Happy Monday


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

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

I also have to share a picture of Miss Olive as I always do… That face!
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June Part 2 – A Reminder

This past month has been kind of bittersweet. It marked the three year anniversary being treated by one of the top LLMDs in the country. There was a tremendous amount of hope beginning this new step in my journey, yet the path has been less than easy.

I am nearly four years into treatment, and this path still isn’t easy (LOL), it has certainly taught me that patience is a virtue. Pshhh. Darn life lessons.

Anywho, my TimeHop on Facebook reminded me of the video I posted when I first started my blog exactly three years ago. It definitely left me reminiscing about the past.

Disclaimer: I am having a hell of a time figuring out the right words today. Google has been trying to lend a hand but I don’t know if it is working out so well or not. So, just bare with me and I am sure you can figure out what the hell I am saying haha.

Please check out my “About” video on the top of my page. You will see exactly where I started. Well, not where I started, as I had already been through about 8 or 9 months of treatment, but the starting point with this LLMD. * This is when you check out the video*

Once again, this will all make sense if you watch the video. Or I just sound like I am rambling. I sort of am. That’s okay though. It happens.

Without the help of my amazing doctors, I would not be where I am today. After discussing with Dr S, I was lead toward the diagnosis of Tourettes syndrome, as his research really brought out the flaws of my current neurologist. It was brought out from being sick, and can also be genetic, but it is so much better than it was and we have found my main “triggers”. The IV treatment and neurological medications have helped lessen this tremendously.

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My other photo for that day was one evening that a best friend and Dave pushed me in my wheelchair so I could be a part of hanging out. Thumbs up, of course!!!!

I no longer need my chair or a lot of assistance, I still need to hold onto Dave once in awhile, or unless it is a super long walk with bright lights.

I have had since then had 11 months of aggressive IV and oral treatment after 5 months of IVs and a few months of orals alone with no success.

There has been so many bumps in the road (ok big ass potholes), but look how far I’ve come!

I know it is still a very long road, and now it is most of the time my struggles are invisible to others. Watching this video was a sombering reminder of how great I am versus how used to be.

All I can say and my piece of advice is, 
don’t ever forget those silver linings if you are in a similar boat. Look for anything positive, big or small, in your life or what your can do or accomplished.

I still love my life, and everyone who has been a part of it who loves and supports me has certainly made it so much easier.

Now we are back to 2016 and how life has been…

For awhile, I was really anxiety ridden. Even though it wasn’t really my deal, I get all flustered doing anything out of the ordinary. One of my best friends got married, and I was a bridesmaid. Dr S jokingly said to me, “what was she thinking?!” So, yeah. I was a bit worried.

The morning of, I did poorly. I was having unintentional blank stares and ticking while trying to get my hair and makeup all done. It was enough for one of the bridemaids and the bride to ask and make sure I was okay. What was I suppose to say? “Umm no, I am feeling like I need to curl up in a little ball on the floor?!” LOL Another bridemaid snuck into town and got me a protein drink as well. I have kind people in my life.

I pushed through, and someway, somehow pulled out of it. I did REALLY well!! It was really hard to stand there and take pictures, it was also hotter than Hades out, but I made it. I EVEN DANCED!!!!!

That is absolutely huge for me. That day was also the longest I have been on my feet in years. I am so proud of myself.

This really shows how things can really change from one part of the day to another having a chronic illness. I am so glad things turned out the way they did.

It was a beautiful day. I might have cried a bit during their ceremony, but at least it wasn’t an “ugly cry”. Haha. Tears of joy.
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I’m on the very left side. Dave is on the very right side. Shows you how one can look perfectly normal and be sick, huh? We are all a great looking bunch. Never ever prettier than the bride though!
I did spend the next few days making up for it. Of course, I needed to catch up on my sleep, and a lot of my body kind of decided to hate me.

My calf muscles have been painful, and I keep getting edema in my feet and ankles. Making sure I stay hydrated and elevating my feet seems to help and it never stays, so I am not quite sure why.

The endometriosis pain is back. This time however, there has been some spotting. I almost forget girls get their periods. It’s been 8 months. 8 months that I haven’t missed.

For the past few weeks, Dave has gone grocery shopping alone a few times. That is usually our time to get me out of the house and get some exercise. A lot of times I try to go, and I make it most of the way, but I get the “time to go out to the car” from Dave, he hands me the keys and I wait until he is finished.

I have had a lot of days that I have been really cloudy and ticking. Days that I want to run some errands, and I sit in my car trying to collect myself and have enough oomph, and I end up going straight home. I just can’t do it, and it wouldn’t be safe.

There has also been a few night time scares. For those who do not regularly follow me (you should, I am awesome), I have POTS. Dave has no longer been babysitting me while I take a shower for awhile now, and I am now having some dizzy spells again. My body cannot regulate temperature whatsoever, and I think that doesn’t help any. I have had days in the past that Dave would help me out in the tub, he would tell me the water was incredibly hot, yet my body temperature would go down to the high 95’s, I would turn blue and he would have to warm me back up. Dr’s still don’t know why this happens to me.

I can feel it coming, well… most of the time, and I quickly turn the shower off and seek cover. Even if it is laying in the tub, on the bathroom floor, anything. I would prefer to not go down like a sack of potatoes.

I have also had some good moments though. Running errands, being on my feet more, doing some pool exercises, just trying to keep going.

I know I had Dave do some shopping and I have had some unsuccessful trips at the grocery store, but there has been days that I went all by myself, to two stores to get everything we needed! Dave and I even went to motorcycle week so I could get my Dad his early Father’s Day present, a tee shirt. It was busy and I did a decent amount of walking. Get those legs going!

I focus on the good. It keeps you going. No use in moping and wrapping your head with all the bad. It really isn’t a great motivator for healing.

