May Part 1 -One Long Vacation..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

March Part 2 – Coming to a Fresh Start

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wishing you all a good Sunday!

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

October 1 – It’s That Time of Year

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Where do I begin? There was definitely some ups and downs during last week’s breaks. Mostly downs, unfortunately. I must admit this has been one of the toughest breaks that I have been going through, if not the toughest out of the entire three years of treatment.

As I sat here staring at my laptop for quite some time, I noticed my battery was just draining from it, yet there were no words on my screen. I couldn’t for the life of me remember this week, other than it being completely miserable. I haven’t had the best time, but I remember last Saturday going out to dinner with friends. Even though I wasn’t doing great, it was nice to see my friends and take my mind off of “me” for while.

The following day, I don’t know if I was getting sicker, or making up for going out to dinner, but I was pretty bad. Dave wasn’t home and off to a racing event, so I ended up going down the road to a friend’s to watch the football game. That is the sort of thing I like. Sitting on a comfy couch. LOL

I do remember everyone going nuts about the “blood moon”. I must have missed the memo that it was on Sunday night, as I went outside on Saturday night during the time it was suppose to be happening, and thought to myself, “What the f*ck is the big deal about this?” It was just a bright moon. That would be because I had Lyme brain and was off a day. I did end up watching it on Sunday though… then I understood what everyone was talking about. LOL. Ohhhh Kimmiecakes.

For the rest of this week, I had to go back and re-read old emails and Facebook messages. My mind is mush. I have had to email my friend and ask if I had ever responded, probably repeating things over and over.

I had been holding onto the thought that I was having a Babesia herx for awhile. Exhaustion (way beyond my usual exhaustion), fevers ranging from the 99’s to 102’s, chest pain, flu-like pain, abdomen tenderness, sweaty. Just out of it. But for that long? It just didn’t make sense to me.

By Tuesday, I couldn’t take it anymore. For the past few days I felt it creeping up, but woke up with a horrid sore throat, and could see my lymph nodes sticking out of my neck. My throat was closed. WAHHHHHH…..

I have heard that mono is going around, and I have never had it before. I have had EBV that can easily be reactivated with a compromised immune system, and I have tested out a sip of a friend’s gluten free drink last time I saw her, who was recently diagnosed. Hmmm.. I ended up emailing Dr S about my concerns, and he ordered up several tests, that I am still waiting for. He told me the send out tests could take a week or so. Tick tock… and so I wait.

Dave is convinced it is a Mycoplasma flare up. I totally forgot to mention that to Dr S, so Dave told me to leave a message with the clinic. Since Myco is treated with antibiotics, it is also an easier idea to speak directly with the clinic instead, as they can tell me what they want me to do for treatment if that is the case.

The flu has also been suggested to me but I haven’t had any stuffy nose or anything of that sorts. A regular lingering cold with no stuffy nose? I don’t know. Medical mystery.

On Wednesday, I figured, why not.. I already feel yucky, so I might as well start my “shortened” protocol. I still did my Flagy and bomb days, I am just trying to hoard my Daraprims at the moment. Within an hour of taking my first day of pills, I was dry heaving at work (I was told it was okay, as long as I didn’t ralph on the keyboard haha), could barely walk, and felt as high as a kite. My good old friend Bactrim was probably the culprit, and it also leaves a disgusting taste in my mouth and leaves it feeling like sandpaper, and my eyes dry completely out. I swear I can hear myself blinking whenever I take it.

Friday I went in for more blood work. It is funny how within a few days your blood work can completely change and be even more out of whack. Nothing was really concerning at all on Tuesday’s blood work. Friday’s on the other hand, there was a lot of different things off. I was bummed. Chinese food is usually my bomb day savior. I was incredibly nauseated, and kept a trash can handy near me at all times. Maybe it was my bomb day savior and things would have been much much worse.

I ended up sleeping on the couch that night. I was tossing and turning, couldn’t breathe, and felt as if my chest, head and stomach could possibly explode. I just wanted to sleep. It was one of the few times that I felt like crying being sick.

Saturday wasn’t a much day. I had so much work to do, I am starting to get really anxious about it actually, since the quarter just ended and I have a lot to do. I will have to do my best and try to just focus this week, no matter how I feel. I did end up getting a decent amount of work done, but I was pretty much moving at the speed of molasses. I was so foggy, I felt like a bus hit me, and my chest hurt. The nausea still hadn’t gone away, and every single thing smelled disgusting to me, even if it was all in my head.

