Ahoy Fellow Fathomers, I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I found out on June 19, 2013 the reason for many of my ongoing health problems is because I have systemic lupus, also known as SLE.
Thank you for listening, each week I will have a new installment chronicling my journey. Please, please feel free to comment, write, share. I hope to use this forum as a help to all of us, no matter what pain you are experiencing. You may also send stories to me via finlessbook at gmail dot com. I will respect your privacy and maintain your anonymity, if you so desire.
Hugs for today …
I have a high pain tolerance. A regular momma grizzly. I also have a low complaint tolerance. Therefore, friends, I could be in pain and not gripe about it. My mom taught us that unless we had a high fever or bleeding, we plow through our daily commitments. Period.
Lupus has challenged my commitment of no complaints. Never before in my life have I felt like such a “hypochondriac”. It is still very difficult for me to believe the daily barrage of physical, mental, and physiological reactions my body randomly takes is legitimate. I still believe a pill or the right doctor can cure my ills. (Doctor, Doctor, give me the news I’ve got a bad case of lovin’ you, no pill’s gonna cure my ill….Wait a minute, really??) sorry for the ear worm. I also still believe it is something I’m doing wrong (eating badly, not exercising enough, not enough vitamins….etc etc)
I can honestly begin my day feeling one way and in a matter of an hour, completely have a different state of physical or mental being. For example, I’ve awakened with a killer headache and through the process of getting up and around, taking my meds, drinking water or coffee, and moving ahead with my day my headache improved or went away entirely. Yay Me!
The other extreme is I awaken feeling fan-freakin-tastic and somewhere around feeling-fabulous-on-the-dot crash harder than ever with muscle aches, joint pain, blurred vision, dizziness, nausea, and the overwhelming urge to remove the axe from between my eyes (not the first or last time the manner in which I’ll describe my headache pain). Ugh, insert expletive here Me!
And, you would never know from looking at me on the outside. I get quieter and more isolative and sometimes my eyes give something away, making it hard to tell a mental dilemma from physical illness. I’ll plow through, even grinding my teeth (which also hurts by the way). I’m still trying to make it till a regular bedtime instead of melting into bed before the sun goes down. (you guessed it, lying down also hurts sometimes too)
Don’t get me wrong, not trying to be a chronic disease martyr, but, I don’t want to give up, or give in, because the old adage “if you don’t use it, you’ll lose it” is entirely correct (and not the first or last time I’ll say that either). Thankfully, at this moment in my life I have more good days than bad. And, although switching up my routine to accommodate a few added wanna-be debilitations, I will still do everything I want to do. It just might take me longer. So, stop honking and just pass me! I’m in the slow lane sometimes. But, dammit, I’m still on the road. Remember the tortoise and the hare?
Lupus Foundation of America
*** UPDATE since I wrote this original post. I had the Biote pellet procedure. Because I desperately want to feel good again, I decided to take the plunge. Basically, I met with my OB/GYN and we discussed a type of hormone replacement therapy (HRT). My concern, especially with the SLE, is the risks of blood clots, stroke, cancer, and high blood pressure- which most HRTs carry an inherent risk for- potentially compounding my existing health threats. But, with the pellet implanted within the skin, the risk is not the same as with oral or topical HRTs.
My doctor used my lab results to determine the ratio of estrogen and testosterone. My Biote implant includes a high dosage of testosterone and a low contribution of estrogen, which is what I need. I’ve experienced fatigue, weight gain, low libido, and feelings of depression (among other things). Some of this could be from the SLE, but, it also could be from the peri-menopausal time of life I’ve entered. Hopefully, my personalized dose will relieve some of these negative effects and restore my spunk.
On the way out of the office, I spoke with one of his office staffers who so far had taken a couple of rounds of Biote. She said it gave her so much energy and restored some of her inner vitality from her 20’s. She has been quite pleased with the results. I want to do all I can to feel good and restore even 2/3 of what I had before I started getting sick. Sometimes, that means taking risks…
So, now I sit with a bandage on my backside to protect the healing of this new part of me. And, everything I have from my body in pairs is crossed for luck.