Year 5 – What I Have Learned Living With Chronic Illness

I have recently reached my 5th year anniversary of my diagnosis of Lyme disease and the start of my treatment. Hooray? Not really.

I walked into my naturopath’s office with a bum leg, and a previous diagnosis of Fibromyalgia, CFS, and IBS. I went through my life story and within about 10 minutes of playing my violins, I heard the words, “You have Lyme”.

I was thinking in my head, “Yes! Oh thank God! It’s only Lyme!”. He then stepped out of the room for a minute and came back with a baggie of supplements. I think there were three or four bottles he gave to me that day, which is absolutely nothing in the Lyme world. The second I left his office and began to drive away, I bawled my eyes out. Not only did I bawl my eyes out, I ended up having that ugly cry. You know what I mean.. hyperventilating, snots and and all. That little baggy of supplements scared me.

If I only knew what was yet to come in the next five years of my Lyme journey.

Although he said those dreadful words, “You have Lyme”, we did testing to confirm the clinical diagnosis. He ordered a script of doxycycline to provoke the test and I took it for a couple weeks. It was awful, but in that period of time I was still thinking that after a month I would be myself again. It didn’t work out that way, that’s for damn sure.

I think the test came back relatively quickly and I got an email from my doctor that went as follows…

“Hi Kim. I got the results on the lab work today.

You had a POSITIVE Lyme IgM western blot. It was positive by both IDSA and ILADS guidelines (wow).

So, you have Borrelia and everyone is going to agree on that.

What people won’t agree on is the treatment.

You have an appointment on Friday at 3:30.

I highly encourage you to bring your husband and maybe father to that appointment to hear it all.

I’m glad the labs were clearly conclusive.  I’m sorry things are the way they are, but at least you know what direction to go.”

What the fuck was he talking about??!! People won’t agree on my treatment???! Well, that is just one thing I have learned about chronic illness, especially having one that doesn’t exist, according to the medical industry. The way people are treated with Lyme is absolutely disgusting.

I won’t bore you with an entire five year summary. Okay not that I would bore you because let’s face it, I am awesome, and you should read my story.

Anywho, I wrote a blog a few years ago about the things I have learned having a chronic illness and figured I would see if I felt differently as our thoughts and opinions change over time and we always are learning new things. This article applies to anyone suffering from a chronic illness, not only Lyme. I bet all of you that are suffering can completely relate.

As you know, I also have several tick-borne coinfections, and have opportunist infections, like chronic EBV. I have Narcolepsy, Rhythmic movement disorder, Myoclonus, Tourette’s syndrome, and POTS. I am sure I am missing some, but you get the point. A laundry list of shit.

I am hoping that some of my many issues will improve over time. I will say however, it is important to not blame everything on Lyme. I know some things aren’t Lyme related, although these buggers could have released some of these demons. I’ll never really know for sure.

Tourette’s syndrome and my other involuntary movements are annoying, but at least they don’t actually make me feel bad. PEOPLE can make me feel bad, not the actual disorders themselves.

Lyme sucks. Narcolepsy sucks. POTS sucks. All can be completely disabling to the patient. Not to mention it has all been very expensive. Fortunately for me, I am much better off than I once was. I still have a long way to go, but I am getting there little by little. It’s a friggin’ process. I’ve just had to learn to enjoy the ride. *Sarcasm*

I have learned a lot of things over the years. A lot I could have done without and been completely okay with it. Shitty life lessons. I’m sure many of you have heard the classic phrase, “Everything happens for a reason”. NOPE! Sorry, but it doesn’t.

Bad things happen to good people. Did the guy in the clouds want me to come out of this as a better person? I did steal a $7 mood ring from Walmart once. Maybe this is my punishment. So, let’s not say things like that. We’ll touch base with this thought later. I am a scatterbrain.

How you feel can change in an instant – Anyone living with a chronic illness understands this. I have learned my better time frames of the day. Sometimes they change around a little bit but I am at my best between 10:00 a.m. and then crash at 1:00. I get a little oomph back from 3:00 to 4:00. I seem to accomplish more during these time frames and have a handful of spoons. I know that is two time frames I mentioned, the spoons just had to cycle through the dishwasher and I was able to grab a few more haha. Don’t know what I mean by having spoons? Read an article, you can find it on Google, called “The Spoon Theory”. This read can give you a general very basic idea how it can be a struggle to get through the day having a chronic illness.

