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 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

March Part 2 – Coming to a Fresh Start

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I left off my last entry with the big decision I have made to leave my LLMD. I lied.. it took a few days to get up the guts to call and cancel my appointment, but once I did, I felt pretty good. I don’t really know what is going to happen, all I can do is hope for the best and that I made the right choice. I think I am, and I am going to keep positive about my fresh start.

Once again, there has been some better days, but unfortunately my bad days were pretty bad. First thing in the morning, I have been able to run a few errands, and I have been trying to be crafty with our new vegan and gluten free diet. This week will be our third week? Dave seems to have more energy, as he cut out sugar entirely as well (I never really ate sugar or gluten anyway).

TMI, I have noticed my ahem.. movements have actually been entirely more normal. Maybe it is the break from my antibiotic regiment, but I am going to bet the diet change has made a huge difference. We will eventually slowly add foods back to our diet. At this point, the diet really hasn’t bothered me much. There is a lot more options available than I originally thought.

I even made it out for dinner and a cocktail with our friends. It was nice to get out. Dave and I have been hermits lately, staying home on the weekends, so it was definitely a treat, and I did really well even though it was somewhat loud in there. Maybe the dark lighting offset it, and I had a place to sit away from where it was busy.

During my bad days, I have found myself completely exhausted, hot cold hot cold, excessively sweating, and having my classic POTS symptoms. There has been a few skipped showers and hair washings, and very long naps. At night, I seem to be having a lot more tics, and stuttering to try to get any sort of a sentence out.

My worst day, that I will likely blame on myself as I was a little late in taking my seizure medication, I had to leave work once I remembered I forgot my meds. I wasn’t at work for very long, so it was one short day. I drove straight home and took my meds and relaxed for awhile waiting for them to “sink in”. I had a few things to do: pick up a few items at the grocery store, the bank, Dr S’s office to pick up a referral and pee test for my poor liver function, and swing my the neurologist’s office on my way home to give them the referral and set up an appointment.

It was a very long drive to Dr S’s even though it is less than 10 minutes away. I was really foggy and began to have that “aura”. For those who have seizures, you know what I am talking about. That feeling inside that shit is going to hit the fan.

The girl who works at the desk gave me everything I needed, and I asked her to sit down. I began to feel myself rock back and forth and I had the shakes. I felt like an inferno. I knew it was coming, and I said to her, “DO NOT CALL 911. THEY WILL NOT HELP ME.” Well, that is the truth. They wouldn’t and haven’t. And then, the shit hit the fan, like I knew was going to happen.

Dr S was there in the waiting room, even though I have no recollection as to what happened, and he later emailed me and wrote, “If it is my choice, then I say you shouldn’t do that again anywhere….ever”. I then asked him if it was actually a seizure or my body just going nuts. I have no idea what I was doing, but I was assuming since my body was beginning to lose control, that it at least wasn’t the most awesome thing to watch.

He then wrote that it was hard to differentiate for him as he is a naturopath, not a neurologist, but sat next to me and he watched me for awhile. He told me he would call it a seizure if I wasn’t tuned in and my body was going nuts. Well then. I would at least certainly call it very much “seizure activity”.

Once I came to, feeling wiped out and had a back of the head headache, had a drink of water and sat there for awhile. I was kind of scared that he saw that, as I didn’t want to get dumped once again by another doctor, or get told to stay with my LLMD that I just canceled on. AHHH. He didn’t though, so I was happy. Maybe it is because I now have have an appointment with the neurologist again, so there is another member to my team once again.

He came back out after I had sat for awhile, and told me I could stay as long as I wanted to, and I told him, “I have stuff to do, mind over matter!”, and off I went. I skipped the store, but swung my the neurologist’s office on my way home. I figured if I was going to be the way I was, what better place to be than a neurologist’s office? Right?

As soon as I walked in, I got a big “I remember you!” from the lady at the front desk and the nurse. Haha. I am quite famous wherever I go, apparently. I have an appointment next month, which is earlier than I expected as there is usually a big wait as he is only at my local hospital once a week, and they put me on the top of the list if there was any cancelations.

