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.

October Part 2 -Hmm.

There has been a lot going on this month! Right now, I am focusing on fixing broken pieces, trying to get myself together in order to get well. It hasn’t been a good month, but I at least had a moment I was able to get out there and not be a hermit and enjoy myself for awhile. Halloween is my favorite and I pushed myself with a lot of mind over matter and a nice long nap before going out with Dave and my friends.

I had an appointment with Dr. S and there is a lot to work on. Thank god he writes notes about the appointment, I was about to crash and fall asleep so I was completely out of it.

He actually ended up telling me to head home and make another appointment, see how I do with my new supplements and skip my chiropractic adjustment for the day.

He saw my pictures of the bloat and stomach issues. I am going to give a little side note and some words of wisdom before I continue on.

SIDE NOTE: If there is something funky.. mysterious rashes, swelling, anything really……..TAKE PICTURES, ALWAYS!!!
A) It is easier to just show a picture of what has been going on if whatever it was isn’t there anymore for your appointment time.
B) They can’t help you if they don’t know what it is just by your explanation.
C) You can kinda sound like you are full of shit, especially if you are seeing a new doctor without proof.
D) Seeing is believing.

He takes my word for it either way, as I have had a good and long relationship as a patient with him… but… not exactly knowing without that picture really isn’t super helpful. Especially if you are a mumbly, stuttery blob in the chair, in my case tweaking and cringing as well.

Okay. Back to my story. No more amoxicillin for me. As you saw on my last blog entry, I am definitely bloated terribly and am having really bad stomach issues. The game plan for this week until I see him again is to work on my stomach issues. Lots of pre and probiotics, digestive enzymes, oil of oregano, GI Integrity, switching to magnesium citrate to try to get me poopin’ normally again.

Not going for several days apparently is an issue even though I am not straining and just forgetting, and I have always had issues with my liver so I guess it isn’t helpful to it and I am very toxic.

Well, nada. Zero difference. It stinks to get a bunch of stuff thrown at me but nothing seems to be working.

When I go back I am going to do further testing, to perhaps pinpoint more about the bacteria, as I already had a test that showed I had a pretty severe bacterial infection, but learning more might help with a treatment plan.

Gut health is so imperative to any sort of healing. It is worrisome that working on diet for gut infections, particularly SIBO, supplements, the probiotics etc. are not touching this. We will get it figured out. It is really important to be on track and I know I just need to be patient.

The next thing on the agenda was kind of random. But Dr. S kind of seemed baffled all of my gynecologists that I have seen in this past year showed zero concern I have not had a period in over a year. That’s a long time! I certainly haven’t missed it. Dr S. wants me to be back on track, and hormones are definitely out of whack if it has been this long.

Progesterone cream it is. I have started that but have still yet to finally get my period. I kind of feel like I am a ticking time bomb and am going to eventually blow, and possibly bleed to death as it has been so long. Haha. Only kidding.

I am only 5 days in and woke up this morning with hellacious cramps. As you know, if you have followed my story (you should, I’m awesome), I have endo and it isn’t fun at all.

I was so late for work. I was in so much pain that I was dry heaving and kept on blacking out. I looked at the clock and pushed myself as hard as I could to get my shit together and make it through the day. I actually am pretty busy with lots to do, and a dinner I need to go to tonight, ugh.

I grabbed a coffee at the gas station on my way to work, and decided to buy a box of tampies, just in case. I actually had to look at the different boxes like, “what are these? I forgot all about you guys! ” LOL Like I said, I am pretty sure it is brewing.

Sorry if that is graphic or gross to you talking about my time of the month. Or that time in well over a year. Whatever. I promised you all the good, the bad, the ugly.

My Tourette’s hasn’t been as bad, but I am still doing the cringes and hand raising and a few “bahh!!!”s at night. I can deal with that all though. It is what it is.

Fantastic news.. I have CHRONIC EBV/MONO… No, this is not just flares people get that already have it in their system and it gets reactivated. That is common with Lyme.

I have it all the time. 24/7. 365 days a year. Not a days break in between. Okay, that really isn’t fantastic news.

