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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Stuck.

Happy Monday! As you can tell, I am in a bit of a fog. I was off this morning then just completely took a spiral this afternoon. Funny how things can change rather quickly. I am trying to remember anything else that I missed… blood work also showed very low Biotin and low Copper so I will be adding that to the supplements.
My sleep neurologist lowered my narcolepsy medication to see if it would help with my tongue. It is a tiny bit better now, and fortunately the small difference in dosage hasn’t changed the effectiveness too much. I could give a laundry list of symptoms and crap I am dealing with, but my video was way longer than I thought it would be so I will spare you. I’m bummed, but I will figure something out to get back on the right track. I’m no quitter.  🙂

April Part 1 – Ups and Downs

I know it’s been awhile since I have posted an update once again, I have been pretty fizzled out lately. Let’s see here… well, let’s start with my new medication, Nuvigil. I have been on it since around the middle/end of January. It has honestly been life changing for me.

I used to sleep for up to 15 hours a day, have cataplexy events that we once thought were likely limbic seizures, I would fall asleep randomly, and have this overwhelming anxiety if I couldn’t sleep right then and there. I had to try to plan out if I was to go and do anything to make sure I had a nap, and even then a lot of times I ended up staying home. I wasn’t getting any exercise, not that I am very active but it sucks to not be able to have enough energy to even go to run a single errand. I really need to have my legs moving a bit, as I have POTS, and keeping up with circulation is a help.

Everything seemed much better for awhile. When I say that, I know you folks with chronic illness know what I mean… you are still sick as shit but there is so much improvement..for the time being.

I was actually volunteering to do our grocery shopping without my chaperoning husband. I was able to make it out to dinner a few times with Dave, which is a really hard time for me around 5:00. That is when I will absolutely crash, even if I had fallen asleep in the early afternoon. I was being quite the chef, trying new much more time consuming recipes, and had enough energy to get all my daily errands and chores done. I was able to do a lot more office work, and send out the taxes to our accountant for work.

This sounds cheesy, I know, as I am almost 30 years old (AHHH!!!!), but after completing all of that hard work with minimal stress, my Mom said that she was proud of me. It meant the world to me, something so simple. It was something I really needed to hear from someone and feel, since for so long I have felt pretty useless. That feeling is downright terrible. I had a very big mental boost.

I was happy. I was still sick, my medication is not a “cure all”, but my quality of life was so much better. I felt much more like “me”. This sounds weird and possibly whiny, I swear it isn’t, I almost feel like occasionally I have moments where things are too good to be true, I know sometimes you really push yourself on a good day and you have a few bad ones after, but I had a much bigger feeling of hope. When I have that “up” feeling, when something really good is happening, it seems like every time I crash. And I did, rather hard.
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My POTS has gotten much worse. I have found myself many mornings and nights on the floor, seeing gray. This picture is a little example from last week I think? I had barely stood up off the couch. Now… if anyone knows if there is any significance, my systolic number is rather high, which never happened before but it is a little more of a reoccurring thing lately. My diastolic number is low. Between the systolic and diastolic, there is a large pulse pressure difference. Thoughts? All I know is I am getting more and more dizzy, passing out, and am becoming more of a couch potato and the much better moments seemed to come to a complete halt.

The POTS I am taking a guess, is worse because of Babesia. Drenching sweats, hot flashes, chest pain, my heart feels like it is pounding out of my chest. Air hunger. I have been more nauseated, continuing on with my stomach pain, it has spread to my left side as well, and I have been much more foggy and just generally weak.

One symptom that worries me once in awhile is this massive head pressure I get. It isn’t painful at all, but it is really intense, I almost feel as if my brains are going to start pouring out of my nose and ears. When this happens, I can’t even see straight. It is happening more and more. I am wondering if part of it is toxicity, I will get to that in a bit. I have become further nauseated at night, anything and everything has just gone downhill.