By the time I got home, my chest pain (I would describe it as my heart itself was hurting) was so bad, and the air hunger, and pain trying to get a breath in was so bad that I contemplated having Dave take me to the emergency room. I am not going to lie, I was a little scared.

I remembered that the most important thing was to keep calm and try to not panic, as that would not help at all. Secondly, I remembered…. SH*T! I HAVE LYME! So.. the ER is quite a joke. Unless I am bleeding to death or have no knowledge that someone is taking me to the ER, then I would really prefer not to go. All they would probably do is be dinks, call me a drug addict, or give me a lactated ringer… which honestly I wouldn’t mind. I love those ringers.

I sucked it up. I noticed that laying on my side seemed to help, and I melted into the couch and slept for hours.

Dave left for awhile, which was okay, so I didn’t feel bad about sleeping. By the time I had woke up, I had soup ready for me, a brand new vacuum and of course he vacuumed, and the laundry was done. He gets a big gold star.

It has been days since I have washed my hair. Dave commented to me this morning, “You look so much better with your hair up since you never wash your hair!”. Yup. So I guess I need to wear my hair up more often. Spaghetti is never a good look on anyone.

He has helped push me this week to try to do what I could. He knows I am having a terrible time, but he has gotten me on the bike one night, and today, he had me go for a ride with him and the dogs to the dump, and parked near the bakery to pick out a gluten free treat while he went grocery shopping. He knew shopping would be too much for me today, but he at least got me out of the house.

Sometimes, I am not going to lie, it makes me want to punch him in the face, but all in all, I am grateful. I have to do things because there isn’t a choice, like go to work although just part time, but getting pushed a little harder even though I get angry, I feel better once I am done. That I can do it. I also have to keep in mind all the things he does to help me… like my soup, cleaning and laundry this week, and hundreds of other things he does, so I really should listen to him once in awhile. 🙂

I just started week two of treatment. I figured why not. I don’t have any sort of game plan yet, as I don’t have any blood work back.  Other than Dave getting me out of the house, I haven’t been very productive. He is making me dinner tonight, because he is awesome, and I am trying to rest and take in a lot of fluids. I do feel better today, as my chest pain is nowhere near as bad as it was. Breathing is nice! 🙂

So… I really don’t know what is going on. I just know that something isn’t right. Bacterial or virus, I am not sure. This isn’t a herx. It is discouraging, as just a few weeks ago I was describing moments of blue skies, doing some cleaning in the mornings, feeling much more “normal” than I have in a very long time. That I was on the right track. At least I know my body enough to know that there is something else going on, and although it may linger longer than a healthy person, it will eventually go away. I will keep pushing, and hope that this coming week is better. That is about all I can do! I will figure it out. I always do. Just a little bump in the road.

August Part 5 – I Treated, I Conquered

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This past week was my final week of treatment of this protocol. In my mind, I was very positive. Butterflies, rainbows, and unicorns. After all, it was only two measly antibiotics. Piece of cake. No problemo. I must say, I really underestimated it. This week was pretty miserable in fact.

The entire theme of this week was sleep. Lots and lots of sleep. I was so nauseated from my treatment. It was one of those feelings that I felt so much better while I was eating, but as soon as I was done I really regretted it. I have accomplished pretty much nothing at work, but I make sure I leave with the desk looking a little tidy, at least having the pens put away, the stamps, stapler and calculator in a neat fashion. That is about as much as I got done.

I seem to get a lot of the fun side effects from my medications. If it says edema, I will get it. Weight gain, and my all-time favorite, “severe diarrhea.” Omnicef is just one of those drugs. On a positive note, I figured it would offset my slight weight gain from my new POTS medication, and it definitely did.

Once again, I had a moment of forgetting that I have been potty trained, and didn’t make it to the bathroom in time. Joy. At least I know that my legs are still working, as I have been racing to the bathroom all week. Underwear shopping will be coming pretty soon. I also once again BARELY made it to the bathroom with a bed wetting accident. I am not really sure what is going on. All I know at least is my stomach is beyond messed up. I know this a bit, okay very TMI, but, I promised you all, the good, the bad, the ugly… the gross. How is everyone going to understand this disease if you sugarcoat everything? Right? Right. At this point, I honestly do not care.

When I went to see my massage therapist, we joked around about my incident, and I assured her I wouldn’t have any accidents while I was getting my massage done. Haha. My temperature in my legs and feet are still doing better, but my lymph and connective tissue in the back of my neck were painful, and I know I was full of toxins. I am definitely having Bartonella issues, and as expected, with all the recumbent biking I did before, my thighs were pretty knotted up.