What to do? I have been on several antiviral herbals, but unfortunately there is no cure for mono. Rest and all that good stuff. I certainly get enough rest! Haha. I added monolaurin (spelling?) to my antivirals I am already taking. Hopefully it will finally get deactivated.

I asked the risks involved, and I guess you are at a much higher risk for cancer if you are in the situation I am in. I have so much crap going on, I am not going to even be scared about it. I just want those viruses to simmer down and go away.

Once again, reoccurring theme, I am still sleeping my life away. It keeps getting worse and worse and I don’t know what to do about it. I almost get in a panic if I can’t go fall asleep somewhere.

I had to sleep after seeing Dr S after my brief appointment to get my back cracked and we decided on further testing for stomach bacteria. (Yes, I know I had already mentioned this but I have taken forever to write an update and have been writing bits and pieces for about a week now.) I was toast.

That day was yesterday, an 18 hour of sleep day. And I will tell you, I am so exhausted today. It hasn’t made a difference. I seriously want to cry because I feel like this has taken over my life.

Giving a disclaimer to those who suffer from chronic illness can have extreme fatigue, I am not downplaying or minimizing anyone else in my post today with my personal ongoing issues. It sucks all around for everyone.

I have been through the chronic illness fatigue and I will tell you this is beyond different. Something is very wrong. I have been through hell and back with this illness, and this is honestly making me scared.

I can’t wait until I see the sleep doctor. I will obviously mention the mono issue. But everyone seems to think it is something more, most likely narcolepsy with the array of symptoms I have. I know my body, and this isn’t just a mono issue.

I hope I get some answers and help. This is seriously destroying my life and making it really hard to continue to make strides in improving.

I have been trying to do things. We were invited the other day to watch the football game with friends right down the street. Nope. Slept thru it and we didn’t make it. I have to sleep for hours before trying to go anywhere, if I am able to get out of bed at all.

3 hours for a quick dinner, several hours to make it to go to a Halloween party with friends. It is one of the very few things I look forward to every year. It was a major struggle.

I also feel like an asshole to Olive as I have to put her in her crate if I can’t leave her in our fenced in yard, it has been too cold or rainy. I hate doing that when I am home but I need to sleep. She is a troublemaker and can’t be trusted though, but I really feel mean to do that to her.

I still have my classic Babesia symptoms, not seemingly as bad, but Bartonella has come out to play. Bartonella feet hurt a lot at night. Anxiety, anger, and paranoia. I am entirely oversensitive.

Each and everyday I have moments when I freak out thinking no one cares about me, my friends hate me, Dave is annoyed by me… I make up all these scenarios. And I think it so much it becomes real.

Obviously it is not, but it is still real very to me. I need to just try to relax and know that this isn’t reality, I am putting this all in my head. It is like I need reassurance from my friends and Dave… but the thing is.. IT IS ALL IN MY HEAD!

It will pass, it always does. It seems like it comes and goes in waves. But in the meantime I hurt pretty badly purely by my imagination.

The hallucinations have calmed down a bit though… Dave at least hasn’t had to pick through my food for spiders. 😉

My happy moment was Halloween. It was hard and I paid for it dearly for several days. I was lucky, there was plenty of places to sit and it wasn’t a crazy wild party or anything. We had so much fun and I was so glad to get out. I actually did okay. There was a few moments little waves hit me but I always came to and enjoyed myself. Again though, even though I was clearly invited I felt the crazy fake scenarios in my head of paranoia, I did try to be as much of a social butterfly as I could be.

I love homemade costumes. This year just wasn’t the same for me. I am usually ready at least a month in advance, and plan forever, but this was literally the day before I put our costumes together. I think I did alright though.

A goal I need to work on is to really get back to a ritual of my daily exercises given to me by my PT, and use the bike again. Suck it up when I am all disoriented waking up, or do it first thing in the morning even if it screws me up for the rest of the day.

My massage therapist warned me that I am losing muscle in my legs. This is the first time I have been told this. Since I have been really sick and a couch potato, over 4 years ago, I still had a bit of muscle. It was likely because I was so fit and active before my body said, “when”.

