September 7th 2012- 4 Years

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

 

August Part 2 – To Be Believed

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Okay. I have been slacking on my writing. I just don’t have the energy right now. Ironically, when I was a vegetable, I seemed to write a lot more. Maybe it is because I never slept. All I want to do is sleep these days. I can’t wait everyday until it is time to be able to get a few hour nap in.

I have been trying to detox as much as possible, doing my juicing, which seems to help a lot. I am wondering how I would be without doing my few days of juicing this past week, as I haven’t been doing so hot. Even without the sugars in my diet, I have oral thrush in the back of my throat and tongue. I can only imagine if I have this going on, how unhappy my gut is. So, I have been really keeping up with my probiotics and FOS, a supplement that helps feed the “good gut bugs”.

Friday was my long awaited electrophysiologist appointment. I went to work for an hour or so, then headed home so Dave could take me to my appointment. It is such a pain that I cannot drive that far (maybe an hour away?). That means I need to rely on him for all my trips.

When I got to my appointment, it was like a set up for neurological failure. To get into the building, it was a revolving door. I basically pushed Dave into the side of it, trying to get through. Then, the elevator. Some walking, and then of course the odd lighting. These things sound so simple, but they are quite the tasks for me. I was just about toast. I could feel my body rocking back and forth to my heart beat. I try to ignore it, but I know that it is clear as day to others who look at me.

The nurse came in to take all my vitals and do an EKG. My blood pressure was low, and my heart rate was just above normal. I wrote and brought a medication list to bring with me, and it still took at least 20 minutes to get everything all entered into their computer. On the upside, I have had some assistants take nearly 40 minutes to enter in all my prescriptions and supplements. I told the man that I was going to put him to work, but I would give him a gold star on this one.

I was right, the doctor that came in to see me was the doctor that had been there while I was getting my Linq monitor placed. I thought that was promising, as he wasn’t a dink then, so I had hopes when I had a longer chance to speak with him that he wouldn’t end up being like so many other doctors that I have dealt with on this long journey.

He went over all my information that was given to him from the heart monitor, and symptoms that have gone along with it. Dizziness, lightheadedness, syncopal spells, temperature sensitivities, feeling like my heart is beating a million miles a minute. How completely discouraging it is that I am not functional.

I left Lyme out of it, as I believe every patient should. The reason being that you are there for these symptoms that you want fixed. You are not there for Lyme treatment. Once you say the words “Chronic Lyme”, or anything of the sorts, you have a pretty big chance of having the doctor immediately dismiss anything you say. You are then some hypochondriac, some crazy person, some drug addict.

That being said, it is kind of difficult when you hand them a nearly two page list of medications as they will ask you why, but I think it is important to not focus on it. Tell them that is not why you are there and it is a separate issue if you have to, even if Lyme and coinfections are the direct cause of your issue and you know it. Treat the symptoms.

I discussed with him Dr J’s belief that I suffer from dysautonomia. POTS. I had told him that I have been prescribed Midodrine. Although it has improved my condition some, it has not fixed my problem, and some days it just plain doesn’t work at all. Just another pill to add to my regimen.

For those of you who are not familiar, in a quick definition, your blood pressure drops upon standing, and your heart rate elevates. Someday I will do a blog post about this topic. Once I get on the ball with things again.

He examined my feet, and told me that he had never seen anyone my age’s feet look as bad as mine do. He said that he generally sees much, much older patients with the feet issues and appearance that I have.

Yup. Purple and blue. They look as if they are just going to fall off, and when you touch them, it takes a long time for the color to come back to them. It is blatantly obvious that they are pooled with blood, yet Dr Dumbass’s office cannot give me any offerings other than suggestions of being an addict.

He felt my legs and he could tell the temperature difference from my calves down. My feet are freezing. He was also surprised that my legs have had so many vein issues at my age.

After our chat and a quick examination, he completely agreed with Dr J’s POTS diagnosis. He told me it really should be a clinical diagnosis, and wants to continue on with treatment, change my medication, and add some things that he believes would be beneficial to me. He said it is kind of a trial and error sort of issue to see what works for the individual as it is very hard to treat.

First, the new medication, Florinef. This particular medication helps you retain salt and water (great, I will probably gain weight..), as dehydration and low sodium levels are a common issue that can cause episodes. He described this medication to me as a daily pill similar to a lactated ringer. Now that I think of it, I never passed out when I did my lactated ringers over the time I had my IV treatments.

I think he may be onto something. We are going to play around with the dosages, and see if it helps any. I need to do some more research about this drug. Side effects, and general information. Remember folks, knowledge is power, and you should always know what you are putting into your body.  I know it depletes potassium and magnesium, so these are two things I should look out for.

I was pleased to hear that this medication should not interfere with any of my antibiotics, neurotropics, or supplements. That is always a concern. I also brought up the fact that I have been repeatedly been pushed to be put on a beta blocker, and I refuse. I was happy to hear that my cardiologist was incorrect for saying this to me as it wouldn’t be the correct course of treatment for my condition. Ha! So there!

So… new medication to try. He emphasized the importance of being well hydrated and have salt in my diet. He knows that I am still fairly debilitated and can’t really exercise, so he wanted me to get a recumbent bike to get my legs moving again. He said it does help many to get exercise and be up and moving, so this would be a good option to start out with. I no longer have muscle tone in my legs after these few years of couchin’ it, and he told me that it would help get the blood flowing again having more muscle will help the vessels in my legs and feet pump more easily.