If I go out to dinner, or try to pick up the house and clean, even sometimes just sitting on the couch, I can go from okay to bad very quickly, sometimes with no rhyme or reason. It can literally hit me like a wave. Maybe a giant tsunami wave.

I have found that I have triggers that can make how I feel change very quickly over the years. The biggest for me personally is lights and overstimulation. I cannot handle bright flashing lights, fluorescent lights, or a lot of conversations around me. I have a very hard time with elevators and escalators, even though sometimes there is no other option because it would be impossible for me to make it up a flight of stairs.

With Narcolepsy, I cannot just sit for a minute without distractions. Well, even sometimes with distractions. There has been a lot of times that Dave has had to get my plate of food away from me so I don’t choke or end up wearing it. Knowing these triggers can be helpful, so you can try to avoid them.

It really is difficult making plans and committing to them not knowing how you will feel in the next week, day, or even hour. I try to “prep” myself by basically babying everything I do a few days in advance to try to go out and do something. Try my hardest to not overdo it. Even then sometimes it doesn’t work. You just never know.

You will find out half the people you know are secretly doctors – This is super aggravating. I have to try to remember though, most people have the best intentions for you. There will always be people that give you remedies because their Uncle’s second Cousin’s friend was sick, and he tried such and such and it worked, so it would definitely work for you. “Have you tried these mushrooms? They really would work!”

“A little sunshine, diet and exercise!”. “Have you tried…..”. Or, they blame your medications not understanding what herxing is, even if you have explained it a dozen times. Just smile and thank them, consider their advice if you choose, try not to diss their ideas, even if their cure involves jumping jacks and picked eggs, and move along.

Not only do some of these people have secret medical degrees, there are those who will also try to sell you shit! –

I have seen people prey on the sick in support groups. I get a lot of friend requests and also get a lot of private messages trying to get me to buy this and that. People that I happen to run into that happen to know that I am sick.

I know better, but there are a lot of people that are desperate to feel better and have little hope, and they end up get scammed. A good hint that these people know diddly squat and want your money is when they say something idiotic like, “This is an absolute CURE for your LYMES! You will be CURED with this 30 day program… for only $39.99.”

Ughhh. A) There is no cure, only remission and B) Lyme. Hold the “S”. That is also a big bold statement to tell someone. Be weary of anyone that tells you this, even doctors can do this to people. Yuck. If I just did that Shaun T 21 day fix that some random chick was trying to sell me on Facebook, I’d be better by now. 21 days for a “Lymes” cure isn’t too bad. Shame on me for not having an open mind on this one.

Some people will just not get it – As many of you know, my disease for a very long time was not even close to being an invisible illness. If you are not familiar with my story, check out the “About Me” link on the top of my blog page and watch my video. With it being visible, people knew without a doubt I was sick.

At one point, I had lost so much weight that I was down to 105 pounds. My collar and shoulder bones really stuck out, and you could see every rib of mine. I certainly passed the thigh gap test with flying colors. I was either 50 shades of gray, or jaundiced so I had a lovely tinge of yellow to my skin. I could barely walk and often had to be pushed around in my wheelchair. Not to mention all the involuntary outbursts and movements of all kinds. There was no denying that I was very ill at that point in time.

Now, my symptoms have become much less visible or nearly invisible on a lot of my better days. People that really know me will just know I am not feeling so hot by noticing little things, but for the most part I could pass to a lot of people as having an invisible illness as long as it isn’t a “Tourettesy” day. I am no longer like that 24/7. We’ve got it controlled a lot better without a doubt.

At my best, I would describe myself as looking like I had a fun night out when I wake up in the morning, with raccoon eyes, but otherwise I look like I am doing alright. I look “normal” to everyone who sees me. With this, people often will assume you are fine and officially better.

I have learned there is a huge misunderstanding surrounding invisible illnesses. Look good, feel good! What they don’t see is neurological battles, or levels of pain one may be dealing with. They don’t see extreme exhaustion. Anything that happens to be the struggle of the day. Most of us become great actors pretending we are fine and continuously keep a smile on our faces.