I have been recovering from tendonitis in my right knee. I didn’t get it from playing sports, running, anything heavy duty. I got it from simply standing longer than usual. I’m laughing about it now, but that is pretty pathetic. Who the hell gets tendonitis from trying to stand? For real? Me I guess. Just one day I instantly felt this excruciating pain that dropped me right to the floor. I could feel it laying on the couch or trying to stand back up. I had a brace on for a couple weeks, but there was the concern that it might make those muscles even weaker. My knee is a little better, but there is concern for soft tissue damage that I will have to keep an eye on. Oy vey.

I had signed Olive up for obedience classes, and thank god for Dave, he completely took the reins, I just sat the entire time. Her last class was on Monday, and somehow I was able to do the final little course in the gym with her. It was just going around chairs and different stations, but it was pretty hard to do. The lights in that sort of atmosphere fry me and I am immediately in a fog and feel like my body is floating.

My Tourrette’s has come back a lot more, my movements, finger snapping, hand raising, cringing, and the “AHH” yell. Fantastic. I was warned a stimulant might do this, I am not so sure it is from that though.. as this is relatively new it has come back full force, and I started my medication in the beginning of January. That doesn’t physically hurt me in any way, but gosh, is it annoying to have.

I have also noticed a pretty big decrease in appetite. I have dinner all ready for when Dave gets home from work, and it finally hits me that I hadn’t eaten anything during the day. At least I have a little buffer on the weight situation, haha, not that I am overweight by any means. I have lost 10 pounds, and between my ass and gut I am around 6 inches down. My gut was rather distended and is looking a lot more proportional these days.

My medication has left me with a giant case of oral thrush. It is getting a little better now, it isn’t actually fixed, but it was to the point my tongue was swollen and bleeding from these little red spots. The bleeding has stopped, but it is still a little swollen, and it still has a pretty gross coating to it, no matter how much I brush.

I was put on Sporanox as well as my Nystatin, and it has been absolutely no fun. That is where the toxicity comes in. You can herx from candida, and I think I was just completely overloaded. I had testing done, and I actually did not test positive to the very common candida albicans. I have a species called candida glabrata. I googled it and of course there was some horror stories.

I am just trying to keep at it, watching what I eat to not let it grow further and taking my antifungals, natural and prescriptions. I have a fear that when I go back to my sleep neurologist next month, she is going to pull me off of this drug. I really hope not, there isn’t much you can do about narcolepsy, this medication, a very similar one, Adderall, and Ritalin. I really don’t want to be on anymore drugs that can be addictive. I can’t worry though, I don’t know what is going to happen.

I finally had my conductivity testing in my legs and feet. Guess how much of this all is permanent damage?? Just guess… ZERO!!!!!! I am not sure how to really read the results, but I was told my response was sluggish, it might just mean the neuropathy hasn’t caused any permanent damage yet, but I am in the clear! That is fantastic. The neurologist isn’t really Lyme savvy, but this information was useful to me, and Dr S.

If I had permanent damage, at least I would have a bit of an answer to my crazy puzzle, but without anything permanent, this means that I still have those damn bugs. Argh. I know it CAN and WILL get better though. That is amazing news. I am still not in good shape to start antibiotics again so we decided on working on Babesia. I also got a nerve stimulating tincture, and was told to continue to work on my adrenals.

I waited to finish the Sporanox, I’ve been trying to get rid of this fungus or keep it to a dull roar, so treatment wasn’t the first main focus of mine. I really don’t think treatment in general is super effective if you are toxic or full of candida. I just started Mepron and Artimisinin yesterday. I am glad I waited, it would have just been way too much on me to do both. I also wanted to very clearly differentiate what was causing what with symptoms or herxing.

I am not jumping for joy even having to start back only on Mepron and Artimisinin. I don’t really know if that is rugged or not.. I usually paired it with at least 2 antibiotics, most of the time more. So it kind of feels like a baby dose of treatment. I don’t mind that yellow chalk that so many hate, but I have been left wondering if I will get any worse. Not going to lie, I am feeling it. Everything Babs-ish has been exacerbated, and I am running a fevah today.
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It’s working though, that’s what matters. But hoping I won’t completely crash. I gotta do it though! I am just keeping the mindset that it will give me an improvement.

