(Sometimes I don’t even realize how sick I look as I rapidly lose weight and my cheeks sink as I look at pictures like this. Today wasn’t even THAT bad. My scale of what’s good and bad is very skewed I guess)
If you read my blog from very early this morning, it’s practically the next day and still in the same pjs. It’s been one of those 24 hour periods. I was productive, just didn’t have the energy to shower or even get out of my smelly pjs (I get extremely drenching night sweats). It still felt like a good day, which as I mentioned above is so strange how I have skewed what is good and bad.
So people who have followed my blog for awhile know that my health has been on a rapid decline. I have numerous neurological diseases (some autoimmune, some genetic, some who knows?, other autoimmune diseases, an insidious case of Epstein Barr Virus that seems to go away for a second and come back and hit me with a vengeance leading to a fatigue and feeling like I have the flu misery I can’t even begin to explain unless you have severe autoimmune disease or ME/CFS.)
The most recent has been my extremely enlarged lymph nodes in many places and lung nodules, which was presenting as lymphoma. I had my PET scan. I lit up, which is not so good with a PET scan as it usually means malignancy.
It’s been hard to talk about this, not because I’m disappointed, but I don’t think people will understand. It’s not cancer (perhaps you are all thinking hooray!). It’s actually worse as I didn’t think there was treatment for my problem. I have a very serious case of systemic inflammation. Still sounds relatively benign, except the inflammation in combination with the Epstein Barr Virus and the autoimmune (or maybe one does one thing and another does something else) has systemically been attacking my body, (my spine, nervous system, GI, and now my lymphatic system, although I’m not totally sure of all the complexities of it). Even the oncologist said I had one of the worst cases of inflammation he’s seen. It’s not his specialty, but as a cancer specialist, he’s used to seeing very sick people. Both times I saw him, I looked very sick. He admitted that too.
So it’s not a “hooray you don’t have cancer”. It’s more like an “oh shit. I have something you can’t fix”, or so I thought. The oncologist’s recommendation was to go on high dose steroids (can’t do due to bad side effects) and immunosuppressants, which are pretty toxic and dangerous in their own rite as they are essentially low dose chemotherapy.
I went to my primary care Tuesday. We talked a little about my son. She said something along the lines of “we have to work to keep you alive as that will be best for him”. I’m just thinking, “wait, what? The specialists have told me I’m going to die within a couple years, but this is my beloved primary care who isn’t going to use these terms with me as she cares about me too much”. It got very real for me.
She and I have been discussing my doing stem cell therapy for a long time. With cancer looming over my head for several months and nearly certain according to specialists, I wasn’t a candidate for stem cell therapy as it will just go to the cancer and make it spread very quickly throughout the body. Well, I can’t afford stem cell therapy. If I can barely pay my water bill, how will I pay for stem cell therapy?
So things have been worked out. I get my miracle cells on December 11th. I will be starting a sister blog in the next couple days in regards to this health and stem cell journey.
I know many of my readers suffer from a plethora of autoimmune and other rare, misunderstood, or nasty diseases. It often is a side effect of severe childhood trauma unfortunately no matter how much you heal from the emotional part. If you suffer from a rare disease to a sports injury you can’t cure, you can follow that blog, or follow it anyway as the new ways medicine is going is exciting.
Perhaps you would want to travel to my area and get this treatment too (Reno, NV)? It’s a one time deal and much cheaper than functional medicine, naturopaths, private pay doctors offering miracles, or regular acupuncture, massage, a year of copays for numerous allopathic doctors, or supplement regimes that can grow to insane amounts. I know if I would have been able to do this a couple years ago, it would be a tiny fraction of the cost of copays going to doctors, hospital stays, and my IVIG I’ve had 3 times over the past few months.
Will it make me perfect? Probably not. I’m having some calculated hope it WILL improve my life and lengthen it with the strength to do something (not sure what) to see my son again sooner rather than later. I guess I don’t have any idea what to expect beyond being open minded to the idea that I’ll get stronger to also achieve many life goals. I wrote a 201 page book for a freelance contract that I found boring for a reader. I would certainly love to publish my own compelling story of how getting very sick gave me the time to contemplate a lot of life lessons leading me out of past trauma causing me to live strongly, confidently, and with plenty of joy even if the strongest I could do was stay in my bed and compose my thoughts. I have at least 100 pages already done, although I’m not completely sure as it’s scattered among many files.
I suppose as I get that blog up and going, you can follow my journey to see what happens?? I will say someone pretty near and dear to me shared her troubling neurological symptoms that didn’t have a true name but were misery making and autoimmune in nature. 8 months later, she is doing well without neurological problems and appears grateful for her stem cell journey.
It will definitely be interesting. I’m tired of the constant tired, having zero predictability how I will wake up feeling, and having to make the mental debate (if I’m lucky to have some strength) daily of wondering if I should spend my energy doing laundry and some light cleaning or something rewarding to my soul? I suppose we all make those choices, I suppose most people who are physically and mentally healthy (relatively) aren’t floored (literally) by having made sure their clothes were clean one day.
I hope you will follow me on this miracle journey I’ve been given. Even if it doesn’t turn out to be a miracle, the opportunity is enough of a miracle.
I’m definitely sitting in huge gratitude tonight. Just a few weeks ago, a GI doctor told me I probably have 2 years tops. I’ll take even 5 years now as advances in medicine are constantly evolving.
Excited to be planning for a short term future of working at healing and a bit of skeptical hope that I can make bigger goals happen eventually. What a mind shift.
Keep believing you are worth it. Others will follow (and I mean beyond my beloved medical professional. I mean really and genuinely good hearted people who have actions that match their words).
(About 20 years ago when hiking 15 miles in a day felt like nothing. Not necessarily expecting that as a result, but who knows how my life may change for the better??)