Those who don’t get it can and will say the dumbest shit to you. Not necessarily with bad intentions I should clarify once again. A lot of these things are from your secret doctors. I have to bite my tongue a lot. Chronic illness isn’t a cold or flu that goes away in a week. Chronic is chronic!

I have had the suggestion that I just need to go on a vacation. I just oversleep and that makes me more tired. Have a baby, stop taking my meds, just get off the couch and do something. That sunshine and exercise! If you would just….

The lovely feared comment that can make you feel the anger pressure building up in your body, the comment that just might make your head explode, “At least it’s not cancer”…. Thanks? I really think it is trying to help give comfort, but that totally minimizes what you are going through. Things like this prove your disease is just plain not understood.

Invisible illness can be really hard. I’ll leave it on the note, “You don’t get it until you get it”.  Also know that sometimes you cannot teach someone about your illness that is not open to it.

Chronic Lyme disease is controversial and misunderstood. You often find yourself talking to a brick wall. It will only hurt you in the end. You will always have someone that gives the comment when trying to explain things, “I get so tired too, it is such a dreary day!” No. That is not what we mean at all.

Pure exhaustion is when your body doesn’t even want to move, it is a struggle to keep your eyes open, and you have not had a restorative sleep for as long as you can possibly remember. This is very common with any chronic illness. Trying to explain brain fog, anything to get loved ones to understand what you are going through.

Educating people that don’t want to learn is pretty much impossible. Like I said, brick wall. I know a lot of people that try to talk to their families or friends, and they really don’t believe them. Or they don’t even take the initiative to know about the disease their family member or friend has. I’ve seen people try very hard to get their loved ones to watch “Under Our Skin”, and they won’t take an hour or so out of their lives to sit on their ass and watch a movie to learn a little. Try giving them a few articles that remain unread. Doctors more often than not are also not open to learning new information.

Instead of getting involved and learning, people will make assumptions, judge you, be rude, stare. It is best to just let things go as much as it can sting. This all sucks, but you just can’t force it upon people that don’t want to learn. You just can’t. Shaking it off and letting things go will make you much happier and less stressed. Stress = worsening of symptoms. Who wants that?

Once everything changes and you begin to get really sick and you are no longer able to go out or do the things you used to do, you will find out who is there for you, and who isn’t. Those people who you may have thought were your friends quickly turn to acquaintances. People who you thought would stick by your side literally vanish. Some people you believe that are great friends will listen and sit with you, but you will find that they are talking behind your back with judgements.

I once had a “friend” that I thought was one of the people in my life that would be there through thick and thin tell everyone that I was just being lazy and I pick and choose what I do. He even went to the extent of saying I bring things upon myself, like having seizures. I don’t know how this is possible, but that is just one example of what has been said about me.

Another “friend” who I thought would be there completely disappeared, only to show up at my house nearly a year later and asked me for money. Wha wha what??!!!

I get hurt when I sometimes no longer get invites. I often find myself wondering if it is me, if I am seen as burden, wondering if I have done something wrong. Depending on how I am doing, I either have no feelings at all and am out of it so I frankly do not give a shit, or because I don’t do a whole lot and couch it, it really eats away at me even though I try very hard to not over think and let things bother me.

Longer and longer down the road, you will find that pool dwindle down a little more, or you feel dynamics change. People may lose their families, or their marriages fall apart. It really sucks. Absolutely do yourself a favor, snip the fat if you need to. Sometimes it is just too much and you have to let go. I realize this can be certainly easier said than done. However, when there is negativity and stress in your life, it prevents you from healing.

There are still a lot of great people out there – I have found many good people come out of the woodwork and truly care about how I am doing. They genuinely want to help. Several people in my town came together and held a benefit for me when I first began to go to DC for my treatment. I was amazed, I felt blessed. I have a friend who would wash my hair twice a week the entire time I had my PICC and Powerline in. That is 16 months of a huge help. I would have had a hell of a time without her. She’s snuck into my house when I wasn’t home and cleaned it from top to bottom. It made my day… okay my entire week.

