Fiercely Independent Pam

Author: Pamela

  • Hurry Up and Wait…

    My dad would say this all the time, especially when dealing with the medical field. Being in the hospital is a waiting game; you have very little control over when something is going to happen. Nevertheless, you always seemed rushed.

    I’ve been in the hospital, this time for a week now. When I came in, they wanted to do a lumbar puncture to determine what could be going on in my head/shunt. The doctors attempted several times bedside in the emergency department, but had no luck. Lumbar punctures are never fun and always pretty painful. The decision was made to repeat the attempt with the help of interventional radiology (IR). The problem with this is that IR would not do the lumbar puncture until my blood thinners were held for at least five days. So, I waited.

    Five days later landed me right smack during the weekend, where there is a skeleton crew for IR. So, it being Monday, I believed that I would be scheduled today. Around four o’clock, I figured it wasn’t going to happen and I was bumped to tomorrow. My nurse confirmed this and a whole lot of “Hurry up and wait” took place.

    We will try again tomorrow and with any luck it will be a success and I will be able to go home afterwards. Having a shunt and having IIH means that lumbar punctures are always on the table. I came in with a severe headache and blurry/double vision. These are troubling signs of possible papilledema or swelling of the optic nerve in one or both eyes. This can lead to permanent vision loss if not corrected and treated.

    I’ve had several rounds of dealing with papilledema and each time my previous eye doctor would remind me of the seriousness of the issue. Unfortunately, an eye exam is a tricky thing in the hospital. It usually needs to be done as an outpatient because of the necessary equipment and most hospitals don’t have ophthalmologists available beyond phone consults.

    I will be sure to follow up with a local ophthalmologist and if necessary, my neuro- opthalmologist at MUSC. More opportunities to “hurry up and wait!”

  • Chronic Disease Day: Finding Strength in My Struggles

    Somehow I missed that yesterday was Chronic Disease Day. I have a multitude of Chronic Illnesses and recently I have decided, unapologetically, to embrace them in order to give me back my independence. I know this sounds weird, but the fight I am in requires other people to have knowledge about my diseases. While a miracle can always happen, I recognize that I am not going to “Get Well Soon,’ or even “Feel Better” any time soon. I need those that love and care about me to recognize this as well.

    On this day, may all of us embrace the fighter within us. The one who refuses to give in, even on the worst of days. The one who gets up and out of bed, even if its temporary, just because it might make us feel better.

    Despite being in the hospital, I spent my day resting, doing pt/ot, and researching new ideas to help me on this journey. I sent emails to brands to inquire about partnerships, I shopped a little to find products that will help me, and worked on bringing you this post. I 100% prescribe to the philosophy of “Don’t Let the Hard Days Win.” I recognize that this isn’t always possible but my batting average against the hard days is pretty good.

    These are far more than positive thoughts, they are statements if independence. As long as I can accomplish something, despite my chronic diseases, I am remaining independent. Independence is not just about being able to do things on my own, but rather being able to live a life as close to what I can imagine it to be. I want to be successful and useful, my life requires purpose. I am still working on what that exactly means, but for now, I will sum it up to say that on this Chronic Disease Day, I am winning! My POTS, diabetes, adrenal insufficiency, Hashimoto’s, Asthma, and tons of other diseases aren’t as successful with me because I believe in the power of fighting.

  • 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.