Oh gosh, where do I even begin?! This past month has been crazy, a bit stressful, and I’m trying to remember it all!
First of all, I had my surgery! I am now tonsil and adenoid free. I am pleased to announce that it was NOT hell on Earth, as my ENT had warned me that it is a much more difficult surgery for adults, and everyone that I had spoken to seemed to have a ton of horror stories about it.
I learned a few things having my surgery. One – I fucking hate Powerade and Gatorade. The only one that is somewhat tolerable in my books is the purple Powerade, maybe because it tastes like children’s Tylenol. I’m just plain weird and have always loved the taste of it.
Two – You get sick of jello and Italian ice very fast. I developed a love for egg drop soup from the Chinese food place in town.
Three – Halo ice cream is like heroin. I am now an addict, especially the oatmeal cookie kind, and even now being all healed up, it takes a shit ton of willpower to walk past them at the store. They are just sitting there, waiting for me. Even worse is when I notice that there is a sale on those little pints of heaven.
I was pretty anxious before the surgery, between knowing I have a history of having nothing but problems with the actual surgeries and the healing process afterwards.
To make matters worse, a few days prior to my surgery, the hospital was getting all of my medical information together and wanted me to go see my cardiologist again to get another EKG done.
I fortunately had the hospital get in contact with my cardiologist, and they had me go in earlier to get an EKG done before my surgery, instead of having my surgery postponed.
Dave said I was in and out of surgery, it only took about 45 minutes. Quick and easy! I refused the fentanyl offered, and stuck with the hydrocodone that was given after the procedure. The less drugs the better.
I remember waking up and I was so thirsty! They gave me a lactated ringer, which I was very excited about, as it is very helpful to those with POTS, keeping up with the sodium and hydration.
I had to get up and pee a half a dozen times, which is good, at least I know I wasn’t dehydrated I had some ice chips and a smooshed up popsicle. As a higher risk patient, I had to stay an extra hour or so, but I was home by late afternoon.
I was told after surgery to take a week or even two weeks off of work which seemed a bit crazy to me. The ENT doctor gave me a week’s worth of hydrocodone… 8 pills a day. Well, I took 4 the first day and a half, couched it at my parent’s, watched some Netflix, took a few naps, and was back at work within 2 days and completely stopped taking the pain pills. Although they work great they make me wonky, and there is no way I would even be able to drive taking them.
I think the worst part of healing was my tongue being incredibly swollen. My tongue was definitely man handled with the forceps during surgery, and my neck was pretty swollen too.
I know, awkward pic, not my finest modeling pose, and pretty dark, but my tongue even got shiny being so enlarged.
Dave woke me up a lot the first few days to have me take a few sips of water. He said I was snoring like a freight train when I slept. I think the key was making sure my throat didn’t get dry.
It was actually pretty beneficial to have Narcolepsy, I just didn’t take my medication and slept it off the first few days.
I think by the second week I was eating soft foods, and although I had a few scabs fall off early, giving me a raw feeling, it wasn’t that bad.
I think for me, the healing I didn’t think was as awful as I thought it was going to be, my throat and lymph nodes hurt so bad before, so this wasn’t really all that much different. I also knew it was temporary, and that this problem that has been plaguing me for months and months was finally going to go away for good.
I got the results back from the cultures within a few days of my surgery. The office called my house and instructed me to stay on the amoxicillin they had me take.
The cultures did show that there was a ton of white blood cells, which means infection. Haemophilus parainfluenzae was the main culprit of my tonsil issues.
Veillonella was another bacteria that was found in my tonsils. From what I understand, this species is somewhat normal in your mouth flora, but it becomes a problem when there is too much and causes infection and a bunch of other problems.
I was super pissed the doctor did not do any of the tests Dr S requested, and I had asked him about doing a EBV PCR. Nope. Just bacterial.But, they found something, so I was actually pretty relieved.
I felt a little more justification, and knew that there was an actual cause to my throat issues, I felt a lot less crazy and now know it wasn’t an elective surgery, just taking body parts out for fun. Well, I obviously had some major throat issues going on for a long time, but I think I would have been pretty devastated if they found absolutely nothing wrong and they were just inflamed for an unknown cause.
