I have recently reached the six year anniversary of my diagnosis and treatment of Lyme disease and several other tick-borne infections. Okay, it is no longer super recent but I have had a hard time keeping up with my writing.
I am unsure why this year’s anniversary really bothered me. I am assuming that it is because it is an oddball number of years, and past the milestone 1, 3, and 5 years.
Six years of time that I feel like I have lost and was completely robbed of. It isn’t like I can ever get that time back. I am angry, frustrated, and pretty disgusted at this heaping pile of medications that I have put into my body.
Before all of this, I used to not even want to take a Tylenol. Needless to say, things have drastically changed. I know some of you are probably thinking that taking this heaping pile of medications, supplements, tinctures, IV antibiotics, and injections was purely by choice, but I assure you that this was a necessity. To have no control over your body and mind is terrifying. Although I am not “better”, I have surely improved from where I started.
Yeah. The start of this entry probably sounds like a Debbie- Downer post and that’s definitely not my intention. I am certainly not a “why me” kinda gal. I am usually optimistic with my classic “butterflies, rainbows, and unicorns” attitude, but not going to lie, this just plain sucks!
For my optimistic point of view, I have a much better quality of life from where I started from the time of diagnosis to now. I always try to do my best to put things into perspective and look at the big picture. My hard days now are not even comparable to what they were in the years that have passed.
Since it is my six year anniversary, here is the links to a little summary of the last 5 years of my story –
Dave has been my rock throughout all of this. He loves me and has experienced every part of everything just has much as I have. I recognize this can’t be easy on him either to say the least. Although he might not be the one that is sick, his life has forever changed too, as well as the roles in our marriage.
In an instant, we went from a loving partnership and always going on adventures, enjoying hobbies together, and ahem..lots of intimacy (sorry TMI to my Mom and my MIL!), to him becoming my babysitter, my caregiver, someone I rely on way more than his share.
I have so much appreciation for him with how amazing he has been to me over the years. Honestly, it does make me sad for him, and I oftentimes find myself having feelings of guilt linger over me for being sick. I obviously cannot help it, but I am sure it is a lot for him to handle.
I really don’t know what I would do without him. He gets the biggest, shiniest trophy and gold star for taking our vows seriously. Tomorrow is our 10 year wedding anniversary. It takes a real strong person to step up to the plate and not bail when these things happen.
My parents have been a HUGE help every step of the way. My in-laws, my friends that have truly actually stuck around for the long haul. Under shitty circumstances, I am quite lucky to have the support that I do.
I have had a few appointments with Dr S since I last wrote. Let’s play catch up.
I did a poo sample through a company called Diagnostic Solutions. It is a very specific test that uses DNA and looks at all sorts of bacteria, enzymes, pathogens, parasites…the whole 9 yards.
Well, my test results were “off”. “Off” as in I was reported to the state. LOL Dr S sent me an email with my results and a heads up that I was reported by the company, as I guess they are legally obligated to do so. Fabulous. For a few weeks I was slightly antsy every time the phone rang, wondering if the state was going to call me.
The reason I was reported to the state was for having high levels of Salmonella. I did show other infections too, not in any sort of alarming levels (even Cholera?!) as well as needing to address gut issues as all the “happy bacteria” was pretty much nonexistent.
What I don’t quite understand is how I can have all of these problems and not be crapping my brains out and violently throwing up. I dunno. Either way, it was time for all these critters to go away.
This all put a further halt to being on any sort of antibiotic treatment. The importance of gut health is really underrated. Dr S really knows the importance of gut health, and that has remained a focus for a long time although I am now weaning my way back to some sort of treatment. It is modified from what I am used to, and I am now on several herbals, mostly addressing Bart the Beast. I will be adding Septra to my protocol pretty soon.
Hmm. I finally had another appointment with my ENT doctor for my Lymph nodes. It was all around kind of annoying. While I was dealing with my tonsils, he had suggested aspirating or a biopsy to test and see if they could find any answers.
This time, he suggested doing another scan, maybe one more specific. He told me he would talk to the radiologist and see what would be best.
I showed him my array of other blood work and he definitely minimized a lot of things. He told me there wasn’t really anything that reveals anything to be wrong with me. Odd.
I have had 6 other doctors: the sleep neurologist, my regular neurologist, Dr S, my gynecologist, my orthopedic doctor, and even my primary care doctor in which you are aware of how much he is a fan of me if you have been following my story all agree and acknowledge that something is wrong. There is beyond chronic inflammation. They just don’t know what is causing it. Most even commented on my continuous levels of EBV being high.
The ENT did say that there wouldn’t be a completely specific cause because there are so many lymph areas that are effected instead of one specific area, but finishing the appointment I felt pretty blown off.
I looked at my notes online that he wrote on the patient portal records to see if he was just being a dink, and he was. Chronic EBV (mono), an unknown systemic infection.
No shit. Let’s figure out WHAT this systemic infection is already. I knew it was going to be a project in the back of my mind. It took 7 months for him to take out my tonsils with his wait and see approach.
I waited a week with no calls about any new scans and decided to give their office a call.
