September 7th 2012- 4 Years

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

 

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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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.

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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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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.

September Part 1 – Underestimating the Dark Side

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Over the weekend I had one more day to try to enjoy myself before I started treatment back up. We got an invite to a BBQ, so that was the plan. I was off to a rough start, but was determined to have a good time! That morning I had almost fallen in the shower but caught myself, pulling out my lower back. While I was at work, my Dad kept telling me he couldn’t understand what I was saying, and I completely walked into a wall. As soon as I got home from work I laid on the couch and relaxed so I could have the best time possible.

I did have a good time No one noticed the subtleness of myself going to sit somewhere. Standing in one place is still really hard for me. To be fair, I know with the past few days, I had been overdoing it a bit since I did have some moments of blue skies. That is probably the reason why I was the way I was that morning.

When you can’t do anything most of the time it is so hard to not overdo it. You just get so excited over these little things, whether it is going to the grocery store, or doing some cleaning. I want to do it all! We didn’t stay very late, and as soon as I got home I went straight to bed. I wanted to be in tip top shape for treatment the following day!

Monday. Treatment day one.  Here is the thing. Some of my protocol (I never will reveal my full protocols 😉 ) I only have to take at nighttime, so I have this mentality that if I take my protocol at bedtime, I will “sleep it off”.  Well Kimmiecakes, that sure is some wishful thinking. I completely underestimated this protocol.
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BUT:
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🙂

I honestly don’t know why my mind went to Star Wars writing today. Maybe I subconsciously want to watch a marathon on TV. Or maybe Yoda and I have been speaking the same language lately. Either way.

The first day of treatment really wasn’t so bad. I have dealt with far worse. One of my antibiotics, Septra DS (Bactrim), makes me dry out like a raisin. Everything tastes disgusting, and I find myself continuously blinking because my eyes get so dry it makes me feel like I am looking through translucent glass. I was able to make a decent sized dinner for a few nights, and even used my bike for 20 minutes. Day one was about the best of it.

Tuesday everything really kicked in. There was no “sleeping off” my nighttime medication. I was so weak and lightheaded, hot, and was one of those days I found myself sitting on the toilet and puking in a trash can. Fortunately, which rarely happens, I actually did feel some relief after I got sick. Nausea is awful. Throwing up without any nausea relief is the worst.

I decided it was best I skip my biofilm regimen for the evening. Do I take some cheap stuff and risk barfing my expensive pills? Or do I just try to attempt to keep my expensive pills down. Sorry, I am a rule breaker. But sometimes you just have to make decisions.

That evening, I fell asleep right around my usual early evening nap time. Dave said he had tried to wake me for hours, he even went to massage therapy and back and I didn’t budge. He was already long in bed when I got up around 12:30 in the morning. I took all my pills, and transferred myself to bed.

I was up fairly early on Wednesday, maybe because I had slept nearly 15 hours. I was still nauseated, and felt like I was floating. My chest hurt. My mother-in-law was coming over after she got out of work, so you know what that meant. Clean. Don’t show her that your house is a dump. After about 5 minutes of work I wanted to curl up into a ball. The cleaning was needed anyway, as long as things look okay from afar. LOL She brought over dinner which was a big help. I actually made it until 6:00 before I fell asleep.

Oh my gosh it was a long night to say the least. I stayed up a little after my nap, watching some old reruns. I have been on a “Friends” binge lately. I was so tired, but  I couldn’t fall asleep even with my klonopins, I was tossing and turning, I felt like an inferno, completely on fire and trying not to puke.  I went to the couch because I didn’t want to wake Dave up.

Today is Flagyl day one. I avoided my gagging before even taking my metallic pill by not even going into the kitchen, and brushed my teeth right before I took it, to avoid its nasty flavor it leaves in your mouth. It was one of those mornings that I really should have washed my hair, it was drenched, as well as my pajama shirt, but I knew it wasn’t worth it. Even something like a good shower can take a lot out of you. I would rather make it count when I do.

I decided to to do my blood work this morning instead of tomorrow… the official “bomb day”. My thoughts were that if I feel so lousy now, how am I going to do if I have to take EVERYTHING. The sitting and waiting. The lighting. A day early probably won’t change anything. At least I had a familiar face draw my blood, no multiple stab wounds, and I didn’t have to wait long before I was called in. The hand raising began in the waiting room, and I am pretty sure I frightened the little old lady next to me.