I had mentioned and posted a picture of my Bartonella streak last time I wrote, and I am thinking I am having a flair. I am only like this is Bartonella is having a party in my brain…..

Okay. I have a confession to make. I had a super Lyme rage moment, I was not my finest ladylike self. This woman probably thought I was what is wrong with America today and I am an awful troubled youth. Oy.

I was sitting in the grocery store parking lot. Of course I was! I have to recoup from as much as picking up peppers and onions.

She swung car door open, hit my car, and began to walk away like she had done absolutely nothing wrong. I WAS IN THE CAR AND SAW HER!!!! It’s cool right? No. Not cool.

I then backed up my car and blocked her in the parking lot and had some words with her. It began with how disrespectful that was as I was sitting right there, and if I wasn’t around she should have left a note to every single cuss word, c bombs and f bombs flying for about a solid five minutes. Just imagine five minutes of being reamed at by some crazy girl with every swear and name calling in the book.

She simply said in the midst of my yelling, that I was near the white line (THE PARKING LOT WAS NEARLY EMPTY, PARK SOMEWHERE ELSE! I WASN’T BY THE WAY, AND THAT REALLY ISN’T RELEVANT WHEN YOU SLAM INTO SOMEONE’S CAR!!!)

All the while, when I was completely flipping out, calling her names, just having complete word vomit all over this idiotic woman.

Did I overreact? Perhaps. As you can see it is still a touchy subject. Haha.

But who the hell does that? I know I sure wouldn’t. By the way, my car was absolutely fine, I had her license plate written down in case, but there was a massive amount of navy blue paint on my passenger side rear door. Take that!
Here is a link that discusses Lyme rage in full:

https://kimmiecakeskickslyme.wordpress.com/2013/09/29/lyme-rage/

You can read all about my jerkface moments, as this has not been the first, and I am sure it will not be the last. It will probably help a lot of you relate, and a great read for family members to understand this isn’t always “you” when these episodes happen.

I have some of my recent lab results back, and also had some tests done. I had my Vit B levels checked, and they were over 5,000/ Normal levels 200-900? Dr S said too much can cause adverse reactions. I want to be retested though to see if it was a fluke. I have been making sure my supplements don’t contain Vit B and I will mention getting the test redone at my next doctors appointment.

I have the feeling everything is just floating around and not being expelled nor absorbed. Hmmm..

I had to get a mammogram done, and t turns out I have some very fibrous tissue, and they found a small mass. They wanted to be safe, as I have a family history of breast cancer at a very young age, do I had an ultrasound done. Turns out, I have a fluid filled cyst, and a few smaller cysts in my breast, and that is what is causing the pain.

Of course, Miss Research right here, a lot of information contradicts itself. When to worry, what size is too big or too small, and it appears I am at the borderline range. Most of the time these go away on their own, and I have decided to wait it out a few months, see if there is still pain, and go from there. I believe they will just insert a tiny needle and get the fluid out. Easy peasy.

I will cross that road when I have to. It is nice to not have one more thing to add to my list of falling apart, although I was not entirely worried to begin with, as you don’t know until you have the results right in front of you, there is no point in freaking out.

On a good note, they also will have these images to compare to if I ever have another issue arise, and it will be a lot easier for the radiologist to distinguish any changes.

Well, that is about it everyone! Wishing you all a happy Friday!

Almost forgot, here is my routine picture of Olive, my precious sleeping beauty.

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June Part 1 – Workin’ It

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I’m here! Just slacking once again on my writing. Hmmm… I have written notes throughout this past half month to try to remember everything, so I wouldn’t bullshit you all. 🙂 I have had an appointment with my neurologist finally, and an appointment with Dr S today.

There has been some fairly decent days (for me anyways), ones that I have accomplished a few errands and helped Dave grocery shop. I have been trying to work on getting stronger, and have been starting to use my parents pool for a little physical therapy. Boy, I will tell ya.. I have always been focusing on my legs as the primary issue, but have totally forgotten about my arms. I have zero muscle left. Needless to say, I stayed in the kiddie end of the pool to get some exercise.

I do pay for trying to push myself badly. It generally takes a couple days to recover. I get beyond exhausted, foggy, and my tics come back. I still have to go back to the car and sit and wait, or go straight home even if I need something at the store. Oh, and my beautiful face come back. Lookin’ sexy, kinda?
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No, probably not. Haha. I really need to do this though, I won’t get any strength back by sleeping my life away on the couch or curled in a ball covered in blankets watching TV. Gotta start somewhere! Even for this much, I am really proud of myself. The other day I even went to the store, picked out flowers at a farm, and planted them. Go me!

I have been sticking to my strict diet and working on my gut infection and my neuro stabilizing supplements. They were working a lot in the beginning, I have lost a few pounds and am much less bloaty, but it hasn’t improved any further. Dealing with the gut is a tough thing that takes time. I just gotta keep at it.
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So weird. I wonder if Babs is acting up? This is the only picture I actually took, but I keep getting streaks on my tummy too. Those are almost more like straight red stretch marks. They go away within a day though. And, little blue veins poking out of my thighs.

I have been having a lot of anxiety at night. Paranoia. Every little thing on my mind eats away at me, and anything negative from the past replays in my mind over and over. Things that haven’t even happened yet play in my mind. I am in a wedding this weekend and I have anxiety about how I am going to feel, and I wish that I was more involved in helping out. Meds to help with sleep and essential oils aren’t doing the trick. It is really hindering a restorative sleep, and I am beginning to have nightmares and moving around a lot in my sleep. A few weeks ago, I was asleep, punching my headboard to my bed. I have been all over the place, tossing and turning. It would probably help to get to a better place with sleep again and I would not feel so yucky.