Between Wednesday and Thursday, I slept 30 hours. It is annoying only for the fact that I am not being useful in any way, but I know my body is needing it desperately for healing. Yesterday, I slept for 16 hours. 16 hours! Dave didn’t even bother trying to wake me up in the evening, he told me that I was out like a light. All of this sleep has been making me slack on my biking exercises, but the first thing you do when you are out of sorts and wake up isn’t exercise. For me, it is laying in a ball on the couch with my face smushed into a pillow. It has made me feel pretty guilty. The day before my massage therapy however, I did manage to do 20 minutes on the bike, so I at least feel like I did something at least, making me feel just a little less guilty. There is always next week. I will make up for lost time.

I have been a bit stuttery all week, and it took me forever to try to check some work with my Dad. My vision continuously blurred, and I kept hearing buzzing in my right ear. I few heavy blinks and after a few moments this would go away, but it kept on happening over and over again. That and the fact I was focusing on not puking all over the keyboard. If I had to guess, my Dad would not be overly impressed with me.

The second to last day of my treatment, I was extremely frustrated. I have been having phone problems. Unlike the rest of the world, full of technology, I have a plain Jane slider phone. To me, it really doesn’t matter. Unfortunately, when you open the slider part for the keyboard, I get a white screen of death, and several of the buttons on my phone have stopped working. Phone calls are only occasionally coming in, and are cutting out. Yeah. It is time for a new phone.

Dave and I went to the Verizon store, and I instantly felt like I was going to pass out. The lights were totally screwing with me, and although I wanted to look around the store, I couldn’t move. I just had to sit there, and picked the phone that was closest to the chair. Good enough.. Unfortunately, the guy was a dink, and wouldn’t let me get the phone because it was in my Dad and his company’s name, even though I am on the contract. Dink.

I think he honestly just didn’t want to deal with me. I had a little mumbly Lyme rage session leaving at the man. I was not so nice, but I am guessing I probably came across as a drunk, so I looked like the idiot. So I will have to deal with my phone for a few more days, until my Dad has a chance to get a new one for me.

Dave offered to take me to Walmart, which was right across the street, but at that point I could barely hold my head up, talk, or keep my eyes open. I wouldn’t have even been able to use a scooter to get around. I bet it would have taken a good solid two minutes until I slammed into a pillar and broke their scooters. Maybe they are really durable, but I don’t think they are made to be like bumper cars. So home we went, and I instantly fell asleep.

I have felt left out this week, I have noticed this more and more over time. May I be a bit sensitive yes, but I know this is just a reality that I face. There is no denying it. Dave has told me that he would be willing to drive me to and from to try to get me out of the house if someone wants to do dinner with me, or just hang out, and that was months and months ago LOL. Like I said, a reality I face. It is one of the joys that happens when you can no longer do the things you use to.

A good friend has told me one of the best pieces of advice I have ever gotten, “Did they wake up intending to hurt you? If not, then let it go.” I honestly think that people just don’t realize their actions. I made my peace with everything. It doesn’t make it stop stinging though. Oh well. I will put a band aid over it. At least I am sleeping through pretty much everything. You can’t have any more tears if you are fast asleep.

On the other hand, yesterday, one of my best friends, Amelia, happened to have a bit of time off before she had to go to work. She came over to spend some time with me. She is one of those people that we can tell each other anything and everything, give each other advice, and just sit and talk for hours.

She will just come over and sit and watch a movie with me because she knows that is all I can do for the day. I always feel like everything is going to be okay when I see her, no matter what is wrong.

As of recently, I have been looking into essential oils, especially now that I am on my antibiotic break. My Dad has about a million of them, so he gave me some to try, and gave me a book to get some more information. I got some advice from a friend that is into the oils, and decided to give it a go.

I am extremely sensitive to the smells of certain oils, and I seemed to not have issues with the oils that I have tried. Clove, wintergreen, peppermint, lemon, lavender, and a few others. I have Frankinsense, which I have heard a lot of Lyme patients use as treatment, but I figured I would wait on that one, since I have just stopped treatment. I put a drop on each foot with the oils, and put a pair of socks over them before I went to bed.

Today something very different happened to me. Although I slept for 16 hours yesterday and woke up feeling like I had never gone to bed, felt feel flu-ish and am in a lot of pain, I felt as “normal” as I have been in years. Usually in the morning, when POTS hits me the most, dizziness, lightheadedness.

I sometimes collapse, black out, pass out, and have to take baby steps from the couch to the bathroom to do anything. Brush my teeth, lay on the couch, wash my face, couch. Hit my heart monitor button. Can you imagine having to do this every single day? Let me tell you, that shit gets old, real fast.

