September 7th 2012- 4 Years

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

 

August Part 1 – Busy Month

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Let’s get to some information about parasites!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now the awesome!!!

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

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

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

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

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

Annnndddd… Miss Olive says, “hi”!!
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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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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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January Part 1 – New Year, New Start

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I am pretty excited that a new year has begun. Although I have had “a few days” being pretty limited, nearly always ending in tears of discouragement, I have an entirely new protocol to me, the lightest since I have seen my current LLMD, and best of all, I got my heart monitor out after 11 very long months!!

If you have been following me, you know how bad this little stick of gum sized implant in my chest was for me. It beat me down mentally more than any single doctor experience I have ever had. As many of you Lymies know, going to see a doctor isn’t the most pleasant of experiences… most of the time. Here is a recap of last year if you haven’t been following me: https://kimmiecakeskickslyme.wordpress.com/2015/12/31/yet-another-year-of-lyme/

It was a pretty long day. I was hoping it was going to be a quick ordeal, and told them to just numb me and take the sucker out. That is after all, what I had them do to put the linq monitor in. The whole process of getting the monitor placed took about an hour give or take.

As soon as I got there, I was admitted to the hospital as a higher risk patient, instead of having it as an outpatient procedure. Oh poo. This quick procedure that was also estimated to take the same amount of time to get in ended up being a just over 6 hour stay.
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Not going to lie, I was happy to get my non-slip hospital booties.

One of the biggest struggles was to get the anesthesia needle in my arms or hands. There was multiple stabbings. When I say multiple, I mean multiple. Haha. They were amazed that I didn’t even once flinch. I told them, “This ain’t my first rodeo, do what you gotta do!”. After so many attempts by nurses in my room, I was brought into the room for my procedure and there was my electrophysiologist, another surgeon, two anesthesiologists and two more nurses. Yikes!

I kind of felt like a science experiment. On one arm they were using a little red gadget that shows veins, the other I was getting an actual ultrasound. Wiggle wiggle wiggle.. “We have blood! Wait.. no it stopped.” They felt bad for me and injected lidocaine into my arms and hands to try to dull it a bit. I personally think lidocaine injections hurt worse than getting a line put in.

At one point, I told them that this wasn’t working, and to just stick it in my neck or feet. I really don’t know why they didn’t want to go that route. I have had to have a line put in my foot before. Not a big deal. I am covered in tattoos, I can handle a needle. As well as the zillion blood draws I have had in the past few years.

After being a literal pin cushion for about an hour, getting the line in was a success. It was so bad, they actually had to remove a sheet from my bed as there was blood all over it. Oy.

That night when I got home, I saw over 20 big red dots between my arms and my hands, all bruised up. I looked like a junkie that had to idea what the hell they were doing.

Once that was all done, we all got a good laugh. I had one personal request: give me a badass scar. My scar that I had from getting in my implant looked pretty much like a big zit scar. Ew. I told them a big “X”, my husbands initials, a gash.. if he really wanted to be creative he could do a kitty… anything would be better. I am sure that is a pretty odd request, but if I am going to have another war wound to add to the mix, I would rather have it at least look cool. He told me that it was definitely going to leave a bigger mark trying to get the monitor out, so badass scar it is. Way cooler than the zit scar I have had for the past 11 months.

I had to be put on two different sedation drugs as one wasn’t doing a whole heck of a lot. These drugs are used pretty lightly, so you are still awake, but I was fine on the first one, even talking to the anesthesiologist about what I wanted to eat when I was done since I was hungry and hadn’t eaten anything since about 7 in the morning and it was mid afternoon, so we were talking Chinese food. Mmmm… Chinese food.

The meds kicked in and I was ready for my procedure. It didn’t take all that long.. about the same amount of time that it took to put the monitor in. Being a high risk patient, they wanted to put me on an IV antibiotic. Sure! I haven’t been on any IV meds for a very long time, and maybe I would kill some bugs while I was at it. I am allergic to penicillin drugs, and Cipro was a big no-no for me after my severe mental issues, so we decided on Vancomycin. I have been on a lot of “mycin” drugs, so I figured this would be a safe one.

Nope. My hand and arm began to swell up. You couldn’t even see that I had a wrist. It was all one big swollen sausage. Then came the red blotches on my arm. They didn’t itch, but felt really hot to the touch. Finally, I began to uncontrollably shake on the table. Convulsing shake.The nurse had to hold me down and was trying to cover me in more blankets. So lesson learned. I am allergic to vancomycin.

I was wheeled back up to my room after my body calmed down and was frequently monitored. I was tired and Dave encouraged me to fall asleep, but I just couldn’t do it. At least there was an SVU marathon on TV, which Dave watched for the entire day.

