March Part One – Seeing Blue Skies

Oh gosh, where do I even begin?! This past month has been crazy, a bit stressful, and I’m trying to remember it all!
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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.

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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.

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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!
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January 2018 – Onto Another Year of Lyme

This past month has been pretty hectic, so once again I have been slacking with an update. I have been so back and forth with my treatment and recently started a new protocol. I’ll get to that later. I’ll try my darnedest to not be scatterbrained and all over the place, no promises though.

Let’s start with my ENT appointment. As you may recall from my last entry (if you don’t, you need to follow me, I am quite awesome), Dr S, my Lyme literate naturopath, wrote a great letter to the ENT doctor advocating for me, pushing toward surgery.

In the letter, he mentions several different tests to do, and a big hunch that I have PANS/PANDAS. He also recommends IVIG treatments.

Well, Dr S is a naturopath, and as some of you may have experienced that has a team of doctors, you will find according to the ego of other specialists and MD’s, a naturopath is not a real doctor. Naturopathic doctors just give you berries and twigs and are a bunch of dirty hippies. Haha oy vey.

The ENT doctor focused on Lyme, and the unlikeliness it has anything to do with having chronic tonsillitis. Hmm.. I am nearly positive that was not mentioned in the letter at all. This was the immediate start to the appointment.

Swabs were taken of my blistery tongue and of my tonsils. Unfortunately, he did the bare minimum testing, which was pretty annoying. Himself and Dr S had mentioned other tests to do, such as a fungal smear, and that was never done. I would have loved to have a viral smear at least. But nooooopeeeee.

We discussed PANS/PANDAS and although the ENT doctor said it was a possibility, I was told he did not know me well enough to say for sure that this is the case. I suggested to him to speak with my neurologist, but he brushed it off. Also, there was no mention of IVIG treatment.

This appointment wasn’t seeming to go all that well as you can tell. He even got snippy and annoyed at Dave when he asked a question to clarify something. I can’t remember what it was for the life of me, but the doctor’s reply to Dave was, “We already talked about this last time”. Okay?!

This appointment looked like yet another, “I’ll see you in 6 weeks”, but I think a teeny tiny part of Dr S’s letter might have sunk in as after examination and what we could get for a real discussion, he said we could do the tonsil and adenoid removal surgery.

The ENT doctor said to me, “I have been doing this for over 30 years, and I have never had a patient with so many ongoing issues. I usually deal with one or two things. You have so many that overlap one another.”
Gee thanks?

When he examined me, he told me that my swollen lymph nodes that are continuously spreading wouldn’t be related to my tonsils because of the location.

My spleen is enlarged, and that also has no connection to the tonsils as well. I was kind of hoping it was all correlated. EBV or Babs I’m guessing is causing the spleen issues again. Boo.

I was then told that he cannot guarantee anything to me with all of the ongoing and overlapping problems. I was given a big MAYBE that it will help my throat issues, and some of my swollen lymph nodes. It MIGHT help with possible neurological issues, and it could POSSIBLY help with my now what seems to be a new normal, ear infections. I have never had ear infections until this past year, and I’ve had several including a perforated ear drum.

I had a pretty heavy discussion with Dave about having surgery. I know it seems like a simple procedure, but adult adenoid and tonsil surgery is a whole different ball game. It takes a lot longer to heal, it is a lot more painful, from what I hear it is just reallllyyyyy unpleasant.

He gave a big, “It’s up to you”, about it.. which isn’t overly helpful or insightful so I pushed him and told him that I needed real thoughts on having this procedure done. Dave brought up some pretty valid points to consider. One, I don’t heal well at all. One example is my gallbladder surgery. Post-op infection, almost needed a drainage tube.

The second point he made was that everything that should be simple procedures always seems to end up as projects. My heart monitor I should have been in and out of there within an hour or two, and it almost ended up being an overnight stay. My gallbladder I was in the hospital for two days. My leg procedure a few summers ago I ended up with a clot in my leg. Nothing ever goes smoothly as it should.

Dave’s last point was what had been discussed at the appointment. We don’t know for sure if this surgery will be extremely beneficial. It’s a crapshoot, really. Obviously, the biggest concerns I should worry about at the moment regarding my tonsils is the fact that they are swollen, have been for several months, and it does effect me on a day to day basis.

My throat is really uncomfortable. My lymph nodes that definitely coordinate with tonsillitis are painful. I’ve been having issues with breathing, gasping for air at night, and I occasionally have a sensation that I am choking trying to swallow.

Will it help with anything else? Not a clue. But Dave does know it has been one additional sucky thing on my laundry list of problems. It is all about the risk vs the reward in my case.

So, the decision is made. I am taking the big gamble. Let’s cut those fuckers out. Do it up. Why not. I am going to go with the butterfly, rainbow, and unicorn attitude that this surgery will make a huge difference between my ongoing throat issues, ear infections, and potentially help my neurological issues.

It HAS to at least help my throat. I mean after all, the ENT doctor has been dragging me along for a very long time, and I am sure after my previous appointment with him mentioning I might need surgery and then saying how terrible it is for adults… I believe his exact words were, “ It is the most painful thing you will experience having this surgery as an adult”.

I am really betting that won’t be the case but for him to say that, then suggest surgery during my next appointment he wouldn’t have even put that on the table if he didn’t think it would in some way, shape, or form be helpful. I’m kind of at my wits end with this so I think it just really needs to be done.

My next appointment on the list last month was my yearly eye exam. It was a big “aha!” moment. I figured I would bring up my head pressure issues since it does effect my vision, especially if I am completely losing it for several moments. He knew exactly what it was when I was explaining what has been going on with him. Ocular migraines.

Who woulda thought out of everyone that my eye doctor would know what this issue is. Of course almost all the medications that are used to treat them I am already on, but sometimes you just need a name to these things going on in your body to kind of keep you sane.

I mean, this is an actual diagnosis, but sometimes people need those “feel good” diagnosis, a title to all your symptoms that doctors throw out there when they really don’t have a friggin clue. I definitely needed a title for this issue after my neurologist said, “You got me!” telling him about my head feeling like it was going to explode and not being able to see.

At least I know now. And I also had the annual question if I have been tested for Myasthenia Gravis after about a minute or two of talking with me, staring at my droopy right eye. Haha. Always up there in the titer, still negative, not enough to get treated or diagnosed. We evaluate it every six months or so. Always the same, never technically a positive result.

On top of all of this, I have been doing pretty aggressive treatment protocols. I was doing Alinia, Augmentin, and Cipro for quite awhile. Eventually, my tummy said, “when”, and I took a short break.

We are always very cautious with my stomach as that has been an issue in the past, and I ended up having to take a much longer break than I would have liked to, with lots of supplements and a very strict diet to get it back to normal.

I fell apart during this protocol. My POTS was much worse and I ended up having several episodes of chilling on my bathroom or living room floor. I ended up getting this weird rash on my shoulder (Dr S immediately said Bartonella is flaring pretty badly), and I was having some major pain issues.

My knee almost feels like bones are rubbing, and there is pain on top of my kneecap right above the bones. Dr S told me that Bartonella really likes to get into tissues, bone, and cartilage, so maybe that is what is going on.

Other than my bum knee, my legs have had a mind of their own. They are either jello, I’d describe it as the feeling you get when you have the shit scared out of you, like when someone almost causes an accident driving or something.. you kind of know what I mean, right? Well, that is my jello legs. I get either that or no feeling at all below my calves. In turn my hips and lower back make up for walking, so they get pretty tight and uncomfortable.

I have been pretty brain fogged and getting confused easily. Bartonella I know is definitely back, as I started to have moments of feeling a little nuts.

I booked an appointment with Dr S and we discussed another game plan. With Lyme and co’s for so long, and having a lot of experience with treatment, I always kind of jot down different ideas with protocols. I find this funny somewhat, but appreciative that I have a doctor that listens, he even took my little notes with protocols and photocopied it at my appointment.

I had mentioned the rash and showed him a few pictures, and as I had said, Bartonella is back and in full force.

I told Dr S how my month had been going, and in addition to what I have mentioned, hot flashes, edema in my legs and ankles, and being even more tired than per usual.

I gave Dr S a little disclaimer on this symptom that seems to reoccur, that I’m not nuts, and told him he would find this a bit ridiculous…

Every single time I hit Bart, I have this sensation that my teeth are all loose and begin to think they are rotting out of my face. I am not really sure why, but I end up having Dave do a nightly check of my teeth to give me comfort that they are not all loose and rotting. I told Dr S I know they aren’t actually falling out and he kind of chuckled at my original disclaimer and replied, “Well, that is a LITTLE nuts”. Haha.

