I am happy to say that I haven't been writing in my MS blog, because my MS has been pretty stable for the last two years. What a relief! I have been off my Glatopa (injected) medication for about 8 months now - I stopped taking it because after getting changed to a two-day injection, it was too easy to lose track of. As much as I hated the pain and burning, I certainly found that daily injections were easier to track. If/when I go back on medication, I will need a daily option. Keep your fingers crossed I get back to my Gilenya!
Since I last wrote, I had surgery to correct the Crohn's disease issue; this wasn't until I had to be on a boatload of steroids and Norco for several months, gained a ton of weight and had a lot of issues in the process. The medical procedures that I had to endure because of the bladder/intestinal problem make all the tests I've done for MS look like a routine physical. Have you ever heard of a cystoscopy? It's pretty much my worst nightmare in a nutshell. I was supposed to have another one six months after the first to make sure I didn't develop bladder cancer. Spoiler alert - I never did it again, it was too much to deal with, and after the surgery, my bladder got so much better I didn't even deal with it. 18 months, folks, of living with a constant feeling of UTI and pain. Other than my back and aging, I feel mostly pain-free, which is so amazing!
Before I went in for my surgery and had a foot of small intestines removed, I tested positive through 23 and Me with the BRCA 1 gene mutation. The BRCA gene is present in all individuals, and it relates to how the body deals with tumor growth. When left unchecked, mutations in this gene lead to significant increases in risk for Breast and Ovarian cancers. With BRCA 1, the risk goes from 12% to max 85%. WHOA that's huge. Ovarian goes from a very small number, like 4-5%, to max 60%. Since I already lost my mother young (and now I'm not convinced she didn't have some metastatic condition that moved to her brain), and she lost hers young to Leukemia (I looked it up - unrelated to BRCA), I know I am going to have prophylactic surgery in the next few years to cut those risks. I wouldn't want my daughter to grow up without a mother. If there's something I can prevent, especially when I already come with a slew of bullshit body problems, why wouldn't I take that opportunity to do it?
So, I'm 32. Hysterectomy planned for 35. While I was dealing with the bladder issue, I had a doctor flat out tell me "don't get pregnant!" And after surgery, when I was talking with a new OBGYN about my BRCA status, she said, "I'm glad you have a child, because you're done." We had accepted that we weren't having any more kids. But my heart started hurting earlier this year - so now we are trying, a final desperate attempt to get pregnant, and give our daughter a sibling. She would make a wonderful sister, and talks about having a sibling often. I hope we succeed - but if we don't, that's ok too. We have a lovely, huge, Great Pyrennes doggo who is such a snuggle butt. Our family will be complete either way. But keep your fingers crossed and send me baby dust! We are on our 4th month of trying officially after I pulled the goalie.
Going off my antidepressant was by far the hardest part of this process so far - when I went off it, I didn't get as dizzy as I did last time when I wanted to get pregnant with our first. But the mood swings were unbearable. I do think part of the problem was hormonal - I believe the first month I tried to get pregnant, I had a chemical pregnancy - I had several symptoms, had a funny feeling about it like when I was pregnant with my first, but no positive tests. When Aunt Flo finally showed up, she hung around for way longer than usual and was very heavy. The next month, I didn't have a period - and I had to take a heavy duty progesterone pill for ten days to kickstart it. This will be the first month after a "normal" period, non-induced, since July. I hope I actually ovulate and we don't have to keep doing this. It's exhausting!
I am running for a position in my state government for the licensing board of my profession. I hope I get it - I would like to move forward with a political career in the future as we can see the geriatrics that run the nation aren't necessarily doing a good job. I do think we can "make America great again," in that we can rise above our petty differences and improve our education, our standing of women's safety and progress on a world stage, protecting our environment and giving better longevity to our planet, evolution of technology and cleaner living, solving the housing and homeless crisis .... we have a long way to go, but we have a lot of room to move up. It just starts by getting your feet wet. Here's my first attempt at that!
I'm getting back into writing the book about Mom. Here's hoping I can handle it. I have been talking about it for years, but I think it's time to just buckle down and finish it. So wish me luck with that, too. Maybe if I get that completed, I will reward myself with a re-write of the fanfiction again, write some new music, and get Water WAARS finished. If only ...
OH! I released an EP with my good guitarist friend Steve Sutherby! It's worth checking out. Just look up Margo Sloan wherever you buy music and you'll see our EP, "The Quarantine Sessions." Hope you enjoy!
Bye bye for now. I'm going on a FB Hiatus, so I may have more time to blog!
Best - M