Once I got home, I had to make the embarrassing phone call, and wasn’t sure when it happened, but noticed I had wet myself. I am assuming it was during my episode. A) I had been to the neurologist office with tinkle in my pants. B) I did the right yet totally embarrassing thing and called Dr S’s, to let them know I might have pissed their cushion. I didn’t want to be an asshole and have someone sit in it. Oy vey. I was told no worries, but that really isn’t a call anyone wants to make.

It has been a few days and I am still recovering from whatever the heck happened. I am so exhausted and my body is really weak.

I have put a lot of thought into it, and I am going to do one more round of Dr J’s protocol. I was debating on taking the rest of this month off of treatment, I am not sure if that is what I need though. I might need to be on treatment earlier. Maybe wait it out? This can all be really confusing. Decisions, decisions.

Wishing you all a good Sunday!

Once again, P.S. Miss Olive and the “gang”. This is the first time I have gotten all these meatheads in one picture together. A whole bunch of cuteness right there. 🙂
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March Part 1 – Big Decisions

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Once again, I apologize, I have been slacking on updating you all. I have some negative news, some very positive news, and I have made a very big decision about my future course of treatment.
Where I left off, for those who do not follow me, (you should, because I am awesome), I started my “bomb day” in the morning, and then heading off to biomagnetic therapy in the early afternoon.
When it was time to leave for my appointment, I was in a little ball on the couch, and having my Dad help make sure I got into his truck. I still need rides going to any place that is past my 15 minute radius, which really stinks as I hate relying on other people. Ugh.
Back on topic… I could barely keep my eyes open, and all I could see was black purple and blue squiggly lines. I had a barf bag in hand…it was not a pretty afternoon.
Most people would probably be terrified on these days, but I am so used to them that it doesn’t even phase me. This too shall pass? I don’t know.

 It is what it is.
The biomagnetic therapy seemed to help. I felt a lot better after my session, and was even able to pick up take out for dinner on my way home.
I had a “blue sky” day on my first day of Coartem. I started the day off by going out to breakfast with Dave’s family. It was really loud and busy in there, so my head got jumbled up and I get very “fuzzy”, but I was fine. I then went with Dave to two stores on our way home. That is pretty miraculous for me. AND THEN!!!, I got a decent amount of cleaning done when I got home. This was a very good day for me.
Of course, there seems to always be a punishment for having any sort of a better day. I have fallen once (luckily not a bad one), I have had a lot of foggy days.
My first, someone said, “good morning” to me, and instead of saying it back I replied, “good night!” To be fair, it was a Monday. I have definitely been out of focus. Needless to say, I haven’t gotten a whole lot done at work. Sorry boss if you are reading this…
At night, and throughout the past week or so, I have had some tics. These aren’t quite as bad, I guess I would describe it as cringing, and I had a few good yells at night.
I have taken a few evening naps, but I still seem to be doing really well on staying on a “normal” schedule. I think trying to get out there and do things is completely exhausting and overwhelming on my body.
That is okay though, I still have a very rewarding and accomplished feeling pushing though and doing what once seemed completely impossible and off the table for anything I would ever be able to do again.

 

I had another blue sky day since I last wrote! Two blue sky days. Wow. I made two quick trips to the grocery store, a coffee stop, went to the bank and pharmacy, swept vacuumed, did some some dishes, cleaned the tub and washed some of our wall trim.. all while dealing with the neediest high maintenance brat puppy ever. Seriously. Wow.
Afterward, my legs felt like complete jello, and everything to me seemed dark, so I knew it was time to rest. I really wanted to use my recumbent bike that evening, but that was a nap day, and I really did a lot. I didn’t feel all that guilty for taking the rest of the evening off.
I don’t know if it is my treatment, methylcobalin shots again, or my new biomagnetic therapy but something is starting to work.

 

This truly shows having this disease.. well any chronic illness, you can have significant improvements in a day, then completely fall apart. I just hold onto those good moments, keep positive more will come, and you need to just live day by day. It will make you crazy thinking of the future.

 

Dave and I are trying a new diet plan. We have actually been eating vegan. I thought Dave wouldn’t make it a week, but he has been so good, I am really proud of him. I think having a partner in trying a new diet, workout, or anything of the sort helps. It makes you more accountable.

