To my friends whom I love so very much, an open letter.

56517071_2012619288846998_8707890152183169024_nI am sick and I am not going to get better, I am sorry. It’s really okay and I am sorry to disappoint you in that I did not fully ‘beat” cancer. It’s funny that we spend so much time worrying about a reoccurrence, that we fail to realize what else it can cause to occur in a genetic pea soup. Don’t worry or be upset for me or about me, just love me and laugh with me; that is all I really want and how I live every moment that I can, hoping that you will continue to live it with me. Please don’t tell me that you are “sorry,” as you did not make me sick, and there is nothing to be sorry for. Life happens and so does disease.

There are many factors, and no one is certain why people get this disease. The National Institute of Health in a 2018 article noted, “Limited data suggest that CRPS also may be influenced by genetics. Rare family clusters of CRPS have been reported. Familial CRPS may be more severe with earlier onset, greater dystonia, and more than one limb being affected.’ Yes, unfortunately that does include my family, and we are fairly certain my Grandmom who passed almost two years ago had it too. I promise you can’t catch it from me. Hanging out with me will not increase your changes, and it doesn’t rub off.

My brain is flooded with excess cortisone and adrenaline from the process RSD/CRPS induces, which means my screwed up nervous system will always choose function over cognition as a priority. Added to a reduced ability to produce certain brain chemicals from having active MTHFR genetic issues is a nasty neuro sandwich. I have MCI (Mild Cognitive Issues) and it’s something I am learning to live with.

If I forget something, I’m sorry; it’s not on purpose. If something sounds “off” or “wrong” it probably is. Talk to me about it later on when the brain fog clears if you cannot get me to see it at the moment it occurs. I know I can be frustrating when you have to repeat yourself, but know I do not ask on purpose, and maybe we can have a laugh together over how many “new’ things we find I forget. It can lead to lots of fun; it’s like going to your favorite restaurant and getting your favorite meal, and every time feels like the first time. So what if i get to enjoy something as if it was the first time more than once? My brain thinks it is the first time, so let’s just go with it and have fun together.

Please understand that if i ask you to repeat yourself or seem lost to your words, it is not that I was not listening, but that i couldn’t retain the information or process it correctly.

If I seemed “upset,” “mad,” or “panicked,” which thankfully doesn’t happen so much anymore, it’s likely that I’m off and need to be around peaceful settings, without loud noise, lots of talking, bright lights, or too cold a temperature. These are all things that can exacerbate the disease. At the same time, a room that is too hot can cause breathing issues and dizziness, making things worse. I’m best in a semi-fowler position for my breathing and symptoms, and just in a calm environment with just one or two people at most talking to me.

Know that my heart is in the right place even if my mind is a bit lost, and sometimes that means making higher function decisions is hard and can feel overwhelming, if you can help me make the decision, please do. Talk to a family member. My mom and brother are on social media and easy to access. Reaching out to Matt is the first choice, as he is the one who can get to me the fastest and help with the situation, and he knows my emergency protocols and how to help me when I can’t do it as well on my own. Those that know him can contact my son; he is not on facebook and doesn’t spend much time on social media. If that happens, please do not leave me alone. Even if I say that i am okay, remember that I can’t see me through your eyes, and may not be able to have cognitive awareness that something is wrong.

We are all learning and I promise to do my best to thrive. Please have patience, this disease is … well… I really do not have a “good” word for it, I just know that I will do my best to keep thriving and surviving. There is no real way to know how long I have had it, but we know now! It’s been a hell of a year of changes and I hope next month leads to getting off six month oncology check ups!

The doctors say the post mastectomy syndrome and trauma from the three surgeries in less than a year turned into RSD/CRPS, in part due to my genetics, but also because of the extreme stressors of the time, and I am very lucky. I am lucky that I am still here to be able to say that i am very sorry for anything that may have happened, or been said in the past, and hope that we can take this moment forward with your love and support. I know I can stay on top of this thing. You help me to have courage on hard days in ways that you probably don’t’ even know. Thank you so very much for all the time that you lent me your shoulder. It’s nice to be able to give back sometimes! I may be damaged, but I still have a good ear and shoulder with a few tricks left up my sleeve. Don’t hesitate to ask me for my help or to ask a question if you don’t understand something about me. That’s okay. I am still figuring out who “Jenny” is, but it’s nice to know who she isn’t.

The right breast biopsy last year made everything ramp up a lot worse. I know that confused a few people. Yes, I only have one breast left and that is the one they are watching. My left was lost to a mastectomy in 2013 from invasive ductal carcinoma that was hanging around near the back of what was my left breast and chest wall.

Now we have made medication changes and treatment changes that are having a positive affect on my overall wellbeing, thankfully! A diagnosis is a relief and a burden all at the same time, and I am coming to terms with being at a medical endpoint, as there is nothing else that can be done for me The doctors have me on alpha and beta blockers, neuro meds, ketamine infusions, and cannabis for pain control, as narcotics and opioids do nothing for my disease, but do horrible things to my mind. I forgive myself for the things I cannot control, and control all that I can. With G-d all things are for the good. I own all that I dol good, bad, or indifferent. Being sick is no excuse. If you tell me, give me the chance to own it, please, and don’t feel bad. It’s not your fault.

To those that have been close and walk this road with me, thank you so much for loving me even when I wasn’t very lovable. You are all truly my life savers.

Your goofball of a medical zebra friend,
Jenny

Sourced; https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet#What%20is%20the%20prognosis?

Posted in MY BLOG.

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