Today something happened. Finally a moment of blue skies.

I picked up my house a bit, vaccuumed, used my recumbant bike even though it was just for 10 minutes, actually took a shower (I skipped the hair washing but whatever), and started to clean my car out. Anyone that knows me knows that this is a daunting task. Haha. I have about 8 zillion receipts and bottles on the passenger side of my car, enough that you cannot remotely see the floor. I went to work, and had to go to the bank for Dave. I was determined to do it all.

These are things that so many things people take for granted. I don’t know if it was my disgustingly heavy protocol that I just finished, my new blood pressure medication ( I am finally beginning to lose the weight from it.. Yay!!) , juicing to detox, or beginning to use the essential oils. When you are doing so many different things, it is hard to pinpoint.

All I know is, this morning was a miracle.Telling Dave about my accomplishments I cried, happy crying, and it makes me so hopeful that someday I will get most of my life back. I have been taking it easy and know there is a good possibility I might crash, I am already ready for a nap, but I am so happy. I really think that things can and will turn around for me.

April Part 7 – Press That Button

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I usually somewhat know what to expect during treatments, since I have noticed patterns over the 2 1/2 years of treatment, but I will say I was wrong about this round of Coartem. Since I have started this part of my protocol, it is always the first day that kicks my butt, and it seems to get a little bit easier the following days. This time, it got tougher and tougher.

Could this possibly be a little payback from my heart monitor procedure? It could. Unfortunately, with so many things going on, it is nearly impossible to pinpoint what the cause of issues that come up may be.

On a positive note, I have not had any of the usual crying episodes during this part of my treatment (except when Derek died on Grey’s… but I think you all did too). On a negative note, I have been unpleasant. Swearing at the computer during work, yelling at people that have no idea how to drive, beeping my horn, giving “the look” and waving my middle finger, being snippy at Dave. It seems like I literally just blurt mean things out to him in an instant, without control or thought. Being the good husband he is, somehow he at least tolerates me and can forgive me for being an asshole. Within a few days I will be back to my normal pleasant as pie self… or at least a little but nicer, once some of the toxins go away.

The day after my protocol is buttoned up, I always do a round of juicing, and well, having Lyme brain, I completely forgot about ordering my juices, since I don’t really have the energy to do this myself, and realized how much of a difference the juicing does to help me with detox. Every little bit of my body hurts, and I am exhausted. Yesterday, I slept the entire afternoon and into the early evening. Dave wanted to take me out to dinner, but I literally could not get up off of the couch. It became a movie night, and that was 100% fine by me.

Today was the first day that I was able to take of my Tegaderm from my procedure, which was something I was beyond happy for. My skin has almost what looks like little red blisters where it sat, even though I tried to move around the bandaging every day to give it a little room to breathe. I have my ugly steri-strips on, which have a bit of blood on them where the incision site is, and I will have to wait until they come off on their own. Hopefully it won’t be too long because it is gross. I was a genius and wore a v-neck sweater today to display it though. Tonight I will have to set out something to cover it up for tomorrows clothes. I don’t want to see it, I am sure no one else wants to either 😉 .
Photo on 4-26-15 at 1.06 PM #2

Dave went grocery shopping this morning so I wouldn’t have to go with him once I got out of work and could relax at home, and told me he forgot cat litter and we are all out. I offered to pick some up on the way home, and had my first “press of the button” with my monitor.

It is frustrating still struggling to even pick up one item at a tiny grocery store. I began to feel really dizzy and lightheaded, and my legs turned into jello. Luckily there was no line at the register, so I could get in and out of there, and I sat in my car for a bit before heading home.

While sitting in my car, I had remembered that I needed to call the cardiology department, even though they would see I pressed the monitor, they just would like a reminder… or something like that. No one was in the office, just an on call doctor, so we shall see if anything pops up. The difficult thing with the monitor is that they set it with what they consider to be high or low pulse rates (they can adjust them), but unless you tell them there is an episode, the results that do not show up will be wiped out within a day. So that means it is really important to call and use the remote. Is it my blood pressure or my heart causing an issue? Not sure yet. All I know is that I am planning on starting Midodrine tomorrow and seeing if there is any improvements. I am hoping the herxing will be gone, or at least lighter by then.

I guess it is time for me to try to pick at some household chores. I just want to curl into a ball, but I can hear Dave doing yard work, so I feel bad not doing anything to help inside. Then, I am looking forward to nap time. Happy Sunday everyone!