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.

 

July Part 1 – Keep Pushing

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I have been ridiculously busy lately, especially with work. I have definitely been slacking on keeping up with my updates. I have positive news though! No news is good news, right?

I had an appointment with my favorite Lyme literate naturopath a few weeks ago. We are still trying to figure out my complex puzzle, and he believes a part of my issues I am facing is drug induced mitochondrial dysfunction, which is kind of our main focus now, along with working on my gut infection, and Bartonella, which has slowly begun to rear its ugly head yet again. Super sucky.

Backtracking… What is mitochondrial dysfunction you may ask? Well, I will do my darndest to explain it correctly. Google to the rescue!

Mitochondria are a big part of your energy production. A huge part. Whole systems can fail if these cells begin to die and it can affect your entire body and its organs.

Antibiotics can cause cell death to mitochondria, and being on enough antibiotics to kill a horse for nearly 4 years, it is likely that this is could be one of the culprits as to why I am still not fully better and very much a work in progress.

Mitochondrial issues very well overlap a lot of Lyme symptoms. It is nearly impossible to know what is what, but it is certainly worth giving this a shot having it be a main focus for awhile.

It was once believed that mitochondria could not come back, but over time they can replenish. Hooray! This may take a very long time, but this is positive that I will get my little energy cells back. So, more supplements of course.

It is insane that I am not even on treatment and I take upward of 60-70 pills a day. I guess it helps me with my daily water intake 😉 Silver linings.

Honestly, right now a lot of my supplements I am suppose to take three times a day, I have been taking two times a day. I am afraid my timing is off, and the ones with food, without food… I dunno, I don’t really feel like eating anything after midnight when I go to bed. I know that probably sounds bad and non-compliant of me, but I am trying to keep up with everything on a “timely basis”.

As for the Bartonella that is creeping back, I am just using an herbal now to try to keep it at bay so I don’t have to be on antibiotics and continue to heal my stomach.

I did hear possibly the very best thing ever during my appointment. Dr S. said to me, “I think this might take a long time but I’m pretty confident we can get you much better or fixed.”

Even being under the care of one of the top LLMD’s in the country, the goal has always been 80-85% functional and that was it for me. I was told that is all there would ever be.

Realistically, I know some things might not go away completely, but in the near 4 years of treatment I’ve never heard anything like that.

Way to go Dr S. for making sure I still have my butterflies, rainbows, and unicorns mentality! Yesssss!

I am still babying my stomach. It hasn’t been perfect, but it is certainly improving. I have been doing well with my diet and the bloated look is definitely beginning to improve. Every once in awhile, I break my own rules and eat something I know I shouldn’t, example, I stuffed my face with Chinese food last night. All the bad stuff that even on IVs I wouldn’t eat.

It was friggin delicious and sometimes I feel like you have to break the rules for the sake of sanity, but I can tell a huge difference in my energy level, my head hurts, and I am just plain foggy. Needless to say, tonight will be a salad and vegan chicken night. Time to jump back on the horse and get back on track.

Bartonella as I had mentioned has also been one of my issues lately. It generally messes with my head in a lot of ways. Paranoia, hallucinations, anxiety, OCD, and oh gosh do my feet hurt at night.

Dave, my wonderful husband, is a trooper and uses his knuckles full force on the soles of my feet to get the knots out at night.

Dr S gave me an herbal tincture called Houttunia, and I think it is infused with something (Samento perhaps?) Well, anywho, I completely underestimated this tincture.

I was told to take one drop, and slowly work myself up to 15 drops a day. Yeah. I made the assumption that starting at one drop was the “I’m a pussy” dose, and started with five-ish. I say five-ish because I kind of just squirted a guesstimate of five drops in my mouth.

Word of the wise: listen to your doctor. LOL

I ended up with stabbing stomach pain, all my Bartonella symptoms flared, I was completely wiped out. It quickly brought back all the the days I am so used to. Sitting in my car at the bank or grocery store parking lot, and having to drive home because there is just no way I would be able to get out of my car. Needless to say, I took a few day break and started SLOWLY, and I haven’t had any issues since. I am still flaring, but it is tolerable.

Clumsy me, I fell again and ended up with a big ol’ bruise on my leg. My house is a single story ranch, and our back porch has one step and another single step further back, of course when I went down I hit the one of two steps then tumbled. Oy vey.
It is super annoying when my legs just give out. I feel as if they are like “just kidding!”, and I go down like a sack of taters.

I had an appointment with my dermatologist for my heart scar. It turns out it is a keloid. It sounds like it isn’t worth a surgery as it can easily come back and worse. Plus I could have to cut everything out, so I would be left with a bigger even grosser scar. It kind of felt like he wanted to line his pockets with money, as I did a little research and found out many plastic surgeons would not cut it out for this very reason. Of course, it isn’t covered by insurance anyway.