Lastly, he did actually bring up Lyme and coinfections. I know I have just mentioned to NOT discuss this, but the primary focus of my appointment wasn’t revolved around this issue, I didn’t bring it up within the first five minutes of our appointment, nor did I associate the dysautonomia with having Lyme or other tick-borne diseases. This was all after our game plan.

What comes first? The chicken or the egg? Perhaps treatment of this will help the Lyme treatment, or perhaps the continued Lyme treatment will help with the dysautonomia.

He told me that he believes this might be a neurological issue and at the moment my autonomic system isn’t working at all right now. However, he is very hopeful that this will all get better and not be something I will have to live with forever. Any sort of positivity and hope is good!

I left the office feeling really good. I was believed. I was not poo poo’ed like I have been, and felt like this is finally being addressed and taken seriously. The electrophysiologist wants a follow up in three months, and my fingers are crossed that I will have good news to bring him during my next visit. Being believed is awesome when you are dealing with such a controversial disease and are constantly treated terribly by mainstream doctors. I was believed.

As soon as I got home, I fell right asleep for several hours to recoup from my appointment and the trip. Once I got up in the evening I decided to push my limits and go to the yearly Hospital Street Fair in my town. It is basically a giant thrift shop. I love it, we get Dave’s wardrobe there every year for like $5. There are always some neat finds.

Within minutes, I felt clouded, and “floaty”. I had to sit down while Dave looked around. There was a little band playing and a ton of chairs, so at least Dave wasn’t in a mad dash to find a place for me to sit. Even while I was waiting for him, a wave of dizziness hit me like a ton of bricks. Although Dave quickly made his round to check things out, I kept thinking to myself, don’t pass out, don’t pass out. I didn’t. Hooray. I didn’t need another Lowe’s incident within a week.

Yesterday and today, I have been in a tremendous amount of pain. I am not really sure what is going on. I am having the same feeling that I do when I am on heavy antibiotics, the stabbing pain in my stomach. Two particular spots, kind of to the right of the center of my abdomen, and more toward my left side. It feels like a sumo wrestler is crushing my chest. Last night I barely slept, there was no possible way to get comfortable, or try to forget about the pain enough to get a good night’s rest.

A few days prior, I had severe calf pain, enough to nearly put me in tears. It was odd. From the time I went to bed and the time I woke up, several small blue veins in all directions popped up behind my knee. No idea. They felt really tight. I spent a lot of my time with my feet elevated as high as I could on the couch.

I was a bit fogged, stuttery and ticky at work today, but finished everything I needed to and I at least managed to walk to the backyard and check out our garden. Everything is now turning to seed, but I think maybe our pumpkins will be a success this year as they are still going strong. 🙂 🙂 I plan to cook a big dinner that will last for a few nights.

My Dad was really nice and ordered me a recumbent bike, and it should be here sometime this week. I am excited to see how I feel and if there will be improvements. Let’s hope so, this sh*t is really getting old.

Happy Sunday!

July Part 3 – Another Week Down

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I was still recouping the beginning of this week from working, and visiting with friends. Although I was still not quite right, even for myself, I was much better than my case of the Mondays I had the day before. My focus of this week has really been to detox. I did a juice cleanse for a day, have been drinking tons of water with burbur drops, and have been very careful with sugar, as well as gluten.

Actually, I have been trying to avoid starches altogether. Starches, even gluten free, still convert to sugar. I feel like that might help my stomach out, and I have been loading up with probiotics. It seems to be helping. I am a lot less “bloaty”, likely from the Candida issues, and I have even lost 5 pounds! That never hurts either. 🙂

I saw my massage therapist, and I am still having a lot of leg issues. My feet seem to be doing much better. They were a normal color, not blue and purple, looking like they are about to fall off. It is encouraging that my blood pressure medication seems to be working. I also have not had a complete pass out episode in awhile. I am going to connect the dots here, and assume that there is a correlation between the two. Now only if I can get a doctor up here in New Hampshire to believe me and continue to help me out. It would be nice, and possibly a huge step in the right direction.

Wednesday morning started out with a panic mode cleaning. It is an OCD habit when I know that someone will be coming over. My mother in law was suppose to stop by in the evening, and I don’t want us to look like we are filthy hoarders.

Tumbleweeds of dog hair. Every object in our house was grey, covered in a layer of dust. I need a maid. I got a phone call in the morning, that plans were canceled due to car troubles. I managed to clean up the floor a little bit before I found out, so at least my house looked a tiny bit better.

At work, I began to be a bit of a mess. I think maybe the government reports I have been doing for the quarter were stressing me out, subconsciously, since I really wasn’t struggling to do them as I have been before. Over seven years of doing them, it now sometimes feels like it is my first day at work. My brain does not work like it use to, unfortunately.

I was having my tics, and was very stuttery. My hands felt like they were being hit with a sledgehammer, and my right leg felt like it could explode. Lately, it seems like it is full of something… I am not really sure how to explain it. It was a long ride home, and I spent the rest of the day relaxing, and keeping my legs elevated in hopes it would help some.

Thursday I did a bit of dub work in the office, and worked on my reports. I am nearly done, so that is a relief. I went to visit one of my best friends so I could get my hair done. I decided to go a bit darker, so I won’t have to come in as often for touch ups. I keep checking my bank account, and between the cost of the hotel and flights for our upcoming trip to our LLMD, it was a big hit to the wallet. I am very thankful that I am no longer traveling there every month, as I had to when I was on my IV treatments. Any way I can save a bit is worth it!

I ended up watching my “About Me” video on my blog that day. If you haven’t seen it, you really should. Go now! Watch it!  Okay… well maybe read the rest of today’s entry first. But then watch it! No Lyme patient is the same, but as you will see, neurologically, one of my strong symptoms was rather unique. The tics. The yelling. The clapping. The “shhh-ing”.

