August Part 1 – Busy Month

Unknown
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?
unnamed-2

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.
13912557_10153847578722404_7940129703708579618_n

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”!!
unnamed

July Part 1 – Keep Pushing

Unknown
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!!
13439071_1319471924747708_6405174859913383621_n

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.

10001434_10152097822127404_7231820484926265590_n

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.
13315245_1113471522028971_5780632703895087752_n

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.

13239075_10153695237942404_2848269084875887100_n

 

 

March Part 1 – Big Decisions

Unknown

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?

Unknown
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.

January Part 2 – New Protocol Round One!

Unknown

As you all know, I have been on the same super duty protocols for well over a year with no success. The beginning of this year we decided it was best to try something different. On paper it looks like absolutely nothing, to me at least, yet I get a lot of “you’re so brave!”‘s as well as even being told I was someone’s hero. I guess that gets my mentality into fight mode to keep on going. I was at least pretty optimistic that this protocol would be good for me, as I am only taking half as much medication to kill a horse.

I didn’t really feel like starting. The day I was to begin my protocol was my one Sunday off of work a month. I actually was doing SO well for me. I did some cleaning, and even went grocery shopping by myself! Really?! Why do I have to start on a good day.. with my pills down the hatch, once I had my big exciting moment, I was ready to go.

My optimism and positivity paid off my first week. I handled it better than I had in the past 2 1/2 years of treatment. Unfortunately with Lyme disease, as there is no “one size fits all” treatment, it is really trial and error. I am hoping we might finally be onto something.

I did end up crashing toward the end of the week. I was frustrated at just about everything and began to really get down in the dumps. I was still able to push through, and pushed myself hard.

Sometimes I really think that is necessary. It makes you feel just a little more normal. On those last two days that I was miserable, I washed my hair, went to work for a few hours, went to the post office and bank. When I went to the hospital for my safety labs, I parked just a little bit further away to get a longer walk in. I was walking like a baby deer when I was all done, but it was a good feeling that I was on my heavy days of treatment and I was still able to do more than I would normally be able to do by far. I was kicking ass. 🙂

By the way, my labs were much better than my last visit. I am not sure why, as my last labs were all over the place and I wasn’t on treatment. For me personally, it is usually the opposite. Not allergies to the medication, but the bugs are at war being stirred up in my body.

Like I said, at the end of my first week, I was toast. This is the difference between bomb day and the day after. Isn’t it crazy that just one day can totally change your appearance? I was all droopy and a mess in photo one, and the second photo I was feeling a lot better the day after I completed my last day of treatment. That is a clear example of chronic illness. Some days are good, and some days are not so good. I was asked the other day about my medications and if that is the reason people with Lyme feel so sick. Yes and no. No one feels fantastic on a half a dozen antibiotics, but it is the reaction of the die-off that is making you sick. A herx reaction.

 

The honeymoon was over after my first week. Week two was my hell week, and I wanted to give up, but I didn’t. I wanted to stick it out EXACTLY as my LLMD ordered, to see what would happen. No cheating. No quitting.

I am trying to pinpoint what was killing me, and I almost think it is the high dose of Artimisinin. Who would have thought an herb could wreak such havoc? My tummy was NOT HAPPY. I was so nauseated.  I had so many neurological issues going on.  I was in a complete fog and my tics were back, and they have been back (at least now it almost looks like a quick intense shiver then I’m done most of the time), and having speech issues to the point I sounded like I was speaking a foreign language. A slurry and jibberish one. Haha.

Unfortunately, through this time doing my new protocol, I know I have undone any little bit of gut and fungal healing that I have been doing for weeks and weeks.  Stabbing pains, being glued to the toilet and the fun times of being glued to it with a trash bag to my face on week two. Having Lyme nausea as a lot of you know, it is a bit different. Instead of feeling better and relief when you finally throw up, it doesn’t help one little bit. I am completely bloated, and I have a yucky toxic yellow tongue. Ick.

I have the choice between 2 and 3 weeks off once treatment is completed. I might opt for 3-4. Having an upset gut isn’t a good thing at all to help make treatment effective.

Oh yeah.. we also brought home our puppy on Friday night!  Lucky for me Dave is a HUGE help at night. He told me last night she was making the bloody murder sounds that puppies tend to do in their crates about every 3 hours. I didn’t hear it at all. Night time puppy duty for him.  Day time for me. We are making it work, and she will be no different than our other dogs: a spoiled rotten brat. 🙂

It is keeping me going and I really enjoy it. She just turned 8 weeks old, and already knows sit and lay down. I think she is starting to get the concept of going outside to go to the bathroom, but with pee it is still really hard for her to hold it.

I have only taken one quick nap since Friday! Having a puppy you cannot sleep your life away. She is keeping me on a better sleep schedule, I have even been going to bed around 10, which is exactly what the doctor ordered. Maybe he should suggest everyone get a puppy. 🙂 Only kidding. But, it seems to be helping me! I am really happy to have her join our family. We love her so much already.

P.S. We decided to name her Olive. Ain’t she a cutie patootie?

I have been doing some research and talking among several Lyme patients and have decided to try something entirely new: biomagnetic therapy. Honestly I thought it was kind of hogwash sticking magnetics to you, but I have heard a lot of positive feedback. I suppose you can call me a skeptic when it comes to alternative therapies.

I really shouldn’t be though. I am learning to have a more open mind… with those who at least don’t throw things down my throat or try to sell me some “It will fix you even though I know nothing about Lyme disease” pills. Money back guarantee folks!  *Rolls eyes*

I have even started incorporating some essential oils to help alleviate some symptoms, especially right before bed when things like to flare even more. See? I’m trying to have a more open mind. And I will admit, the oils seem to help a bit.

At this point I am up for trying anything, and the people I have spoken to about this treatment were really happy with the results. I am going to try a few sessions and see what I think. These are my friends, and people I know have absolutely nothing to gain by offering advice with their experience. I take friend’s opinions pretty heavily as well. Worth a shot right?

Okay. So I didn’t really know what  biomagnetic therapy was, and this is what I think I understand about what it actually does. It basically uses pairs of magnets of opposite charges to depolarize areas of the body due to pathogrens. The treatment balances PH levels, which helps the body to have the ability to regenerate and restore itself. (Thanks Innovative Medicine for the info.)

I have a few weeks wait until I begin that treatment in addition to my current, so I will be excited to give you all an update, hopefully with great news! Have a great week everyone!

January Part 1 – New Year, New Start

Unknown

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.
unnamed-16

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.
12507502_10153369371042404_2261303036856461139_n

I have been a bit sore, but really not too bad at all. Here is my war wound… it has been a few days.
unnamed-10

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!