I have a friend that will just come over and chat with me, and we sit and watch movies. A friend who has taken me out for a cup of coffee. A friend that I have smoothie dates with. Friends that find articles relating to my illness and share them with me so I know they are thinking of me. All these little simple things are big things.

For all those bad people in your life, don’t forget that there are always people in your life that really do care. You are never really alone, even if you may feel like it. If you just want someone to talk to or offer support some days, utilize social media!

There are tons of great people out there that although we all have our different stories, they know and understand what you are going through. It is great to get advice and share things, as sometimes your loved ones cannot relate to this all.

I’ve made some good friends this way, including one of my now closest friends that happens to live nearby! It’s a small world, huh?!  She shares similar experiences, and I lucked out.. she is just as weird as I am, gets my twisted humor, and throws it right back to me. We have had a lot of laughs and a lot of cries together. I really needed this type of friend in my life, one who completely gets it.

Dry shampoo is my friend. Over the years, I have had plenty of time to bond with dry shampoo. Sometimes it is just near impossible to get ready for the day and look your best when you feel downright awful. I am guilty of alcohol swabbing my pits, slapping on a little extra deodorant, and calling it good. I guess what I mean here is that what you wear, what you look like for the day doesn’t matter as much as you think it does.

I used to be one of those people who would be a bathroom hog, perfecting my makeup, spending entirely too much time to get my hair “just right”. I’d try on a bunch of outfits before heading out the door. Do these things give you a pick me up in a sense? A boost of confidence? For sure. Although some may disagree, there are way more important things in life. But hey, this is things I have learned during my own personal journey. I’d rather put on a comfy sweatshirt and jeans, and throw my hair in a messy now, rather than spend all that time getting ready. By the end of getting ready, I don’t even want to do anything anymore. It wipes me out. I still like to look nice once in awhile, but this is no longer a priority to me. I’d like to think I look fabulous either way. 😉

Don’t always make everything about you – I know this one can be tricky. This disease has taken over your life. Every single day you live it and breathe it. Those that are close to you and have stuck by your side are wonderful, as well as those that take an interest in how you are doing. However, they do not want to hear the negativity (or a complete medical report) all the time.

Yes, it is okay to share, give updates, and vent once in awhile, but don’t forget to ask how they are doing, what is going on in their lives, and listen to what they have to say. These people have lives too, and struggles of their own that we often forget because of what we are going through. Support them equally in any way that you can and be their friend too.

Never forget others are going through this journey with you – Although it is hard to see the big picture, I always remember that Dave is living with this disease too. Life hasn’t just changed for me, it has changed for him. He went from my spouse to my caregiver. He has made tremendous sacrifices but has stood by my side every step of the way. You are not the only one fighting this battle. Appreciate these great people in your life.

You need to have a sense of humor! This is so important! Sometimes the shit that you deal with on a day to day basis you just have to laugh about. I am sure looking back, there are probably a lot of “funnies” you’ve experienced, especially if you are a brain fogged mess.

Here is an example… I once sat and waited at a restaurant to pick up my takeout for dinner for what seemed like an eternity. What is taking so damn long???!!! Well, turned out, I was sitting in the wrong restaurant. I got so embarrassed when I was arguing with them that I definitely called and placed an order and they proceeded to show me on the caller ID that I had not called their restaurant and was mistaken. Ahh! Who the hell did I call then???!!!  I finally got to the correct place and picked up my cold and soggy food as it had been sitting so long, feeling like a dumbass. But common’… that’s just plain funny.

Be grateful – As I wrote above, be grateful for those amazing people in your life. Be grateful for the things that you CAN do, and try not to dwell on what you cannot do at the moment, and remember that things will get better in time. Always find the silver linings. There are ALWAYS silver linings, even if you feel that you are at rock bottom. Hold onto these things, as they will help you during your darkest times.

I never forget that I do have a few amazing friends, a husband, my family, a home to call my own, there have been several of my symptoms that have improved, even when I feel like the world has turned upside down. These are all my silver linings that make life so much better for me.

In past articles I have mentioned even if it sounds silly, writing down the things that you are thankful for. Maybe the things you are able to do. People you love. Your fur kids. You will come up with more things than you would have thought!

