you need to show up for your tribe, be a friend, and most importantly listen to them!

    It is equally important to consider and recognize those that are NOT in your tribe. Those that gaslight you into thinking that your symptoms aren’t real or blame you for your conditions and even those that try to offer advice sometimes. This is a hard pill to swallow as sometimes those that you have to recognize as not part of your tribe are the people you desperately want to be your biggest cheerleaders. People’s lives are busy and we need to recognize that. Often, just like not blaming a person for their chronic illness, we need to respect that life is messy and we cannot blame people for not being part of our tribe.

    The bottom line is that it still hurts when someone can’t be there for you, or when you can’t be there for them. Relationships are messy and just because someone can’t be part of your tribe, doesn’t mean that you can’t like/love them. Our tribes change almost day by day, but relationships with friends and family always remain.

    I am so thankful for my past tribes, and in a really special way, my current tribe. I hope and pray that I am a member of standing in other people’s tribe by giving and showing up for them. A cookie in hand goes a long way.