The past couple of months have definitely been very back and forth. Contradicting thoughts, I know. That is chronic illness for you. I’m staying positive though. Things seem to have been falling in place more this year than the past few years of being a complete mystery. I see Dr S next week, I really don’t know what the game plan is going to be. I know I will have some labs done, I will have to figure out what tests I might want to add. How cool is that? I have a doctor that is open to my thoughts and opinions! Wishing you all a good Easter!!!!

No, I didn’t forget about an Olive picture. The gang and I during a nap. And just had to share a picture of Cooper begging for a scallop. I am fully aware I am the crazy dog lady. 🙂

February Part 1 -New Year New Answers

I am getting the sense that a lot of people had a cruddy 2016… let’s hope 2017 will treat us all well! Wishing everyone a happy and most of all HEALTHY New Year. Something’s gotta give, right? I’m aware it is now February and I am behind the times. I’m here for an update though!

My memory is pretty much shot and I am having a brain fart so back to the past blog entries I go. In a nutshell, this past year consisted of lots and lots of sleep. Becoming more and more of a train wreck. There is a video that I posted this year, and it makes me cringe that I am even that way. Here it is once again for your enjoyment! Kind of a summary of my bad days.

And, going back further, here is a little year by year since I have started treatment 🙂

https://kimmiecakeskickslyme.wordpress.com/2013/09/07/september-7th-2012-one-year/

https://kimmiecakeskickslyme.wordpress.com/2014/09/07/september-7th-2012-two-years/

https://kimmiecakeskickslyme.wordpress.com/2015/09/03/august-7-2012-3-years/

All I know is this past year has been nothing short of frustrating and discouraging. I am doing all I can to remain positive, hold onto hope that things will get better, and I always look for those silver linings, as small as they may be every single day.

It may seem like the end of the world one day, but I find something to be grateful for. I always can.. whether it is my husband, my family, friends, or my fur babies. I remember there is always tomorrow, a clean slate. We all know things can change on a day to day basis, so I always have my fingers crossed that it will be a little better.

I suppose I always hold onto the phrase we HATE to hear from those who aren’t sick. The phrase that makes me want to smack people who don’t understand what so many of us deal with on a daily basis. “It can always be worse”.

See? Healthy people can’t say that to us. It is a big eff off phrase, one that invalidates us and our suffering.

I will say though, I am glad I am not worse than when I started this journey of nothing short of hell. There are things I can do that I hadn’t before seeing Dr J, and I am eternally grateful for him.

There is a “but” though. I am still not better. Not even close. I am backsliding without a doubt, life has been pretty miserable to be honest, I am not where I expected to be. I know what “it can be worse” means, and yes. It can be. I have been there.

I found myself in a place without any answers. All my tests hadn’t given me any answers other than what isn’t wrong. I was retested for immune complexes and it came back clean. Hmm… I am not sure Lyme and all my other fun diseases are the main problem anymore.

They likely still are, as my notes I have collected from my neurologist state I am Parkinson’s-like. I am wondering if that there is still a very active infection brewing, or something that Lyme has brought to me in neurological damage.

My end of the year appointment with my naturopath sucked. I was told that this might just be the way it is going to be for me, but maybe it can somehow be better managed with different seizure medications than I am taking. The guess was that my issue could possibly be epilepsy, and having Tourrette’s and permanent neurological damage.

It was recommended to go to Boston for better neurological help and yet more and more testing. Then came the words, “I am frustrated we aren’t finding the answers, I don’t think I can help you. I think you are out of the realm of doctors and neurologists here”. I appreciate the raw honesty at least. It did make me feel completely alone though. Like I am to the point I am getting given up on.