My first phone call back (a few days later) from the nurse went as follows..
“He talked to the radiologist and it was decided that a new scan won’t help as you already had one. Can you tell me what lymph nodes are bothering you, how long this has been an issue, and which ones seem to be the worst?”
WTF! Was I the only one at my appointment? I told her I was literally in his office about a week ago and I talked to him, showed him my issues, he looked in my mouth, down my throat, and he felt all of these swollen lymph nodes.
I then told her that I have been a patient since July 2017, my issues became a real problem the very end of May 2017, but I even have photos dated back to November 2016 showing that these lymph nodes were a problem back then.
“I’ll talk to him and call you back with what to do.”
Annnnnddddd the second call. I’m a bit confused. I think he broke up with me? What do you all think? I am pretty sure I got dumped!
She told me I had two options. Option one was to call if it is a persistent problem or gets worse. It’s been 2016. I’d say it has been a persistent problem.
Here is a flattering photo of myself that I sent Dr S around Thanksgiving that year. I included in my email something along the lines of “Look at my messed up throat, gobble gobble, Happy Thanksgiving!”
I then told her it was a problem and asked if I should schedule an appointment as I wasn’t rescheduled for any sort of follow up. She then told me to not reschedule and he will not perform any further testing on me.
Soooo. Call the office if it gets worse, then I was told he won’t do the tests he had mentioned in the past, and then it jumps to, “Do not call and make another appointment with us.”
Isn’t that conflicting?
I asked for a referral to someone who might be able to help with my situation. She told me he will not refer me to anyone else.
My second option that she gave me was to go to my primary care doctor to figure something else out and was told that maybe they can refer me to someone else.
Uhhhh. They referred me to you.
I flat out asked her at that point if that was his way of dumping me as a patient, and she got all flustered and said, “No no! That’s not what I am saying at all!”
“Well, you just told me to not reschedule with you guys, he won’t perform any tests, nor will he at the very least refer me elsewhere. I am pretty sure that is getting rid of me as a patient.”
She then just reverted to the start of the conversation, verbatim, like an automated phone call when you accidentally get sent back to the beginning of the prompts when you press the wrong button.
I’m pretty sure that is shooing me away. I really have no idea where to go from here with my lymph nodes. After phone call #1 that morning I was holding back a panic attack and the waterworks telling my Dad about it.
Call #2 I think I expected this to happen in the back of my mind as I had time to reflect, but I was really mad. When Dave came home from work that day, I told him that I couldn’t talk about it when he asked how my calls went and I would discuss it later.
I knew I would take all my anger and frustration out on him. Dave told me, “That’s okay! Let me know what’s going on! I’m used to it.”
Oy. Not now Dave. Not now. ROAR
I gave it about an hour to even say a peep and I stayed in the kitchen in the meantime isolating myself. I think anyone even breathing loudly around me would have set me off.
I know I am strong even though I don’t always feel like it. I was telling Dave as I could feel my eyes well up with tears that I am just so angry. I feel as though everyone is giving up on me.
The one doctor that actually gives a crap and goes out of his way is fairly limited on what he can do for me. The way half these Drs are with their egos, they will not put his input into consideration whatsoever. It is infuriating. Not only being lost, but feeling like people are failing me left and right is a terrible feeling.
For the past few months I have had headaches here and there, and now it is a daily occurrence . I tend to have a lot of back of the head type headaches, but now they are in the front. The pain goes from my temples, my jaw and then radiates down my neck and to my shoulders.
I narrowed it down to my jaw maybe being a contributing factor, and I was right. I dragged myself to the dentist and got a check up and told them what has been going on with these darn headaches.
They did the usual x rays and exam first. I was VERY surprised that not only was there zero cavities, but there was no signs of gingivitis or periodontal disease. I was thinking that my gums would be a problem because my mouth gets incredibly dry on a lot of my medications. Hooray! That was one less worry in my mind.
I told them about my recent diagnosis of arthritis in my knee, and they were a bit worried that it could be part of why my jaw is a mess. Nope! I was diagnosed with TMJ (add it to the laundry list of shit wrong with me). My teeth have also shifted to the point that I not only have an overbite, but I have what is called an open bite, so I can’t completely close my mouth all the way.
I got the jokes from Dave about never shutting my mouth (hardy har har *eye roll*) but at least I have a legitimate reason now!
Dr S also got a laugh because if you remember for a long time, especially on Cipro, I kept feeling like my bottom teeth were loose or moving. I told him that I’m not crazy, they really were all along! Seeee? Seeee??!!! Looking back, I might have been given an “If you say so” look in response as well as a laugh.
So, braces for this gal. Luckily I am able to get away with Invisalign. I wasn’t sure how I felt being 31 years old with a mouth full of metal. I am not really looking forward to having Invisalign either upon reading that you can only have clear liquids with them in, you have to brush your teeth and floss every time you take them out to eat or drink anything else, and you need to wear them roughly 22 hours a day.
I suppose I can pound my 64 ounces of coffee daily, right? I’m sure it will be fine once I get into a rhythm and routine for everything. As of right now it just sounds like a pain in the ass.