I then headed to work. I did some crediting on the computer and had good intentions of a lot of other dub work I keep meaning to do, but gave up on that pretty quickly. I felt high, foggy, nauseated. My body ached like I have the flu.

I went and picked up a quick dinner on my way home and get a prescription refilled. I was rocking back and forth leaning on the wall for dear life at the pharmacy, and when she asked me what I needed, I exclaimed, “BAH AH BAH BAH BAH…… Omnicef”.  Haha. My brain is fried.

I went to the hospital on my way home since they are pretty quick about getting my blood work done as long as it isn’t a specialty test that needs to be sent to another laboratory. You would have laughed at my parking job. I am either Lyme brained or a woman driver. Oy. I was not only taking up one parking spot, nor two. Three.

I was pretty shocked to see my sodium levels were right at the low level, when I take my medication to raise them, and was told to eat a salty diet! What the heck? My kidneys seem to still be okay which is exciting. I was afraid that this regimen could potentially cause issues. My lymph % is low. This means that your body is low on infection resistance. But aha! One of the “fixes” is antibiotics. Well I’ll be damned! My Neut% is high. It can mean several things. Two being bacterial infections and medications. Yeah. So that would be my guess.

I finally got my hands on a thermometer, since I misplaced mine (I will just blame it on Dave, it is easier that way), and over the course of the day 101.5, 101.7. No wonder why I feel yucky! I wondered what my temperature was last night when I was completely miserable. Or the day before when it was 90 degrees out yet I was in full pajamas and cuddled under two comforters.  At least I know with a fever, my body is fighting, and it is killing bugs.

Dave’s Mom brought over Chinese food, which is a few days early for our Chinese food bomb day dinner, but I kept it going with a box of crab rangoons to add to our leftovers and I made a salad so I wouldn’t feel like such a piggy and at least eat something good for me. It didn’t help at all with the nausea. Boo.

My goal of the night was to make sure Dave woke me up after napping and to do 10 minutes on the bike. No matter how I felt. I can feel my feet and they are freezing, so I know the blood is pooling a bit again. My toes are a little on the bluish side. I ended up doing 15 minutes. A rockstar, I know.

There is only one more day of treatment this week. This is about the opposite of fun. But you have to do what you have to do. A bit of suffering now to get my life back is worth it. If only time flew by on weeks like this, instead of feel like it stands still. It will always be worth it.

July Part 7 – The End of an Era

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After my last post as you know, I had good intentions of cleaning and cooking a nice dinner. Well, I lied. I ended up passing right out after I hit the “post” button and was asleep for the rest of the afternoon.

Dave finally woke me up a little after 5:00 and told me the dishes were done, he switched the laundry over for me, AND cooked dinner. Gold star to him! I am either a lucky girl or he is sick of always running out of clean underwear. Either way.

Monday was my second day of treatment. Holy herx! I can’t remember if I took a shower or not, and I definitely didn’t wash my hair. I suppose that really isn’t anything new though..

I decided to get my routine blood work done to get it out of the way. I was completely bummed out, the woman who always has awesome luck getting a blood draw from me with just one prick was working her last day before she will start another job at a doctor’s office. I will be looking forward to the future multiple jabs and wiggling of the needle in my arm. Ick.

At least everyone knows I am a pain in the ass so they take caution, use a butterfly needle, and really try to look for a good vein. This was a huge benefit of having my Powerline, I never had to deal with needles, the nurses could just draw what they needed from the line.

Walking back out to my car, I had to laugh at myself. There was a very old lady, like ancient old, using her walker, and she passed me in the parking lot. Wow, it was definitely one of those days I was walking at the speed of molasses. Some days are much better than others. This just wasn’t one of those days.

I then headed off to the post office for work. I realized when I was on the road, that I not only forgot to take my blood pressure medication, I most importantly forgot to take two of my seizure medications. Oy.