Then the topic came up and I am kind of interpreting it in my own way which I am not sure is entirely correct. It ate away at me the more and more I thought about it. This is from my biggest advocate that has helped me incredibly so it hurt the worst.

We have done SO much testing to try to figure out what is going on with me and were getting absolutely nowhere. I told him I wish I just had a “feel good” diagnosis, one that is just a title that makes me feel better inside so I don’t feel crazy.

Although I was told he doesn’t think I am crazy, that he really believes something very big and neurological is going on, he lead to the following direction that if further testing is done and nothing comes up that it could be in my head and that sometimes this just happens.

Then explaining further, he didn’t think I would be spending all the money on testing if it was in my head.

Now let’s slap some icing on that cake… That maybe I am having continuous issues because my mother has suffered from mental issues. I got a bit snippy with that comment. I’m not going to get into fully it as it isn’t my story to tell, but it isn’t relevant to me in any way.

Then the conversation turned back to the nicer more reassuring, “I don’t think you’re crazy”. Yup. Ate me alive. I know he does believe me but even saying that at all was a big fucking ouch.

A few important side notes to the previous comment toward me I should include. One, I really don’t think many doctors have a lot of knowledge about mental illness. What was referenced to me was basically equating a soldier coming back from Iraq with PTSD having a child, and giving that child PTSD from their experience in Iraq. It doesn’t work that that. It is not hereditary.

Second and most importantly, I think if someone is to insinuate something of that nature in any sort of way, that you could just be Fifty Shades of Crazy, they should have the appropriate resources to give such as to names of therapists or doctors to talk to, advice to give, direction.. anything.

I will say, I know I am strong as hell but what if someone isn’t? What if they have been struggling to find the answers and they got that sort of response with nowhere else to go? Just my opinion, that is the sort of thing to say that can very well put someone over the edge.

I held it together until I got out to my car and bawled my eyes out. I bawled my eyes out that entire afternoon. The tears just wouldn’t stop. It was probably one of the saddest moments and an appointment I had the entire year. Maybe more. I felt pretty hopeless with everything. I knew I wasn’t crazy. This isn’t my first rodeo being sick. And I KNEW something was going on. When you know, you know. I just hadn’t been given the right tests.. yet.

I know myself. This is not the way I wish life could be. Anyone who knows me knows I loved to work as much as I could and waitress. I loved to walk my dogs. Sing, go dancing. Going skiing with my friends.

I absolutely loved working out and taking classes at the gym. I loved spending time with my husband doing things like going wheeling in his mud truck. I really was full of life. I was a social busy bee. I just can’t imagine my brain ever being like well, I am just going to make you like this for the hell of it, you want to be this way.

I really hadn’t had anything done other than blood work, and MRI and SPECT scan that was done years ago. Fortunately, as I will get there sooner or later in this post.. I GOT AN ANSWER!!!!

I had an appointment for my POTS at the end of the year as well. The doctor told me that I need to suck up that pride of mine, that I need to just wear sunglasses and use a wheelchair or scooter again to try to at least get out of the house.

This was a new doctor as I couldn’t get in with my electrophysiologist, but he made additional suggestions for POTS and I liked him a lot and overall it was a good appointment. Yes, he told me to just get out there and do it, but I got good vibes from him.

After looking at the abundance of supplements and medications I take, he told me I take enough with a “holy crap” look on his face, and told me to no longer take the Florinef and to call if I think it is needed again. I haven’t noticed good, bad or indifferent off of it. One less pill to swallow.

He asked me how much water I drink a day, and I drink tons and tons. He said that is great, but I am completely depleting myself of sodium. With POTS it is really important to stay hydrated, however, it is all about balance. He wanted me to drink  Gatorade types of drinks, which I know are loaded with sugar and are a chemical shit storm. I ended up finding online GMO free, things you can pronounce powders to add to my water with electrolytes and sodium.

He suggested bullion cubes and warm water. I have been doing that and I am waiting on some Himalayan sea salt capsules, one gram of salt each pill. Another pill I know but it beats bullion cubes. I will continue working on using my recumbent bike, and was told I really need to wear my compression stalkings.

