There has been a lot going on this month! Right now, I am focusing on fixing broken pieces, trying to get myself together in order to get well. It hasn’t been a good month, but I at least had a moment I was able to get out there and not be a hermit and enjoy myself for awhile. Halloween is my favorite and I pushed myself with a lot of mind over matter and a nice long nap before going out with Dave and my friends.
I had an appointment with Dr. S and there is a lot to work on. Thank god he writes notes about the appointment, I was about to crash and fall asleep so I was completely out of it.
He actually ended up telling me to head home and make another appointment, see how I do with my new supplements and skip my chiropractic adjustment for the day.
He saw my pictures of the bloat and stomach issues. I am going to give a little side note and some words of wisdom before I continue on.
SIDE NOTE: If there is something funky.. mysterious rashes, swelling, anything really……..TAKE PICTURES, ALWAYS!!!
A) It is easier to just show a picture of what has been going on if whatever it was isn’t there anymore for your appointment time.
B) They can’t help you if they don’t know what it is just by your explanation.
C) You can kinda sound like you are full of shit, especially if you are seeing a new doctor without proof.
D) Seeing is believing.
He takes my word for it either way, as I have had a good and long relationship as a patient with him… but… not exactly knowing without that picture really isn’t super helpful. Especially if you are a mumbly, stuttery blob in the chair, in my case tweaking and cringing as well.
Okay. Back to my story. No more amoxicillin for me. As you saw on my last blog entry, I am definitely bloated terribly and am having really bad stomach issues. The game plan for this week until I see him again is to work on my stomach issues. Lots of pre and probiotics, digestive enzymes, oil of oregano, GI Integrity, switching to magnesium citrate to try to get me poopin’ normally again.
Not going for several days apparently is an issue even though I am not straining and just forgetting, and I have always had issues with my liver so I guess it isn’t helpful to it and I am very toxic.
Well, nada. Zero difference. It stinks to get a bunch of stuff thrown at me but nothing seems to be working.
When I go back I am going to do further testing, to perhaps pinpoint more about the bacteria, as I already had a test that showed I had a pretty severe bacterial infection, but learning more might help with a treatment plan.
Gut health is so imperative to any sort of healing. It is worrisome that working on diet for gut infections, particularly SIBO, supplements, the probiotics etc. are not touching this. We will get it figured out. It is really important to be on track and I know I just need to be patient.
The next thing on the agenda was kind of random. But Dr. S kind of seemed baffled all of my gynecologists that I have seen in this past year showed zero concern I have not had a period in over a year. That’s a long time! I certainly haven’t missed it. Dr S. wants me to be back on track, and hormones are definitely out of whack if it has been this long.
Progesterone cream it is. I have started that but have still yet to finally get my period. I kind of feel like I am a ticking time bomb and am going to eventually blow, and possibly bleed to death as it has been so long. Haha. Only kidding.
I am only 5 days in and woke up this morning with hellacious cramps. As you know, if you have followed my story (you should, I’m awesome), I have endo and it isn’t fun at all.
I was so late for work. I was in so much pain that I was dry heaving and kept on blacking out. I looked at the clock and pushed myself as hard as I could to get my shit together and make it through the day. I actually am pretty busy with lots to do, and a dinner I need to go to tonight, ugh.
I grabbed a coffee at the gas station on my way to work, and decided to buy a box of tampies, just in case. I actually had to look at the different boxes like, “what are these? I forgot all about you guys! ” LOL Like I said, I am pretty sure it is brewing.
Sorry if that is graphic or gross to you talking about my time of the month. Or that time in well over a year. Whatever. I promised you all the good, the bad, the ugly.
My Tourette’s hasn’t been as bad, but I am still doing the cringes and hand raising and a few “bahh!!!”s at night. I can deal with that all though. It is what it is.
Fantastic news.. I have CHRONIC EBV/MONO… No, this is not just flares people get that already have it in their system and it gets reactivated. That is common with Lyme.
I have it all the time. 24/7. 365 days a year. Not a days break in between. Okay, that really isn’t fantastic news.
What to do? I have been on several antiviral herbals, but unfortunately there is no cure for mono. Rest and all that good stuff. I certainly get enough rest! Haha. I added monolaurin (spelling?) to my antivirals I am already taking. Hopefully it will finally get deactivated.
I asked the risks involved, and I guess you are at a much higher risk for cancer if you are in the situation I am in. I have so much crap going on, I am not going to even be scared about it. I just want those viruses to simmer down and go away.