 

I have lost 6 pounds (losing weight wasn’t the goal but I am not hurt by this at all 😉 ). I am way less bloaty, and I no longer have horrific stabbing stomach pains.
I still haven’t mastered the art of tofu, haha. I am realizing that there are so many options for meals. Our favorite is a meal is almost like spaghetti, only it is filled with veggies, you don’t even need more miss pasta, so it is a lot healthier and lighter.

 

Now the big decision. I have decided that I am no longer going to go to my LLMD in DC. This was a huge and hard decision for me. My mind was all over the place, and a big part of it was a mental thing that I would be leaving “THE” Lyme doctor. If that makes sense.

 

I haven’t taken this decision lightly, but a piece of me knows that the clinic has done everything they can for me. I have not been happy and very frusterated for a long time for a number of reasons that I will not get into. I do not want to and will not bash them in any way, I really did need them very badly when I was at my worst. It was life changing for me during that point in time.

 

I do owe them so much, as I am no longer in the place I was at, basically completely useless, needing Dave to push me around in a wheelchair, bathe me… the list goes on. I have so much appreciation and gratitude towards them.

 

With that being said, I have altered some protocols on my own, lessening them as needed, and I just have a negative frame of mind now, and I have a positive outlook and better vibes with my local naturopath that has helped me along the way throughout so far, a 3 ½ year journey.
As of right now, it has been nearly two years without significant changes. I have had a few blue sky days, but it really isn’t determined what it is from. My tweaked protocols, the biomagnetic therapy? My immune system working better? There are so many factors.

 

I will tell you, with and having Lyme, I see so many people give up very quickly with doctors when they do not see immediate results. With this illness, all I can say is patience is a virtue. You need to have faith in your doctor and give it time. Do not give up. Give your doctor a chance. This is not a sprint, it is a long frickin marathon.

 

For me unfortunately, after this amount of time (YEARS), I think it is just time to move on. Something is still missing, I am sure of it, and I like I mentioned, I personally believe I have gotten all I can out of the clinic.

 

I am not giving up, folks I promise you, but as Einstein once said said, “Insanity is doing the same thing over and over again and expecting different results.”

 

My recent appointment with Dr S got me feeling more positive, and honestly I think it will be a trial and error for my treatment, which is okay. I really think he will find the right combination that will work for me.

 

He truly listens and takes his time, putting great thought into what he thinks will be best. I am not shy around him, and he doesn’t beat around the bush with telling me the truth. I am also optimistic about my biomagnetic therapy treatments.
His concern as of right now, looking at several of my blood work papers, he wants to figure out what my liver is doing wrong. It is functioning poorly.
A test suggested is a urine test that tells you about nutrients, liver function, energy production, brain chemistry, and gut infections. On point, Dr S, let’s get this all figured out.

 

This is still a scary moment for me, I will not lie. I still have not picked up the phone to cancel my appointment. I need to, and I think that phone call will be today.
This is a big step, I need to do this for me, I need to be brave, and transition to what may be completely life altering for the better (I am hoping for some level of remission for me), or for the worst.

 

I really truly believe this is the right path for me. Say a prayer, wish me luck. I am officially starting a brand new path on my road to recovery.

And of course, you get a picture of Miss Olive, snuggling with her Mumma.  🙂 12801672_10153493275242404_4837392389664443509_n

February Part 3 – Blue Skies Ahead?

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It has once again been awhile since I last gave an update. I left off on the morning of my “bomb day”, which is the day that I take a boatload of antibiotics, including my favorite, Flagyl. I was fading fast when I posted, and it only got worse after that.

I had to go home and let the doggies out before my second biomagnetic therapy session that day, and I arrived to my parents a little too early to have my Dad take me since I cannot drive that far still. I had completely fallen apart. I was curled up in a little ball on the couch, could barely keep my eyes open, but when I closed them all I could see were purple and blue squiggly lines. I was completely nauseated and my body was toast. I couldn’t feel my feet and my legs were tingly. My arms weighed about a thousand pounds.