I was talking with Dave about using my wheelchair again and telling him about my pride issue, and he understood exactly what I meant by pride. It has been a long time since I have been in that chair. This is a purely mental thing. A reality that I have fallen back so much that this is what I should be doing. Knowing that this is where I am makes me just want to stay at home because it just pisses me off.

Another reason I really don’t want to have to resort to using my chair again for distances is t the doubts of other people who watch you and question you. If you happened to go to a store in your wheelchair, then stand up to grab that can of soup or whatever. Why is she using a wheelchair if she can stand? What is she just lazy? Yup. Judgment. At least Dave gets the way I feel about all of this.

I had my nighttime and daytime sleep studies last month. Here I am all hooked up and ready to go! Aren’t I pretty?
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Well, the nighttime study showed I do not have sleep apnea. I always describe my sleep as being like a rock, the house could be on fire with sirens going off and I wouldn’t get up. Alarm clocks are pretty much useless to me, and I have fallen asleep with my phone on me and have had texts and calls that I never even heard. I guess that is in fact not the case for me. I fell asleep and hit REM very quickly, but I woke up over twenty times. OVER TWENTY TIMES! I wasn’t even aware that I even wake up at all. That is one characteristic of my most recent diagnosis.

During the daytime study (MSLT) you are not hooked up to quite as much crap since they are no longer looking for sleep apnea. It consists of 5 naps every couple of hours for 30 minutes. Between naps you just read, watch TV, or in my case Facebook it and keep my Sims happy.

I told the tech who took care of me for the day about what was going on, lots of tests and no answers. While she came in to set me up for my final test, she looked at me, smiled and said, “This test was worth it, you’re finally going to get answers”. I didn’t want to hold my breath but was excited that there was a possibility that I might have actually had a test that revealed SOMETHING, ANYTHING at this point.

I expected a week or two for my results, since these things take time and a lot of times with medical stuff it is always sit and wait. I got a call 3 days later from my sleep neurologist’s office and was asked if I could come in as soon as possible, and to not wait until I had my appointment with my regular neurologist the following week. Hmm. So, I went in the following day.

“You have narcolepsy”.

Wait, what? Honestly, I was kind of expecting to hear sleep apnea, or idiopathic hypersomnia, which basically means that they agree that you are sleepy but do not know the cause. My daytime study I fell asleep within 3-5 minutes and hit REM around 8-12 minutes as an average. Wow! For anyone familiar with sleep patterns, people hit REM within 90 to 120 minutes of sleeping. For a narcolepsy diagnosis, one must reach REM 2 or more times, and fall asleep very quickly. Boom. I got an answer.

Unfortunately, this is going to be a lifelong ordeal, there is no cure. You basically slap a band-aid on it in hopes you have a better quality of life. Be careful what you wish for?

I was put on Nuvigal, and have been taking that daily. I am still tweaking around with timing but I am glad to report it has helped significantly. I have had more energy to be more productive, I have gone out to dinner, and even stayed up to watch the Superbowl. It is also good that I am being more active using my legs more. Is it perfect? No. Like I said, it is a band-aid, but I feel a lot more lively. I have taken it for two weeks and have only fallen asleep three times, and about one hour or two, not the several times adding up to 5+ hours a day.

I have noticed it makes my mouth super dry, I have armed myself with artificial spit spray haha, and I started to have oral thrush this week. I have been swishing with coconut oil, and that has made the little blisters on my tongue less “angry”. I feel pretty foggy.. okay foggier than my usual about an hour after taking it and that feeling lasts for a couple hours but seems to dissipate.

I saw my regular neurologist and pushed and pushed for some additional testing. It was kind of like pulling teeth. He told me that we were finding out a lot of what things aren’t, and maybe we should wait and see. I told him that I have taken the wait and see approach for going on five years, let’s continue on with the finding out what things aren’t.