I had my neurology appointment last week. I had to joke as soon as I got into the office. It is bright as hell in there, which is kind of a neurologically impaired person’s nightmare. Really? Dim those suckers down. I can’t be the only person with light sensitivity that comes through that door. Oy. The good in that (I will put a positive spin on it), is that they will see exactly what those lights do to you. It is one of those things, generally when you walk into a doctors office to discuss a problem or symptom, it just disappears. Poof! When you get home, it is right back. And you just look like an idiot or a faker.

I suppose he probably isn’t reading this, so I will be honest with you. I will say, he is REALLY a nice guy, and I do like him. There is a BUT though. I will put it this way. He was probably the very bottom of his graduating class and snuck by. I saw him a few years back, not noticing anything because at that point I was petty much a vegetable. A twitchy, yelling vegetable. I had no idea what the hell was going on around me.

Example one. He referred to his notes from my previous appointment, and of course he remembered me. I am kind of one of those people that is hard to forget. Obnoxiously yelling, flailing my arms, finger snapping, clapping like a friggin harbor seal. Yup. Not too hard to forget. He had mentioned Tourrette’s, even though he understood the cause was likely my tick borne infections, and said that because I was not swearing it wasn’t quite but very close to Tourrette’s, or borderline?

I can’t remember the exact wording… I do know that an extremely small percentage of Tourrette’s patients actually do swear, so I kind of bit my tongue. This is not correct information for a diagnosis based on guidelines, and telling Dr S this, he was kind of disappointed because sometimes in these situations it is good to actually get something down on paper by the neurologist.

Example two. I had several notes prepared walking, well, waddling though the door, with everything I wanted to discuss. My foot and leg numbness was a big priority. What is permanent damage? Does he think there is permanent damage? Just something I have to deal with or something he thinks will get better? Any thoughts?

He gave me an exam. Not ONCE did he test the bottom of my feet for any response, the sides of my feet, reflexes in my feet. I even suggested it. DO ITTTTT.  I would think, common sense, if this is the number one complaint of the patient, it would be done. The only thing that was done in relative to my feet was he used something that kind of looked like a golf tee so it was kind of sharp at the end, made sure I was unable to see what he was doing, and told me to tell him when I could feel it. He did it a few times. Every time I answered, “right there!” or “now!”, it was midway up my calf. I really thought that he was starting out there and going downward. Nope. Upward. There was a whole lot of nada until halfway up my calf.

At the end, he did tell me that he wanted to follow up with me in a few months, and wanted some of my blood work to be redone. The big positive: it sounds like he is going to set up an electrical conductivity test to see how my feet and legs do. Which was huge. Another positive was that he was willing to refill my lamictal, which I cannot get here. One less thing to think about.

He also changed the wording on my lamictal as it stated that I have epilepsy, which I do not. He said that it was kind of a red flag, so changing it is better. Driving and whatnot. I told him the truth that I do drive, even though I am limited, like a 10-15 minute radios each way and that is my maximum. I was worried he was going to pull my license when he saw my list of meds. He didn’t though, thank god. I already feel like I have lost enough independence with this disease.

I was hoping for the epilepsy testing though, to see if the drugs I am taking are the right choice for me as it would give me that answer. I guess I can’t get everything I want. At least it sounds like I will be getting that nerve test done and my lamictal refilled, which were kind of the top priorities.

I had my appointment with Dr S today. It was a really easy, straight to the point appointment, really. We decided it was still best to not be on antibiotics. They really serve no benefit to me at the moment, and my stomach really isn’t fully healed.

He was really happy and encouraging that I am working on getting stronger. He wants to control the neurological issues more, and have that be my primary focus. Inflammation and more neurological stabilizing supplements! Also, working on the liver to make all these things work better and I absorb everything better.

I have been procrastinating for some time now on an issue, and Dave has gotten pretty mad and pushing me to call. I have about a dime-ish sized lump in my breast. It really near your armpits where your lymph nodes would be, but it is uncomfortable. I guess I need to take it more seriously. I honestly just hate dealing with doctors. In my family history, my grandmother died a very young death, before 30 of breast cancer. I am nearly positive it isn’t the issue, but a mammogram appointment has been set up for me.

Photo on 6-1-16 at 2.34 PM #2

Also, I guess it is NOT normal for your heart implant removal scar (I had it removed in January) to have a keloid looking scar and certainly not normal to have black specks in the rest of my scar, and the left side not looking like it closed all the way. It did, but it kind of looks like there is a hole. Sorry for the super crappy picture, it is really hard to take a picture of your chest with a full sized macbook. Haha. Just to give a very basic idea.

Dermatologist appointment in the works. Super duper. I didn’t even bring this issue up, he saw it and said I really should get it looked at and possibly biopsied. Especially having black dots in it. Who knows, maybe they will cut it all out and I will have an even more badass scar. Woot woot! Just another thing to put in my calendar.

My electrophysiologist called for a follow up appointment as well. The prescription he gave me, the tweaked dosage, and his game plan of the recumbent bike, lots of water, salt and simple leg exercises seems to have helped, so I kind of put it on the back burner for now. It is so busy with work for my Dad and Dave, who would be the ones who would have to give me a ride.

My birthday was on Friday. 29! I plan on being 29 for the next few years. We didn’t really celebrate, the weekend before however, Dave did take me to the ocean for lunch, and I was having a bad day, but still was able to do a small walk on the beach. I wish I could have done more, but I wouldn’t have made it back lol. I always feel like a new person and completely relaxed after spending some time at my favorite beach in Wells, Maine.
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That’s my update for now! Wishing you all a happy Wednesday!

Of course, a picture of Miss Olive, sleeping with her caterpillar. 🙂
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May Part 1 -One Long Vacation..