It was almost 5:00 and I was really afraid they were going to want to keep me overnight, and I just wanted to go home. The last nurse that came in got a doctor, and I was able to go home.

We were naughty and did drive-thru on the way home for dinner, and I fell asleep for the rest of the car ride home. I stayed up long enough when I got home to once again do my thumbs up Kimmie pose, call my parents to tell them I was home and greet my dogs. Out like a light.
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I have been a bit sore, but really not too bad at all. Here is my war wound… it has been a few days.
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I have had a few decent days, at least for me. My mind has been a bit mushy, but I was able to go to the bank, post office to send out a bunch of certified year end work reports (I did have a hard time with this.. I think it was the lighting), and even went to the little grocery store in town to make a salad and pick up a dinner for Dave since I am not all that hungry.

I am hoping for going to dinner with Dave or a movie night in this weekend, and I will be back to the grind with my antibiotics. I am happy and scared at the same time. I am glad they listened, but am worried that it won’t go any better. I am being an optimist though, and that this will make a huge difference for me.

There will no longer be cardiologist appointments, so that is one less stress I will have to deal with in my life. This whole heart monitor experience is behind me, and the notes that my electrophysiologist gave me made me smile. Okay.. obviously no one wants anything else wrong with them but when looking at the big letters on my paper, “DIAGNOSIS: POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME”, it made me feel like I am finally validated. On paper. I am not crazy, I am not a drug user or partier. I have an actual diagnosis on paper.

Well… I guess that is about all for now! Things are already beginning to look up for 2016. Maybe, just maybe this will be my year. 🙂 Hope you all have a great weekend!

Yet Another Year of Lyme

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2015 is coming to an end. I wish I could say that I am now in remission, but I still have a long way to go. I have been torn down many times, beyond discouraged, but there has been a lot of positive things that have happened along the way this year. As I always say, there is always good and silver linings, you just need to find them. I try my very best to hold onto these memories and accomplishments the very best I can.

This is my reality. My violins. Don’t you worry, you will get to read and see some of the most meaningful positives of the year, no matter how big or small, that make me do the “happy couch dance”.

I look totally different than I have the past few years. Other than looking like I have had no sleep (I often sleep 12-15 hours a day, even though people don’t “get it” and tell me that oversleeping is why I feel the way I do….) and I hangover, sometimes a tinge of gray, I look normal. My weight is stable, I don’t tic as much as I use to. I am now facing more of an invisible illness.

Compared to years before, I was pretty much in a vegetative state. My body was shutting down. I was not okay. If this makes any sense to you, I know I am technically okay. I am not dying. Before, that is where I was headed. I was completely unaware of how sick I really was. I was just there. Somewhere in outer space. I am no longer like that, although still very disabled and sick, but now, I feel every little thing. EVERYTHING. Not that it was a good thing to be as sick as I was, but all those terrible things that were happening were just a blur. It is so hard now, realizing every little ache, every neurological symptom, and being much more aware. Yet it is just about a complete invisible illness…. unless you see me crash and burn.

Over this past year, I have continued to slide downhill and have lost more independence. The numbness, dizziness, fog, and exhaustion are very overwhelming. There are many days that I have no feeling in my legs and feet, and having POTS, I have collapsed and passed out many times. I have found myself waking up on the bathroom floor on several occasions or somewhere in my house. Dave even used one of those pallet thingamabobbers with wheels to wheel me out of Lowe’s after an episode.

I had to laugh one day leaving the hospital for some routine blood work. I parked my car as close as I possibly could, and next to me, was a little old lady with her walker, passing me as I was walking to my car. Snail versus turtle I guess. The turtle won. Haha.

I am still very sensitive to lights and sounds. I can’t go to places that have bright lights, flashing lights, or are very busy. It is almost like a wave comes over me, and I turn from “as okay as I can be”, to very not okay. My friend and Dave have had to carry me out mid meal and take me home. Often these lights, as well as elevators surprisingly, trigger my tics.

I have Babesia hot flashes, and when I wake up in the morning, I am completely drenched in sweat. It looks like I hopped in the shower and went straight to bed. Dave tells me that he kisses me every morning before he goes to work, and it is like kissing raw meat. Gross. Other days, I am wearing a winter jacket while my house is nearly 80 degrees, and have a few blankets over me while I lay there. I am completely freezing. My liver and spleen have also been enlarged for most of the year, accompanied by chest pains, thanks to Babesia. That parasite is evil and a bitch to get rid of.

There have been days I have completely forgotten where I am driving, where I left from. I do not recognize where I am at all. I have been lucky that I only allow myself a very small radius to drive, and I eventually recognize a house, a building, a sign…

Dave has had to be a “supervisor” to have me bathe, as I tend to black out in the shower. He changed the settings of the shower thinking it may just be too hot, as I can’t tell hot from cold very well, but from what doctors have told me, this is a misfiring of my autonomic system.