That’s not good at all. I mind over matter a lot of stuff and have done amazing things throughout my Lyme journey, but I will admit lately I have been slacking on the exercise. Really truly slacking.

And it makes a big difference with POTS as well. I need to boost my circulation. It isn’t fun to have to turn the shower off and curl into a ball on the shower floor because you are going to pass out.

Yup. A goal. Well it shouldn’t be a goal. I need to dedicate time to do this, even if I often sleep 15+ hours a day now. 10-20 minutes is a heck of a lot better than nothing.

Wish me luck with everything. Told ya, I have a lot going on!

Have a great day everyone!

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And of course, Miss Olive. I have no clue how the heck she got up there. My Queen of the mountain.
 

October Part 1 – Why Hello There!

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I wish I could tell you, “No news is good news”, but things really haven’t panned out to be that way the past month. I have begun a small antibiotic and herbal regiment (well, maybe it is small, maybe not…. I am just basing it off of my massive scale of treatments that I have been on in the past.

I had an appointment with my neurologist and was kind of pushy to try to get some testing done before the end of the year as I have no idea if there is going to be a giant spike in the cost of insurance. Let’s hope not. But, better safe than sorry.

I gave him the spiel about how I have been doing, and was really hoping to get some nerve function tests to at least see if it is permanent damage from my mid calves to my feet or if there is hope for further improvements. Makes sense, right?

Of course he didn’t order a test of any sorts for that, and my notes for the appointment even said, “NUMBNESS FROM THE MID CALF DOWN TO FEET, DON’T KNOW OF THE CAUSE”. For real??!!!! Pretty sure you are the Doctor, Sir, why don’t you figure this shit out. And before January 1st. Please and thank you. Ugh!

He did however seem pretty concerned about my sleep and told me that was in his mind the first priority. I of course was a little dishonest, and didn’t tell him my incident falling asleep for that split second on my way home from work, I just couldn’t, but I let him know my general sleep schedule, and my “I actually get a day off” sleep schedule.

I am seeing a sleep specialist next month, as he really believes I either have narcolepsy or possibly sleep apnea.  I really didn’t know much about sleep apnea, other than from watching shows with really heavy people and they have to wear these masks as they sleep. He told me it can really happen to anyone, it is just a higher risk factor.

He then told me, which made a lot more sense is that if you have very bad sleep apnea you may never really reach the higher levels of sleep, and that would cause the excessive daytime sleepiness.

Of course when telling the neurologist about the hours I sleep and trying to gather as much information as possible, with Dave knowing I was going there and was going to discuss these issues, he failed to tell me until AFTER the appointment I snore very loudly and make weird throat noises in between trying to swallow, chewing and choking.  Geez, super helpful Dave.

I suppose narcolepsy is a possibility, Dr J has also mentioned it to me in the past, as there are many similarities. I once again was just thinking of the specials on TV in which people fall right to the ground randomly and it is like an every moment event. I guess that isn’t always the case, those are the most severe cases. Guess I need to stop watching TLC specials perhaps.

If absolutely nothing pops up, then I will know that I am still as sick as shit and my body is in healing mode. People tend to have one side or the other for a spectrum of treatment. No sleep, or sleep all the time. This has just been an ongoing thing for years and years and has only gotten worse.  This is also much different though, it has gone on for a very long time without treatment too.

It is awful to be so debilitated, falling asleep literally mid conversations, getting anxiety if I can’t right then and there go and take a nap, feel a wave of tiredness from laughing too much or any sort of strong emotion, confusion and completely out of it if woken up, and I sleep for up to 18 hours a day.

With it only getting worse, it has not only messed up my ability to keep trying to have my legs moving to help with POTS, I have also missed out on a lot of things. I have missed a few birthday parties this month and have been a bit of a hermit. We try to go out to dinner on Saturday nights but take-out seems to be a common theme. The few times I have gone to do anything, simple things, I have looked at the clock wanting to go home, which I hate. I love my friends. I love being a part of doing anything, and even more having an invite even if it is an empty one. This isn’t me. This all around sucks.

