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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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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