I have moments that I am stuck on being stuck, and I don’t put everything in perspective as to how bad things really were, and how much progress I have actually made from the beginning of this journey. I guess sometimes it is good for me to watch the video, to remind me that although I have hit some big road blocks and went backward, I was much worse than I am now. There has been tremendous progress.

As I have said before, if you can feel every bit of this, can describe your pain and symptoms, and can acknowledge that you are sick, you are still okay.

When you are literally helpless, truly have no idea and unaware of how sick you actually are, and no longer “there”, and about a vegetative state, needing a caregiver but are oblivious about it all, then you are not okay. At one point, I was very not okay.

Now, although things still suck unbelievably, I still have a voice. Although I don’t feel okay, obviously I don’t, and I know many of you are plagued and are suffering as well, many of us are still okay. Just unimaginably sucky. A situation that unless you are living it, you really have no idea. That makes sense, kind of sort of, right?

Friday was an interesting day. I got a phone call from my GP, I should note a week and a half after I demanded to be drug tested, and I was told they finally called in my order, likely a very basic test, but they were told Dr S ordered it. A full panel. No half-assed playing games. Getting er’ done.

THEN, they said they really want copies of my results. HA! Yup.. Everyone apparently thinks I am some sort of crazy drug addict.

I still haven’t gotten my results back yet, at least it is not showing up on the portal, which can be kind of slow at updating, but when I get my results in, I am really going to try hard not to write a big, “EFF OFF”, or “I FRIGGIN TOLD YOU SO”.

That probably won’t go over too well. Kimmiecakes is going to have to be a mature young lady on this. It will be pretty darn difficult, but I just want this all to be done with, the accusations, and my name to be cleared.

I felt pretty yucky that day. I don’t know if it was a flare, a late herx, which can happen after a round of Coartem several days later, or just overdoing it for me.

Overdoing it by basically doing nothing. I had to press my heart monitor, as sitting down at the office, it felt as though my heart was racing and I was having chest pains. My heart rate wasn’t really going crazy, it was around 120, but something was going on.

I was dizzy, nauseated (I am not sure why I still have nausea OFF treatment), and just wanted to go home and lay on the couch and take a nap. I was bummed, because I really wanted to go out to dinner that evening, but needless to say, it wasn’t a good idea.

My tics were really bad that night. Hand raising, “Bahs”… my brain was going haywire. Dave jokingly sat beside me, asking, “Do you have a question?” and a few “Simmer down over there!”‘ comments.

I ended up sitting on my hands and that seemed to help a little bit. It is really hard when I am having these episodes. It is like trying to hold in a sneeze. Also, I have noticed trying to hold them in, everything goes apeshit and I have a massive amount of tics.

In public when it happens, although I want to hold them in when I am having them, it is just so much easier to do it and get it over with. Not that I have any control over it, but I would rather let out a single event, than have several in a row because of holding it in. It is like my body builds it up and I can feel it getting heavier and heavier. Although annoying, it is much better than actually feeling like crap.

The tics have certainly been worse the past few weeks. Losing the skin on my hands at the office and my full blown little episodes, at the salon, a lot at home. I am not really sure why.

A very long time ago, before I started to see my current LLMD, my local Lyme literate naturopath had a conversation about my case, and it was concluded that Bartonella was the culprit, and at the time, my protocol was completely changed to focus on that particular coinfection.

Yesterday, I vacuumed in the morning before I went to work, and really messed up my hip. It hasn’t been quite right since my fall last month. I know the muscles are still tight, even though my massage therapist seems to be helping it, and I visited Dr S for an adjustment, it almost feels like bone on bone rubbing. I went to work, uncomfortable sitting at the computer, and waddled around like a penguin to get the mail. At least I didn’t have to attempt to go to the store, we had plenty of leftovers for dinner.

Dave was gone for the day, going to a wheeling event and a potluck dinner a few hours away. He always feels like I am mad at him for going on his trips, but I am really happy that he has a hobby, it probably keeps him sane dealing with me. It is great that he has found something he really loves to do for fun. He needs it.

I do however feel lonely when he is gone, and my mind likes to act up. I am much better off than I was for the past few months, but a sadness kicks in. I began thinking to myself that no one every asks me to do anything anymore unless Dave is there with me. Picking me up for dinner, or something simple really isn’t out of the way, as I am only a few minutes from town. Dave has even told me if I got invited somewhere he would gladly drop me off and pick me up. I need to be invited for that to happen though.

I kind of feel left out. Maybe it is a Dave needs to be my babysitter sort of thing, I don’t know. I know it isn’t intentional, but it still hurts.  It is one of the realities of having a chronic illness. *sigh*

It was a beautiful day, so I ended up sitting outside for a bit to get a little sun, watching the dogs play, and did a Kimmiecakes version of a batch of laundry. The clothes go in my “clean hamper” that we live out of. The positive of this: no folding. The negative: we basically wear the same thing everyday because we grab whatever is on the top of our clean hamper.

The rest of the day was spend napping and watching a few Lifetime movies. I was glad when Dave came home, as he laid next to me on the couch, telling me all about his trip. He took a look at me after telling me about his trip, and said to me, “You look like a train wreck”. Umm thanks? I love you too?

He was right though. My hair was stringy like spaghetti, my face looked like a greasy french fry. I probably smelled a little ripe. Haha. I am in dire need of a pedicure. Hmm.. maybe that will be Dave’s job tonight?

He is not mean, I promise you that, just honest. He sometimes just needs to give me gentle reminders. I have a great guy though, he loves me unconditionally. Even when I am pretty yucky he will lay with me.