My follow up with the ENT doctor was short and sweet. He said to me, what he has probably said 800,000 times in his career, “Well, there’s no tonsils in there!” Haha.
Everything looked great, and he was almost in shock that I told him it really wasn’t major, and I was right back at work, no pain pills, it was really unpleasant for a few days but tolerable.
No, it wasn’t hell on Earth. He was curious to see how my neurological symptoms were after the surgery, but my neurologist had told me I won’t necessarily know for a few months, as even if I feel like everything is healed up they might not be completely.
I was warned my ears might feel pain for awhile, especially opening and closing my mouth and opening my mouth wide, which has happened, but it really is pretty minor.
He then said to me, “I don’t think I’ll ever have to see you again, have a good day!” He gave Dave and I a handshake, and off he went. Alrighty then.
So, as I just mentioned, I saw my neurologist. It is always the same, a random chat completely not medically related, followed by a “Yup, you’re still a mess, see you in 6 months, here are your refills”. It was precisely that.
I had mentioned PANDAS during the appointment and he had told me it certainly could be and left it at that… which I found to be annoying, why didn’t he bring this up in the last 5 years?!
And that concluded my appointment. I guess bottom line he is just my drug dealer, whatever. Haha. A super nice guy, I know he cares but I think he just isn’t quite sure what to do with me.
I then had my yearly follow up with my cardiologist. Super easy. Test blood pressure laying down, sitting up, standing. “Yup, you still have POTS!” He said there wasn’t really any need for further testing but was open to if I wanted any. “I’m good if you are Doc!”, “I am, see you in a year!”
I’m not sure if I should be happy or sad about this, the nurse at the cardiologist’s office immediately knew who I was, even though I hadn’t been to this smaller office, only the bigger hospital in about 3 years. She exclaimed, “You’re the girl with Lyme! You look a lot better, you’re not moving all around like before or yelling!”
I guess it was a compliment? I’m glad that she thought I looked better, but I mean, she remembered who I was the second she saw me, so I guess I left some long lasting impact hahaha. Well, Dr J once told me I was probably his most “unique” patient, so I guess that follows me pretty much wherever I go.
Next, I saw my sleep neurologist. See? This past month has been crazy! Surgery, doctors, doctors, doctors.
Well, I told her that although my medication has helped tremendously, I am still crashing, falling asleep very easily, and then told her about my arms and head feeling heavy, especially with laughing, or being out in a busy place, and a few episodes I have had with “limp noodle seizures”, but I wasn’t sure if they were seizures.
Usually if I have a seizure, I feel an aura beforehand, I get incredibly sleepy after, I often piss my pants (lovely I know, but hey, I share the good, bad and the ugly), and none of these things happened. There has been a few episodes that I just go down like a sack of potatoes, lose a few seconds in time, then I am back up again.
She spoke with my neurologist, debating if I was having seizures or if the falling was something more, and kind of asked why I hadn’t mentioned some of these things before.
I am pretty sure I did, but I guess maybe it slipped my mind, I doubt it, but sometimes explaining and rattling off 100 things to your doctor things are missed. Well, it’s all out in the open now.
Diagnosis change: Narcolepsy WITH cataplexy. My medication dose has been upped, and she told me to play around with the timing, to take in two doses instead of one, to see if I can avoid the early evening crash.
She told me the treatment for cataplexy is generally antidepressants, but I really don’t want to go on them. I know it might help, but I am already on so many medications, and even though Abilify, which I tried in the past is a different class of drugs than an antidepressant, I have this fear I will have a bad reaction. I was in a full blown rage with Abilify… so I am not sure if I want to take that risk. It is a shame there isn’t more research for Narcolepsy and more options available.
The higher dose of my medication seems to be helping. I haven’t tried the maximum dose yet as I kind of want to stay consistent to really know what schedule is doing well so I need to take time with playing around, but I have noticed a change, and partly a reason I have been really taking my sweet time with my dosing schedule.