Well, I suppose it is. He’s known me long enough that all these hallucinations and voices I at least know aren’t real, this is just one of the things I deal with when treating Bartonella. It is annoying, I like my teeth, and I prefer not to look in the mirror and obsess over them, but I am just stirring up and killing bugs.

I already far surpassed my out of pocket costs with insurance for 2017 and I have to start all over with the new year, so you know what that means.. stockpile of my meds!

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Kinda gross I know, but it is a wise decision, especially with Alinia. Even with insurance a week’s worth was around 200$.. I got the biggest refill I could, several weeks worth for free! Free is for me!

Andddd the blood work. I always tell Dr S to not be shy with my blood work as we are always looking for answers, but I always do a big donation to the vampires at the end of the year.

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This draw was a pain in the ass.  Between the tech looking up the tests and multiple stab wounds, I was at the hospital for a good 45 minutes, and I even got it done when there was no one else in line.

Oddly enough, I always feel a lot better after a blood draw.  A little body clean out I guess?

Once again, EBV is completely reactivated. I would definitely contribute this to some of my ongoing symptoms, and have been doing my herbal antivirals in hopes the next time I get tested my levels go back down.

There was a few other tests that were slightly off, one being VEGF. I wasn’t really too familiar with this, but I guess it is a test that Shoemaker does. Knowledge is power, so I did a little delving on the Surviving Mold website.

VEGF has to do with blood vessel formation and blood flow. If it is low, that is bad, kind of common sense. I don’t know if Factor V Leiden would contribute to this, or the fact that my circulation has been piss poor lately.

I left the office with a Bartonella focused treatment. I started my new regiment out with Mino, Clinda, and Flagyl, and did this round for a few weeks. Next time I go back to it I will be adding A-Bart and Houttuynia.
The first week or so was pretty miserable. Nausea, fog, shaking badly, I was completely depersonalized.

I ended up having a bit of a mental breakdown the week before Christmas. I get overwhelmed every year doing all the baking, shopping (even though it is online), going into the card store to pick out some cards, sending out cards, everything.

There was a few days I needed to run errands and I sat in the parking lot at these places I needed to go and had to drive home empty handed. I did a few drive-byes in town to see if I could get a close parking spot to the card store and I knew I couldn’t walk that far, get the cards, and walk back. It was just too much to do for a day.

It seemed like the Flagyl days and the day after made me super depressed. I wouldn’t even have a reason why. I do know though, every single time I am hitting Bartonella really hard, this tends to happen. It always goes away, but in the meantime it stinks. Not only is it exhausting, it makes me paranoid and anxious about every little thing.

Dave came to my rescue though, and buttoned up everything I needed to do, like the baking and making my traditional holiday beef jerky for my coworkers. I came home to this all completed as well as having the dishes done, laundry swapped over, and my “honey do” list completed, including putting a new filter in our water system.

Side note: a honey do list is a list of chores for your man. He is usually pretty good at getting these done in a timely fashion before I remind him of the honey do list, so he gets a gold star.

As I have continued on with this protocol, I have noticed I have been doing some pretty awesome things. I have been having little chunks of the day that I have more energy, and have been doing a lot more. My “thing” lately is cleaning sprees.

I do hit a wall eventually, but I have really been getting some serious cleaning done, and have been doing a lot of cooking and can actually run a few errands and stand in line without fearing I will pass out or having to lean on something casually so no one notices.

I went to Walmart with Dave, my previous trip a few weeks prior was a complete bust, Dave had to bring me out to the car and nothing got crossed off our grocery list that day. This time although we didn’t do the entire store, we grabbed everything.

Dave had me hold the cart for some balance and I did it. We rarely go to Walmart, but I usually rock a scooter and my shades when we make the trip.

Toward the end of shopping, Dave was kind of in a mad dash to grab everything, and asked me to read off the list of things we needed as it would go a hell of a lot faster if he just went down the next isle or two to get things.

I ended up developing some foreign language, and replied either stuttering or yelling “BABABABABABAHH!” It doesn’t even phase him at this point, he just grabbed the list from me and made sure I held onto that cart good and tight haha.
I made it though! Walmart is really hard to do. Between the lights, the stimulation, and the fact there is a lot of walking, it is a lot. I slept for 4 hours when I got home but it was a successful trip.

Round two of my protocol was Mino and Levaquin. I am actually quite surprised. There was no nausea, no bathroom emergencies (LOL), and the first day of starting this protocol I worked at my Dad’s in the office, and then came home and scrubbed my bathroom. I was expecting to be on the couch in misery, as that is usually how day one goes, so this was a pleasant surprise.
I have continued to really get a lot accomplished and feel like a productive person doing this new protocol. Hooray!!! Little things are big things!

There is always a BUT, my new protocol has given me the most disgusting tongue. I woke up one morning, began to get ready, and when I brushed my teeth this little surprise was on my tongue.

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Ummmm what the hell is going on??!!! I’ve gone from blisters to this mess?! This really can’t be good. After all, black is the color of death.

I brushed and brushed, scraped, it just wasn’t coming off. It isn’t a film like thrush that can come off. I did a little research and it can be an abundance of things, but Mino can also cause this particular issue.

It is a little concerning, I mean, it’s not healthy looking, but I am a little afraid that if the ENT doctor sees this I might not get the surgery. I will have to detox, anti fungal, anything I can think of before surgery day. In the meantime, needless to say, there will be zero French kissies between Dave and I for awhile.

Well, it is now 2018. Yikes. Dave stayed up to watch the ball drop with me on New Year’s Eve (which was a surprise, his usual bedtime is around 9:30 since he is kind of an old fart) and I couldn’t help to feel a little bummed out. When the ball drops, it is sort of meant to symbolize a new year, a fresh start, but I couldn’t help feeling like another year had passed me by.

Just looking on paper the year 2012, the year I started treatment, and then seeing 2018… that is a big gap in numbers of time that has pretty much been a nightmare that I wouldn’t wish upon anyone.

Well, maybe for a day in my shoes if you are a dink to me, let’s be real here. You are a total liar if you don’t have that slightest feeling once in awhile. Everyone has that one person who completely judges or misunderstands you and you are talking to a brick wall with anything regarding to your illness, and you’d like to just give them a teensy tiny taste of your reality. Just a day, nothing permanent, just to have them understand.

Looking back this past year, I have really gone through a lot. The biggest being my narcolepsy diagnosis. I know this will be a lifelong struggle, I just hope that one day it will be controlled much more. With so many overlapping issues it is always hard to differentiate between that and things like chronic EBV, the Lyme, the co’s, the neuro crapola.

My throat issues have been going on for a half a year so far. It’s been miserable, but I have high hopes that 2018 will change that, and I am hoping it will be beneficial all around.

Although some days I feel like I am falling apart, there have been so many days that I have seen real improvements. BIG improvements from where I was in the beginning of the year.

Getting treated for the narcolepsy has given me a higher quality of life. At the end of 2016, right before my diagnosis, I was in tears at Dr S’s office, which I hate as I seem like a big ol’ baby, and said to him, “This is not living”.

It’s true. Going through the motions of daily life as much as you can, but it is to only to get by. You are no longer you. You spend your days focusing more on when you can sleep, falling asleep, feeling every little bit of these infections taking over your life. There is no room for anything else and it is absolutely heartbreaking.

I wanted so badly to be able to go out and do more, but it isn’t like I can just drive anywhere, let alone go anywhere other than small local places on my own. My body just won’t let me.

I know Dave certainly wanted to do more things together, but there is a point in the day my body just says “when” and that little window of being able to even try disappears.

I am a rockstar, I am strong, I am brave, but I have my moments.

I feel like once you are seasoned with having chronic illnesses, and are no longer as sick as you once were, you feel every single thing a lot more. Physically and emotionally.

Physically, this disease has been really debilitating, my body just wants to what it wants, and I really have no control over it.

Emotionally this all has really begun to take a major toll. Ummm… where the hell did my 20’s go?! I think maybe because I turned 30 this year, maybe because I reached my anniversary of the fifth year of my treatment.

I have begun to  experience anxiety about everything. I have found myself overanalyzing the most insignificant things and having paranoia, I have definitely become more of a recluse.

I used to have a great, “whatever” and a pretty care free attitude, I still do have this attitude a lot of the time, but these emotional issues are pretty new to me, something I have never really  experienced. They suck.

Although I am not better (yet), I really am a step ahead in my progress. It doesn’t really seem like it a lot of days when I am struggling, but I know I am heading in the right direction.