Once again, reoccurring theme, I am still sleeping my life away. It keeps getting worse and worse and I don’t know what to do about it. I almost get in a panic if I can’t go fall asleep somewhere.
I had to sleep after seeing Dr S after my brief appointment to get my back cracked and we decided on further testing for stomach bacteria. (Yes, I know I had already mentioned this but I have taken forever to write an update and have been writing bits and pieces for about a week now.) I was toast.
That day was yesterday, an 18 hour of sleep day. And I will tell you, I am so exhausted today. It hasn’t made a difference. I seriously want to cry because I feel like this has taken over my life.
Giving a disclaimer to those who suffer from chronic illness can have extreme fatigue, I am not downplaying or minimizing anyone else in my post today with my personal ongoing issues. It sucks all around for everyone.
I have been through the chronic illness fatigue and I will tell you this is beyond different. Something is very wrong. I have been through hell and back with this illness, and this is honestly making me scared.
I can’t wait until I see the sleep doctor. I will obviously mention the mono issue. But everyone seems to think it is something more, most likely narcolepsy with the array of symptoms I have. I know my body, and this isn’t just a mono issue.
I hope I get some answers and help. This is seriously destroying my life and making it really hard to continue to make strides in improving.
I have been trying to do things. We were invited the other day to watch the football game with friends right down the street. Nope. Slept thru it and we didn’t make it. I have to sleep for hours before trying to go anywhere, if I am able to get out of bed at all.
3 hours for a quick dinner, several hours to make it to go to a Halloween party with friends. It is one of the very few things I look forward to every year. It was a major struggle.
I also feel like an asshole to Olive as I have to put her in her crate if I can’t leave her in our fenced in yard, it has been too cold or rainy. I hate doing that when I am home but I need to sleep. She is a troublemaker and can’t be trusted though, but I really feel mean to do that to her.
I still have my classic Babesia symptoms, not seemingly as bad, but Bartonella has come out to play. Bartonella feet hurt a lot at night. Anxiety, anger, and paranoia. I am entirely oversensitive.
Each and everyday I have moments when I freak out thinking no one cares about me, my friends hate me, Dave is annoyed by me… I make up all these scenarios. And I think it so much it becomes real.
Obviously it is not, but it is still real very to me. I need to just try to relax and know that this isn’t reality, I am putting this all in my head. It is like I need reassurance from my friends and Dave… but the thing is.. IT IS ALL IN MY HEAD!
It will pass, it always does. It seems like it comes and goes in waves. But in the meantime I hurt pretty badly purely by my imagination.
The hallucinations have calmed down a bit though… Dave at least hasn’t had to pick through my food for spiders. 😉
My happy moment was Halloween. It was hard and I paid for it dearly for several days. I was lucky, there was plenty of places to sit and it wasn’t a crazy wild party or anything. We had so much fun and I was so glad to get out. I actually did okay. There was a few moments little waves hit me but I always came to and enjoyed myself. Again though, even though I was clearly invited I felt the crazy fake scenarios in my head of paranoia, I did try to be as much of a social butterfly as I could be.
I love homemade costumes. This year just wasn’t the same for me. I am usually ready at least a month in advance, and plan forever, but this was literally the day before I put our costumes together. I think I did alright though.
A goal I need to work on is to really get back to a ritual of my daily exercises given to me by my PT, and use the bike again. Suck it up when I am all disoriented waking up, or do it first thing in the morning even if it screws me up for the rest of the day.
My massage therapist warned me that I am losing muscle in my legs. This is the first time I have been told this. Since I have been really sick and a couch potato, over 4 years ago, I still had a bit of muscle. It was likely because I was so fit and active before my body said, “when”.
That’s not good at all. I mind over matter a lot of stuff and have done amazing things throughout my Lyme journey, but I will admit lately I have been slacking on the exercise. Really truly slacking.
And it makes a big difference with POTS as well. I need to boost my circulation. It isn’t fun to have to turn the shower off and curl into a ball on the shower floor because you are going to pass out.
Yup. A goal. Well it shouldn’t be a goal. I need to dedicate time to do this, even if I often sleep 15+ hours a day now. 10-20 minutes is a heck of a lot better than nothing.
Wish me luck with everything. Told ya, I have a lot going on!
Have a great day everyone!
And of course, Miss Olive. I have no clue how the heck she got up there. My Queen of the mountain.