At the post office, my feet were blue and purple (guess I really do need that blood pressure medication!) standing there waiting for a package to be scanned. I was so dizzy, and felt like my heart was pounding out of my chest. I hit my heart monitor button and in the car checked my blood pressure. Sure enough, it was 80/65, so connecting the dots, I am positive my blood pressure dropped very quickly causing the issues.

It kind of seems Captain Obvious to me, but then again, I am not a doctor. I feel like anyone that has been dealing with a chronic illness for a long time that does their research and through their experience should be handed some sort of medical degree though! It seems like I know a hell of a lot more than a lot of doctors.

Sometimes I get lucky, instead of big egos, the doctors are interested to learn something new. My GP, who was a dinkus and called to tell me they wanted the drug test results too, saw my feet and how the skin was peeling away and my toes had some little blisters on them, had no idea what it was, and I explained to him about ACA (the herx rash), and he wrote it down to do a little research on it. That is something, right?

I just sent in my full download of the event, so I will have to reiterate that I forgot my Midodrine. I was having a brain fart and forgot to tell the woman that key part. Haha. The other day I had another episode, with my medication taken, with the same exact symptoms.

I am not really sure why their only response to my LLMD’s thoughts and prescribing my medication are that, “It certainly could be POTS, but that is really hard to treat.” Oh wait. It was because I was a drug addict. Haha. I am really hoping the electrophysiologist will actually listen and be able to further help me with this issue.

By the time I got all these things done.. okay that is really not a lot of tasks, I was fried. The bossman called me and asked how I was, and the only word I could think of was “wonky”. He laughed, as I guess that is kind of a weird description. But I was just that. “Wonky”. I told him about forgetting some of my medications, and he told me to go just go home.

I just couldn’t do that, as I had stuff to do, so I tried to get as much done as possible. My Mom came stopped into the office, and also told me to finish up and go home. I did a lot the few days before, fortunately. I wasn’t there for more than two hours, and I told her I still had errands to run. I was instructed to go home and take my medications before I did anything. Home it is.

I never really know how I look on my bad days, well I do sometimes, especially when I was ticking terribly, but I was assuming it was obvious I was “off” that day. I was told it certainly looked like I needed help.

It was a long drive home. I took my medications and laid down for awhile. I felt a little bit better, then decided to tackle my errands. As soon as I got to the parking lot, I had to sit there with my head down for several minutes. I needed the gusto to get up and finish out my day. I survived, and headed straight home.

After laying down for an hour or two, I was able to clean up my bathroom a bit, and cooked dinner. I was fighting taking a nap really hard, but I already left work early, so I kind of felt like a useless turd. I know I can’t help it and it is just something I have to cope with for the time being.

I crashed right after dinner, and slept until after 9:00. Dave kept trying to wake me so I wouldn’t be up all night with no success. I would just groan and mumble at him, roll over, and fall right back asleep.

I paid for it as I was up all hours of the night, but that nap sure did feel good.

Tuesday is my massage day. My circulation was really off, and I had the classic Bartonella feet. Tightened right up. As I had mentioned, I had another heart event. My blood pressure dropped significantly again, even taking my medication, and up went my heart rate.

Although it wasn’t as rough of a day physically as it had been, I was having an emotional day. I was pretty drained. I was pissed off at the world, every little thing annoyed me, and I spent most of the day in tears. I wasn’t so much having a pity party day, I just noticed things that are bothering me, such as my recent notes from the office (I swear they aren’t even mine?), hurt feelings, pet peeves that everyone has of their spouse, money and the fact I have none, worrying about prescriptions, several appointments I have next month.. anything came to my mind.

That night was certainly a fun one. At about 4:00 in the morning, I woke up to a puddle of pee. Yes, I am that 28 year old that wet the bed. This has happened a few times throughout treatment, but I never made it past the pajama bottoms before getting to the bathroom. Nope. Not this time.

Seriously? I woke Dave up since I didn’t have my glasses on and asked him how bad it was, and he looked at me and chuckled. “Were you swimming in your dream or did you just decide you had to tinkle?” Hahaha. I can only laugh.

I have no idea what happened. I only had a sip of water before bed for my meds, and definitely went to bed with an empty bladder. I use to have issues controlling my bowels prior to treatment, and have had this issue a few times on IVs before. Maybe it is just a muscle or nerve sort of thing. Like I said, I have no idea.