He brought up a valid point in which I would agree, an MRI wouldn’t be entirely helpful, since he has been a part of my care for years and seen me at my worst he hasn’t doubted me and when I was much worse he ordered an MRI, and there was only a small lesion in my spine and he didn’t think it would show much else.

He offered to refer me out if I wanted to, to possibly see a rhythmic movement disorder specialist, but also told me that we can agree that I definitely have a rhythmic movement disorder of sorts, maybe just not a name for it, and what would be done is maybe them naming it, and putting me on the same drugs I am already taking. I guess I would have to agree with that too.

I also learned that the EEG during the nighttime study did not reveal any seizure activity, so he thought that I likely do not have epilepsy, just plain jane seizures. I didn’t really think I did. He brought up an interesting point that perhaps my absence seizures and limp noodle seizures aren’t actually seizures at all. He thought maybe it was purely related to Narcolepsy and I am actually falling asleep for a brief second, causing me to fall, or appear completely zoned out. That is a possibility.

I got the test ordered that I have wanted for a long time, a nerve conductivity test in my legs and feet. This will show if there is a nerve problem or permanent damage. Even if this comes out negative and he can throw it in that “we know what it isn’t” pile, I will know. If absolutely nothing shows up, no permanent damage, I know that it is those damn buggers. And with that information, I need to continue treating.

I will likely end up treating further sooner or later (next month?) to just see what happens. You will know pretty darn fast if you still have bugs going crazy. A good example is with Babesia treatment. You are either going to react to it, which is a tada moment, or you won’t. Things like Mepron don’t touch Lyme bacteria so you’d know right away. You get answers. Right now though, I am still learning about my body handling this new medication, and my gut is still not up to par to be taking antibiotics.

This topic is one of the things I had discussed with Dr S during my most recent appointment. This appointment went way better and I left on a positive note. No tears. Did I want to slap those sleep study results on his desk and give him an “I friggin told you so!!!” ? Kind of. I refrained and adulted. Also, regardless as to how much what was said hurt me, I don’t like to burn bridges, and I do really like him and think he is a great doctor and very smart. I also think it hurt me more because it came from him versus anyone else.

To be fair, it wasn’t really an expected result for the sleep study as narcolepsy is really rare. Roughly .05% of the world’s population. I can understand that not being on the top of the “guess what illness Kimmiecakes has” list of possibilities.

Today I received my results for MarCons testing. I do have a little bit of a Staph infection going on in my shnoz cavity, but it isn’t raging. Will I do something about it now or wait it out? I’m not really sure. I might just wait and see what the test results are on my legs and feet, as a small amount of Staph might just go away on it’s own.

I feel like at least I am getting some answers and the ball rolling for 2017. I mean.. it stinks that I have Narcolepsy but at least I know. Knowledge is power. And a little Staph party in my nose. I know that those things aren’t going to save me from all the other neurological problems I still face but at least I finally feel like I am moving forward. I will never stop looking for answers and fight to get well. Keep fighting my fellow warriors!

Did you think I would forget Miss Olive? Here is little Miss Troub Troubs looking sad we were trying to keep her out of the laundry room! She still got in by the way.
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December Part 1 – It’s Complicated

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Hey everyone! I have been waiting for an array of tests to come back before I wrote again. Annnnd… I am still waiting on even more blood work to come back. I figured I would check in in the meantime!

It has been a pretty frustrating month to say the least. I feel like I am falling apart and am growing really impatient trying to find out all the answers.

I finally did the SIBO test and it came out negative. I ended up doing a poo test which I hate and was holding off on.

There was a bacteria, as well as candida and another fungus, so that would explain the bloatedness, inability to go to the bathroom (even though I have doubled the dose of magnesium citrate).

The neat thing about the test is that it showed what treatments were most beneficial to me, and ones that I am resistant to.

I am actually resistant to Diflucan, which I have been taking forever. The bad news is the things that are supposed to work for me I have been taking for months and nada. I guess it will take time and I will continue on with a clean diet and hope that it all begins to resolve.