My Dad made sure I got to his truck, and I had a barf bag in hand. It was a super long drive, even though it is probably a half an hour. My therapist had left off from my last appointment still testing areas that need to be aligned. She finally got through all the points and we got into treatment. The very first session, I had a terrible headache for the rest of the day, and this time, I felt SOOOO much better when I was done.

I don’t know if it was because I got to lay down and it is very relaxing, or if there is truly something to biomagnetic therapy. I would like to think very much that it is working in some shape or form, and I am still being optimistic about it. Not feeling like complete death the way home, and being able to pick up Chinese food (it was bomb day after all) on my own was certainly a huge improvement from just a few hours before. I will take it. Unfortunately, she is away on vacation, but I am definitely planning on going again. It doesn’t hurt anything, right?

Once I was done my first week of treatment (perhaps also from my biomagnetic therapy??!), I woke up in the morning with a large Bartonella streak on my chest, sort of near my armpit, and the veins in my chest were popping out. It was bizarre as I have only had little itty bitty streaks in the past. Something in my body is getting stirred up, seeing is believing without a doubt. My week two protocol does focus on Babesia, but we also have a couple Bartonella drugs in the mix, so I knew I would still be tackling it.

I had a hard time the following few days off treatment, feeling very dizzy and exhausted. My POTS symptoms have been bothering me in the morning, and I am questioning if I am having a bit of a mycoplasma flare up. Coughing, chest pressure.. just not my usual Lymie self. At this point I don’t even contact doctors about this kind of thing anymore, because I am generally right. The blood work takes several days, and it will always come out positive. I knew one of the antibiotics I would be on was minocycline, which is what I would be put on anyway, so I wasn’t too worried about it.

My second week started out really well. My suspicions were correct, the artimisinin is what was making me crazy nauseas the previous round. I only started to get nauseated the day before and the last day of my treatment. I combated it with detox juices with extra extra ginger. My last two days I was also ticking more, foggier, and ended up taking a few naps. I definitely handled it much better regardless, I even used my recumbent bike for a few days, I even did 20 minutes one evening! That is pretty awesome.

Off topic, kind of? I found a quote I really liked and was fitting at that exact time, and maybe it will help some of you who are feeling down. “Everyday might not be good, but there is good in every day.” I would have to completely agree. No matter what your situation is, there is always silver linings, you just need to find them.

I finished my work’s taxes with the help of my Mom, and it actually went smoothly. It wasn’t a disaster like the year before, so maybe my brain is coming back a little bit. I even got the compliment that I had done a good job for the year, and I really needed that. I obviously do the best I am able to do, but I feel like it isn’t enough most of the time. For someone who was a workaholic before I got really sick, I sometimes feel a bit like an embarrassment. It was also a booster, as I got extremely frustrated that I ended up having to work on my one day off for the month. Today is my first day off in a long time. I am enjoying it.

Today starts my third week of treatment, a few days of Coartem. This has been the very best experience I have had taking the drug.. ever. From going to sitting like a vegetable from the time Dave left for work the first time I took the drug to the time he got home, with the TV off and staring into nothingness, not once getting up, moving, anything.. to my day today, it really is validating in my mind at least that Babesia is no longer effecting me like it once did.

Dave and I met his family and went out for breakfast, then Dave and I went to two stores. One was a Job Lots.. I don’t know if that is a “New England” thing.. basically it has a little bit of everything, and then we went grocery shopping at a much bigger store than my little store in town that I usually have to stop and go sit in the car. Not only that, but I managed to do some cleaning when I got home. I was on a roll. Dusting, vacuuming, cleaning the bathroom, laundry. On my first day of Coartem. Yay!

All in all, I feel like even though there was some cruddy and completely non functional days, I really had a few much better ones. I am hoping the next few days of Coartem are easy peasy, in my mind I think they will be, maybe fluish toward the end and I will have my best break yet.

Blue skies ahead? I am really keeping positive there will be, as soon to come, I have a huge decision to make. One that could completely change everything. What is it you may ask? You will have to follow me, and you will know soon enough. 🙂

Happy Sunday everyone. Wishing you all a moment of blue skies today, if not, don’t forget to look for those those silver linings.

PS Of course I figured I would share a couple Olive pictures. Cutie patootie.