Dave and I went to a fair over the weekend and although I made it a little bit, I had a very hard time. I couldn’t feel my legs and had to hold Dave to walk at all, I started getting completely out of it, rocking and having my Tourrette’s scrunchy faces. We left before anything got worse and I needed a near 7 hour nap to recoup from the time at the fair. At least I got to see the bunnies. They’re my favorite 🙂

I have had some recent blood work done and my cortisol is completely normal.. not really any explanation. I guess spinal taps can show some sort of information on it but I have yet to have a spinal tap for any sort of issue so far, as well as sleep studies. Who knows, we will see what the sleep specialist says!

My start of the month was a round of Coartem and it did go better than my previous round. I had the classic Babesia symptoms: air hunger, sweats, hot flashes.. that sort of thing and was pretty emotional and drained. I hated the air hunger. I couldn’t even lay on my back or on my stomach, I had to sit upright to breathe better. You just have to try to relax your mind and try to focus on your breathing, in a relaxing sort of way and not panic. Panicking only makes it much worse.

Treatment has been making me pretty nauseas and out of it. The other day (when I say the other day it might have been several weeks ago haha) I made an oopsies, on my way home from the Doc’s office, I just plain didn’t feel like cooking and decided on Chinese. I went to the Chinese food restaurant and waited and waited for my food to pick up, and a gentleman came out and said I never called. I got in a rage and was persistent that I had called in my order, and he then asked for my phone number. Low and behold, he checked the caller ID and I did NOT call in my food there. So, I made it to the other Chinese food restaurant and my food was sitting there waiting. Oy vey.

I have been having moments of being completely overwhelmed. With work, and with life in general and have had a few mini breakdowns. Today, I had to leave work, I just couldn’t do everything I needed, but absolutely had to run a couple of errands in town. I sat in the parking lot and did my best not to cry. The bank, dropping mail in the slot, and picking up dog food seemed out of reach for me. Don’t you do it Kimmiecakes! Don’t cry. Push. You got this. And I did. I can barely keep my eyes open right now and I will be psyched as soon as I am done this to take nap numero uno for the day. I have just been slacking so badly I didn’t want you all to think I have fallen off the face of the earth.

I have had hallucinations at night, seeing my usual spiders. I made a small plate of vegan nachos the other night to take my pills, and screamed out loud, convinced there was a spider in my food. Dave had to pick through my nachos and assure me that there was no bugs in my food. Bartonella is at it again. Not to mention the paranoia, anxiety, and just plain sadness lately. I am not really sad I don’t think it explains it right, I am more just frustrated. I always focus on all the good in my life when I get like that and pull myself out of the funk I end up getting in.

Neuro issues in my feet have taken over. Last week I hopped in my car and looked down, and there was blood all over my big toe and smeared on my feet. I must have hit my foot against something. Not only that, a big blister formed on my little toe. I am kind of glad I didn’t feel it. I have the feeling it would have hurt like a MOFO.

I am now taking a break from treatment again. I have begun to have major bloating issues. I measure myself to see if I am bloated or just feel that way, and I have gained over 4 inches in my gut in less than two weeks. FOUR INCHES!! That seems like a lot in such a short time.

Something is definitely going on, so the plan until my next appointment is to see if I can get the bloating down before then, and if not that will be my main focus again. I am assuming the gut infection is back in full-swing. I am sure I will be getting some testing done next month.
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Yikes! I look like I am preggers. This is after the first thing I ate for the morning. A small piece of steamed haddock. Morning fish? Yeah. I know. I work in the fish business. No breading, no gluten, not saturated in butter or fat, and very small amount. And my stomach only gets worse as the day goes on. I am grateful it is now sweater and legging season! Haha. Silver linings.

So, I will continue on with my FODMAPS diet, behave as much as possible, and load up on probiotics, prebiotics and FOS. Wish me luck on this one haha. At least at this point I am not remotely obsessing over it and hasn’t been a dent to my self esteem. It is what it is. Happy Wednesday!