It is pretty sad that a grown woman needs to be told and reminded of this, especially because I was the one that use to always be squeaky clean, always had perfectly done hair, nails were always done, and I spent my time doing my makeup. Those days have been gone for a very long time now.

Yup. A shower was on my list of things to do. As many of you know that are dealing with a chronic illness, showering is a completely tiring and sometimes even a daunting task. It takes up several spoons. For me, it is really difficult especially having water sensitivities.

Not being able to tell hot from cold, and my body temperature cannot be regulated. I have no idea why, and not a single doctor has been able to figure out why with scorching hot water, my body temperature has dropped to the 95’s. A weird medical mystery. This has gotten better, with the exception of telling hot from cold, but it is still there.

Today I took my shower. I feel like a whole new woman! Since I had the day off, Dave and I went out to breakfast. I had one of my “waves” when I instantly felt out of it, everything I looked at seemed glazed over like frosted glass, and felt like my body was an inferno, then realized I completely forgot to take my seizure meds.

I am assuming that was a big reason why. At least after a few minutes this feeling subsided, and I felt a little more like my usual self again. It is the worst when I have to go and sit in the car while Dave has to go ask for the bill, box up our stuff and we have to suddenly leave. As you can tell, this has happened a time or two.

Unfortunately, my endometriosis pain has seemed to come back. The Lupron has finally begun to wear off. I have an appointment with my gynecologist next month, and I need to decide what to do. Surgery might be in my future, but I think I will wait until winter to do anything. I don’t want to be down for the count during the summer.

It takes a long time for me to heal, and my body hates me. I just want to try to enjoy summertime, and I want to take a trip to the ocean very badly. Although I don’t think I will be able to walk the entire beach like I did when I first finished my IVs, I will do my darndest!

Dave has been working on his truck, and went grocery shopping as it was really busy so it was just better for me to stay home, and I did some cleaning. It is nowhere near what I would like to have done, but a big improvement. Best of all, we have a fresh clean bed now. For some reason making the bed is really hard for me to do. I would think sweeping or vacuuming would be harder on the body.

I then went into town to go to the bank because he didn’t bring his paycheck to deposit. Most importantly, I needed another cup of coffee, as our waitress was rather slacking on the coffee refills. 😦 Boo. This was all a lot for me! I am tired and pretty sore now, but I feel like I actually accomplished something today. It put a smile on my face.

It is too hot for me to sit outside this afternoon, as I have a hard time breathing and get light headed, even drinking plenty of water, so the rest of the day will be spent inside with the AC cranking.

I am one week down without treatment, and one to go! My LLMD appointment is right around the corner. This week I hope to have great news to bring to my appointment about how this week goes!  Wish me luck!

Have a great Sunday everyone!

April Part 5- Another Three Days

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The few days after my three days of treatment were basically a herx from hell. As you know, I like to juice the following days after my treatments, to help detox all the buggers and toxins out of me. Unfortunately,the antibiotics hit me really hard with nausea…the kind you feel in the pit of your stomach, you keep burping, and your mouth waters (the fun kind), so I ended up breaking the cardinal rule of juicing and had some soup along with my juices.

I had high hopes it would help with some of the nausea. It did later on in the evening, which is great, since going to bed nauseas is a terrible feeling. The past few days were ones that I wanted nothing more then to just throw up and get it out of my system. I usually feel a whole lot better once that is said and done. I didn’t get that lucky though.

Friday was my first day that I started treatment back up. Since I hadn’t remotely recovered from the first three days, I was dreading it. I started off strong at least. My coworker came into the office to talk to me and said I looked much better. Whoop whoop! I guess it is nice to still receive compliments, even though I feel rotten on the inside. As I have written in the past however, it is kind of a double edged sword having an invisible illness versus a visible illness.

The atomic bomb that I had been waiting for hit me several hours after I had expected. On my way to run a few errands, for work and for myself, I had a brief lapse of time (my mind wandered off somewhere), and I completely forgot where I was driving. I completely forgot where I was. I go on this road every single day, but it sent me into a moment of panic because nothing seemed familiar. I could have been halfway across the country for all I knew. Okay, that might be an exaggeration, but nonetheless, it is a frightening experience. After a few minutes, I finally recognized one of the town buildings and my wandering mind came back to me. Phew.

I opted for the drive thru at the bank for work, and then headed into town to go to the pharmacy, pick up a few things at the store for dinner, and cash my paycheck. I could feel myself getting sweaty, my heart racing, and the dizziness kicking in while I was running my errands. I sat in my car for a few minutes to “compose myself” to make the short drive home, and began to back out of my spot to leave.

The parking lot was full. Not a single spot was open. A white car swung behind me, and I was assuming he was going to take my spot (the parking lot is pretty tight at this tiny shopping area) so he would have a spot. I proceeded to back out, And he went over the curb at the bank, trying to get by me, nearly hitting my car. With my windows down, I started yelling at him, that he would have “effing waited for two seconds then he would have had a spot”. Only I used the f-word. 😮 Then, I continued to back out and go, and he was blocking the entire area to pass, parking in the middle of the lot, where there was a giant sign that said “Fedex Parking Only”.

“Learn how to effing read you fat f word!” I continued on with my rantings until he moved. No one even got out of the car, he was just chilling, waiting to get a spot, a spot he could have had if he had not waited the two seconds and drive around me, going over the curb at the bank, and just being a moron. Roar.

Once I got home, I looked at the passenger seat to grab the rest of my medications, and there was no pharmacy bag. Damnit. I forgot to go to the pharmacy. Right next to the bank and the store. What is wrong with me?