Wow! It has been a month since my last update. Hmm. To be fair, I been trying to keep up with work, and by afternoon I am done for the day and have been sleeping or have been a big ol’ couch potato.

I have officially been off of all antibiotics for 8 weeks now. Yup, as my title says, it has been one long vacation for sure.

I have been working hard on getting rid of my gut and intestinal infection. It has been especially difficult keeping up with a proper diet (I am on the FODMAPS diet) having so many food intolerances and also trying to go the vegan route.

For several weeks I found myself absolutely STARVING. Some of this is the bugs screaming, “feed me, feed me!!”, but another big part of it is not getting enough protein no longer eating meats or eggs.

It was pretty gross. Stir fries with veggies have been a staple lately. I would have about 3 bowls, then make a heaping plate of vegan nachos… and embarrassingly enough eat a jar of peanut butter as soon as Dave went to bed. I didn’t need any judgment. Haha.

Oddly enough, I have been losing a lot of inches. My size 11 pants are now down to a 7. At least my pants that were in totes in my closet are now back in use.

There have been some better days and some not so good days. Yesterday I was able to work for a couple hours, then I made a long drive.. okay well, 15 minutes is far for me to go to my bridesmaid dress fitting.

I went to the gas station and pumped my own gas, and stood at the town hall in line to get my car registered. Then, I went to the store to pick up a few things and cooked dinner. Wow! That was a very good day for me.

There has also been several days I tried to tackling too much. On my one Sunday off this month, I went to the grocery store in the morning, but ending up shaking uncontrollably for hours until I finally fell asleep.

For the next several days I paid for trying to do something “normal”. I always tend to end up with numb legs and feet, begin to be stutter and be my classic Tourrettesy self. Blah.
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This is what overdoing it (basic tasks of someone who is not chronically ill looks like). I don’t think I will make the cut for America’s Next Top Model. Haha. Oh well. A face only a mother could love.

Unfortunately I have been having a hard time with endometriosis pain again. It has lessened quite a bit, but I have had mornings that I have been in so much pain that I could not stop dry heaving and began to black out.

No aspirin or ibuprofen touches this pain. I don’t have any sort of pain management doctor nor do I have any stronger medications so I just have to deal with it at the moment.

There has been a few negative events this month. I occasionally have to wear sunglasses inside, and it was one of those days at the post office, and a man felt the need to approach me, (he wasn’t even near me!) and ask, “Do you think you are a celebrity with those sunglasses on?”.

I was in no mood that morning. I had a very hard time getting ready, it was one of those brush your hair and sit, brush your teeth and sit kind of mornings. I made it halfway to work then had to go back home as I was a dummy and forgot my meds as I was just plain out of it.

I said to him, “I have seizures, how about you mind your own fucking business!!”

Okay, I might have been able to handle that a little better, but it was a Lyme rage moment.

This type of thing reminds me of when my tics were absolutely out of control and strangers would approach me asking what is wrong with me.

Really? I don’t go up to people in a wheelchair and ask why they can’t just get up and walk. People have no manners.

With the tics I always just said I have Tourettes. I actually do from the neurology guidelines, and when they would walk away, I would give them a big ” FA FA FA FUCK YOU! ” Haha.

For Lyme disease Awareness Month, I set up a proposal to discuss Lyme disease with the students at the local high school. I had hopes of perhaps doing a presentation with their environmental science or regular science class.

My reply via email was a polite way of saying that they were filled up for the rest of the year and have a more important ciriculum to fill… like cutting up worms and frogs. He told me to try again next year.

You know what though? I am really proud of myself for putting myself out there, and putting together and doing a presentation in the state that I am in would have been beyond difficult for me, but I really wanted to try to teach the kids the severity of the disease, prevention, the proper way to remove a tick, what to do if you are bit, facts. Anything and everything that could possibly help bring knowledge and awareness. Guess the worms win.

Exhaustion has been a huge problem of mine, and the past few times I have seen my massage therapist, she told me my glands were really swollen. I figured it was detoxing all the bad stuff out of my stomach, especially considering my face is showing the signs of detox. I look like a teenager going through puberty. I’ll get to the swollen glands in a bit.. but the great news is my circulation has been improved this past month. Hooray!

Last week I had an appointment with my favorite Lyme literate naturopath, Dr S. So here is where I stand, and the game plan for right now..

At the moment, we both feel that it is best to work on the gut infection and trying to get the neurological and adrenal stuff balanced out more and have these issues better managed.

I don’t know if I had already mentioned in a previous post, my blood sugar is being funny and keeps dropping when it really shouldn’t be. Low blood sugar is a big no-no for those with a lot of neurological issues. So, I will keep a piece of fruit or something handy. Bizarre though, As my diet consists of carbs especially during treatment to avoid some of the nausea. Medical mystery once again.

He did give me colloidal silver for the meantime, to try to not get any worse. Just a “keep things at bay” thing to take. I think once I get back on track, perhaps amoxacillan and herbals are going to be my next step. I need to take it easy. I don’t really want to go back downhill to where I am, I want to move forward.

Lucky me, I HAVE MONO AGAIN!!!!!! Super. I was trying to blame the exhaustion, constant napping, and being zombie-like on not having my methylcobalamin injections and my swollen glands on getting rid of all the toxins in my body.

Nope. Well, it is going to take awhile to get back on track, but I am being optimistic that maybe once this all clears I will be a lot better and even have made progress by not even treating. Let’s hope!

I guess lastly, I felt terrible yesterday. I had finished tying Olive up outside and all of a sudden my right leg said, “JUST KIDDING!!!” I fell down the steps and nearly half of my body landed on Olive, the other half part of the step went into my back, bruised knee, muscles pulled. I’m okay, just sore, but I wanted to cry for Olive. She didn’t yelp, which would have made me a crying mess. She did have this look, with her eyes as wide as saucers like, “Mommy? What did I do? I didn’t get into the trash or be a bad girl?”