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Annnnnnndddd of course here is Miss Olive! Getting big! Also, notice my blue foot. LOL

Note: Feel free to share, share away! I like to think I help others relate in some small way, and educate others by writing. But, please use my link or hit the share button on FB and do not copy and paste as your own work due to recent copyright infringement issues.

 

September 7th 2012- 4 Years

The beginning of this month was my four year anniversary of the beginning of this Lyme journey. Ick. Four years?

I know there are a lot of people who have been through many more years of this struggle, but this still really stinks!

I have had Lyme and several fun coinfections for most of my life, about 25 years. Symptoms built up more and more and I really started to crash when I was in my early twenties, and at 25, I finally found my answer.

It was the day I wobbled into Dr S’s office with a bum leg that I could no longer feel. You could have probably have hacked it off with a saw and I would not have noticed. September 7th, 2012. A day I will never forget, a day that will remain imprinted in my mind.

Once I started treatment, shit hit completely hit the fan and I have not been the same ever since. My doctor asked me once, “Would you do this all again? Start treatment? Now knowing what it has done?”

Kind of a loaded question. Yes and no I suppose as I think about it now. This disease is absolutely miserable.

As I had mentioned, when you start treatment having chronic Lyme, coinfections, MCIDS, or whatever you prefer to call it, especially for so long, it is going to hit you, and HARD.

The question to myself is if I didn’t start treatment, where would I be now? Or how much worse would this be? Would it be worse? I might be better off doing exactly what I have done for this reason.

Would I have leveled out on my own and somewhat suppressed the infections like I had for all those years? Symptoms were certainly there, but I was still “me”. I’d just have to deal with the symptoms I had.

This year I definitely had my ups and downs. There has been some huge accomplishments. Going shopping on my own, not needing a babysitter for some tasks, finally getting my POTS diagnosis, walking the beach, I did very well for not being on antibiotics and taking a break. I didn’t immediately fall apart.… the list goes on.

The biggest downfall is that I reached a point that I just plain couldn’t tolerate treatment anymore. I just couldn’t do it anymore. My body began to reject the antibiotics and I ended up with a gut infection.

I slowly have begun to crash. My nasty coinfections have come back to play, my tics have returned, and I keep getting more and more exhausted. I feel like I have slept this entire year away!

I recently saw Dr S, and I have now begun working on Babesia again. A round of Coartem and a tincture. Holy crap. Yup. Clearly still an issue. I am also working on my gut still, mitochondrial and adrenal issues.

Definitely continuing on trying to control my neurological issues. I see Dr S next week again for another follow up and game plan, I will try to not be a slacker and give an update!!

Instead of giving a great big long spiel from the beginning (you can read it all from the very start of this adventure), here is my story from each year from the start of my 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/

Andddd a little photo montage from the start of treatment until now. A picture is worth a thousand words, right?!

 

 

 

Well. That is about all I have in me today. Almost Friday. Wishing you all a great weekend! Keep fighting. That’s all we can do. Remember to always look for those silver linings and positivity is a powerful medicine. Much love to you all!

Oh yes, and here is my Miss Olivia Newton Fartin’ Martin. She says “hi”. She put herself in  a time out about a week ago. We still can’t figure out what she did! What a goofball!
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*Disclaimer: Due to plagiarism and copyright infringement issues I am currently facing, I am formally requesting to NOT copy and paste my work as your own, please and thank you.

If you would like to share (and I encourage it!), please use my link to my blog only, or hit the “share button” on this page. Thank you so much.

 

August Part 1 – Busy Month

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Hey everyone! It has been a really busy month, so I apologize for not giving an update!

I had a great milestone this month that I am so proud of, and of course have had my downfalls. It happens. I am looking at the silver linings though, Kimmiecakes kicked ass.

I had a visit with Dr S and it was decided that I needed to take a break on my Bartonella herbal treatments. I was told to take a week break, and use a much lower dose to start out and work myself back up.

I haven’t started back up on any Bartonella treatment. Hopefully he won’t be mad at my next appointment but I know my own body and I think I still need a rest.