I think I can wait until next week. I have enough medications to get by, and here is just round TWO of what I had picked up for the week. Nom nom nom.
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This seems to be a common occurrence when Cipro is part of my protocol. (I don’t need to hear the dangers of Cipro and will not argue, I am aware of them. Everyone should know the dangers and information about ANY antibiotic they take and use their own judgements.) I think Bartonella causes a lot of emotions to come out, rage being the strongest one.

It has also brought out past memories that I hid deep down inside of me for years that has made me relive them all, as well as leave me with paranoia and depression. Is that terrible? Yes. But I will tell you, overall, I function much better and see the most improvements in myself with this particular part of my protocol. Once the emotional stuff dissipates, I feel like it is so worth it.

The second day of treatment went pretty well. I accomplished a lot, from work, to cleaning, to going to the store by myself to rent a movie, going for a ride with Dave to Tractor Supply to pick up tick preventatives for the dogs, and we even went out for dinner! For a treatment day, well, any day, this is an amazing feat.

I was kind of bummed that once we put in the movie when we got home, I crashed and fell right asleep. Dave kept trying to wake me up since we had been trying to rent this movie for several weeks but it had always been rented by someone else and knew I wanted to see it, but there is no waking Kimmiecakes once she is out. Bummer.

Today is my last day of treatment, then I will have to plan accordingly to see how my mini surgical procedure goes on Tuesday to start my next three day part of my treatment. To be honest, I am starting to get nervous.

Not because of the procedure itself, but the drive there and finding the hospital, (I’m aware I’m weird”) to how I will do after the procedure (My last procedure because of the havoc my body isn’t used to resulted in two seizures), to if it will be a complete waste of time, and they will find nothing. No answers or missing pieces of the puzzle. Goosefraba.

I have done extremely well today. One of my antibiotics (You already know I will never share my full protocols, I am secretive like that 😉 ) like I said, seems to help me a lot. I did sleep in a little longer this morning, but not only did Dave treat me to breakfast, I also helped him grocery shop! I didn’t even need to hold onto anything until we were about to reach the register!

When I got home, I did a batch of laundry, and tackled folding all of my “clean clothes hampers”…. because I never fold my laundry and take care of it, they just sit in hampers for me to pick out of, or I will pick clean clothes out of the dryer, scrubbed my kitchen. It is springtime, and that means those little asshole ants like to hang out on the kitchen counter. Everything is sparkly in there now, so fingers crossed this did the trick. I picked up a bit around the house, and took care of my empty pill bottles lying around the house. High five to me. Lots of medications, and I am kicking ass.

I am in a lot of pain, but I really don’t feel any fogginess. That is a great feeling. As I have explained to Dr J, I would rather go everyday of my life in pain, if I could have a clear mind again. Obviously, I would like everything to be better, but having my mind back is a big priority, and being able to do everyday tasks and go on living an at least close to normal life is my goal. Having a little bit of blue sky moments gives me a lot of hope that I will get there, and my moment will come.

I’ll try to write after my procedure to update you all on how it went. Wish me luck!

******And on another note, they’re back folks. See how tiny that deer tick is?! That tiny tick can change your life forever. It certainly changed mine.
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Dave was doing a little yard work and this little blood sucker was crawling around on his side. Now we are checking our doggies, got frontline, and Dave has been doing continuous yard work weed whacking and leaf blowing to try to keep the yard more clear.

Share share share!!!!!!!!!  Knowledge is power people! If you can at least educate one person, that is one person that might share with another person and so on and so on. Let us bring as much awareness to others about this awful disease.

-Tick prevention :      https://kimmiecakeskickslyme.wordpress.com/2013/08/05/tick-prevention/

-Facts about lyme disease      https://kimmiecakeskickslyme.wordpress.com/2013/07/22/facts-you-may-not-know-about-lyme-disease/

-Information about coinfections (great info because so many people have no knowledge that ticks come with many other diseases!!)     https://kimmiecakeskickslyme.wordpress.com/2013/08/29/lets-talk-about-co-infections/

April Part 3 – Appointment Day

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It has been a long time since my last trip to DC. I really didn’t have any expectations when I went, since I have been “stuck” as you all know from reading my posts (you have been reading my posts haven’t you??!!!) for a very long time. I had no clue what the game plan was going to be during my visit. No expectations is a good thing though, as you aren’t really going to leave your appointment with any feelings of disappointment or discouragement.

Friday was a very long day. In order to save money, Dave and I fly out of Boston in the morning, go to my appointment, and fly right back, then drive back home. Navigating through the airport is pretty tough, especially having our taxi drop us off at the wrong side of the airport. I certainly got my exercise in for the day. I did a lot better than my recent trip to Walmart however, as the lights aren’t nearly as bad, and there isn’t any weird toxic smells.

I was hoping for good weather, since it had just snowed again here in New Hampshire, and was happy that although it was suppose to rain, it would be 80 degrees out. YES! But, of course the weatherman lied and it was in the 50’s. That bastard. At least during our little walk to the doctors office it wasn’t pouring rain.

I left my appointment feeling like I was in a good place. We went through my notes about how I have been feeling, the plans of the implanted heart monitor, and my Lupron injection. I was very happy that my doctor was on board with everything, which was one of my worries. That is one big downfall of being treated by an army. One doctor says one thing, another says something completely different. Phew. We are all on the same page.

My LLMD’s belief about my heart issue is that it is possibly dysautonomia, or POTS. I did my standard mini check up, and my blood pressure was low. I have known in the past for my blood pressure to occasionally be low, but apparently I have more of a history of it being low. He gave me a prescription of midodrine, instead of the prescription that my general practitioner gave me, in hopes it will help with my feet and raise my blood pressure a bit. His thought is that I might actually get dizzier and more lightheaded with the general practitioner’s medication choice. From a Lyme standpoint, I take my LLMD’s opinion more heavily, so that is what I will take, and see if there is any improvement.