Scars I personally feel are pretty badass and tell a story about you, but this one is kind of “icky”. Haha. I will just live with it.

He also offered steroid injections, but I don’t really think that is warranted either.

I know you aren’t suppose to take steroids with Lyme disease, but sometimes in certain cases you have to outweigh the good and bad in particular situations, and this certainly isn’t one of them. Totally not worth it.

Now onto the good.  🙂

I have had some great days. As I had mentioned, I have worked much more. A lot more. I kind of haven’t had a choice as things needed to be done, but have done really well on staying focused, with the small exception of a few days I had to leave out of frustration or pick and choose what I absolutely needed to get done for the day.

Those are the kind of days I swear at the quarterly government reports because I have a total brain fart and once I get frusterated, I get all flustered and I need to leave and come back to it later. I have done the same reports for going on 10 years, they used to be so easy peasy for me. They are, if I am not in a foggy trance.

I would consider myself much more normal at least visibly. My friends had a small barbeque, and you wouldn’t likely be able to tell I am sick in any way. I even did a little dancing!

I have been moving around more, using the pool for exercising. This made me quickly learn that not only my legs are out of shape, I have also lost all muscle strength in my arms. It’ll come back to me. The more I try to do, the more it will come back and I am hoping that I will be more functional.

I even made it to Home Depot the other day!! Not only is it a big store, the lighting is terrible for someone with a lot of light sensitivity.

After awhile I began to get really fuzzy and dizzy, but I did a lot of walking and dream shopping since there is just no way I can afford anything in there. Haha. I was able to stay until Dave got everything he needed and there was no emergency rush out to his truck. Phew.

Last time we went to a Lowe’s, Dave literally threw me on one of those rolling pallet things and took me out to his truck. I had completely collapsed. I must have been a sight for sore eyes as he wheeled me out of the store, while I was a hot mess laying on the pallet.

I conquered the trip this time, and I was there much longer. Things are never going to change unless I start getting back out there into the world. I would rather fail a few times (or a lot of times) and say I tried at least.

I did a big grocery shopping trip with Dave! We usually stick to the tiny store in our town, but we ventured out of town. I did great. No having to leave, no dizziness. We didn’t have to rush. It was awesome.

It wiped me out by the time I got home so I took a nap but look at what I am accomplishing! There is no doubt I am moving around much more.

This comes to an important point with all of this. Kimmiecakes rant of the day. I know some will probably take offense, and believe me I have been through hell and back, and it has kept me going and fighting.

Keep pushing. It may be hard, but doing just a little extra is great for the mind, and your body.

If you think about it, I have had years and years of doing absolutely nothing. A vegetable at one point, a wheelchair, not moving around at all. Muscles are definitely toast. Everything is weak and depleted.

I know it might come across as an asshole thing to say, but mind over matter it. Do something every single day. One little thing. Anything.

Even if it is sitting outside for awhile. Just an extra push. I have talked to sooo many Lyme patients over the years, and I can tell when there is night and day differences in attitudes it plays out in a link to their health.

It is kind of bizarre, but many a time, I see those who let this terrible disease consume them, eat them alive, and let it define them not heal. These are the people who just don’t see the silver linings in anything. There is ALWAYS silver linings.

You all have the power to do one little thing that will change your day. No matter how big or small, it is still an accomplishment. Give yourself credit with what you CAN do and focus on that. Push. Fight. Kick some ass!

Granted, this disease is ridiculously complex so there is so many things to consider, but I have seen those people are often the ones who stay sick.

Hell, I am a medical mystery as dubbed by all of my doctors, but just look, after over 25 years of infection I am finally starting to see some improvements. I got told some amazing news and I have such high hopes that this is not going to be forever. I think my body is beginning to want to heal itself. Turtles pace, but in the right direction.

Your mind is an important part of healing. Do not let this define you. I am a firm believer in that.

End rant. Or motivational speech? I don’t know, but it has been on my mind lately upon speaking with some current patients and it makes me cringe. We are all allowed a bad day or two, to be angry at the world, but I got into it trying to help someone look at the world in a new perspective and she just wasn’t feeling it. Oh well.

I hope it serves at least a few of you well! It is hot as Hades outside now, but have a seat in the shade, read a book, walk to your mailbox, sit at a table and prepare dinner (I did this for years!), take a bath, anything! We are all effected in different ways, so what you are able to do is likely different compared to someone else. Just do it J

P.S. I will give another update hopefully soon! I had yet another visit with Dr S and will have much more to share! I’m a little behind the times 😛  Happy Sunday.

Ahh! Miss Olive! I almost forgot about you. She is doing great, I even left her out for the first time to take a shower and she surrounded herself with toys.. caused no trouble! She’s 50 pounds now!!
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