After awhile of not being able to get myself up from falling, my doggie crew came to the rescue. I think Olive realized it was an accident (I still feel like an asshole even though it isn’t really my fault I lost control of a limb), she came over with a wiggle butt and giving me kisses, as well as Cooper.

Chance always knows as he has seen me at my absolute worst, much more than the other two, that something is wrong. He just rests his head on my body and lays down. And that is exactly what he did. He is my absolute love and one of my rocks. I am sure many of you have a furbaby that keeps you going. J

Honestly, it has taken me about a week to write this single blog entry to cover an entire month, so I apologize if it seems like I am all over the place. I probably am a little bit. I probably should have given the warning at the beginning of my entry. Whoops.

So, that is what has been happening in the world of Kimmiecakes. I will continue to press on, and I will do my darndest to give an update sooner. I have a neurology appointment and another appointment with Dr S all set up, so let’s see how this all goes!

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I have been sharing pictures of Miss Olive but figured I would show a picture of my little family as it puts a smile on my face. The question is, where am I supposed to sleep? LOL

December Part 3 – The Appointment

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My long awaited appointment was on Friday. I had a pretty lengthy amount of notes, and I also sent over all my additional blood work. I had never spoken with this PA before, so I was really nervous as to what would be said, and honestly had the thought I very well might have been dropped as a patient and told there was nothing more that they could do for me.

I had pretty clear bulleted notes, strongly voicing my concerns and disappointment with my care. That I should have been making more improvements than I have. I know my body, and a year and a half with extremely aggressive protocols without improvement tells me something has to change. I tried to be polite, and it was one of those things that I wrote, “I don’t mean to sound rude but..” I was kind of being a jerk. Especially with some issues I have had with the notes I have received regarding my past appointments, as well as for some reason I am having a heck of a time getting prescriptions refilled. As nice as I could be, it was very obvious that I was pretty pissed off with everything. I was honest and told them about my long break, as well as changing my protocol to how I saw fit at the time.

My appointment did go a lot better than expected. I think my pretty blunt notes with my concerns and discouragement was actually a big help. I feel like I was at least somewhat listened to. I will no longer be doing Monday through Friday treatments (I still get my Thursday and my fun Friday bomb day week one), but the load is less, and I will now be doing every other day treatments. Also, I will be having 3 1/2 week breaks in between my cycles to recoup. I think she understood that I really do need that time off to recuperate and detox. I think this will help a lot.

We are going to focus more on Bartonella the first week of treatment, and the second and third will be more Babesia focused. I am a little worried however, as I kind of gave them my concerns about going on a specific antibiotic and I am pretty sure that is one key antibiotic that is tearing my stomach apart and making good use of my legs to run to the bathroom, and guess what? I am on it both weeks. Haha. I might have to tweak this, but I am going to give it a go and see how everything pans out. It might be a lot better considering I will no longer be treating every single day.

One of the top concerns she had is my need to sleep constantly. She wants me to get on a more regular sleep schedule, and maybe cut out my naps. At least my big one, since I don’t always take two during the day. One thing I will be adding back into my treatment is my B12 injections, as I have not done them in over a year. I have noticed that they do give me a little burst of energy, at least on the first day I take them. I will be taking my neurotropics earlier, my dosages tweaked a bit, and the goal is to be in bed around 10:00.

I had mentioned my myasthenia gravis antibodies to her, and she told me that I should be retested in the future. Maybe in a year. Okie dokie. She did encourage me to make that appointment with the neurologist to get an opinion, but she did tell me that if I am on antibiotics I might not have the greatest baseline, and it might also be too early in my treatment to really tell if there is permanent damage going on.

I will still make that appointment, just to see what he has to say about my progress and pick his brain a bit. He has seen me at my very worst, so he will at least know my case a bit more.

I have been trying to use my recumbent bike everyday, even if it is for 5 minutes. I have made it up to 10 some days. That is pretty sad considering I use to do the elliptical on the highest resistance for an hour before my strength training or zumba classes at the gym, or just going around the circuit and using the weights. It happens.

The first few days after my antibiotics, I have been feverish. Hot cold hot cold. My feet are either numb or the soles of them were in so much pain. I keep losing my train of thought, tic at night, and feel a bit depersonalized. This happens most when I am starting to get tired. I have noticed that lately the first few hours I am up, I am at my very best for the day. It kind of slides downhill after that.

Yesterday and today were really the hardest on me. I was just plain a mess. I think I am just herxing, since it has only been a week off treatment, and last time I took 5 weeks off without any real issues. Yesterday I was running a fever, my hands and feet were completely freezing, and I was so out of it that it took about 15 minutes to even get out of my car. I had to lean on anything to stand and my legs and feet were really numb. I went right to sleep as soon as I got home from work. I did feel a lot better after my nap, but I still wasn’t feeling so hot.

Today it kind of feels like I have a hangover. I have wicked pressure on my head, am nauseated, and I am just plain loopy. I am once again running a bit of a fever. On the upside, I am more functional body wise even though my symptoms still remain the same. My Dad had to run an errand for me, but I was at least able to drop the work mail off, pick up take-out since I don’t feel like making dinner, and was able to walk far enough to pick out a Christmas card for my parents since I couldn’t get a close spot. I even vacuumed. At least I got some exercise. That is still a lot for me to do, so that is something. I know I need to and just push as hard as I can go, even on lousy days. I really could nap right now, as I can barely keep my eyes open, but I am going to wait at least until 5:00 rolls around. I hope changing up my neurotropics will get rid of this complete exhaustion. Improve it at least a little bit.