It was requested that I get a blood pressure cuff to keep track of it, and I will have to get on the ball to pick one up. I just dropped off my 18,000 (I may be exaggerating a bit) at the pharmacy and of course forgot, even though they are right in the front of the store in plain sight. Lyme brain.

This new medication will also help with my feet issues, with them being so blue with poor circulation. He explained to me when I get up and stand, the blood is still all pooled in my feet and not circulating around, so that will make my blood pressure lower and I will be symptomatic or have an arrhythmia. I suppose that makes sense.

My liver and spleen are now more enlarged than last time, and he thinks that Babesia is the culprit. I am on the maximum protocol he gives, and with just a teensy bit of tweaking, I will remain on the same treatment, in hopes that the Babesia will clear, my liver and spleen will go back to normal, and I will feel better. Same as always, I am still having a lot of neurological issues. That was a given.

I was kind of bummed that because my liver and spleen are enlarged, I cannot do a phone conference with my next appointment. It is really nice to save the money on travel. It will be summertime when I go back, and I am hoping that I will see big improvements over the next several months and be able to do some exploring while I am down there.

The next few months will basically be trial and error seeing if anything shows up on the heart monitor, how I react to the new medication, and if I can continue to kill those little buggers.

The LLMD believes that what happened with my Babesia relapse is that my tissues and brain were never healed to begin with when I had done nearly a year of Babesia treatment, and when I stopped the infection reactivated, and alongside my Lactoferrin and Xylitol protocol, everything went loose, and that is why everything came back and I had such a strong relapse.

He left me feeling good, that I was truly heard, and I am really hoping that all my ducks will be in a row, and things will fall into place. Being “stuck” is really getting old. I am sure there are a lot of you out there that are in the same boat.

My advice to you is to seek others opinions (you don’t even need to use that “L” word that so many doctors disagree with), and try to pinpoint symptoms. Seek out anyone really. Listen to another LLMD, an LLND, your GP, cardiologist, gynecologist, neurologist…. Sometimes it takes a fresh set of eyes to review your medical history and symptoms. This theory of mine seems to have been one of the best decisions I have made as I feel I am a step closer to getting this long, drawn out puzzle solved.

Wishing you all a good weekend!

Oh! Almost forgot my classic thumbs up pose at the Doctor’s office! 11129945_10152835203872404_7910669511512882925_o

March Part 1 – Only the Good Matters

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The past several days has had its good and bad moments. I have finished up my round of Coartem, and there has still been some lingering Babesia symptoms. One of my symptoms that has stuck around is the wonderful hot flashes. All week, I have had the windows rolled down on my way to work in negative degree temperatures. I could feel myself becoming an inferno, the inside of my body beginning to boil. Okay… I know that really wasn’t happening, but being forgetful about putting on deodorant and feeling the sweat on my forehead, it certainly felt like it.

I become very emotional on Coartem. There has been times I have cried the entire time on this treatment, and times that I have been full of rage. In combination with complete brain fog, the results can be pretty bad. Lyme brain moment number one: I lost a lot of money at work. A lot. I went to the bank to make a deposit, and of course it wasn’t there. I called the boss man (aka my Dad), and asked him if it was on my desk. He was looking for it, and I immediately jumped to the conclusion that someone stole it out of my car. I WAS ROBBED! I began freaking out, becoming defensive.. and all around turned into bitch mode, even though it was completely my fault. Unless I was robbed. Which I wasn’t.

A phone call later, it was indeed on my desk. In some random place, underneath my pile of unorganized chaotic papers. Phew. I felt like an idiot, and having boo-boos like this at work really sucks, as it definitely gives my Dad less faith in how well I do at my job. Oy.

Lyme brain moment number two: Our guys finished up their deliveries for the day, and they handed me the invoices to enter into the computer. I gathered up the invoices and put them in order to enter the information.

HALF THE INVOICES WERE MISSING!!!!!!! I immediately got into Kimmiecakes angry mode, stomping out to the guys while they were cleaning out the trucks, and accused them of losing the papers and came back into the office, wondering what I was suppose to do about the missing invoices. One of the guys came into the office, and went through all the papers, telling me they were all there. “No, they aren’t!!!”

About ten seconds later, he showed me that they were in my stack of papers, I just put them in the wrong order. Not missing. I was just having a complete brain fart. At least they were really nice about it, and weren’t pissed at me for my accusations.

I have had edema this week. It was extremely painful, and my feet were bright red and blue. You could press on my toes, and the white color would stay there. I had absolutely no circulation in my feet.

I had my Mom check out my legs as it is kind of hard to tell looking straight down at my legs, and my left thigh and my right calf were swollen. It felt like my legs were going to explode as it felt like there was a ton of pressure in my legs. She was really concerned about my feet, and so I have been wearing my microwavable booties at night, fuzzy socks, elevating my legs every time I lay down and putting Dave to work rubbing my feet and legs.

My weight had continued to go up a bit, so I think these issues are all a result of my recent Lupron injection. This all scared me, as I have had organ issues throughout my treatment. I decided it was best to get some safety blood work done with my “frequent flyer” blood work card, and found nothing extremely out of the ordinary. My glucose was a bit high as well as my creatinine (maybe kidneys?), but not anything to worry about. My liver actually seems to be doing much better (hooray!). My sodium was a bit low, but I think that is a result of drinking a lot of water trying to get rid of what I think is some major water retention.