Be proud of your accomplishments, big or small – If you do something that you haven’t been able to do in a long time, even if it is something like being able to sweep and vacuum, be happy. It might be a very big deal for you. Share it with your friends, your family. Be proud. You deserve it.

Your doctors are only human-  I love my team of doctors and I have faith they will one day get me well, but they are human. They make mistakes, they do not know everything in the world. They are also not mind readers. Do not underplay how things really are. He or she doesn’t know how you are feeling or experiencing unless you tell them. Let them know everything even if you think it is not a big deal. Sometimes they have to connect the dots. Bring notes with you to your appointments, keep a notepad handy for information you may want. I know I forget everything very quickly, so this is a great tool. A life lesson with Lyme brain: Sticky notes are a life saver!

Know your body – If you absolutely know you cannot do something, then don’t do it. It is okay, we have limitations. Sometimes you have to cancel plans, sometimes you may not be able to switch that laundry over or fold it (that is me this afternoon haha), sometimes you just have to say when.

If you know that something is wrong or missing (this goes along with my next topic), then try to fight for it. It took me a long time to push doctors when I knew there were missing pieces of the puzzle. For a few years I knew there was a huge piece missing. I fought tooth and nail for testing because I just knew something was very wrong.

Did I sit there and self diagnose? No.. I wouldn’t advise that either, and I didn’t know what it could possibly be. I knew I was out of the realm of what is considered chronic illness tired. Turned out, it was Narcolepsy. That is a very big deal! I struggle daily but now I have a much better quality of life. If I didn’t know my body well enough and speak up, would I have gotten this huge piece figured out? I am thinking most likely not.   

Do your research/be an advocate – This is so so important! I cannot believe the amount of people that do not do any research on their disease! Google is your friend! Books are your friend! Learn everything you can about your illness. If you are being sent to get blood work done or any test, find out WHY.

Get the results in your hands, and see what they may mean. You may find some things along the way that you have not been tested for, or something that you think is missing from your treatment. Bring it up! ALWAYS get your dictation notes. Research the medications or supplements you may be given.

Don’t have full trust going into this, and don’t have 100% trust in your doctor. Doing research might even make you realize your doctor is not right for you. Not all doctors are created equal!

Don’t be afraid to ask questions and speak up if you disagree with something. Fight for yourself. Be an advocate for yourself. Knowledge is power.

Pushing yourself can be entirely worth it – There are some days that I want to do nothing but lay on the couch or stay in bed. Something as simple as dinner or a movie seems like an impossible feat, but I push through it and it feels great to be able to get out there. I know that there can be consequences, sometimes lasting for days. A higher level of symptoms, pure exhaustion. That night going to dinner with friends, laughing and being social is worth it, I promise you.

Mind- over- matter can get you to do some great things. I didn’t feel good today, but I pulled myself together the best I could and said to myself, “YES I CAN” and accomplished a lot. I went to work, left for a doctors appointment, went back to work, went to two different post offices, the bank for work, my bank, the store, and had to run around the yard to grab my trouble making dog who suffers from selective hearing.

This concept has kept me working (even if it is for my Dad just a few hours a day), kept me wanting to keep going and fight. I never give in or give up. This concept has probably kept my sanity through all of this.

Hold onto hope – Things will get better. You just have to believe it. This is by far the longest journey that I have been though, and I am sad that I have given up a big chunk of my twenties and am now into my thirties, but I know that in time I will get more and more back to “me”.

It is definitely okay to “have a day” once in awhile, let’s be real here. I know I am big on the butterflies, rainbows, and unicorns but sometimes you just need to have a day to let it all out. It happens!

Honestly, some days I have a feeling of immense grief, losing the life I once had. Some days I absolutely lose it with frustration and am angry at myself for not being able to do everything I want to do, angry I feel so lousy, and I am just plain angry at the world. I get overwhelmed once in awhile, and that is okay. On these days I try to go to bed with the thought that tomorrow is a brand new day. It doesn’t mean I have lost hope, I hold onto it but I would say this is entirely normal.

Positivity is an amazing medicine and if you keep your head held high and think of the good, you will be so much stronger beating this. Check out my blog post on positivity,https://kimmiecakeskickslyme.wordpress.com/2014/02/04/staying-positive/  , you will find it is even scientifically proven that keeping the faith really is an amazing medicine.