Treatment is by no means fun, especially with such an aggressive approach (I prefer aggressive, I don’t mess around), but I know it is working. I have felt “stuck” for a very long time, but I think my combos are the right ones for me.

With Lyme and co’s, there really isn’t a right or wrong way, and everyone is different. Basically, it is trial and error. I think I might have hit the lottery on what might be the most effective treatments for me, and I’m really thinking there will be significant changes throughout the year.
I know slowly I am seeing bits and pieces of those “blue skies” Dr J talks about.

When I see those pieces, I have hope. I know I overdo it in those moments and pay for it but it is so worth it. Those pieces are finally coming back that I have fought so hard for. Who knows, maybe next year I will be writing about that one word we all pray for every single day, “remission”.

Wishing everyone a healthy New Year! Of course, you get an Olive picture. On one of my sprees, I folded my gigantic pile of laundry, and she was my assistant. She didn’t actually do anything to help, but isn’t she just the cutest?
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November Part 1 – Antsy

Right now I am doing the hurry up and wait game with my ENT doctor.  I recently went back for my second visit and if you remember from my last update, he asked during my first visit if I have Lyme and the nurse told him I had a CDC positive Lyme test. Many of you know how that goes. Lyme can’t be long term, it is allergies. I have allergies with entirely negative allergy testing and a normal EOS. Go figure.

His original diagnosis on top of non existent allergies was laryngopharyngeal reflux.. but he kind of changed his tune during this visit. He basically really doesn’t know. Viral? Bacterial? Medical mystery once again. Go me.

He didn’t tell me to change anything. That is just one “issue” that came to mind, but there is no explanation on why I have had tonsillitis since May. I have followed his instructions perfectly. He put me on protonix, and told me to have little to no fat.

In addition to the whole no fat diet (which I personally disagree with, people need some healthy fats in their diet), I have not been eating spicy foods, acidic foods, or anything else related to reflux.

He didn’t even instruct me to do so, but this has been absolutely awful. I feel like I am breathing through a straw, my throat is closed and sore, and the lymph nodes under my chin and the sides of my neck are excruciating. Not to mention they look horrible, right now you can definitely call me Kimmie the frog.

My ENT does seem like a semi decent guy but has a massive time crunch. I kind of feel like I can’t get a word in and explain things to him. Dude! Let me tell you what is going on! Maybe that will help you figure it out!

He did an exam, and noticed I have a tongue ring. He asked how long I have had it, which to be fair is a completely valid question. I have heard some horror stories from people getting this piercing, but I have had it for 15 years. He did a little inspection (seriously? You didn’t notice it at all during my FIRST appointment?!) and said it looked completely fine.

Dave brought up new ongoing issues such as coughing in my sleep, gasping for air, and a huge increase of snoring. The only time I know any of this is happening is when I wake up gasping for air. I do know the whole reason I am gasping for air is my throat being completely swollen, but everything else I am sleeping and out like a light, so he had to fill the doctor in with this information.

The ENT doc decided to contact my sleep neurologist and go over my nighttime sleep study to see if there was sleep apnea. I had this test done nearly a year ago, I don’t think they missed anything, and the whole tonsillitis issue had developed over 6 months later. I’ll entertain it though. Why not.

So the debate with the ENT doc right now is surgery to remove my tonsils and adenoids. A lot of people call it a “T and A” surgery for short, but having a dirty mind my thoughts immediately go to having tits and ass surgery. LOL I am content enough with what I’ve got, but with my mind in the gutter, I’ll just keep it in long form, a tonsillectomy and adenoidectomy.

He is hesitant to remove any body parts so he is on the fence, as adult surgery is far more difficult in the healing process than a child. He told me it was excruciating, and would be the worst pain I’ve ever experienced. Nah Bub. Look at the shit I have been through over the years. A temporary few weeks of recovery that is probably pretty unpleasant is worth hopefully fixing my throat. It’s been a long time with no improvement. Yank those bastards out already.

Basically, I left doing the same thing, he told me the protonix wasn’t working at all but to keep on it. Okay? He then wrote down a concoction to gargle with: water, salt, baking soda, and peroxide. I tried to get a word in but rush rush rush, I wasn’t able to explain that I already do a variation of this, and off I went. “See you in 6 weeks, I need to do some research and see if there is improvement”.

Dave and I got in a little argument on the way home, as he kind of fixated on the tongue ring potentially being an issue. Were you even at the appointment?! The doctor said it was fine. Regardless, I decided to take it out. Maybe it would help?

I really don’t want to go back for my next appointment and have the doctor tell me to take it out, see what happens, and then have to do another, “See you in 6 weeks”. And then get the “I told you so!” speech from Dave, haha.  It’s been just shy of 6 weeks from when I removed it. Unfortunately it has made absolutely no difference. I guess you could say that I now have the power of the words, “I told you so!” to Dave. 😉

I had an appointment with Dr S shortly after my visit with the ENT doctor. We had previously discussed VIP spray, for shits and giggles, but both agreed it is not the right time to try it out. Reasons being – you shouldn’t use it with an active infection, it is used kind of at the end of treatment. I am not there yet. Also, spraying it in my nose is probably a really bad idea with what is going on with my throat. Maybe we will revisit that idea in the future.

We swapped out my antiviral supplements, I am now trying out Monolaurin. We talked about trying out a prescription viral medication but I am on so many prescriptions already (off the top of my head I think 9?) I felt a little more comfortable just trying out a supplement I haven’t tried before. Dr S gave me a blood work sheet with several tests and told me to wait a few weeks to go for a blood draw, to do the Monolaurin for awhile and also be on antibiotics when I take the test.

Though my basic bloodwork had a lot of high and low levels, they weren’t dramatically off. However, my WBC was high, which pretty much never happens with me. So that’s new. Of course, my immune complexes were off the charts high. Between those, my body is trying to fight something, we just don’t know what. I tested negative for EBV once again… which is good and bad I guess, as well as CMV.

The thing is, the immune complex test basically is showing something is really off, but it doesn’t tell you what. Having active EBV for years would at least be an explanation. It really could just be my active Lyme and Co infections. I’ve had all of these for over 25 years though, and my really bad lymph and throat swelling is a new issue. I got nothin’. It’s frustrating.

Dr S suggested writing a letter to the ENT doctor about me, to possibly push him along. Here’s what he came up with.

Dear Dr K,

Kimmiecakes has been a patient of mine since 9/2012. In that period of time she has had multiple evolutions of pathology including the onset of Tourrette’s. severe fatigue and disability, vertigo, neuralgia, swollen nodes, migrating polyarthralgia, severe headaches, mitochondrial myopathy, altered mental states, variable anxiety, depression, confusion, lymphadenopathy, bells palsy, POTS and more.

She is currently being evaluated by you for swollen tonsils which has been DDX as reflux and allergies. I understand that there is a presumption that Kim’s symptoms are reflux or allergy. She has normal Eos and low IgE antibody. There was been no changes w/ antacids and she has swollen nodes in other location that indicate the tonsils aren’t the only swollen site.

I am currently trying to differentiate between post lyme infectious syndrome or an active infection. The active infection may be borrelia and associated organisms or not. I am not certain.

Kim’s main diagnostic markers are high C3D circulating immune complexes (Raji cells) and high total complement and high C1Q binding.

We have done extensive testing for autoimmune disorders, lymphoma, persistent infections, cytokines, thyroid, hormone balance and more.

What I do know is that Kim has circulating immune complexes and an apparent inflammatory disorder. I am writing to request that you do infection testing on the tonsils with removal. I suspect that Kim has either a persistent infection bothering her immune system or something resembling PANDAS. (autoimmune reactions to strep or other infections that cause neuropsych disorders.) I feel that Kim would respond to Gamma globulin injections, esp to lower circulating immune complexes, but thus far Kim hasn’t met the diagnostic criteria for those injections to be covered by insurance.

The testing I am recommending

Viral culture; Ie labcorp 008573

Anaerobic and aerobic culture with gram stain: ie labcorp 008003

Fungal culture w stain: 188243

Please add more as you see appropriate ie specific mycoplasma culture w/extended aerobic culturing.

Thanks for your time. I know that these request fall out of the standard of care. Kim’s pathology certainly falls out of that standard.

Thanks,

Dr. S

Side note: I obviously changed our names as I always do. Also, Dr S. used careful wording as he knows the ENT doctor doesn’t believe in chronic Lyme. Hence, the “post Lyme infectious syndrome”. I also am not sure if this violates some sort of HIPAA.. HIPPA.. HIPPO.. whatever it’s called. I just sign the paper and know it is a privacy agreement. I think with the names changed and it being a letter and all it’s fine. I won’t tell if you won’t tell. Haha.