I am also excited to announce a new addition to our family! She will be coming home with us sometime next month. Her Momma is a rescue from Texas, and was transported here to New Hampshire.

 

Some may think I am crazy for wanting another dog, but it really is a good motivation to keep going. As soon as I got off of my IVs, we got Cooper from our local humane society. I was doing a lot better at that time than I am now. I know however, I will make it work.

I love her so much already, and training and taking care of her will be a task but it will be really rewarding. That first time your puppy sits, lays down, gives you a paw, stays, etc. etc. is such a good feeling. And watching them learn, they are excited too. Well.. obviously they are too, maybe only for the fact that I have treats hidden in my pockets 😉

Dave will also be a big help. He is the one who gets up in the middle of the night to let the pup out. I care for her during the morning and when I get home from work. This will be a great thing for us. Ain’t she a cutie pie? We don’t have a name decided yet. We were thinking something that starts with a “C”, since we have Chance and Cooper. Hmmmm… thoughts?

Wishing you all a very Merry Christmas if I don’t post until after the holiday. I have been remembering to turn the Christmas tree lights and our lights in our living room, and I think I am just about all ready to go other than wrapping presents, but I am one of those people who just throws things in Christmas bags or I will go insane. Dave takes over the wrapping jobs. Losing the tape, the scissors.. the cat playing with the wrapping paper. Bags it is.  We went light this year with shopping. My brother and Dave’s sister we didn’t have to shop for (I will bring her flowers anyway), Although we have close to Christmas birthdays for family coming, shopping was pretty easy this year. Christmas didn’t go crazy at all. Such a relief. I usually get beyond stressed out.

I think my biggest fear this week was baking, but I have already started, I will do a little bit each day. I am not a baker whatsoever, and my cookies, peanut brittle, or whatever I decide to make never looks like one should eat it. I remember last year, Dave made the peanut brittle because I got exhausted after making a few batches of umm.. interesting cookies. My Dad commented, “this year is the very best peanut brittle you have ever made!” Yeah. That is because I didn’t make it. Haha.

This year’s peanut brittle is made (My Dad said it came out awesome, even though I had to make it twice since I burnt the shit out of the first batch 😦 He wouldn’t thell me it was better than Dave’s batch though. Wah. )

601832_10153337823322404_9066398234094604034_n^^^ My sad peanut brittle failure face lol. We made beef jerky in the dehydrator this year, and I will make bear claw cookies tonight. Sugar cookies and rice crispy treats will be my last project tomorrow.

We will be celebrating Christmas eve at my sister in law’s house. She was pretty considerate and called Dave to ask about what I am able to eat. That was really nice of her, as Dave was planning on having me eat before we went over there. I can at least join everyone else. 🙂 Christmas day we will be at my parents. Once again, wishing you all a great holiday!

November Part 1 – Rugged

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Last week I knew it was time to start treatment again. I have been allowed the option to have two or three weeks off, but my body always seems to tell me when. I guess you can say it is a damned if you do, damned if you don’t sort of thing. I have a little glimmer of blue skies after the herxes calm down, but the bugs begin to have a party again, and all my symptoms come rolling back full force.

The first day of my protocol, I did surprisingly well. I had my usual loopy feeling, but I was okay. By the evening however, everything turned upside down, and it has been like that ever since. It has been an incredibly miserable week. Physically, emotionally, it has been completely draining. It has been rugged.

As much as I try to suck it up and at least go out to dinner with Dave on Saturday nights, it was another stay at home night. I always feel like he is disappointed, because it is “Dave and Kimmie” time. Even though we are still together at home, it really isn’t the same as going out together and doing something, since we stay at home every day of the week. Does that kind of make sense? It always leaves me feeling guilty…. even though I probably shouldn’t. Although I am a “mind over matter” believer, I know my limits. And so it was take out and a Steven King movie, since it was Halloween night.

All week, I have been so blurry, disoriented, lightheaded, and my legs don’t seem to want to work. This morning, I nearly fell reaching for my boots, pulling out my back yet again, and the muscles where my achilles tendon is in my left leg. Sometimes, it is just way better to fall. After all, I would have fell into a pile of shoes, sandals that I haven’t taken care of yet as I have not accepted winter is coming, and boots. That would have been much less painful than trying to save myself.

In the office, I have been in my own little world. Luckily, things have slowed down a bit this time of year. I have at least formed a check list of things to do on my desk… accomplishing tasks on the list and checking them off is another story. But I have a list. Haha. My week has basically consisted of ticking and dry heaving at work, as this treatment seems to be a doozy on me. I have spend afternoons and evenings jerking on the couch, and slurring my words.

Note to self: Do not ever cook corned beef in the crock pot, or boil cabbage (well.. Dave did, he has taken over a lot this week), when you are nauseated. The smell would not leave my nose. For the entire afternoon and night, I had that awful feeling in the pit of my stomach like there is a bunch of rocks, and that lump in your throat that you could throw up at any moment. I opted for my own greasy gluten free mac and cheese to coat my stomach that night. It helped for awhile, but after a few hours everything came back even worse.

When I first started to get really sick, I would always tend to forget where I was going while I was driving. I had a sticky note system. It worked pretty well. “Store”, “Bank”, “Home”. I would forget where I was planning on going, but a truly terrifying feeling is completely forgetting where you are, what direction you are headed, where you are going. Nothing was familiar. I began to panic. After a bit, I recognized a lumberyard and knew where I was, and that I had just left work. I just might have to o back to my sticky mode method again, so I at least know where I left from if I am in that situation again.