I have learned how strong and brave I can be. I couldn’t have imagined being this sick in a million years. Treatment can be so brutal. I never thought I would be doing all sorts of heavy treatments, be glued to an IV pole, or have my schedule be filled with doctors visits, the hospital, and trips to the pharmacy.

I advocate for myself as strongly as I can. It can be scary having to stick up for yourself whether it be with doctors, loved ones, or even complete strangers. Although I have always considered myself outgoing, I am not a confrontational person. But now I have to be!

The emotional toll of being sick has been awful. It is so tiring dealing with it, not having control of your body or your mind. As I see it, there are two paths I could have taken. I could have had a terrible outlook and let these illnesses eat me alive, consume me, let them win. Or, I could fight like hell and know this is not the end of the road for me. I decided to fight like hell. I haven’t given up no matter how hard it may be, and I will never give up. I will never let chronic illness define me, and that makes me a warrior.

I would like to thank everyone who have supported me over these years. It means more to me than you will ever know. Love you all so very much.

P.S. A “Where’s Waldo”… Can you spot Miss Olive?

September 7th 2012- 4 Years

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

 

July Part 1 – Keep Pushing

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I have been ridiculously busy lately, especially with work. I have definitely been slacking on keeping up with my updates. I have positive news though! No news is good news, right?

I had an appointment with my favorite Lyme literate naturopath a few weeks ago. We are still trying to figure out my complex puzzle, and he believes a part of my issues I am facing is drug induced mitochondrial dysfunction, which is kind of our main focus now, along with working on my gut infection, and Bartonella, which has slowly begun to rear its ugly head yet again. Super sucky.

Backtracking… What is mitochondrial dysfunction you may ask? Well, I will do my darndest to explain it correctly. Google to the rescue!

Mitochondria are a big part of your energy production. A huge part. Whole systems can fail if these cells begin to die and it can affect your entire body and its organs.

Antibiotics can cause cell death to mitochondria, and being on enough antibiotics to kill a horse for nearly 4 years, it is likely that this is could be one of the culprits as to why I am still not fully better and very much a work in progress.

Mitochondrial issues very well overlap a lot of Lyme symptoms. It is nearly impossible to know what is what, but it is certainly worth giving this a shot having it be a main focus for awhile.

It was once believed that mitochondria could not come back, but over time they can replenish. Hooray! This may take a very long time, but this is positive that I will get my little energy cells back. So, more supplements of course.

It is insane that I am not even on treatment and I take upward of 60-70 pills a day. I guess it helps me with my daily water intake 😉 Silver linings.

Honestly, right now a lot of my supplements I am suppose to take three times a day, I have been taking two times a day. I am afraid my timing is off, and the ones with food, without food… I dunno, I don’t really feel like eating anything after midnight when I go to bed. I know that probably sounds bad and non-compliant of me, but I am trying to keep up with everything on a “timely basis”.

As for the Bartonella that is creeping back, I am just using an herbal now to try to keep it at bay so I don’t have to be on antibiotics and continue to heal my stomach.

I did hear possibly the very best thing ever during my appointment. Dr S. said to me, “I think this might take a long time but I’m pretty confident we can get you much better or fixed.”

Even being under the care of one of the top LLMD’s in the country, the goal has always been 80-85% functional and that was it for me. I was told that is all there would ever be.

Realistically, I know some things might not go away completely, but in the near 4 years of treatment I’ve never heard anything like that.

Way to go Dr S. for making sure I still have my butterflies, rainbows, and unicorns mentality! Yesssss!

I am still babying my stomach. It hasn’t been perfect, but it is certainly improving. I have been doing well with my diet and the bloated look is definitely beginning to improve. Every once in awhile, I break my own rules and eat something I know I shouldn’t, example, I stuffed my face with Chinese food last night. All the bad stuff that even on IVs I wouldn’t eat.

It was friggin delicious and sometimes I feel like you have to break the rules for the sake of sanity, but I can tell a huge difference in my energy level, my head hurts, and I am just plain foggy. Needless to say, tonight will be a salad and vegan chicken night. Time to jump back on the horse and get back on track.