The sleep has been absolutely ridiculous. I managed to be okay to make it to a friend’s baby shower but I absolutely need to have a few hours nap to go anywhere or it just isn’t happening. I have had to nap to do anything, I have napped at work, and even planning on going to my sister in law’s for Thanksgiving, I napped before we left, the half hour drive, and when I was there I had a quick snooze before dinner, and as soon as I got home.

I have been missing out on things like an invite to watch a football game, going out to dinner, and visiting friends. I am a pretty social person, even though I am a bit socially awkward, and to not be able to get out much is a big bummer. It really truly sucks.

During my first appointment since I last wrote with Dr. Steve (I must be a VIP patient by now LOL) , he did a little check out and low and behold I had an ear infection.

There was actually some blood coming out of my right ear. It doesn’t seem to bother me and was kind of new news to me.

He is a blood work kind of guy, which I love, so I had a full list of tests to get done. I didn’t have to get as many tubes drawn as anticipated, a lot of the tests could go in the same vial. I also got a Minion band-aid. Win!

With those blood tests, it showed my hormones are way off. The biggest issue is Progesterone being extremely low. I was surprised at this, even though I knew something was off, as I have progesterone injections and use progesterone cream. Hmm.

There was a test that was an AHA! moment. It is called immune complexes, and another that shows extremely better white blood cell information than your basic panel.

It showed that I had off the charts inflammation, and my body is indeed attacking itself.  The problem is, we aren’t positive as to why and what.

As a side note that I can’t figure out where to copy and paste it (brain fart), no one wants to have something bad on their tests. I will admit though I was happy as a pig in shit that something showed up. Finally. I was beginning to feel like I am friggin crazy, as I am sick. Very sick and nothing was showing up. These tests

The biggest possibility we are looking into is vasculitis of the brain. It is very rare, and my spellcheck even doesn’t recognize the disease hahaha. Joy. We are looking into an angiogram of the brain to confirm this guess, and trying to get as much information gathered as possible for insurance to cover IVIG treatment which could be really beneficial to me.

Another option we discussed was going on prednisone. Yes, I know it is a freak out no-no topic among the Lyme community, but you really need to outweigh the good and bad, and it can actually be life saving to those with conditions such as Addison’s, etc.

I wanted to look into this, as I know there are so many possible side effects, and I am learning that this is likely not a good option for me as I have Factor V Leiden. It can cause some extremely severe side effects even in a very short period of time. Surgery required bad things. Yup.

So I am continuing to get information together before my next appointment, and am wondering if we could make a case for the insurance that prednisone could possibly cause massive side effects.

Unfortunately, there is no way I can afford trying out the IVIG if it isn’t covered. I know also that it can kind of be a crap shoot. For some people it seems to be great, others it seems to do way more harm than good. If it is covered I think it would be worth trying.

We are going to run another blood test coming up that tests for more things that would maybe give a few clues to neurological issues that is more specialized than something Labcorp or similar companies offer.

A few new issues have come up. I usually haven’t dealt with a massive amount of pain for the most part with this disease as I am nearly all neurological, but my calves and back of my legs have been extremely swollen and excruciatingly painful.

They are not hot to the touch, but when they get like that, veins even begin to bulge out. Sexy I know. I have forced myself to use my bike a bit as maybe it is a circulation issue.

Underneath my jaw (maybe lymph node) has also become swollen. It reminds me of a frog when they puff out. You know what I am talking about, right? It is really painful and I am not sure what to do about it.

My throat isn’t sore, and although my lymph nodes on the side of my neck are swollen as they always are, they don’t appear to be quite as bad. Or maybe they don’t look that bad with this massive thing going on below my jaw. Haha.