I will say, as much as I know Dr S has been frustrated at not being able to fix me, and has taken it out on me a little bit a few times, he wrote an amazing letter. He is pushing toward possibly PANS/PANDAS and IVIG treatment. If you look at my symptom and medical history, and the fact that I am considered a “strep carrier”… I am not positive as to what that means exactly, it is certainly a possibility.

Dr S showed me the letter before he sent it out asking for my thoughts and anything else I wanted to include, and then apologized knowing with everyone I basically have to facilitate my own care.

Really? This situation is completely okay. I have a doctor that is advocating for me, and is really trying to help out in anyway he can. Doing this favor for me is definitely above and beyond. I am so grateful. Now, whether the ENT doc poo poos us is a whole other story. Let’s hope not.

Maybe I would benefit if this hunch is correct. Wouldn’t that be awesome?! Get my swollen tonsils out, fix my throat, try IVIG if the ENT doc goes for it, and have a lot of the neurological stuff I deal with possibly go away?!

In the meantime I have been doing treatment. Alinia, Augmentin, and Cipro. I was also taking Mepron but I ran out and don’t have the $1600 or $1800 for a bottle. I can’t remember how much but my insurance doesn’t cover it. That’s okay though. Alinia hits Babesia, and this has all been a doozy. I have done several rounds now, and some days I was rendered completely useless. Dave has even had to hold me up to bring me to the couch.

Let’s play my violins with what I have dealt with during past few months. I have been depersonalized and foggy. I have gotten lost a few times driving, trying to find landmarks and of course not freak out, even though I have lived in my little town pretty much my entire life.

My torrential sweats are back. My POTS has gotten worse. I’ve had several times that I have had to lay on the floor for a bit. I’m a little bummed though. One time, my dog Cooper came up to me and kind of put his nose on my forehead and did a circle around, then went back to Dave’s chair. He was kind of like, “Ma? You alive? Yup. K. I go to chair now”. I think Cooper has about zero potential of being a therapy or an emotional support dog. What a dinkus. At least he’s cute.

I have been having speech issues with finding words, trying to remember what I am talking about, and stuttering. Body rocking. I get the shakes and have the mysterious head pressure that makes me lose my vision. I have been nervous a few times, getting an aura that I am all too familiar with, that I could possibly have a seizure. I know the drill. Pop an Ativan and seek cover. Luckily I haven’t had one.

I still have my tics of course. One day last week I was a hot mess. I was all over the place. Body rocking, twitching, doing the thriller dance, making noises, and I really wanted to go to a local place and pick up a detox juice on the way home. It has beet, kale, carrot, apple, and ginger. I always ask them for extra ginger, it helps my nausea a lot.

I grabbed a seat and waited for for my juice while I was dealing with all these very visible neurological issues, and when I was about to head out the door, a young couple sitting a few seats down from me said to one another while glancing at me, “Did you see her?!” The least you could do is wait until I am actually out the door. Geez. Maybe it is how people are raised now, I am not really sure, but I know my parents would not have been happy with me if I pointed out someones issues and discussed it in public, or like I have experienced many times, people coming up to me and asking, “What’s wrong with you?”. I don’t really take it to heart anymore, it is just a reminder that I’m still the way I am.

Some days however, these visible issues are near nonexistent. I have accomplished a lot, from cleaning sprees, errands, and even a Rite Aid trip with no sunglasses on. I went to a birthday dinner with several friends about 45 minutes away from home, which is a long time in the car for me at a noisy busy restaurant. That is really hard on me. Too many conversations around me, it being loud, it’s hard!

Dave knew pretty quickly it was not going to be fun for me and asked me if I was okay. He knew I was getting messed up even just sitting at the table. Even though I was definitely “off”, my body ended up adjusting. I wasn’t normal but I wasn’t to the point of falling apart, passing out, or having a seizure. All these things are great!

I had a kind of cruddy story, so I will share a funny one. It’s all about balance. Yeah some parts probably sound awful, but I have a sense of humor. You have to just laugh about it. Our workman’s comp company does a little audit every year and they want you to give some information about the employees and basically an update. When I logged in to do it, I noticed there was a bunch of personal information that was incorrect in their system. Even my Dad’s name was wrong!

I hate talking on the phone. For some reason it makes me foggier and even dizzy for any extended period of time. While calling the insurance company to correct their information on file, I left a long polite, yet angry message (I had already emailed the auditor to fix these errors and my Dad had also called them about it), I ended up completely forgetting who I was talking to by the end of my message, and I am pretty sure I ended the call with, “Love you, bye!” Whoops!

After I left work that day, I had to withdraw a little bit of money at the bank atm. I stared blankly at the machine, and realized I had no idea what my pin was. The pin I have had for years, the pin I had just used that morning. I went into the bank to tell them I forgot my pin, and I was also worried I was going to be locked out of my account. I couldn’t remember how many times I tried it. The teller told me to try it again, and it would say something about it being locked out with too many attempts.

Once again, I stare at the machine and had the “Aha!” moment and remembered it. Yayyyyy! I withdraw the money I need and pop back into the bank and let her know it worked, and I that I am an idiot.

THEN, I am standing in the parking lot, and begin to get that heart flutter panic feeling. I couldn’t find my car! I was wandering around the parking lot, looking for my lime green Lyme sticker in the rear view window. Finally I realized that I didn’t have my car. I had been driving my husband’s car for the week as mine was at the shop for a repair. Oy. That is one of those days that I opted for an easy dinner and go right to sleep.

The treatment hasn’t helped my throat any, I think the Cipro might be helping the bumps on my tongue a little bit though. I can tell a bit of a difference, even just these little accomplishments which means although there has been some bad days, there has been moments of blue skies. At least I know even though treatment sucks, it is doing something.

I have noticed some of my classic Bart symptoms coming out to play. I am getting “Bart feet” every night. For those of you who aren’t familiar with what this is, imagine wearing a really uncomfortable pair of shoes all day, and then walking barefoot on chards of glass and fire. That is Bart feet. I generally can’t feel from my calves down, but when I can, this is what I deal with daily. I have also noticed a bit more paranoia and seeing things at nighttime as well as some auditory hallucinations. However, these symptoms are not remotely as bad as they once were. I will also note that one relatively common symptom of narcolepsy is seeing shit at night. So maybe that is a slight overlap.

I had an appointment with Dr S yesterday, just for an adjustment, but we chatted a little bit. The previous night I was in excruciating pain. My stomach was as hard as a rock and bloated, not like a normal looking preggo bloated. I have been having quite often this pain that travels from my stomach and almost goes up to my non-boobs. It’s weird. I guess hard to explain. I have continuously had dull but also sometimes stabbing pain on my upper left side of my abdomen and this was way worse than the usual pain. He took a looksy, I had the sneaking suspicion of what it was and I was right. My spleen is enlarged. Gah!

I have been treating Babesia and this is an issue I’ve had in the past, and it resolved in time with continuous Babs treatment. So, it could be that. But, your spleen is also involved in your lymph system. And what has been a major issue since May? Very swollen lymph and tonsillitis. Maybe connected. He also noticed when giving me an adjustment not only is my throat all messed up, I am now having swollen nodes in the back of my neck. Whyyyyyyy…. I guess I will have optimism to share this with the ENT doctor for yet another additional push.

Dr S told me to take a break from treatment for awhile. I now have the spleen issue, but my stomach has been pretty messed up as well. I have been babying it as much as possible, keeping up with my probiotics and loading up with glutamine powder and it hasn’t been helping. It’s been sore, bloaty, and lots of trips to the bathroom. Let’s just put it this way.. I went to the pharmacy the other day and there was a super old guy with a walker in front of me. OMG WHAT IS THAT SMELL??!!! Yup. That smell was some pungent poop. My stomach has been so bad the thought came to mind.. ummm.. is that him or me? False alarm guys. It was him. Phew. That’s when you know your stomach ain’t right. LOL

I hate to take a break even though I agree with Dr S. Last time I had a really messed up gut, I had to take a few month break. I don’t want to have that happen again. I ended up having to take digestive enzymes, mag citrate, pre/pro/ and phytobiotics, pretty much anything as I stopped even being able to digest my food. It would just chill in there. Let’s not have this happen again.