I don’t know if I have bugs stirring at the moment and a pocket has come out with these nasty bugs in my head, or because I am completely overdoing it.

If you read my last post (umm, you should!), I shared that I had figured it was only an herbal that was given to me, and ended up being a mess.

I of course didn’t listen once again with my next “action plan” of the month. But I will get to that later.

Now, let’s talk about poop. Haha. Whatever, we all do it. Put your lunch down if you are continuing reading.:0

I have been dealing with the complete opposite of my past issues of running to the toilet. My legs work much better than I give credit for in this instance, although I have definitely had my share of oopsie poopsies LOL. Don’t judge. Shit happens, literally.

Sometimes it is about 3 or 4 days before I have an ummm…. movement. It is entirely normal when I do go, I am not straining in any way, I just plain don’t have to go for several days at a time. Zero cramps that are common with constipation.

I don’t really know if that is anything to worry about. I am assuming not, but Dr S is the king of poop questions so I am sure it will be brought up anyway during my next appointment.

I have noticed however, that after I eat and it doesn’t matter what it is, I often become very nauseated, have indigestion, am burpy, and by the end of the day I look like I am carrying twins.

I still have that lovely stabbing stomach pain that is slightly left and slightly upper of where my gallbladder would be.

And even grosser (I promised you all the good, the bad, the ugly, and the gross since day one of my blog LOL), I have had the WORST itchies and actually feeling crawling at bedtime on more than one occasion.

Dave’s believe and questioning on this topic is that wet farts can cause this issue and wondering if I was suffering with them. I just about died laughing.

Really Dave? I know that’s not the case at all. What the heck? Ew Dave. Just ew. Not the same thing. He also told me not to post this blog on Facebook but who are we kidding.

Also, I will clarify, I am not sitting there and scratching at it like a monkey or dragging my bum on the carpet like a dog, because that is definitely gross. And obviously uncomfortable. I just take my sleeping pills and ignore it.

From lots of research, as you know I am the Google Queen, that symptom is an extremely common sign that you are carrying parasites and I am thinking I really need to do another parasite cleanse. It has been a year.

My last one I found all sorts of critters! Let’s continue with the gross, shall we?!

There was white spaghetti of assorted sizes, some as big as 4 or 5 inches!!! I am unsure of what type of worms they were but I also had lots and lots of flukes. Flukes kind of look like white rice.

Parasites can cause an array of problems other than my embarrassing issue.

Once again, there are so many symptoms that can overlap Lyme.

And! It is very likely everyone does have parasites in their body but will never show any symptoms. When your immune system is not working properly, it might become problematic for you.

I should also note, if you are tested for parasites with a stool sample, it can be negative even though you are riddled with them, it just means none came out when you gave your sample.

Let’s get to some information about parasites!

Some of the many causes of parasites are: uncooked meats, lake water, sanitation of your food and water, fruits or veggies can carry them, cleaning your kitty box and one of the biggest tough one for me.

You can indeed get parasites from your pets. Yeah.. I’ll admit, I love kisses from my fur kids. We even have our “goodnight kiss” routine when Dave and I tell them it is bedtime.

I always say, “Gimme a kiss!” to my 3 dogs, and they will give me a smooch when we tuck them in. I wouldn’t be able to give that up realistically. I know some are so anti- dog but that is just going to be the way it is going to be.

Parasites can also infect you by walking barefoot on infected soil, tile, etc. ! So in a nutshell, everyday living.

Symptoms of having parasites include but are not limited to”
-IBS symptoms – gas, bloating, diarrhea, constipation, and any sort of digestional distress.
-Sleep issues
-Pain in muscles or joints or aching
– Fatigue, exhaustion
-Mood changes such as anxiety, paranoia, depression, hallucinations, and can lead to many other mood disorders
-Not feeling full after your meals
-Mineral deficiencies (iron is common)
-Skin irritations or rashes
-Weight loss or gain
-Vomiting or nausea
-Abdominal pain or tenderness
-Fogginess
-Headaches
-Allergies
-Fevers
-Autoimmune disorders

That’s just a few things on the list. There are so many more. And don’t forget the obvious, visually seeing a worm passed in your stool.