Bartonella as I had mentioned has also been one of my issues lately. It generally messes with my head in a lot of ways. Paranoia, hallucinations, anxiety, OCD, and oh gosh do my feet hurt at night.

Dave, my wonderful husband, is a trooper and uses his knuckles full force on the soles of my feet to get the knots out at night.

Dr S gave me an herbal tincture called Houttunia, and I think it is infused with something (Samento perhaps?) Well, anywho, I completely underestimated this tincture.

I was told to take one drop, and slowly work myself up to 15 drops a day. Yeah. I made the assumption that starting at one drop was the “I’m a pussy” dose, and started with five-ish. I say five-ish because I kind of just squirted a guesstimate of five drops in my mouth.

Word of the wise: listen to your doctor. LOL

I ended up with stabbing stomach pain, all my Bartonella symptoms flared, I was completely wiped out. It quickly brought back all the the days I am so used to. Sitting in my car at the bank or grocery store parking lot, and having to drive home because there is just no way I would be able to get out of my car. Needless to say, I took a few day break and started SLOWLY, and I haven’t had any issues since. I am still flaring, but it is tolerable.

Clumsy me, I fell again and ended up with a big ol’ bruise on my leg. My house is a single story ranch, and our back porch has one step and another single step further back, of course when I went down I hit the one of two steps then tumbled. Oy vey.
It is super annoying when my legs just give out. I feel as if they are like “just kidding!”, and I go down like a sack of taters.

I had an appointment with my dermatologist for my heart scar. It turns out it is a keloid. It sounds like it isn’t worth a surgery as it can easily come back and worse. Plus I could have to cut everything out, so I would be left with a bigger even grosser scar. It kind of felt like he wanted to line his pockets with money, as I did a little research and found out many plastic surgeons would not cut it out for this very reason. Of course, it isn’t covered by insurance anyway.

Scars I personally feel are pretty badass and tell a story about you, but this one is kind of “icky”. Haha. I will just live with it.

He also offered steroid injections, but I don’t really think that is warranted either.

I know you aren’t suppose to take steroids with Lyme disease, but sometimes in certain cases you have to outweigh the good and bad in particular situations, and this certainly isn’t one of them. Totally not worth it.

Now onto the good.  🙂

I have had some great days. As I had mentioned, I have worked much more. A lot more. I kind of haven’t had a choice as things needed to be done, but have done really well on staying focused, with the small exception of a few days I had to leave out of frustration or pick and choose what I absolutely needed to get done for the day.

Those are the kind of days I swear at the quarterly government reports because I have a total brain fart and once I get frusterated, I get all flustered and I need to leave and come back to it later. I have done the same reports for going on 10 years, they used to be so easy peasy for me. They are, if I am not in a foggy trance.

I would consider myself much more normal at least visibly. My friends had a small barbeque, and you wouldn’t likely be able to tell I am sick in any way. I even did a little dancing!

I have been moving around more, using the pool for exercising. This made me quickly learn that not only my legs are out of shape, I have also lost all muscle strength in my arms. It’ll come back to me. The more I try to do, the more it will come back and I am hoping that I will be more functional.

I even made it to Home Depot the other day!! Not only is it a big store, the lighting is terrible for someone with a lot of light sensitivity.

After awhile I began to get really fuzzy and dizzy, but I did a lot of walking and dream shopping since there is just no way I can afford anything in there. Haha. I was able to stay until Dave got everything he needed and there was no emergency rush out to his truck. Phew.

Last time we went to a Lowe’s, Dave literally threw me on one of those rolling pallet things and took me out to his truck. I had completely collapsed. I must have been a sight for sore eyes as he wheeled me out of the store, while I was a hot mess laying on the pallet.

I conquered the trip this time, and I was there much longer. Things are never going to change unless I start getting back out there into the world. I would rather fail a few times (or a lot of times) and say I tried at least.

I did a big grocery shopping trip with Dave! We usually stick to the tiny store in our town, but we ventured out of town. I did great. No having to leave, no dizziness. We didn’t have to rush. It was awesome.

It wiped me out by the time I got home so I took a nap but look at what I am accomplishing! There is no doubt I am moving around much more.

This comes to an important point with all of this. Kimmiecakes rant of the day. I know some will probably take offense, and believe me I have been through hell and back, and it has kept me going and fighting.