So, now I wait. My ENT appointment is on Monday. I am really trying to not thing and worry about it, but I am. I can’t help it. I am very antsy. I have everything sent, the letter, copies in hand, and I am going to have notes and questions prepared. That’s about all I can do. I am really hoping he will just yank my tonsils out. I am tired of waiting. In addition to this, my health insurance has gone up in cost dramatically, and I want to get it done before the new year to not have to deal with my deductible. We shall see! Wish me luck. Although you all know I am Miss Positivity, I have the feeling I will need it.

Happy weekend everyone! I will try to update as soon as I can, but if I slack I hope you all have a wonderful Thanksgiving. Remember everything to be thankful for, and of course don’t forget to stuff your face with lots of good food!

Year 5 – What I Have Learned Living With Chronic Illness

I have recently reached my 5th year anniversary of my diagnosis of Lyme disease and the start of my treatment. Hooray? Not really.

I walked into my naturopath’s office with a bum leg, and a previous diagnosis of Fibromyalgia, CFS, and IBS. I went through my life story and within about 10 minutes of playing my violins, I heard the words, “You have Lyme”.

I was thinking in my head, “Yes! Oh thank God! It’s only Lyme!”. He then stepped out of the room for a minute and came back with a baggie of supplements. I think there were three or four bottles he gave to me that day, which is absolutely nothing in the Lyme world. The second I left his office and began to drive away, I bawled my eyes out. Not only did I bawl my eyes out, I ended up having that ugly cry. You know what I mean.. hyperventilating, snots and and all. That little baggy of supplements scared me.

If I only knew what was yet to come in the next five years of my Lyme journey.

Although he said those dreadful words, “You have Lyme”, we did testing to confirm the clinical diagnosis. He ordered a script of doxycycline to provoke the test and I took it for a couple weeks. It was awful, but in that period of time I was still thinking that after a month I would be myself again. It didn’t work out that way, that’s for damn sure.

I think the test came back relatively quickly and I got an email from my doctor that went as follows…

“Hi Kim. I got the results on the lab work today.

You had a POSITIVE Lyme IgM western blot. It was positive by both IDSA and ILADS guidelines (wow).

So, you have Borrelia and everyone is going to agree on that.

What people won’t agree on is the treatment.

You have an appointment on Friday at 3:30.

I highly encourage you to bring your husband and maybe father to that appointment to hear it all.

I’m glad the labs were clearly conclusive.  I’m sorry things are the way they are, but at least you know what direction to go.”

What the fuck was he talking about??!! People won’t agree on my treatment???! Well, that is just one thing I have learned about chronic illness, especially having one that doesn’t exist, according to the medical industry. The way people are treated with Lyme is absolutely disgusting.

I won’t bore you with an entire five year summary. Okay not that I would bore you because let’s face it, I am awesome, and you should read my story.

Anywho, I wrote a blog a few years ago about the things I have learned having a chronic illness and figured I would see if I felt differently as our thoughts and opinions change over time and we always are learning new things. This article applies to anyone suffering from a chronic illness, not only Lyme. I bet all of you that are suffering can completely relate.

As you know, I also have several tick-borne coinfections, and have opportunist infections, like chronic EBV. I have Narcolepsy, Rhythmic movement disorder, Myoclonus, Tourette’s syndrome, and POTS. I am sure I am missing some, but you get the point. A laundry list of shit.

I am hoping that some of my many issues will improve over time. I will say however, it is important to not blame everything on Lyme. I know some things aren’t Lyme related, although these buggers could have released some of these demons. I’ll never really know for sure.

Tourette’s syndrome and my other involuntary movements are annoying, but at least they don’t actually make me feel bad. PEOPLE can make me feel bad, not the actual disorders themselves.

Lyme sucks. Narcolepsy sucks. POTS sucks. All can be completely disabling to the patient. Not to mention it has all been very expensive. Fortunately for me, I am much better off than I once was. I still have a long way to go, but I am getting there little by little. It’s a friggin’ process. I’ve just had to learn to enjoy the ride. *Sarcasm*

I have learned a lot of things over the years. A lot I could have done without and been completely okay with it. Shitty life lessons. I’m sure many of you have heard the classic phrase, “Everything happens for a reason”. NOPE! Sorry, but it doesn’t.

Bad things happen to good people. Did the guy in the clouds want me to come out of this as a better person? I did steal a $7 mood ring from Walmart once. Maybe this is my punishment. So, let’s not say things like that. We’ll touch base with this thought later. I am a scatterbrain.

How you feel can change in an instant – Anyone living with a chronic illness understands this. I have learned my better time frames of the day. Sometimes they change around a little bit but I am at my best between 10:00 a.m. and then crash at 1:00. I get a little oomph back from 3:00 to 4:00. I seem to accomplish more during these time frames and have a handful of spoons. I know that is two time frames I mentioned, the spoons just had to cycle through the dishwasher and I was able to grab a few more haha. Don’t know what I mean by having spoons? Read an article, you can find it on Google, called “The Spoon Theory”. This read can give you a general very basic idea how it can be a struggle to get through the day having a chronic illness.

If I go out to dinner, or try to pick up the house and clean, even sometimes just sitting on the couch, I can go from okay to bad very quickly, sometimes with no rhyme or reason. It can literally hit me like a wave. Maybe a giant tsunami wave.

I have found that I have triggers that can make how I feel change very quickly over the years. The biggest for me personally is lights and overstimulation. I cannot handle bright flashing lights, fluorescent lights, or a lot of conversations around me. I have a very hard time with elevators and escalators, even though sometimes there is no other option because it would be impossible for me to make it up a flight of stairs.

With Narcolepsy, I cannot just sit for a minute without distractions. Well, even sometimes with distractions. There has been a lot of times that Dave has had to get my plate of food away from me so I don’t choke or end up wearing it. Knowing these triggers can be helpful, so you can try to avoid them.

It really is difficult making plans and committing to them not knowing how you will feel in the next week, day, or even hour. I try to “prep” myself by basically babying everything I do a few days in advance to try to go out and do something. Try my hardest to not overdo it. Even then sometimes it doesn’t work. You just never know.

You will find out half the people you know are secretly doctors – This is super aggravating. I have to try to remember though, most people have the best intentions for you. There will always be people that give you remedies because their Uncle’s second Cousin’s friend was sick, and he tried such and such and it worked, so it would definitely work for you. “Have you tried these mushrooms? They really would work!”

“A little sunshine, diet and exercise!”. “Have you tried…..”. Or, they blame your medications not understanding what herxing is, even if you have explained it a dozen times. Just smile and thank them, consider their advice if you choose, try not to diss their ideas, even if their cure involves jumping jacks and picked eggs, and move along.

Not only do some of these people have secret medical degrees, there are those who will also try to sell you shit! –

I have seen people prey on the sick in support groups. I get a lot of friend requests and also get a lot of private messages trying to get me to buy this and that. People that I happen to run into that happen to know that I am sick.

I know better, but there are a lot of people that are desperate to feel better and have little hope, and they end up get scammed. A good hint that these people know diddly squat and want your money is when they say something idiotic like, “This is an absolute CURE for your LYMES! You will be CURED with this 30 day program… for only $39.99.”

Ughhh. A) There is no cure, only remission and B) Lyme. Hold the “S”. That is also a big bold statement to tell someone. Be weary of anyone that tells you this, even doctors can do this to people. Yuck. If I just did that Shaun T 21 day fix that some random chick was trying to sell me on Facebook, I’d be better by now. 21 days for a “Lymes” cure isn’t too bad. Shame on me for not having an open mind on this one.

Some people will just not get it – As many of you know, my disease for a very long time was not even close to being an invisible illness. If you are not familiar with my story, check out the “About Me” link on the top of my blog page and watch my video. With it being visible, people knew without a doubt I was sick.

At one point, I had lost so much weight that I was down to 105 pounds. My collar and shoulder bones really stuck out, and you could see every rib of mine. I certainly passed the thigh gap test with flying colors. I was either 50 shades of gray, or jaundiced so I had a lovely tinge of yellow to my skin. I could barely walk and often had to be pushed around in my wheelchair. Not to mention all the involuntary outbursts and movements of all kinds. There was no denying that I was very ill at that point in time.

Now, my symptoms have become much less visible or nearly invisible on a lot of my better days. People that really know me will just know I am not feeling so hot by noticing little things, but for the most part I could pass to a lot of people as having an invisible illness as long as it isn’t a “Tourettesy” day. I am no longer like that 24/7. We’ve got it controlled a lot better without a doubt.

At my best, I would describe myself as looking like I had a fun night out when I wake up in the morning, with raccoon eyes, but otherwise I look like I am doing alright. I look “normal” to everyone who sees me. With this, people often will assume you are fine and officially better.

