This past month has been kind of bittersweet. It marked the three year anniversary being treated by one of the top LLMDs in the country. There was a tremendous amount of hope beginning this new step in my journey, yet the path has been less than easy.
I am nearly four years into treatment, and this path still isn’t easy (LOL), it has certainly taught me that patience is a virtue. Pshhh. Darn life lessons.
Anywho, my TimeHop on Facebook reminded me of the video I posted when I first started my blog exactly three years ago. It definitely left me reminiscing about the past.
Disclaimer: I am having a hell of a time figuring out the right words today. Google has been trying to lend a hand but I don’t know if it is working out so well or not. So, just bare with me and I am sure you can figure out what the hell I am saying haha.
Please check out my “About” video on the top of my page. You will see exactly where I started. Well, not where I started, as I had already been through about 8 or 9 months of treatment, but the starting point with this LLMD. * This is when you check out the video*
Once again, this will all make sense if you watch the video. Or I just sound like I am rambling. I sort of am. That’s okay though. It happens.
Without the help of my amazing doctors, I would not be where I am today. After discussing with Dr S, I was lead toward the diagnosis of Tourettes syndrome, as his research really brought out the flaws of my current neurologist. It was brought out from being sick, and can also be genetic, but it is so much better than it was and we have found my main “triggers”. The IV treatment and neurological medications have helped lessen this tremendously.
My other photo for that day was one evening that a best friend and Dave pushed me in my wheelchair so I could be a part of hanging out. Thumbs up, of course!!!!
I no longer need my chair or a lot of assistance, I still need to hold onto Dave once in awhile, or unless it is a super long walk with bright lights.
I have had since then had 11 months of aggressive IV and oral treatment after 5 months of IVs and a few months of orals alone with no success.
There has been so many bumps in the road (ok big ass potholes), but look how far I’ve come!
I know it is still a very long road, and now it is most of the time my struggles are invisible to others. Watching this video was a sombering reminder of how great I am versus how used to be.
All I can say and my piece of advice is, don’t ever forget those silver linings if you are in a similar boat. Look for anything positive, big or small, in your life or what your can do or accomplished.
I still love my life, and everyone who has been a part of it who loves and supports me has certainly made it so much easier.
Now we are back to 2016 and how life has been…
For awhile, I was really anxiety ridden. Even though it wasn’t really my deal, I get all flustered doing anything out of the ordinary. One of my best friends got married, and I was a bridesmaid. Dr S jokingly said to me, “what was she thinking?!” So, yeah. I was a bit worried.
The morning of, I did poorly. I was having unintentional blank stares and ticking while trying to get my hair and makeup all done. It was enough for one of the bridemaids and the bride to ask and make sure I was okay. What was I suppose to say? “Umm no, I am feeling like I need to curl up in a little ball on the floor?!” LOL Another bridemaid snuck into town and got me a protein drink as well. I have kind people in my life.
I pushed through, and someway, somehow pulled out of it. I did REALLY well!! It was really hard to stand there and take pictures, it was also hotter than Hades out, but I made it. I EVEN DANCED!!!!!
That is absolutely huge for me. That day was also the longest I have been on my feet in years. I am so proud of myself.
This really shows how things can really change from one part of the day to another having a chronic illness. I am so glad things turned out the way they did.
It was a beautiful day. I might have cried a bit during their ceremony, but at least it wasn’t an “ugly cry”. Haha. Tears of joy.
I’m on the very left side. Dave is on the very right side. Shows you how one can look perfectly normal and be sick, huh? We are all a great looking bunch. Never ever prettier than the bride though!
I did spend the next few days making up for it. Of course, I needed to catch up on my sleep, and a lot of my body kind of decided to hate me.
My calf muscles have been painful, and I keep getting edema in my feet and ankles. Making sure I stay hydrated and elevating my feet seems to help and it never stays, so I am not quite sure why.
The endometriosis pain is back. This time however, there has been some spotting. I almost forget girls get their periods. It’s been 8 months. 8 months that I haven’t missed.
For the past few weeks, Dave has gone grocery shopping alone a few times. That is usually our time to get me out of the house and get some exercise. A lot of times I try to go, and I make it most of the way, but I get the “time to go out to the car” from Dave, he hands me the keys and I wait until he is finished.
I have had a lot of days that I have been really cloudy and ticking. Days that I want to run some errands, and I sit in my car trying to collect myself and have enough oomph, and I end up going straight home. I just can’t do it, and it wouldn’t be safe.