After doing a bit of research, I have learned that drinking more water can help with the water retention, and that can also cause a lot of weight gain. I was determined to get rid of the edema in my leg and thigh, and had my fingers crossed I could stop myself from getting fat.

I had to have drank 6 or 7 bottles of water, and although I felt bloaty, I hoped when I woke up in the morning I would lose some weight. It worked! I have lost 3 pounds of my rapid weight gain. I also no longer have edema in my legs. A major bonus. There is no more pain. I am now back to not feeling my calves and feet. At least I know that is neurological, and if I were to choose, I would rather have noodle legs than the pressure and excruciating pain.

I have been kind of in hiding, having intentions of running more errands and visiting my best friend at work, but once I have been done work, I have been feeling unmotivated, and have headed straight home. Within a few hours, I have been falling asleep. Dr J has told me that I need at least 12 hours of sleep a day, and I have been surpassing his recommendation.

My worst moment was Thursday night, when I decided I needed a good hair washing. This is a rather daunting task for me. I have been braving it with my showers, no longer having Dave babysit me. I feel embarrassed, and it reminds me of the days that he had to bathe me, pull me out of the tub, dry me off, and dress me. I hate being babysat. Feeling like I was a little stronger, I have been taking showers without supervision.

I was wrong. I got to the point of just about finishing my wash, trying to rinse the conditioner out of my hair, and felt my legs beginning to buckle, and everything began to turn black. I knew I had about 10 seconds to get the hell out of there, and once that timer went off, I was toast. I collapsed on Dave’s dirty pile of clothes (he works in a dirt pit… so they are rather gross… obviously covered in dirt, as well as oil, grease, fuel…) as well as my sweaty clothes.

Once I came to, I found myself sopping wet, laying on these clothes, unable to get up or move. My face was smeared on Dave’s work pants, and I was unable to lift my head. My legs didn’t want to move. I was stuck, and cold. I tried calling out to Dave, but my voice didn’t want to project enough for him to hear me. And so I laid. After what seemed like an eternity, I got enough strength to get up, dry off and put on my pajamas, take my seizure and sleeping meds, and get into bed. I just might still need a babysitter. 😦

This weekend I have been really proud of myself, and I feel like things have turned around a bit. I have been able to sleep in. No interruptions, and a fully recuperative sleep. I cannot emphasize the importance of a good nights rest in healing. Dr J’s PA was right, this will make a huge difference in my progress.

I worked yesterday, and did a little bit of extra work so I could start a new project at work… organizing my desk and file cabinet (Daa daaa DAAAAAA!!!). I was a little tired after my few hours of work, but was determined to have a good night out with my friends that I have not seen in a very long time. I rested for the rest of the afternoon, molding into the couch, and got ready and off we went.

I did so well at the restaurant we went to. I get exhausted with a long car ride (the restaurant was about 45 minutes away), and although I felt a little loopy, I was doing okay. During dinner and catching up with everyone, having a good time, I thought to myself for once, no one would know I was sick. Although I knew I had “tired eyes”, I looked normal. I sounded normal. I didn’t stutter or tic. I was so happy that it was a night that I couldn’t wait for the bill to come so I could go home and lay down. I was happy that I could actually enjoy myself.

Today I also got to sleep in. Today is the one Sunday I get off a month. I have accomplished so much. I got ready and decided to have Dave take me grocery shopping. It was a success. Then Dave and I made a deal with a task I have been putting off as long as possible. Dave would sweep, wash, and vacuum, while I folded the massive pile of clean laundry, and sorted through my clothes, making piles of clothes to donate, and items to throw away.

You can walk into my closet now! I ended up with bags upon bags to donate and throw away. Even though Dave protested in fear that I would have an emotional rage, I modeled several pairs of pants for him to see what truly fit. I am no longer 105 pounds anymore, and I highly doubt I will ever be that weight again, so those went to the donation pile. So many pairs of pants I could not get above my butt any longer, and there were some pants that Dave gave me the thumbs up. Project of the day: done. And without tears! If you have read my past blogs, I get overly attached to clothes, and generally end up crying when I get rid of anything. I did great. I feel like a productive person, even though that probably sounds silly to many of you. The past few days have been huge for me.

It is now time to rest, and luckily my Dad made dinner for us to take home. My body is paying for my accomplishments, but I honestly don’t care. Everything has been worth it to me, even if I screw myself for the next several days. Pushing myself has paid off. Sometimes if you want to do something do it, I promise the payoff will always be better than the punishment.

I only have one more round of treatment until my next appointment, so this is a make or break few weeks. Maybe this will be my time that things are really turning around for the good. It needs to be my time. I really think it is.

February Part 6 – Those Four Words

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I am finishing up the last week of the fifth round of my protocol. I have been really busy, and really tired, emotionally and physically. There have been a lot of naps. After several phone calls, I finally found a huge discount on my three month Lupron shot. I was freaking out for the past two weeks, but I ended up getting my prescription on Friday. The prescription that I am really hoping will be my answer to my gynecological issues.

No more feeling like I am going to throw up or pass out in pain, the beginning of an intimate relationship again. It has been a lonnnnggggg time, and needless to say Dave has been beyond patient with this major issue of our relationship. Even though marriage is meant to be for better or for worse, I give Dave kudos for putting up with this terrible symptom of what the consensus seems to be endometriosis.

Friday was my last day of heavy antibiotics, and I had a lot to do. I worked in the morning, and with Dave working the night shift and having the rest of the day off, he offered to take me to Walmart to pick up my Lupron injection.