I have learned there is a huge misunderstanding surrounding invisible illnesses. Look good, feel good! What they don’t see is neurological battles, or levels of pain one may be dealing with. They don’t see extreme exhaustion. Anything that happens to be the struggle of the day. Most of us become great actors pretending we are fine and continuously keep a smile on our faces.

Those who don’t get it can and will say the dumbest shit to you. Not necessarily with bad intentions I should clarify once again. A lot of these things are from your secret doctors. I have to bite my tongue a lot. Chronic illness isn’t a cold or flu that goes away in a week. Chronic is chronic!

I have had the suggestion that I just need to go on a vacation. I just oversleep and that makes me more tired. Have a baby, stop taking my meds, just get off the couch and do something. That sunshine and exercise! If you would just….

The lovely feared comment that can make you feel the anger pressure building up in your body, the comment that just might make your head explode, “At least it’s not cancer”…. Thanks? I really think it is trying to help give comfort, but that totally minimizes what you are going through. Things like this prove your disease is just plain not understood.

Invisible illness can be really hard. I’ll leave it on the note, “You don’t get it until you get it”.  Also know that sometimes you cannot teach someone about your illness that is not open to it.

Chronic Lyme disease is controversial and misunderstood. You often find yourself talking to a brick wall. It will only hurt you in the end. You will always have someone that gives the comment when trying to explain things, “I get so tired too, it is such a dreary day!” No. That is not what we mean at all.

Pure exhaustion is when your body doesn’t even want to move, it is a struggle to keep your eyes open, and you have not had a restorative sleep for as long as you can possibly remember. This is very common with any chronic illness. Trying to explain brain fog, anything to get loved ones to understand what you are going through.

Educating people that don’t want to learn is pretty much impossible. Like I said, brick wall. I know a lot of people that try to talk to their families or friends, and they really don’t believe them. Or they don’t even take the initiative to know about the disease their family member or friend has. I’ve seen people try very hard to get their loved ones to watch “Under Our Skin”, and they won’t take an hour or so out of their lives to sit on their ass and watch a movie to learn a little. Try giving them a few articles that remain unread. Doctors more often than not are also not open to learning new information.

Instead of getting involved and learning, people will make assumptions, judge you, be rude, stare. It is best to just let things go as much as it can sting. This all sucks, but you just can’t force it upon people that don’t want to learn. You just can’t. Shaking it off and letting things go will make you much happier and less stressed. Stress = worsening of symptoms. Who wants that?

Once everything changes and you begin to get really sick and you are no longer able to go out or do the things you used to do, you will find out who is there for you, and who isn’t. Those people who you may have thought were your friends quickly turn to acquaintances. People who you thought would stick by your side literally vanish. Some people you believe that are great friends will listen and sit with you, but you will find that they are talking behind your back with judgements.

I once had a “friend” that I thought was one of the people in my life that would be there through thick and thin tell everyone that I was just being lazy and I pick and choose what I do. He even went to the extent of saying I bring things upon myself, like having seizures. I don’t know how this is possible, but that is just one example of what has been said about me.

Another “friend” who I thought would be there completely disappeared, only to show up at my house nearly a year later and asked me for money. Wha wha what??!!!

I get hurt when I sometimes no longer get invites. I often find myself wondering if it is me, if I am seen as burden, wondering if I have done something wrong. Depending on how I am doing, I either have no feelings at all and am out of it so I frankly do not give a shit, or because I don’t do a whole lot and couch it, it really eats away at me even though I try very hard to not over think and let things bother me.

Longer and longer down the road, you will find that pool dwindle down a little more, or you feel dynamics change. People may lose their families, or their marriages fall apart. It really sucks. Absolutely do yourself a favor, snip the fat if you need to. Sometimes it is just too much and you have to let go. I realize this can be certainly easier said than done. However, when there is negativity and stress in your life, it prevents you from healing.

There are still a lot of great people out there – I have found many good people come out of the woodwork and truly care about how I am doing. They genuinely want to help. Several people in my town came together and held a benefit for me when I first began to go to DC for my treatment. I was amazed, I felt blessed. I have a friend who would wash my hair twice a week the entire time I had my PICC and Powerline in. That is 16 months of a huge help. I would have had a hell of a time without her. She’s snuck into my house when I wasn’t home and cleaned it from top to bottom. It made my day… okay my entire week.

I have a friend that will just come over and chat with me, and we sit and watch movies. A friend who has taken me out for a cup of coffee. A friend that I have smoothie dates with. Friends that find articles relating to my illness and share them with me so I know they are thinking of me. All these little simple things are big things.

For all those bad people in your life, don’t forget that there are always people in your life that really do care. You are never really alone, even if you may feel like it. If you just want someone to talk to or offer support some days, utilize social media!

There are tons of great people out there that although we all have our different stories, they know and understand what you are going through. It is great to get advice and share things, as sometimes your loved ones cannot relate to this all.

I’ve made some good friends this way, including one of my now closest friends that happens to live nearby! It’s a small world, huh?!  She shares similar experiences, and I lucked out.. she is just as weird as I am, gets my twisted humor, and throws it right back to me. We have had a lot of laughs and a lot of cries together. I really needed this type of friend in my life, one who completely gets it.

Dry shampoo is my friend. Over the years, I have had plenty of time to bond with dry shampoo. Sometimes it is just near impossible to get ready for the day and look your best when you feel downright awful. I am guilty of alcohol swabbing my pits, slapping on a little extra deodorant, and calling it good. I guess what I mean here is that what you wear, what you look like for the day doesn’t matter as much as you think it does.

I used to be one of those people who would be a bathroom hog, perfecting my makeup, spending entirely too much time to get my hair “just right”. I’d try on a bunch of outfits before heading out the door. Do these things give you a pick me up in a sense? A boost of confidence? For sure. Although some may disagree, there are way more important things in life. But hey, this is things I have learned during my own personal journey. I’d rather put on a comfy sweatshirt and jeans, and throw my hair in a messy now, rather than spend all that time getting ready. By the end of getting ready, I don’t even want to do anything anymore. It wipes me out. I still like to look nice once in awhile, but this is no longer a priority to me. I’d like to think I look fabulous either way. 😉

Don’t always make everything about you – I know this one can be tricky. This disease has taken over your life. Every single day you live it and breathe it. Those that are close to you and have stuck by your side are wonderful, as well as those that take an interest in how you are doing. However, they do not want to hear the negativity (or a complete medical report) all the time.

Yes, it is okay to share, give updates, and vent once in awhile, but don’t forget to ask how they are doing, what is going on in their lives, and listen to what they have to say. These people have lives too, and struggles of their own that we often forget because of what we are going through. Support them equally in any way that you can and be their friend too.

Never forget others are going through this journey with you – Although it is hard to see the big picture, I always remember that Dave is living with this disease too. Life hasn’t just changed for me, it has changed for him. He went from my spouse to my caregiver. He has made tremendous sacrifices but has stood by my side every step of the way. You are not the only one fighting this battle. Appreciate these great people in your life.

You need to have a sense of humor! This is so important! Sometimes the shit that you deal with on a day to day basis you just have to laugh about. I am sure looking back, there are probably a lot of “funnies” you’ve experienced, especially if you are a brain fogged mess.

Here is an example… I once sat and waited at a restaurant to pick up my takeout for dinner for what seemed like an eternity. What is taking so damn long???!!! Well, turned out, I was sitting in the wrong restaurant. I got so embarrassed when I was arguing with them that I definitely called and placed an order and they proceeded to show me on the caller ID that I had not called their restaurant and was mistaken. Ahh! Who the hell did I call then???!!!  I finally got to the correct place and picked up my cold and soggy food as it had been sitting so long, feeling like a dumbass. But common’… that’s just plain funny.

Be grateful – As I wrote above, be grateful for those amazing people in your life. Be grateful for the things that you CAN do, and try not to dwell on what you cannot do at the moment, and remember that things will get better in time. Always find the silver linings. There are ALWAYS silver linings, even if you feel that you are at rock bottom. Hold onto these things, as they will help you during your darkest times.

I never forget that I do have a few amazing friends, a husband, my family, a home to call my own, there have been several of my symptoms that have improved, even when I feel like the world has turned upside down. These are all my silver linings that make life so much better for me.

In past articles I have mentioned even if it sounds silly, writing down the things that you are thankful for. Maybe the things you are able to do. People you love. Your fur kids. You will come up with more things than you would have thought!

Be proud of your accomplishments, big or small – If you do something that you haven’t been able to do in a long time, even if it is something like being able to sweep and vacuum, be happy. It might be a very big deal for you. Share it with your friends, your family. Be proud. You deserve it.