There has also been a few night time scares. For those who do not regularly follow me (you should, I am awesome), I have POTS. Dave has no longer been babysitting me while I take a shower for awhile now, and I am now having some dizzy spells again. My body cannot regulate temperature whatsoever, and I think that doesn’t help any. I have had days in the past that Dave would help me out in the tub, he would tell me the water was incredibly hot, yet my body temperature would go down to the high 95’s, I would turn blue and he would have to warm me back up. Dr’s still don’t know why this happens to me.
I can feel it coming, well… most of the time, and I quickly turn the shower off and seek cover. Even if it is laying in the tub, on the bathroom floor, anything. I would prefer to not go down like a sack of potatoes.
I have also had some good moments though. Running errands, being on my feet more, doing some pool exercises, just trying to keep going.
I know I had Dave do some shopping and I have had some unsuccessful trips at the grocery store, but there has been days that I went all by myself, to two stores to get everything we needed! Dave and I even went to motorcycle week so I could get my Dad his early Father’s Day present, a tee shirt. It was busy and I did a decent amount of walking. Get those legs going!
I focus on the good. It keeps you going. No use in moping and wrapping your head with all the bad. It really isn’t a great motivator for healing.
I had mentioned and posted a picture of my Bartonella streak last time I wrote, and I am thinking I am having a flair. I am only like this is Bartonella is having a party in my brain…..
Okay. I have a confession to make. I had a super Lyme rage moment, I was not my finest ladylike self. This woman probably thought I was what is wrong with America today and I am an awful troubled youth. Oy.
I was sitting in the grocery store parking lot. Of course I was! I have to recoup from as much as picking up peppers and onions.
She swung car door open, hit my car, and began to walk away like she had done absolutely nothing wrong. I WAS IN THE CAR AND SAW HER!!!! It’s cool right? No. Not cool.
I then backed up my car and blocked her in the parking lot and had some words with her. It began with how disrespectful that was as I was sitting right there, and if I wasn’t around she should have left a note to every single cuss word, c bombs and f bombs flying for about a solid five minutes. Just imagine five minutes of being reamed at by some crazy girl with every swear and name calling in the book.
She simply said in the midst of my yelling, that I was near the white line (THE PARKING LOT WAS NEARLY EMPTY, PARK SOMEWHERE ELSE! I WASN’T BY THE WAY, AND THAT REALLY ISN’T RELEVANT WHEN YOU SLAM INTO SOMEONE’S CAR!!!)
All the while, when I was completely flipping out, calling her names, just having complete word vomit all over this idiotic woman.
Did I overreact? Perhaps. As you can see it is still a touchy subject. Haha.
But who the hell does that? I know I sure wouldn’t. By the way, my car was absolutely fine, I had her license plate written down in case, but there was a massive amount of navy blue paint on my passenger side rear door. Take that!
Here is a link that discusses Lyme rage in full:
You can read all about my jerkface moments, as this has not been the first, and I am sure it will not be the last. It will probably help a lot of you relate, and a great read for family members to understand this isn’t always “you” when these episodes happen.
I have some of my recent lab results back, and also had some tests done. I had my Vit B levels checked, and they were over 5,000/ Normal levels 200-900? Dr S said too much can cause adverse reactions. I want to be retested though to see if it was a fluke. I have been making sure my supplements don’t contain Vit B and I will mention getting the test redone at my next doctors appointment.
I have the feeling everything is just floating around and not being expelled nor absorbed. Hmmm..
I had to get a mammogram done, and t turns out I have some very fibrous tissue, and they found a small mass. They wanted to be safe, as I have a family history of breast cancer at a very young age, do I had an ultrasound done. Turns out, I have a fluid filled cyst, and a few smaller cysts in my breast, and that is what is causing the pain.
Of course, Miss Research right here, a lot of information contradicts itself. When to worry, what size is too big or too small, and it appears I am at the borderline range. Most of the time these go away on their own, and I have decided to wait it out a few months, see if there is still pain, and go from there. I believe they will just insert a tiny needle and get the fluid out. Easy peasy.
I will cross that road when I have to. It is nice to not have one more thing to add to my list of falling apart, although I was not entirely worried to begin with, as you don’t know until you have the results right in front of you, there is no point in freaking out.
On a good note, they also will have these images to compare to if I ever have another issue arise, and it will be a lot easier for the radiologist to distinguish any changes.
Well, that is about it everyone! Wishing you all a happy Friday!
Almost forgot, here is my routine picture of Olive, my precious sleeping beauty.