That day, I knew I had to stop at the bank and see if some scripts were ready at the pharmacy, but just sat in my car in the parking lot. The building seemed daunting to me. Although it is in I guess you would call a little plaza, if I am thinking of the right word, and it is right next to each other, I just couldn’t do it. Every time this happens, it makes me incredibly sad. And so I drove straight home, let my dogs out, and prayed they wouldn’t bug me for dinner early because all I wanted to do is sleep.

And there is my favorite, Flagyl days. It is like my body knows it is coming, and automatically wants to reject it. My pill was in my mouth, along with another antibiotic, and I could feel it dissolving. That beyond disgusting, metallic taste. My throat just wouldn’t let me swallow it.

Instead, my body decided it would be awesome and I began to throw up. It dribbled down my chin as I was trying to hold it in. I didn’t know what to do. I needed to take these pills, I had already taken my seizure meds, and I was afraid if I tried again without knowing exactly how much had dissolved or what would come up, if I would overdose or something if I took them again. Or lose my much needed seizure meds… AHHH!! What do I do??!!!! I did what I thought I needed to do. Swallow. Ewwwwwwwwwwww. That was beyond disgusting.

I always hate bomb day, the day I take everything under the sun, but always look forward to the silver linings, and that is Chinese food. For the first time ever, the thought of Chinese food made me sick. Even envisioning the white box with the red Chinese writing made me want to hurl. No Chinese on bomb day.

The second line of treatment hasn’t been a whole lot better. My hands and feet are freezing and purple, my stomach has been in stabbing pain. Although my legs are so numb, I at least know they are still working as I have made a zillion trips to the bathroom. I think I am having a major Candida issue, which might be why I am having stomach pain and bathroom issues. I can also tell when I need to get rid of yeast in my stomach and intestines by foods I crave. I am a chips and dip sort of girl. All I have wanted is candy, soda, ice cream. Things that I never have. I think some intense detox is needed for this upcoming break.

Yesterday I had a complete mental breakdown. I lost it. I bawled my eyes out at work, and up until I finally fell asleep at night, I kept tearing up. I felt so sick. My mind got the best of me. I felt at a complete loss of what to do. Something isn’t right and I know it. What it is, I am not sure. So many people have been sick for so long, much longer than me I realize, but I also have seen people that have made remarkable improvements in far less time that have started even after myself.

It makes me jealous to see these people have lives. Function. I know you can’t compare, every case is unique and it is like comparing apples to oranges, but I wondered if I am on the right path.

I was angry. I was no longer feeling like a warrior. I no longer felt brave, and certainly not very positive. I wanted to give up. Not in general, as I kind of can’t at this point, the point of no return, and I am not a quitter, but wondered if it was best to stop until my appointment in December.

It is hard for someone to really understand this unless they are in the exact spot. There is no black and white with Lyme treatment. I don’t know if the treatment is hitting me so hard, or if the treatment is as well as in general I am backsliding. Like I said, no black and white. I have spoken with someone with a similar treatment, a little less aggressive but very close, and she was also incredibly sick during this. She gave me some hope though, that after it was over she made remarkable improvements.

I have had a lot of advice, and I truly value a lot of opinions from those who know and have been there. I have decided to set these thoughts aside right now. My mind has been all over the place. Ugh.

I suppose everyone is allowed to have a day like this. Just cry. Let it out. I am not like that though. I am positive and hopeful. I am not sure what was going on. Maybe it wasn’t really a mental breakdown. Maybe the bugs were going apeshit and getting the best of me.

Today is the last day of treatment for this round of treatment. Halle friggin lujah. I woke up refreshed mentally (pretty Babesia sweaty too) and to my usual self, and although I haven’t really thought of a game plan (I see Dr S tomorrow for an appointment so maybe I will get his thoughts… I really think I might just need a huge cleanse at the moment, and I will go from there), I have done better today than I have been. Spacey, raccoon eyed.. Miss Butterfingers at work, but a pretty big improvement. I at least feel more alive than I have this entire round.

As I said, it is my last day. I have had so many tears from everything being nothing short of hell, but today I can’t help smiling. I pulled through. I lived to tell the tale. All I can hope for is that I have some blue skies coming my way. I could really use it. I think there will be. No, I know there will be. That is the only attitude you can really have, believing so hard that your dreams come true.

October Part 3 – It’s Time

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Once again, I haven’t written in awhile. For the most part, I have still been sleeping my life away. I think I am still really in recovery mode from having mono. My swollen glands have calmed down quite a bit, but the exhaustion from it has been pretty overwhelming and I have a sore throat that just won’t seem to go away. Unfortunately, this all has caused me to really slack on working on treating POTS, so the dizziness, lightheadedness and weakness trying to stand a lot has been much worse.

My recumbent bicycle is right next to me in my living room while I am laying on the couch, yet there is no oomph to be able to get on it. I have only been able to do a whole 10 minutes on it the past week. I hate looking at it at the moment, knowing I can’t seem to get on it at least for a few minutes each day.

My symptoms have been coming back pretty full force. I have been really light sensitive, depersonalized, have numb jello legs, and foggy. At night, my Bartonella feet hurt so bad it is nearly impossible to try to get myself from the couch to the bed. I try to walk on my tippy toes and that seems to help.  I have really been trying to push through it all the best I can. I think that I must be having a Bart flair, but the same old Babesia symptoms : chest pain, air hunger, hot flashes, all seem to be coming back. Blah.

I did have a very happy moment since I have last written. I will tell you, Rite Aid is my nemesis. I can’t handle the lighting whatsoever or navigating thru the store. Since I have gotten sick, either Dave or my friend Amelia have been my Rite Aid shoppers for me. This time, I didn’t have anyone to help me, so I decided to try to tackle it on my own. I needed to get some last minute costume things for the Halloween party we go to every year, and pick up tampons. My last “visitor” was in February and made a comeback. It was kind of a “what the hell is happening to me?!” moment. Oh yeah. Wait. This is normal. Haha. I didn’t miss it, that’s for sure.