Your doctors are only human-  I love my team of doctors and I have faith they will one day get me well, but they are human. They make mistakes, they do not know everything in the world. They are also not mind readers. Do not underplay how things really are. He or she doesn’t know how you are feeling or experiencing unless you tell them. Let them know everything even if you think it is not a big deal. Sometimes they have to connect the dots. Bring notes with you to your appointments, keep a notepad handy for information you may want. I know I forget everything very quickly, so this is a great tool. A life lesson with Lyme brain: Sticky notes are a life saver!

Know your body – If you absolutely know you cannot do something, then don’t do it. It is okay, we have limitations. Sometimes you have to cancel plans, sometimes you may not be able to switch that laundry over or fold it (that is me this afternoon haha), sometimes you just have to say when.

If you know that something is wrong or missing (this goes along with my next topic), then try to fight for it. It took me a long time to push doctors when I knew there were missing pieces of the puzzle. For a few years I knew there was a huge piece missing. I fought tooth and nail for testing because I just knew something was very wrong.

Did I sit there and self diagnose? No.. I wouldn’t advise that either, and I didn’t know what it could possibly be. I knew I was out of the realm of what is considered chronic illness tired. Turned out, it was Narcolepsy. That is a very big deal! I struggle daily but now I have a much better quality of life. If I didn’t know my body well enough and speak up, would I have gotten this huge piece figured out? I am thinking most likely not.   

Do your research/be an advocate – This is so so important! I cannot believe the amount of people that do not do any research on their disease! Google is your friend! Books are your friend! Learn everything you can about your illness. If you are being sent to get blood work done or any test, find out WHY.

Get the results in your hands, and see what they may mean. You may find some things along the way that you have not been tested for, or something that you think is missing from your treatment. Bring it up! ALWAYS get your dictation notes. Research the medications or supplements you may be given.

Don’t have full trust going into this, and don’t have 100% trust in your doctor. Doing research might even make you realize your doctor is not right for you. Not all doctors are created equal!

Don’t be afraid to ask questions and speak up if you disagree with something. Fight for yourself. Be an advocate for yourself. Knowledge is power.

Pushing yourself can be entirely worth it – There are some days that I want to do nothing but lay on the couch or stay in bed. Something as simple as dinner or a movie seems like an impossible feat, but I push through it and it feels great to be able to get out there. I know that there can be consequences, sometimes lasting for days. A higher level of symptoms, pure exhaustion. That night going to dinner with friends, laughing and being social is worth it, I promise you.

Mind- over- matter can get you to do some great things. I didn’t feel good today, but I pulled myself together the best I could and said to myself, “YES I CAN” and accomplished a lot. I went to work, left for a doctors appointment, went back to work, went to two different post offices, the bank for work, my bank, the store, and had to run around the yard to grab my trouble making dog who suffers from selective hearing.

This concept has kept me working (even if it is for my Dad just a few hours a day), kept me wanting to keep going and fight. I never give in or give up. This concept has probably kept my sanity through all of this.

Hold onto hope – Things will get better. You just have to believe it. This is by far the longest journey that I have been though, and I am sad that I have given up a big chunk of my twenties and am now into my thirties, but I know that in time I will get more and more back to “me”.

It is definitely okay to “have a day” once in awhile, let’s be real here. I know I am big on the butterflies, rainbows, and unicorns but sometimes you just need to have a day to let it all out. It happens!

Honestly, some days I have a feeling of immense grief, losing the life I once had. Some days I absolutely lose it with frustration and am angry at myself for not being able to do everything I want to do, angry I feel so lousy, and I am just plain angry at the world. I get overwhelmed once in awhile, and that is okay. On these days I try to go to bed with the thought that tomorrow is a brand new day. It doesn’t mean I have lost hope, I hold onto it but I would say this is entirely normal.

Positivity is an amazing medicine and if you keep your head held high and think of the good, you will be so much stronger beating this. Check out my blog post on positivity,https://kimmiecakeskickslyme.wordpress.com/2014/02/04/staying-positive/  , you will find it is even scientifically proven that keeping the faith really is an amazing medicine.

I have learned how strong and brave I can be. I couldn’t have imagined being this sick in a million years. Treatment can be so brutal. I never thought I would be doing all sorts of heavy treatments, be glued to an IV pole, or have my schedule be filled with doctors visits, the hospital, and trips to the pharmacy.

I advocate for myself as strongly as I can. It can be scary having to stick up for yourself whether it be with doctors, loved ones, or even complete strangers. Although I have always considered myself outgoing, I am not a confrontational person. But now I have to be!

The emotional toll of being sick has been awful. It is so tiring dealing with it, not having control of your body or your mind. As I see it, there are two paths I could have taken. I could have had a terrible outlook and let these illnesses eat me alive, consume me, let them win. Or, I could fight like hell and know this is not the end of the road for me. I decided to fight like hell. I haven’t given up no matter how hard it may be, and I will never give up. I will never let chronic illness define me, and that makes me a warrior.

I would like to thank everyone who have supported me over these years. It means more to me than you will ever know. Love you all so very much.

P.S. A “Where’s Waldo”… Can you spot Miss Olive?

August 2017 – Hi ho Hi Ho, Off to the ENT I Go!

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Yes, I am aware it is September now. August was a pretty busy month, but I figured I would fill you in and not leave you hanging!

August was full of doctors appointments, work, treatment, and attempting to be productive. I feel like lately I have had bits and pieces of “bluer skies”, as Dr J would call it, so I make the most of it. I have done some grocery shopping without chaperone Dave. I have cleaned up my dirty house a bit (I think it isn’t completely possible living with 3 little monsters), and been cooking and freezing some extra meals.

On the other hand, I fade and fade fast. Some days I am still a fixture of the couch – shaking, rocking, and altogether completely out of it. I have been having really bad days with my Tourrette’s syndrome, but also some other days you would never even know.

There have been days I have been told that I “have that light back in my eyes”, and days that I am asked if I am okay, and the classic, “you look exhausted”.

You know what I am saying! Chronic illness is full of good days and bad days. Like a box of chocolates, you never know what you’re gonna get! 😉

This past month, I have been on Augmentin and Alinia. The nausea can be really bad, and by nighttime I generally feel like I am being stabbed in the stomach. I am in a fog or completely depersonalized. But I will say, I have tolerated the combination extremely well, especially not pulsing and treating everyday. Most of the time even pulsing it hits me like a ton of bricks and there is no “bluer skies”.

I finally got in with my ENT. I had been impatiently waiting for well over a month. As I had mentioned before in my video blogging, I have had pretty severe lymph issues. My neck is full of what they call “shotty bilateral lymphadopathy”. Basically, this is a bunch of hard bb pellet nodes in my neck. The center of my neck and under my chin has been completely swollen and even affecting my breathing. It has gotten to the point it has changed my voice and I feel like I am breathing through a straw. It is hard to drink liquids and I have been waking up gasping for air and coughing like I have been strangled. Heating pad to the neck, I’ve just been plain ol’ miserable. Not to mention it isn’t visually appealing whatsoever. Haha. I now have a big turkey neck that I never had before. Gobble gobble.

Doctors upon doctors not too sure what was going on, an ER visit that was unpleasant (but I did get my CT done, so that made it all worth it), my PCP, Dr S… Dr S is the only one that hadn’t been a turd to me about it. He at least took the initiative for some testing. My PCP pretty much said, “It could be Lymphoma, have a good day! Oh by the way, I don’t want to be responsible for you”. Oy vey.

But Dr S did give me a Leukemia and Lymphoma immunophenotyping test.. okay I am not super positive if that is exactly what it is called, but it seemed very unlikely this was my issue. Phew.

Surprise surprise, the CT and all the paperwork the ENT office requested early for my appointment was never even looked at. I was kind of a piss pot about this, so was Dave. He piped up to the nurse that the ENT is doctor #5 and let’s take this seriously, get it figured out.

Side note!!!! *** When you feel like shit, it is a great thing to have someone go with you to appointments. There is no way I could drive the half hour to the ENT office either way, so Dave goes with me. Although I bring notes to discuss since I can’t remember a fucking thing, he adds whatever I may be forgetting as well as asks questions I might not think to ask.

He is my “translator” if I start stuttering or begin to sound like I am speaking a foreign language. I often get a puzzled look, and he always jumps in with a, “What she means is”, and correctly tells the doctor what I am trying to spit out. He is pretty good at being my translator haha, Sometimes I make no sense. Dave gets a gold star.