Common parasites include: tapeworms, hook worms , flukes, pinworms, whipworms, and giardia.

I am going to quickly rattle off some naturals that help with parasites. DISCLAIMER: ALWAYS CONSULT WITH YOUR DOCTOR BEFORE TAKING ANYTHING.

Wormwood, black walnut, cloves and garlic are a couple that come to mind. There are so many different naturals that can help. Reiterating once again, seek medical advice before trying something new, even with supplements.

So, needless to say, I will be ordering a cleanse this week and get that all taken care of.. Gag. Plus, I am thinking (hoping at least) that it will help get rid of some of my bloating.

I twisted my ankle a doosy last month and it kind of put a damper on being more active for a bit. I wasn’t too worried about it other than the fact the fluid didn’t seem to want to go away. It was rather squishy. About two weeks after it happened, I did begin to worry.

The inside of my leg was turning very black and blue, and I began getting super attractive varicose veins. My calf was swollen over a half an inch compared to my other leg.

It was massage day, and Gayle was pretty concerned and didn’t even want to touch that leg. I have a history with clotting, I have Factor V Leiden as well as vascular issues, and DVT was a concern. She told me I really should go to the hospital, and after my appointment I headed off to the ER.

I will tell you. You are treated SO MUCH DIFFERENTLY if you do not mention Lyme. Practically having the hospital as my second home, they already had my med list handy.

The doctor asked about why I had taken so many antibiotics, and I simply told him I HAD Lyme. I really didn’t want to be in there, period, and this wasn’t really a Lyme issue, so you have to pick your battles. Sorry folks. It wasn’t really a time to advocate. That is unlike me and I know I suck but I just wanted to get er’ done and get the heck out of there.

They saw the bruising in my leg, how swollen it was, and I was running a temperature yet again of 100 (fevers can accompany DVT), and they rushed me in to get an ultrasound.

He then wanted to do an x-ray of my ankle, as it was kind of gross looking even after two weeks. Agreed?
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The doctor came back in and told me my leg was okay, no DVT, and he believed it was because of my vascular issues, and the fact that I was putting so much pressure on the inside of my leg because of the sprain.

I didn’t have any fractures or breaks either! Good news! I did however tear a ligament and had tendonitis. I kind of knew that anyways, but I had a lot of piece of mind knowing there was nothing wrong with the inside of my leg.

I wore an ankle brace, and have been using an abundance of essential oils on my legs and ankle which seemed to help a lot with the swelling and bruising. I kind of made a concoction in an all natural moisturizer: frankinsence, lemon, peppermint, lavender, and clove.

A lot of my new supplements haven’t seemed to make much of a difference for me. I am kind of bummed. You can’t knock it unless you try it though. I am working on my adrenals, and trying to get any sort of energy back. Adrenal complex is supposed to be somewhat “stimulating” and also is supposed to help with POTS. I have also continued working on mitochondrial dysfunction.

One of the thoughts of my appointment with Dr S was to wean myself off of some of my neuro meds. It makes sense, even though it isn’t the number one cause of my fatigue, things that calm your nerves are going to make you less energetic and a bit more tired.

Okay. I will share this experience, I really was debating it, but I am real.

This incident happened BEFORE I even started weaning off of the Neurontin, the choice we made together. This is the very first neuro drug I was put on nearly 4 years ago to help with my severe tics.

As my followers know, I often sleep my life away. Sometimes 14-15 hours at a time. You have no friggin clue what tired is unless you have a debilitating chronic illness. Never tell me you are tired from the weather or such and such or I will want to throat punch you. Okay, back to my story.

I have driven throughout this entire journey. I am not an asshole and if I don’t feel well or have an aura of any kind, I will sit on the side of the road. I pretty much allow myself a 10-15 minute radius from my house in driving distance.

I have spent countless hours sitting in a parking lot five minutes from my house because I knew I was not safe to drive. I have had incidences in which I have forgotten where I was and ended up panicking, I have had days that I wanted to make it home so bad I threw up on myself while driving home. I just did not want to stop.