As soon as I got home from work, the bank, and my local pharmacy, Dave told me I was going to drive to Walmart. Um… what? I haven’t driven that far, about 30-35 minutes away, but I was determined to do it. At least I had Dave as a passenger, and he told me to at least try, and if I couldn’t do it, he could take over. I was having a bit of a hard time with controlling my speed (I was driving like an old lady about 5 mph under the speed limit), but made it in one piece. Even a drive like that wiped me out. It was completely draining. However, I made it, and that is all that mattered.

I leaned on the counter with my handful of coupons, hoping to get some more money knocked off of my script, and they told me to have a seat, as they could tell I was pooped and they told me it could take awhile. When the pharmacist called me up to the register, I got a grand total of 800$ off. Wowza! I still had to pay nearly 3 grand which is absolutely disgusting but shopping around was definitely worth it.

I called the doctor’s office, and they could fit me in to administer my shot. Done. I haven’t noticed much of a difference yet, except for the fun side effect of rapid weight gain and turning into a pile of sweat. That could possibly be Babesia, or could be menopause-like symptom of the shot. Having Lyme and coinfections, many symptoms overlap, so it really can be impossible to tell.

Saturday I went on a mini cleaning spree as I had a bit of energy (yay!). I changed the bed, swept, and vacuumed. Gold star to me! We ended up staying at home due to it snowing yet again, and watched a few movies on TV. Good enough for me, as I know that overdoing it seems to be my specialty. Doing what I had done in the past few days was really an accomplishment, and I feel like this second week has been much easier than the past several rounds. This gives me a lot of hope and is keeping me really positive that after these long several months, treatment is beginning to work.

Sunday. My emotional day. My “you really look like you need to get some sleep day”, worst of all, my fat day.

If you have followed my blog (you are crazy not to, I am awesome), you know my background of having major body issues. I remember when it all first began, an overnight 6th grade trip. There was a pool. I looked in the mirror and saw nothing but fat. I bicycled, watched what I ate, and obsessed about not being chunky in front of the other kids.

I have had periods of anorexia, periods of binging and purging. Periods that I was up to 6 Dulcolax a day, but gave up on that once I would no longer “go” even with that amount of pills. Times that the gym was a second home of mine. I also have had years of the polar opposite, eating piles of food and throwing back beer after beer.

My weight has fluctuated a lot in the many years. I have been from 180 to 115, back up to around 170, down to 105, up to 140 on the IV treatments, down to 128 when I relapsed, and have crept up to 130-132.

A read for you:  Lyme and Weight https://kimmiecakeskickslyme.wordpress.com/2013/10/09/lyme-and-our-weight/

I have now reached 138. A six pound gain in two days. TWO DAYS. One of the side effects of my injection that I have read to notify your doctor is rapid weight gain, so I am waiting it out, counting every calorie like I have done on my little notepads, and just seeing what happens. I almost think that this is one of my ways that I have coped with bad things in my life. Things I have no control over. What you eat is one thing that you can have control over, and maybe it makes me feel like I have more power. I don’t know if this is a just plain “mental” issue of mine, or if something like Bartonella, which likes to play a lot of mind games with me has anything to do with it. I’ll never really know.

Either way, I really hope I don’t blow up like a balloon. Ugh.

All I can think of is six pounds of deli meat. That is what I always think of when it comes to pounds. Deli meat. Deli meat sitting on a counter. Call me a weirdo for this analogy, whatever. This is what has happened in just two days. Gag.

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Okay. Now you are up to speed. On Sunday morning I hopped onto the scale, like I always do, and saw the six pound weight gain. I got on and off the scale several times, hoping I was just reading it wrong. Nope. Six pounds. Something like this is devastating to me. I whined to Dave, telling him I was going to get fatter and fatter. I told him of the horror stories I had read of people gaining over 50 pounds in their three months of having their injection.

Feeling down, I headed off to the gas station to grab my coffee and go to work. I saw a man that I haven’t seen in a long time, and said hello. The last time he saw me, I was skeletal looking, with my collar bones protruding, my face gaunt and fifty shades of yellow and grey, and a size 0-3 in my junior sizes. I know he meant well, but the four words that came out of his mouth broke my spirit for the day.

“Wow, you’ve gained weight!”

I know it was with good intentions since he had seen me in my very sickly looking state, but talk about terrible timing. A lesson to all you men: NEVER say anything about a woman’s weight. Even “you’ve lost weight” still implies that you thought she was fat. Still not great. A totally safe thing to say is: “you look good.” Keep that in mind boys. Girls too, who feel compelled to comment on your weight. I kind of wanted to punch him in the throat hole.

I pouted for the rest of the day, and bought all healthy low calorie foods for the week to monitor what is going on. I will be researching natural ways to combat water retention. Maybe look at moo moos on Amazon and put them in my cart and save them for later.

I am still keeping the eye on the prize, feeling much better, but this is driving me batty. I can’t help but think that maybe Lupron works to get rid of sex pains because you gain so much weight that no one would possibly want to have sex with you. LOL  Eye on the prize, eye on the prize.

Today is the first day of my final week of treatment, Coartem week. This week is either the worst week of all, or not so bad. Once again, I think some of my treatment is being effective, as I am not having a tremendous reaction to it. I feel slightly loopy and achy, but this is entirely tolerable. Goodbye Babesia? Wishful thinking. I still have a lot of symptoms of Babesia, but compared to days that I have sat like a vegetable staring at the TV Guide the entire time Dave was at work and never moved, this is amazing. Slowly but surely I know things will turn around.

Two more days until I have my 2 1/2 week break from treatment. Let’s hope that this break goes smooth, the true test of if there is a true improvement. I really think there will be.