Hmmmm… I’ll try to explain… It’s kind of hard to describe. It is like my body is still pretty blah, fatigued and uncooperative per usual, but my innards kind of get this jolt of excitement like a kid on Christmas morning. That excitement and joy when you go downstairs and Santa brought all the presents. LOL It’s like my insides are going “WEEEEEEE!!!!!!!!”
I mean my mind is completely normal, I don’t feel like I’m high, it doesn’t make me jittery, my body doesn’t change, I just get this bizarre sensation inside. It’s not like I am talking loud or super fast, it is completely on the inside?
It lasts for about an hour or two, then goes away. Yeah, that probably isn’t normal. My blood pressure cuff crapped out on me, so I should probably invest in another one just to see if there is anything actually alarming. Who knows. Rather safe than sorry though!
I didn’t technically have an appointment with Dr S, just a chiropractic adjustment but of course we chatted a little bit. He gave me some chewable probiotics to add to my routine, I still have my gross black tongue, so maybe it will help.
My neck was really off. Several weeks ago, before my surgery, I smashed my head.. HARD. I was being polite and holding the door open for the dogs, and the 3 decided to have a race to get to the door first. So in turn, a 60, 70 and 90 pound dog slammed into the door at once, and the door slammed right into my upper forehead. Instant blackness.
The rest of the evening I could barely stand, I felt like I was going to throw up every time I stood, and I had a pretty big headache. I had a nice goose egg on my forehead. I did a mirror check to assess the damage and I really didn’t think it was that bad, but as soon as Dave got home from work he asked, “What did you go to your face?” Haha nice.
He kind of was trying to push me to maybe go get it checked out, but honestly, as you all know, even not having chronic illnesses, the ER sucks. I braved it, and took the “wake me up every few hours” route.
My massage therapist said my neck was pretty much the equivalent of having whiplash from a car accident, so she said I definitely got either a concussion or contusion. The next few days after this happened, I had a headache on and off, but other than my neck being out of whack this past month, I am pretty sure it was maybe a minor contusion. Either way, here I am, I lived to tell the tale.
Treatment has had it’s ups and downs. My protocol we kind of go with the term phases, I do a few weeks of my first phase, whatever I feel comfortable with, as much as I can tolerate, or as much as I think it is helping. Then, I switch it up a bit for a week, and I finished with a round of Coartem .
For those of you who are not familiar, Coartem is a treatment for Babesia. I knew prior to starting, it would either go okay, or very not okay. I can say officially, it actually went pretty well!
This is a 3 day course of treatment. A lot of symptoms did become worse during those days, and a few days after ( I am still dealing with some lingering symptoms nearly a week later), but it was completely tolerable.
Sweats, air hunger, hot flashes… I think the worst of it was at nighttime. My POTS did get a lot worse. I did have a “man down!”.. well woman down moment when I was getting ready for bed during this treatment. A little living room floor time.
I feel hot and cold at the same time, pour sweat and almost have this feeling that I had WAY to many margaritas. Kind of like the spins, but I kind of see black with little colored squigglies? I don’t know haha. Maybe you, my reader, has had a few too many margaritas at least once and know those tequila spins. Don’t judge me, in my younger years I’ll admit I had a little too much fun! 😉
With the lingering symptoms, I have been pretty sweaty, and have cranked my windows down driving with the hot flashes. A few day ago I passed out twice in one day. That was rather annoying.
I even figured I would cook corned beef because it is loaded with salt, which is needed for people with POTS and it didn’t help whatsoever. At least my dinner was yummy. Silver linings.
I was a little extra snoozy, my narcolepsy medication doesn’t work as well with the Coartem, so I only took a small dose, basically to make sure I made it home safe from work.
When I first started treatment back up after my ENT appointment, I really struggled for a few days. The nighttime nausea was really bad and I was completely depersonalized. Day two had to have been the worst for me.
I could feel my arms starting to tighten up and my hands, I couldn’t even really move. This really scared the crap out of me. I used to have what I like to call “mummy seizures” a few years ago, and it almost felt like this is what was about to happen. I was getting that aura. I immediately popped an Ativan, and took a nap. I was almost at the point of calling Dave, which is completely rare for me.