Many times I have found myself sitting in my car at a place to run errands, and I know I just plain can’t do whatever I need to do. Go into the bank. Pick up a prescription. I have bawled my eyes out in frustration, had full fledged panic attacks which include vomiting all over myself, and then comes the seizures.

I drove home once only to have a cluster of seizures. I had a partial one, that was minor in my case, as I remembered it and didn’t have the joy of pissing myself, and then the type of seizure I hate the most: tonic. I suppose the best way to describe this type of seizure is turning into a complete mummy. Frozen in ice. Generally, my hands do a weird raptor claw thing which can be painful, and I have fallen off the couch before because I obviously have no balance if I am laying on the edge of it. Fortunately, Dave has been home for a lot of these sorts of things, and it tends to happen when I really overdo it, or if I am a dumb dumb and forget my seizure meds.

The good the bad the ugly… there have been many a times that I have completely lost control of my bowels and bladder. Super fun. Sometimes you just have to joke around.. it is one of the ways to keep your sanity dealing with this sort of thing. One time very late at night, I woke myself up in a big ol’ puddle. For real? Dave grabbed the “bad dog kit”, the plastic grocery store bag with a spray bottle of Lysol and a roll of paper towels. Spray spray spray. Pat down. It is late at night and I am out of it. I just switch my pajama bottoms while he places several paper towels down on the patted down piddle spot, and back to bed I went. Good enough. We will change the sheets tomorrow. LOL

My two nightmares throughout the year include dealing with my cardiologist, and a certain medication’s side effects.

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I had an electronic heart device implanted in my chest the beginning of this year. It was suppose to be a 3 month thing, and now I am going on 11 months. This little thing, about the size of a stick of trident gum has brought me hell. I have never felt so angry or mistreated by a doctor. Long story short, the cardiologist illegally changed my paperwork from tachycardia of unknown origin to being a heroin and opiate user. What? A) I had never been drug tested so you cannot put that in my medical charts, Bub. B) You cannot just change paperwork, and thank you so much, that gets sent to my army of doctors. Their staff continuously told me I partied all night and abused drugs, and that was my problem.

I told the cardiologist exactly what was wrong with me, POTS, as my LLMD suggested it, and my symptoms of dizziness upon standing and standing for short amounts of time caused this issue, when your blood pressure drops significantly, mostly because of my poor circulation and my blood pools in my feet, and my heart then makes up for it, causing the tachycardia. I think pride took over, maybe.
When I saw that my paperwork was changed, I called and mentioned the word, “lawyer”, and it was changed back that very same day. I wanted to clear my name so I had Dr S give me a full, everything under the sun drug testing panel since my GP, who is pretty much up the cardiologist’s butt since their offices are next to one another would not help me and said it was unnecessary, and low and behold, everything was negative. I happily handed out my results with an underlined, “I told you so.”

I then got sent to an electrophysiologist (the jerk didn’t want to deal with me anymore so he pawned me off), who was kind and listened. Within a few minutes of talking, he totally agreed with my diagnosis. POTS. He gave me a new medication, some exercises and diet to follow, and although not a cure all, I have seen a lot of improvements.

I don’t know if I have really fully explained this at all on my blog. I don’t know if it was a side effect of the drug, brain swelling, massive toxicity bugs stirring…

I have taken this medication for years without any side effects. In fact, it was my very favorite IV and one of the most helpful. It was like an instant fog clearer. It all came to an end though. The first week I took it after several rounds of this very same protocol. I began to feel anxiety and depressed. Paranoia. Hmm.

I had a two week break in between starting treatment again, and this finally lifted. I am not usually like this at all. I am pretty much a carefree, go with the flow, happy person. It scared me a little bit, but I pushed that worry aside and continued on with treatment.

This time, it got bad. Incredibly bad. It was probably the very worst feelings I have gone through in my entire life. I wish this upon no one. I tend to hallucinate sometimes at night, spiders and figures, and they amplified incredibly. That at least I know isn’t real. It is more annoying, and it gives me the creepy crawlies as I see these spiders all over me that really aren’t there. The depression, anxiety, and paranoia came back ten fold. Then… I began to hear voices. Voices telling me that I am worthless, that no one cares about me, that I would not be missed. “Go on, kill yourself”. I began to actually get to the point that these voices inside my head ponder as to how I would do it. Shooting myself would make a nasty mess. I don’t have a ceiling fan. What to do, what to do.. The only way I had any peace to drown out these voices was to sleep. It would take forever to fall asleep, but I somehow did. I would think and watch every little thing in my life, as if is was on an old film. Ugly things. Things I have blocked out for years that I have chosen not to remember.