My scary moment. I was on my way home from work, out of nowhere, I fell asleep for a split second. It wasn’t like I was nodding off in exhaustion, I just had a very quick moment.

There was no cars around at that very second and I actually stayed in the right spot, but even worse, all flustered, I turned at a stop sign, not looking whatsoever and made my turn.

Nothing like this has ever happened before, but I am now I am definitely much more wary. I have been taking the time to take as much sleep as possible, and at the moment I have made sure I don’t have my keys and rely on Dave even more than I already do.

Some of my meds were a big hell no, not happening on the idea of tapering off of them. Neurontin (I will not share the dose for medical reasons for you all, once again clarifying I am not a doctor and do not offer medical advice), I have been taking a massive dose for a long time.

I had weaned myself down from my even higher dose in the past, of course very slowly. Well, this time, I rushed things, and am still paying the price.

One of the first things I noticed was my mind was not in the right place. I was feeling beyond depressed, agitated, anxious, and I have been hallucinating more and more at night . It was certainly a few very long days. My mind has been beginning to come back to a better place.

Since I have tapered down a bit, my tics have been appearing more. Honestly, I don’t care about the tics all that much. It is the head games are downright terrible. At least I knew those were temporary.

I have slammed my hands on the desk at work with my thriller dance tics I am all too familiar with. I have gotten stuttery, mumbly, more foggy and shaky, and my tics seem to go crazy at night.

At least we make light of it. My body was going crazy the other night. Hands flailing, yelling, body jerking, my cringes that look like I am holding in a sneeze.

We were watching the Olympics when my body decided to have a party I had no control over. Dave was teasing me, telling me to simmer down and he knew I was excited, and jokingly told me root for our teams a bit more quietly with a “shh” motion with his finger to his lips.

I don’t think cutting down on this med has helped in any way, shape or form. I was hoping it would make me less tired but it hasn’t done anything to help. This will be something to discuss at my next appointment.

Generally in the afternoons I have been running fevers 100-101. I am wondering if the heat is killing off the bugs. I think just about everywhere in the country was a big giant sauna for a week or so.

Inside my house though, I am covered in blankets and wearing a hoodie. It has been hard to breathe the past few days or so, I have been getting “actual heart pain”, like my heart itself hurts, air hunger, and I wake up a sweaty mess. I have been extra cautious in the shower as my POTS symptoms are getting worse and I am trying to avoid anymore falls.

Damnit. I am hoping it was just the full moon. Just another thing to mention. I absolutely need to nip Babesia in the butt. It took me two years to see improvements. That scares me. It’ll be okay, I have faith that it will get it figured out.

Now the awesome!!!

Dave took me on a beach day. We left very early in the morning so we would have the beach to ourselves. My goal of that day: walk five. And guess what? I DID!!!!!!!!

That is amazing and I am so proud of myself. Five miles, folks. There is still missing puzzle pieces, tummy healing, etc, but I am getting much better. Just look at how happy I was. I still am.
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My friend has even taken me out to a bar that has a nice patio overlooking the lake. It isn’t a rave or anything there, the place is rather quiet, but even being able to do things like that now is a good feeling. It is also good to be able to not have Dave (as much as I love him) have to join to be my babysitter. Girl time. 🙂

Also, I noticed on that “On that Day” app on Facebook, there was a picture from exactly three years ago and I have my most recent picture of me. Once again, you can see as clear as day how much I have improved. Wow!!!

That brings me to my Kimmiecakes advice of the day. Set goals for yourself, no matter how big or small and put your mind to it. A little tidbit, sharing your goals with others, posting on social media, or writing them down will make it much more likely that you will meet them.

Like I said, your goals don’t have to be to run a marathon. Have your goal be to walk to your mailbox and grab the mail, cook dinner. Anything. Baby goals, baby steps. Setting goals is positive motivation.
I guess I will wrap it up, this post was a novel and I know how hard it is for a lot of us Lymies to read this much. Hope you all have a fabulous weekend!

Annnndddd… Miss Olive says, “hi”!!
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