Flagyl days I tolerated better than in my past. I would get the heaves, and it would make everything worse.. I herx hard on it. It’s my excuse to eat an abundance of food though, it is my Chinese food days, Chinese is my savior when it comes to my bomb days.
At least compared my last round of Flagyl before my surgery, I didn’t have that complete state of depression and have any mental breakdowns. I am actually really surprised, as last month was quite the stressful. There was no tears. Who knows, maybe I just pushed all “the feels” in deep or the depersonalization took over.
My Grandmother passed away last month. I won’t get into too many details, it’s not my place, nor my story to tell, but there has been years of conflict, and that really made the stress a lot worse.
I am really fortunate that some of my relatives had reached out and included me several days prior and let me know what was going on, and I had a chance to say goodbye. I am so grateful for that.
On my way to see my Grandma before her passing, I had a realllyyy hard time. Even though it isn’t that far of a drive, maybe 15 minutes as a guess, I not only lost concept of time, I forgot where I was even though I have lived here my entire life and been on that road a zillion times.
I ended up having to pull over at a store as I had passed by the intersection to turn, and had to use Mapquest to remember where the nursing home was. I was having a total brain fart. I’m glad I pushed through and forced myself to go. Even though she was sleeping peacefully, I would like to believe she knew I was there. She passed away the following day.
I was on these treatments, including Flagyl on the day of the service. It was one of my “bad” days”. I was so completely out of it, Dave even said you could tell right away that I was not right at all. I saw some familiar faces that I haven’t seen in a long time that I was so happy to see, and let’s put it this way, a few I could have went without seeing.. LOL
When I was hitting Bartonella extremely hard a few years ago, I would lay in bed, and every single little thing in my life, all the decisions I have made, regrets, and memories would come flooding back to me.
Some of these things were pretty horrifying… and with my state of mind, being anxious, paranoid, and having hallucinations, I didn’t even know what was real.. if I was creating false memories that never really happened. Bartonella really screws with your mind.
Well, I had asked family about some of the things that came flooding back to me, if they were actually flooding back to me or if they were a figment of my imagination and unfortunately they weren’t.
They were very real, and it was to the point of finishing sentences for one another, everything was confirmed. I don’t know how my mind blocked out so many things throughout the years, but all at once everything came back to me. Ugh.
This is a weird thing, but so many events throughout the years, it is almost like just watching a home movie, I now know, but I don’t feel anything. It isn’t like I am reliving anything, it is like watching someone else, but I really could have done without knowing and kept those memories crammed deep inside my noggin.
The last part I will say, I am so brave to have put on a happy face, to pretend that everything was alright. To side aside the inexcusable things that happened to me when I was a child.
Dave said to me after this whole ordeal that he was so proud of me that I stayed so strong. I definitely had a huge sigh of relief when I woke up the following day, knowing that I could close that chapter in my life.
While continuing on with my treatment phases, I have found my first to be the worst of the 3. Aside from taking Flagyl which you all know I don’t enjoy, Clinda gives me a lot of stomach pain and queasiness. I seem to be able to push through the day, but I eventually hit a wall pretty instantaneously. Everything seems to kind of glaze over with fog and my vision, I get shaky and sweaty.
I did have an episode of body rocking while going to a friend’s kiddos first birthday party. I seemed to physically feel not that bad at least, the rocking was still there though. I was kind of thinking my body just felt like it was and I wasn’t actually doing it, but a friend questioned if I was alright, as she hadn’t seen me do that in a long time. There was a lot of people talking around me, and with any lights I’m not really used to, even though these weren’t particularly bright, I get effected.
I still do all these things, but you also have to remember sometimes with chronic illness, people generally see you when you are doing okay, they don’t get to see a lot of the hot mess because we stay at home when we feel really bad.
We go and do things on better days, or we have time frames of the day that might be better for us. For people that really know me, although I am a good actress and can push myself to the limits, they can tell by my eyes. My eyes are not good liars by any means.