I was convinced to at least try to go in there and do my shopping. I wore my sunglasses in the store which I kind of get embarrassed about and got just about everything I needed! Success!

I got a few looks, I ticked and swayed in line, and stuttered to the cashier. I felt so lightheaded by the time I left that I had to in my car for awhile. I was shaking and couldn’t feel my legs before going home. I was completely toast when I got home, but I did it!!!

Even though there is a lot of bad going on, I know that there is progress happening. I was so psyched that I could do this on my own, even if my body hated me. I wouldn’t be able to do that even a few months ago. I wouldn’t consider it blue skies necessarily but to be able to do something certainly made me feel a lot more independent. A lesson for all, don’t ever give up. As hard as things may get, things will get better. Little by little. Have hope.

The day before the Halloween party that Dave and I go to every year, I ended up leaving work as soon as humanly possible. It was one of those days I had to skip any sort of errands and go right home.  My body was jerking on the couch, I was freezing, my vision was completely blurred, foggy, and I couldn’t stop going to the bathroom. TMI. Whatever, Get over it.

I know I wasn’t having any sort of seizure with my jerking. My neurologist has told me that the proper term for this is myoclonus. While I was having this fun Lymie afternoon, I kept tearing up and doing my best not to cry. Still having moments like this is, losing control of your body, is so discouraging, especially when you have something you are really looking forward to coming up.

On Saturday, there was some alignment of the stars, or however that saying goes. I did alright at the party. Much much better than I was anticipating. It was really what I needed after just one day before. Maybe it was the few hours of sleep beforehand.  I tried to stay out of the room with the DJ, as it was pretty loud. Overstimulation is a pretty big fear of mine, as well as lighting as you know. I sat a lot, or made sure there was something I could lean on so I didn’t have to try to stand upright. I had a few odd aura moments that I have before shit hits the fan. Luckily, they went away pretty quickly and nothing ended up happening. This can get really messy sometimes.

I was so glad to be out and see some familiar faces and catch up. I really miss going out. Visibly, other than having to lean and walked a bit like I sharted…. you probably wouldn’t know I was sick at all. I got a lot of compliments, and people did notice an improvement from the past two years. Just a year ago, I remember a friend helping me get up to get our award for best couple. By the way, we won best couple again.. 8th year running. 🙂 And I was able to walk up there with Dave on my own. 🙂

I have to wonder though, when I have little bits of better moments, more invisible moments, about the impressions of others about one facing an “invisible illness”. Maybe I look like a big ol’ faker in other’s eyes. I can’t care too much about this kind of stuff though. If you search my post titled, “Invisible Illness”, you can read more about my thoughts and experiences of being on both sides of the spectrum.

At least yesterday I didn’t have to work. It is one of those things as many of you know, if you try to go out and do something you pay dearly for it. I think I set off my heart device upon waking in the morning. It felt like it was racing a zillion miles per hour, and the box for it lit up. Hmm.. the regular cardiologist really hasn’t been in any communication.. okay any communication with me once I gave them my drug test results. LOL. Oh well. That’s okay. I am really happy with the electrophysologist. It will be music to my ears when they think it is time to have my heart device removed.

It is kind of like a “stuck” chapter in this journey that I would like to leave behind me. We know what the issue is and I finally got a diagnosis (POTS). I can feel the implant in my chest, it is about the size of a small piece of gum, but sometimes If I am laying on my stomach it hurts and is uncomfortable.

Dave and I went out to breakfast, I did one aisle of the grocery store while he did the rest and I could go out to the car and wait, managed to do some laundry folding and clean up the kitchen a bit. We went to our friend’s house to watch the football game, and I fell asleep. I wasn’t much company. Oh well. As soon as I got home I fell right back asleep.

Today was a really spacey day. There really wasn’t a lot I had to do in the office, yet it took twice as long for everything to get done. I found myself Facebook stalking, looking at trading my car in and downgrading it, just to save $50 a month.. to help pay for my health insurance cost increase to start in the new year. I am not sure why, but I have been really nauseated. I haven’t been on antibiotics for awhile now. No idea.

I had to go to the bank to deposit Dave’s paycheck, and was going to be naughty and swing in to the bakery next door, to get a gluten free brownie and a cupcake for Dave and had one of those Lyme rage moments inside me, (don’t mess with my food lol, only kiddin’), a huge pet peeve of mine is people in line trying to make friends with the cashier. Chit chatting about their damn life story, when there is other people in line waiting. At least I didn’t yell at the lady or I would have looked like a fatty.. needing my brownie ASAP.

I could feel myself getting hot, sweating profusely, and dizzy. And so I left. Sorry, you lost a sale. And I am brownie-less. That would be what I would call a lose-lose. I really wanted that brownie. I just know when to say when.

I have been pondering a lot about starting treatment again this week. I could wait until next week, but I think I need to go back on it. My body is telling me I need to be. I might have to go back on my older protocol.. I feel like it is cheating a bit, but I was after all told to do one or two more rounds of that particular protocol before starting my current one. Not by choice, I am trying to get by with the costs of these medications before my phone conference. Decisions decisions. Or an improvised protocol. I am going to have to do it. Although I have had some really good moments, I know overall I am crashing. I am just really good at hiding it now.

So, although I have had some hard times during this break, I have definitely had some great ones. Even something like going to Rite Aid is a huge accomplishment for me, and being able to go to the annual Halloween party and do well at least give me something to hold onto. I am going to go the optimistic route that going back on treatment will be really beneficial to me. I just might not be in the right place to be able to have a longer break…yet.

Happy Monday! Oh yeah.. almost forgot! Ronald McDonald and the Hamburglar. 😉
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