What was worse, it that Dave came trotting into the bedroom with the “dog kit”. The dog kit is a spray bottle of Lysol, paper towels, and a plastic grocery bag. Our kit for dog pukeys and Cooper tinkles. Both of the dogs were looking at me like “I didn’t do it” and that would be correct. I needed the dog kit.

You may ask why we didn’t change the sheets. I asked Dave and he was like it is 4:00 in the morning. I could barely stand as it was, so he gave it a few sprays and wiped the spot with paper towels, I changed my bottoms, climbed back into bed and fell right asleep. Whatev. Screw it.

We could have always done this instead:
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We joked the next day that I might just need those diapers advertised on TV with the annoying women twisting around dancing. Tanna? I don’t know. Everytime that commercial comes on, Dave ALWAYS tells me how much he hates them all. Maybe I could be one of them?

My blood work came in the following morning. A lot of tests were on the fence. If there was a range of 0-1.0, mine would be a 1.0. Sometimes in some strange way I wish it was higher or lower, even if just a teensy bit. There was some things to look out for as I am use to, potassium, and sodium both being on the low side. My kidney, red blood cells, and width were exactly on the dot for the high range. My haptoglobin was normal this time however! I am thinking it is because my liver and spleen are no longer enlarged. I’ll take it!

It was another emotional day. A really emotional day. Treatment was taking its toll on me, and I was really stressed out. It wasn’t my favorite thing pissing the bed the night before to begin with, knowing I would have to clean and change the bed, and wash the comforter, which is a daunting task for me. I was still feeling down from the other day, and what set it off was searching for a medication I will need for my next round of treatment.

I felt so sick. I was rocking back and forth in my office chair to my heartbeat, and I could not stop crying. I just needed a breather from this all. Chronic illness, especially such a controversial disease is such a bitch. And that is just what my family and Dave are giving me.

My parents decided they would watch the little monsters for me, and Dave and I are going to have a little getaway to my favorite place on earth. The ocean. I think it is finally showing that I am slowly breaking. I am still hopeful and trying positive, but things are really getting to me at the moment. I needed this more than anything. I am very grateful.

Realistically, I won’t be able to walk the full 5 1/2 miles of the beach like I once did when I first finished up IVs and was making great progress and doing so much better than I am now. Right before I slid right backward. That is okay though. I will walk the beach as much as I can, look for sand dollars, and just sit and breathe the ocean air. This makes me really happy.

Today is my week two bomb day. Along with my umpteen other antibiotics, tinctures, and antimalarials, the second week of treatment I am given the option. Diflucan or Flagyl. I took the pussy way out and went for the Diflucan. I still feel yucky, maybe not as much as if I went with the devil’s drug. I have been really exhausted, foggy, dizzy, and my legs feel like jello. I am looking forward to my evening nap.

I keep losing my train of thought and was stuttery talking on the phone. I ran into my Uncle at the bank to put some money in my medical account, and he was chit chatting away with me. I eventually had to tell him I needed to go, even though I sounded rude I am assuming, but I began to feel a wave come over me, and I knew my time was coming that I would collapse if I kept standing there. Sorry Uncle, we will catch up next time.

I am home, relaxing. Although it is another bomb day, we still won’t be getting Chinese food to save a few bucks. The ocean trip is a huge treat, and any way to save is totally worth it. Greasy, non gluten free breaded popcorn shrimp it is. It isn’t egg rolls but it will have to do. This will be the very last time I will be doing this gosh darn protocol. It has been a very long time. It is the end of an era, and I am ready to start something new. So unbelievably ready.

Wish me luck!

P.S.
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It is my two year anniversary of getting my Powerline placed. It seems like it wasn’t that long ago. I was excited and so full of hope, as you can see in the picture. And the IVs did completely begin to change things around for me. Although they were such a pain in the butt, between being hooked up for daily infusions, sometimes for 5+ hours a day, having an even harder time with bathing, the skin issues and all, I do kind of miss them. I miss the progress I made. I miss the lactated ringers for detox. I really miss those ringers.

Would I do it all again? I am not really sure. All I know is even when time seems to have stood still, it really hasn’t. Coming right around the corner will be year three of my treatment. Yikes.