Levaquin and Mino seem to be the best of what I can tolerate, and I am sooo much more active on them. My pain in my knees goes away, I feel a lot more clarity. I all around just plain feel better. I’m not quite sure why, but I will take it!!
I have been doing a lot more now, everyday I try to tackle something. Whether it is errands, or I have taken on the project of starting to deep clean my house. I have even spent hours scrubbing my walls and trim. That’s a pain in the ass and hard work for a healthy person!
I just had an appointment with Dr S. To come up with a game plan. Basically, I blabbered about life, how treatment has been hard at some points, but I am completely optimistic that we are on the right track.
I also had my little show and tell with all my pictures and on me the weird things I have had happening.
A random role in my toe, I showed him my arm that also had a little open wound, my black tongue (I posted in my last blog if you want to take a looksie), anything I could remember that would be relevant.
Side note – always bring pictures to your follow up appointments! Trying to explain something that is no longer there is hard to do, you might not get the right input without them actually seeing it, and you don’t want to look like a big ol’ faker now do you? Seeing is believing.
He did say the toe and arm could possibly be MRSA. Super, right? It has just about healed up at least but it did happen in the timeline of pretty much directly after my surgery. But, this could have also been Bartonella as well.
The black tongue is gross, we have pinpointed it to the Minocycline. In other aspects I really think the Mino helps so I will suck it up, just not use it as long at a time. Which is fine, switching things up is a good thing, it helps avoid resistance.
We are switching it up a little bit, and I will be doing a parasite cleanse. A few weeks ago, a little wormie friend was alive and chillin’ in the toilet. Yikes!
When talking to Mr. Cat person and not a dog person about this, he kind of suggested/blamed my poor, innocent, precious doggies as possibly not helping the situation. Pshhh!
Just because we give each other smootchies and have our snugz together every night does not mean they would do such a thing, infect their Mommy! Okay. Yeah. I suppose PERHAPS that thought is valid.
I know there are some critters in there, obviously, I mean I saw one, and everyone on the planet has parasites anyway, (Yes you. EVERYONE!) so I am looking forward to examining my poo. I kind of forsee it being like waiting for an Amazon package to arrive every time I look in the toilet after I do my business… is it here yet??! Haha.
I have read up a bit on doing a little deworming and from what I understand if there is critters in there, I should have Dave do a cleanse as well. Some, such as pinworms, are highly contagious. He probably won’t be all that impressed and slightly annoyed with it, but you gotta do what you gotta do.
After I do my parasite cleansing, we have decided to just go with the flow with treatment. Similar things I have been on that seem to be helping, some trial and error, see what feels right. Kind of up in the air I know, but the path I am on seems to be helpful, so we will just roll with it.
I have a big blood work sheet to complete on Monday. We are going to check the basics, and do my six month thyroid checkup. It’s always been completely normal but it is always something that is a good idea to monitor once in awhile. We will recheck inflammation levels, EBV and a few other things to see if there is an improvement since the surgery.
So, that is about it for an update I think? That was a novel. I apologize. I’m feeling good about the direction I have been heading in and I hope that things will continue to look up for me.
Just yesterday, I worked, and had a bunch of errands to run in town. Normally, I have to drive around in circles looking for the closest possible parking space for places like the post office, and if I wasn’t lucky to find a spot, or if I felt questionable as to if I would be able to even stand in line or do what I had to do, I would go home without any success and feel bummed the rest of the day.
Without a second thought, I parked up the street and walked. Did I feel good? No, but I wasn’t driving around in circles nor did I have to give up. I just did it. I know that sounds small but that is a pretty big deal.
Although I know I have a lifelong struggle ahead of me with Narcolepsy, I really think things are beginning to turn around that I actually have a real shot at those blue skies that Dr J had wished for me so many years ago. I’m not there yet, but I have the feeling the most recent path I am on, I might have a true shot of getting there.
Lastly of course, you get a Miss Olive pic! Here she is, being a good girl patiently waiting on the okay to eat her dinner!