I just got blood work done through Dunwoody labs that is a much more extensive version of the Alcat test that shows food intolerances. Igg, Igm, I will let you all know if the test is worth it once I get my results.
I figured I would revisit the basics and see if there was something adding to my inflammation. I know it isn’t the answer, but process of elimination and if there is something that is making my body any worse it’s worth eliminating.
Last week I did a round of Coartem to see how I would react. I was feverish, even more POTSY, and in a fog. I was even sleepier than usual, so there was a lot of napping. I was more reactive to Coartem than last year, but it was absolutely nothing like the first time I took it many years ago. I stared at a wall the entire time Dave was at work for over 9 hours. No pee breaks, no changing out of my jammies, no TV on. Just staring blankly.
I was at least fairly functional for most of the day. I do find it makes me feel more emotional, which I didn’t really need as my anxiety and panic levels have been through the roof lately.
I will be starting my one antibiotic along with herbals this week. I’ll be interested to see how I will feel considering I haven’t been on any actual antibiotics for months. One to start, baby steps.
My Tourette’s syndrome and stuttering has been more apparent lately. When I feel worse, which I feel like I have been slightly going backward these days, it definitely kicks it into high gear.
Oh gosh. I had “a day”. I had to go to the post office when I was done work to send some mail certified. I was waiting in line and I could feel my body, rocking, rocking, swaying in the non existent breeze. I could feel my hands moving all around, so I kept trying to at least keep the empty hand in my pocket so it was less noticeable.
The verbal aspect of my Tourette’s syndrome is like a ginormous sneeze brewing. Trying to hold it in makes it 10 times as bad as just involuntarily blurting out whatever your brain feels like in that given moment.
I was dumb and held in that sneeze. Oh god. Oh god. *ACHOOOOOOO!!!!*
“NAAA NAAAAA NAAAAAAA!!!!!!!”
The guy next to me in line backed away quickly, like I was either going to spontaneously combust or this was something he could catch by standing near me.
It has been awhile for any outbursts, but they’re back! Super. At least it doesn’t bother me like it used to when it first started. Although it was a bit embarrassing, seeing the guys reaction and facial expression was pretty funny.
The tendon issues from my arm have now spread to my hand. My body isn’t happy with me and is beginning to scream in pain many days. I have been foggy, depersonalized, shaky, and nauseated even not taking any antibiotics.
Yesterday, I went to the store and had to sit in my car for nearly an hour because I was so out of it and I was having a hard time feeling my arms and legs. My fingers and feet were tingly and numb and I was beginning to feel dizzy and nauseas. I actually left work early today and I always stick it out. I just feel awful.
I am really hoping starting treatment will either keep me more stabilized or put me on the right track again.
I have done a lot in the past few months, probably too much. I have been in a frenzy cleaning when I have any better days. I almost think it is partially OCD or slight manic behavior, as I kind of feel mentally much better on those better days and kind of an overly happy-ish feeling, and it follows by several awful days that my mind plays horrible games with me. It’s a vicious cycle.
I have driven further than I have in years since I last wrote, 45 minutes each way. Only once and with my copilot, Dave, but that is pretty great!
I had to take Cooper to the vet to get some lumps and bumps checked out (he’s fine, thank god, he’s just a lumpy meatball I guess LOL ), and that was a lonnnnnngggg day.
I was happy when I got home and told Dave my array of errands, work, the vets, driving, and he brought up such a good point. “You may feel awful, but you did it. You couldn’t do that in years.”
He is so right! There is just no flipping way that would be something I could do. Silver linings.
Some days I really just want to say screw it and give up on treatment, pills, protocols, and just see what happens. But, I can’t and I won’t. As much as this sucks I need to keep pushing. I often dream that one day I will just wake up and everything will be all better and this will all be some memory from long ago, and not my current reality.
I know some things will never be the same, and I have pretty much over time learned and grasped that these things will just be there. Chronic Lyme you hope to reach remission and stay there. You have to be vigilant and the flu, a stressful event, even at random you can spiral right out of remission that you worked so hard for.
Narcolepsy there is no cure for. Tourette’s syndrome and a lot of other conditions I deal with can be stabilized but that doesn’t magically make them disappear. Chronic means chronic. If you reach a level of normalcy in any way, you constantly have in the back of your mind this fear that everything is going to come back full force. This is all my current reality.
That’s okay. Fine. I think every single one of us with a chronic illness grieves what once was, and share the same dream that this will all just be a memory. But I want to FEEL okay.
I need to keep pushing, fighting, making phone calls. I know I can do better than this. This is not where my end point in healing is. No way. So, I need to fight and fight, never give up. I know little bits and pieces can improve, there are things missing. What they are? We are still trying to figure this out.
Those little little bits and pieces can drastically change my life for the better, and that is what I need to keep fighting for. Onto year seven, I’ll say what I do every year, this will be my year. This time, maybe it will.
I have to include Ms Olive of course! My picture wasn’t too successful, she wasn’t having it and it appears that I have been photobombed..