The nurse was going through my records and stepped outside with the ENT who was then reviewing my CT. I had a laugh.. In the hallway the doctor asks, “Has she been tested for Lyme disease?” I actually never mentioned it to them, but it was in my life story of a binder full of records. The nurse replied that I have Lyme and am still treating it.  I’ll get to the aggravating laugh part later…….

The biggest concern is obviously my breathing and the swelling. Breathing is a good thing after all. Lidocaine was sprayed up my nose, we talked a little bit about symptoms I have been experiencing, and the then stuck a camera up my nose and down my throat to take a looksie. My adenoids and lingual tonsils are all swollen, as well as my artenoids and post cricoids are rather unhappy as well. All with edema, and most with erythema as well. What does erythema mean? It is “superficial reddening of the skin, usually in patches, as a result of injury or irritation causing dilatation of the blood capillaries”. Thanks Google!

The ENT told me to not focus on the side nodes at this time. Viral? He came off Lyme. He gave the diagnosis of laryngopharyngeal reflux, or LPR for short. Also known as “silent reflux”. He said that this can actually be a neurological issue involving the vagus nerve. In the past, I have had stomach issues likely from my vagus nerve and had to take a bunch of supplements to aide in digesting my food, or it would just chill in there for a long time, which is not a good thing.

I was told to not worry so much about acidic foods but to have little to no fat and was put on Protonix. He said this can take a long time to heal, much longer than someone with regular reflux. He also gave me an allergy test as I haven’t had allergy tests done in the past.

Now here comes that aggravating laugh. My allergy testing came back. All negative. Nada. Zip.

A doctor mentions Lyme, Lyme is confirmed. Yeah no.. it MUST be allergies. That is my side node diagnosis. ALLERGIES. ARE YOU DENSE IN THE HEAD???!!!!!!! THE TESTS WERE EFFING NEGATIVE!

This is so incredibly common with Lyme. I hear so many stories of people getting tested, have CDC positive results in their hands and their doctor still says it can’t be Lyme. Lyme isn’t in whatever state they live in. It is a false positive. Any excuse. Frustrating, huh?!

I mean of course, with a Western Blot there can be Lyme specific bands that are positive but that also isn’t recognized. If you don’t have that test lit up like a Christmas tree with that CDC positive test, you don’t have Lyme, even with bands that are positive that are indicative of having Lyme disease. You can’t just be a little pregnant. You either are or you aren’t. That is how it is for us though unfortunately with these uneducated doctors. And like I said, even with that positive test, they will still poo poo you. Gotta love it.

Anywho… I have been doing a little to no fat diet. Not going to lie, as soon as I left his office, Dave and I had a last hurrah lunch at a Chinese food buffet. I stuffed my face with all the fried and greasy goodness I could, knowing I would have to behave. I actually usually don’t eat poorly, but when you are told you can’t have something, of course you want it.

After my last supper, well, lunch, I was off to appointment number two of the day, my sleep neurologist. Things aren’t perfect by any means when it comes to my Narcolepsy, but life has definitely improved from this aspect. I have gone from 14-18 hours a day of sleeping to 8-10. I still have a tendency to instantly fall asleep, and get an overwhelming sensation that I need to fall asleep right then and there. It is almost like complete panic.

She told me that this is more trying to make life better, but I won’t ever not have some struggles of having narcolepsy. She suggested trying to take a one hour nap during the day. It is easy for me to do so, just give me a couple minutes. Problem is, I can’t wake up. We decided at this time to just keep my dosage the same, and to just play around with it a bit and see if it continues to help. Like taking it earlier, or later, just to see if it makes any sort of a difference.

I am a little worried though. I am having the sensation of complete exhaustion when I have any sort of stronger emotion such as laughing or having a deep conversation. This gives me a loss of muscle control, my body just turns into jello. This is kind of a lighter version of cataplexy. I am hoping it will pass. These episodes were improving for a long time, but I am starting to take a few steps back. If it gets worse or continues, she said to give her a call. At least she is really nice to me… even though she always asks how my “Lyme’s” is. Haha. At least she believes me and is always concerned my medication will make my “Lyme’s” worse, or my seizures, which is always a possibility with taking a brain stimulant.

I was looking at my dictation notes from my appointment and I found it interesting that she had mentioned that I was opening and closing my mouth and clicking my jaw. She had a question mark, Tourrette’s or new tic? I don’t recall doing this, but I kind of envision myself looking like a crocodile opening and closing my mouth during my appointment. Haha. Super.

I just had an appointment with my LLND. I had shot him an email prior to my appointment asking to start over with my supplements to see what is truly necessary. Instead of having a pile of supplements ready for me, he gave me a list and told me to finish what I have and downsized my stash, and changed a few things that he thought would be more beneficial when I use everything up. I am glad I have a doctor that isn’t into selling me a bunch of things, and wrote a list. It could have been one very expensive appointment!

I read off my bulleted list of symptoms and filled him in on my recent appointments. After playing my little violin, I asked what the game plan was…

Well, back on treatment. I have had about a week and a half off. During that time I did a lot of juicing to detox, and it is easier to do the fun no fat diet. At this point, it isn’t my first rodeo with treatment and he kind of looked at me and asked what I wanted to do, that I already probably had something in mind. He does the same with my blood work, gives me a look at the sheet and asks what I want to add. I apologized for being bossy, but he did say me it was welcomed from me. Like I said, not my first rodeo haha.

I am adding some yellow chalky syrup to my mix, as well as my nemesis last summer. In short if you haven’t read my blog, I went nuts. Voices in my head wishing me self harm. The voices wouldn’t stop. Literally 24/7. Nothing could drown them out. It took about a month for it to go away when I stopped treatment. I had been on this antibiotic for years on and off with significant improvement, so it was just bizarre I had a strong reaction. I put two and two together, I had started a biofilm protocol at the exact same time, so I think a lot of Bartonella released and it was just way too much. I am giving it a whirl again though! Here goes nothing!

I started treatment a few days ago. So far, I am definitely bogged down and “fuzzy”, I guess you could say. The Mepron is definitely hitting some Babs, I am getting horrible night sweats. The back of my head and hair are drenched, and you can see where the sweat has gone through my jammies. I haven’t started Alinia yet, my Dad has to pick it up for me. I’m not really looking forward to it haha. I am getting the lump in your throat that you feel when you could possibly barf and I have that awful feeling of liquids sloshing around in your stomach that happens when you get super nauseated. But, I need to keep hydrated.

I am waiting on a lot of my blood work, so I don’t have an update on that yet. So far, everything wasn’t really too far off. A lot of on the fences but not out of range. My chloride was high though? That is a first.

The only test that was off was my vitamin D. It has been low normal for a long time… when I first got tested it was only a 13. That is pretty bad. Now it is a 24. I didn’t know how it could possibly be low, it is in my array of supplements. I did a little research and found a lot of vitamin D rich foods have fat. I am not eating fat. Secondly, I look at the bottle of vitamin D. Suggestion was to eat with fatty foods for absorption. Well then! That would probably explain it! But, I am now having to have a little peanut butter twice a day, so I am thinking by the next time I have a blood draw it will be better if I take it at the same time.

We are retesting for Myasthenia Gravis, as I always am teetering in the middle to high end, but never a positive. Immune complexes once again. Viruses. We had discussed Sjogren’s as a real possibility contributing to my throat issues, as well as my tongue issue, and a history of dry mouth on or off medications and dry eyes.

As I said, I am definitely not looking forward to adding Alinia tomorrow. Really not. I will definitely be herxy and if I am out of it now, I can only imagine how it will be with the add. I am pretty reactive to it. At least I know it is working. I think of it like this though.. treatment is not fun at all. But, you need to look forward and do what you need to do to get better. I am not a quitter.

How does that saying go?? My track record is 100% of getting through my worst days and that’s pretty good? I don’t know. It is some meme I have seen floating around. But yeah. That. I do have a perfect record! I will be okay, I just know it.

Since I forgot last time, here is Miss Olive, and the gang! I am never lonely in this zoo 🙂
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Happy Monday


So, I am not sure how I forgot to add (maybe because my video is way longer than I wanted it to be… probably due to the continued loss of train of thought.. – right before my lymph infection I was mauled by my cat. This sounds gross but I didn’t really feel it, since sometimes I don’t have full sensation of my legs, and I didn’t even notice it, so I in turn did not see it and it wasn’t cleaned in over a day. It got infected. That was a big question mark.. Bart? Pictures are below… I can’t figure out my WP program at the moment. Brain fart.

And let’s add some more to the mix. I was bit by something. Once again, not a lot of sensation in my legs. What do you think?

I also have to share a picture of Miss Olive as I always do… That face!
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