Lately my head seems to have massive pressure… it doesn’t hurt at all but it literally feels like I can feel my brains being squished into my skull. Like my head is full. When this happens, I almost feel a giant wave come over me. I feel completely totally out of it, am oblivious to my surroundings and unaware. I can’t even talk. Nada. It passes quickly, as I said it is like a wave. Very bizarre. Maybe yet another type of seizure? I don’t know.

Even more nerve wracking, I am not sure what is going on with my eyes. All of a sudden, I can’t see. It lasts more than a few blinks, maybe 15 seconds or so? Just a guess. You don’t really keep track of time when you instantly lose your sight. It isn’t total blackness. It is beyond blurry, as I can’t see a friggin thing, like I am looking though the thickest piece of the type of glass that a shower has that you can’t see through, and a shade of grey.

I went to the eye doctors, and tis the season, I do have a tendency to have dry eyes in the winter and a little inflammation and thought maybe this was the case but there is nothing wrong with my eyes. My eye doctor doesn’t think I am crazy about Lyme and takes me pretty seriously, and really took the time with me to see if he could find anything that could be causing this issue. His only explanation is that it had to be neurological. Gah.

I did finally have my appointment with the sleep neurologist. The day before my appointment, there was a questionnaire for Dave to fill out, since he does see my sleep patterns and knows my sleep habits and lifestyle. He was out for the evening and of course I had to look at his answers. In a question about snoring and to describe this sleep behavior in more detail Dave’s response was, “More than 75% of the time loud snoring and other loud disgusting noises with her mouth.” Thanks hun.

Although she did call it, “Lymes” (pet peeve LOL), there was a little positivity, as I am actually having some testing done. I will be doing an overnight sleep study as well as a daytime one. I’ll call it a mini vacation?

Included in that will be an EEG, maybe there will be some sort of revelations in that as well. I just want some answers. Something isn’t right. And she agreed with me that something is going on. We just don’t know what.

She really believes that it very well could be narcolepsy as I fit right into the category or sleep apnea. She had mentioned a type of sleep apnea that is a little different, one that your brain basically tells you to stop breathing. Not like an airway sort of issue.

I had some pretty great accomplishments this past month. It sounds pretty lame for those who aren’t dealing with this all, but I am happy. It has been over two years since I walked in a Walmart. I walked all the way to the electronic section with Dave, and also the pet section to get our fur kiddos their food.

I didn’t get into a complete state of panic as I do in situations I know are going to be a struggle, my feet had no feeling, and I had to hold onto the cart to have some extra support.  The lights made me dizzy and I went into a complete fog. I made it though!

I had a day I went grocery shopping by myself, after 3 hours of work I should add, then continued on pushing myself to do some cleaning around the house. I really wanted to just lay down, but it was a huge boost mentally to do this.

In a few weeks I will be trying something called electro-magnetic therapy. It is supposed to help boost circulation and get rid of waste.  I haven’t done a lot of research on it, which is pretty surprising as you know I am the Google Queen, but for more information, it is called PEMF Therapy.

I am going to leave this on an uplifting note. It seems that this time of year is especially hard for the Lyme community, and we have lost too many people in the last several weeks.  It is heartbreaking.

I am exhausted and am mad and sad at what has been going on with me. I have kind of felt like I have been breaking down piece by piece in frustration. Why does everything have to not be cut and dry?

I do have days that I feel like an absolute rock star for getting some things done like like I have shared and not making a zillion rainchecks to Dave for him having to do everything.

But… that is doing the basics that I had once been able to do months ago. Even years ago. I am grateful to be doing anything at all as it is still an improvement from when I first started over 4 years ago. I will admit though, backtracking isn’t fun at all.

For every bad day I am really trying to go to bed with the mentality that tomorrow will be a brand new day. I will keep going, keep fighting. I really don’t have a choice. What is it that Dory says? “Keep on swimming?” Well, I guess I will do just that. Wishing you all a great day, and to continue being strong. We will get through this together.
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Can’t forget my Olive girl! Introducing Miss Olive Loo Who! Haha. She looks pretty pissed. Someone was not in the Christmas spirit.