It needed to stop. I never complain to my doctor but I needed to say something. I will admit, they aren’t the quickest at getting back to patients, but they called me within the hour, switching my medication and taking the situation very seriously.

It took about a month to finally get to a better frame of mind. A very very long month. I hope to never feel that way again, and I am so lucky that I never acted upon these voices or extreme depression, and continued to tell myself over and over that this is not real, that these voices are telling lies, that none of it was true. I do matter.

Now, onto the good! There has been a lot of good that has held me together.

Some days, it had seemed like a weight had been lifted off of me. They may not have been as big of accomplishments as when I was on the IVs still, but they were a huge deal. Moments of “blue skies”, as Dr J calls them.

Okay. I am going to be honest here. I am getting pretty tired and I think I will bullet my good times this year.

– I have had many improvements with the Lupron shot, after the first few week’s side effects which included a lot of weight gain and edema, The gynecologist was using as a diagnostic tool instead of surgery, as I tend to do very poorly and we were trying to avoid that at all cost. I am so glad that things have gotten better for me in that perspective.
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– Thumbs up!!!! This is what happiness looks like. I was all done my meds until I was going to go back to DC. This was one of those days it wasn’t even worth trying to wash my hair or shower with Babesia kicking my ass, I had jaundice in my hands, my blood pressure meds were not working so my feet look liked they were ready to fall off, tachycardia, and my eye ptosis was kicking in… BUT! I did some cleaning, took Cooper to the vet that day, which is a huge drive for me. I made it to the store to get a bag of dog food. 20 pounds is more than I have been able to lift in years (yeah I know pretty pathetic) but I manhandled that bag without asking for help, went to the bank, AND got called into work that day. That is pretty bad ass.

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– Rite Aid is my nemesis. I can’t handle the lighting whatsoever or navigating thru the store. I’ve sent Dave and my lady love to grab things for me, but that particular day I had to do things on my own. After talking to a few friends, I was convinced to wear my sunglasses in the store which I get embarrassed about and I got just about everything I needed!

I might have ticked a bit, got a few looks, swayed in line, felt lightheaded and had to sit in my car for awhile shaking and couldn’t feel my legs before going home and was complete toast but I did it. It was a friendly reminder that I should never give up an try to find a way to make things work if I can.
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I don’t really know if this is a positive, but I have had a terrible habit of ordering random items online over the year. Kitty tee shirts, sweaters, even one of those control tops that holds everything in. Needless to say the laptop gets closed early, as these shopping sprees happened late night. At least I never had any recollection of buying all the stuff, so when packages came piling up at my door, it almost felt like Christmas.

– I was very proud of myself when I took the longest drive in 3 ½ years for me to my neighboring town, and did a full grocery shopping trip, all my myself! I hadn’t even been able to wash my hair or shower without Dave being there in case I fell down so this was a big deal to do something hard that morning.

Unfortunately, people were rude and stared at me for the way I walked and rocked back and forth, and for my thriller dance hand, my legs buckled from under me at the register waiting in line, but was trying to not let that get to me. All I can say is I did it! Screw what other people think.

-Dave now takes me on occasion shopping trips at the local grocery store. By the time it is time to check out, he gives me the keys to go out to the car, but I can at least make almost a full trip on better days.

My beach day. I was down in the dumps, roughly when I was healing from the medication that could have killed me, and Dave surprised me with a little getaway. Although I could only walk about half the beach compared to the full when I was doing better, there was smiles for miles. Wells Beach in Maine is probably one of my favorite places on Earth. Not only is it a lovely little beach, but I have so many happy memories tied to it with my family as a kid.

11822821_10153105161757404_2163833528194572570_n My Dad got this recumbent bike for me, and I have been trying to use it as often as I can. I was so excited when I got it, and even made it up to 15 minutes on it! I got mono in September so it was a little setback on using it, but I am back to it and am doing really well!

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This was a great day. A little adventure up to the top of a mountain. It is a bumpy ride and takes a few hours, but I made it. Dave loves wheeling and I use to be his partner in crime, so I know this meant a lot to him too.

– There are still good people out there. Friends that I love. I have come home to a surprise clean house and gardening done, doesn’t judge or question me. That I know actually cares about me. A friend who will just sit by my side and watch movies, or chit chat. And is completely fine with it. My family.

-These guys! image

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Dave. I could say do much about how much I love and appreciate him. Although he may have the Michael Myers theme song as his ringtone for me, I know he loves me. Without a doubt. He has ben my caregiver, my support, EXTREMELY patient, and he makes me laugh every single day.

The beginning of 2016, I will be getting my heart monitor out. I am so excited, and feel like that chapter of my life will be over.

My entirely new protocol also will start next week. I am optimistic that this change will be exactly what I needed. A new year, a fresh start! Wishing you all good health in this year to come!