Keep pushing. It may be hard, but doing just a little extra is great for the mind, and your body.

If you think about it, I have had years and years of doing absolutely nothing. A vegetable at one point, a wheelchair, not moving around at all. Muscles are definitely toast. Everything is weak and depleted.

I know it might come across as an asshole thing to say, but mind over matter it. Do something every single day. One little thing. Anything.

Even if it is sitting outside for awhile. Just an extra push. I have talked to sooo many Lyme patients over the years, and I can tell when there is night and day differences in attitudes it plays out in a link to their health.

It is kind of bizarre, but many a time, I see those who let this terrible disease consume them, eat them alive, and let it define them not heal. These are the people who just don’t see the silver linings in anything. There is ALWAYS silver linings.

You all have the power to do one little thing that will change your day. No matter how big or small, it is still an accomplishment. Give yourself credit with what you CAN do and focus on that. Push. Fight. Kick some ass!

Granted, this disease is ridiculously complex so there is so many things to consider, but I have seen those people are often the ones who stay sick.

Hell, I am a medical mystery as dubbed by all of my doctors, but just look, after over 25 years of infection I am finally starting to see some improvements. I got told some amazing news and I have such high hopes that this is not going to be forever. I think my body is beginning to want to heal itself. Turtles pace, but in the right direction.

Your mind is an important part of healing. Do not let this define you. I am a firm believer in that.

End rant. Or motivational speech? I don’t know, but it has been on my mind lately upon speaking with some current patients and it makes me cringe. We are all allowed a bad day or two, to be angry at the world, but I got into it trying to help someone look at the world in a new perspective and she just wasn’t feeling it. Oh well.

I hope it serves at least a few of you well! It is hot as Hades outside now, but have a seat in the shade, read a book, walk to your mailbox, sit at a table and prepare dinner (I did this for years!), take a bath, anything! We are all effected in different ways, so what you are able to do is likely different compared to someone else. Just do it J

P.S. I will give another update hopefully soon! I had yet another visit with Dr S and will have much more to share! I’m a little behind the times 😛  Happy Sunday.

Ahh! Miss Olive! I almost forgot about you. She is doing great, I even left her out for the first time to take a shower and she surrounded herself with toys.. caused no trouble! She’s 50 pounds now!!
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June Part 1 – Workin’ It

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I’m here! Just slacking once again on my writing. Hmmm… I have written notes throughout this past half month to try to remember everything, so I wouldn’t bullshit you all. 🙂 I have had an appointment with my neurologist finally, and an appointment with Dr S today.

There has been some fairly decent days (for me anyways), ones that I have accomplished a few errands and helped Dave grocery shop. I have been trying to work on getting stronger, and have been starting to use my parents pool for a little physical therapy. Boy, I will tell ya.. I have always been focusing on my legs as the primary issue, but have totally forgotten about my arms. I have zero muscle left. Needless to say, I stayed in the kiddie end of the pool to get some exercise.

I do pay for trying to push myself badly. It generally takes a couple days to recover. I get beyond exhausted, foggy, and my tics come back. I still have to go back to the car and sit and wait, or go straight home even if I need something at the store. Oh, and my beautiful face come back. Lookin’ sexy, kinda?
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No, probably not. Haha. I really need to do this though, I won’t get any strength back by sleeping my life away on the couch or curled in a ball covered in blankets watching TV. Gotta start somewhere! Even for this much, I am really proud of myself. The other day I even went to the store, picked out flowers at a farm, and planted them. Go me!

I have been sticking to my strict diet and working on my gut infection and my neuro stabilizing supplements. They were working a lot in the beginning, I have lost a few pounds and am much less bloaty, but it hasn’t improved any further. Dealing with the gut is a tough thing that takes time. I just gotta keep at it.
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So weird. I wonder if Babs is acting up? This is the only picture I actually took, but I keep getting streaks on my tummy too. Those are almost more like straight red stretch marks. They go away within a day though. And, little blue veins poking out of my thighs.

I have been having a lot of anxiety at night. Paranoia. Every little thing on my mind eats away at me, and anything negative from the past replays in my mind over and over. Things that haven’t even happened yet play in my mind. I am in a wedding this weekend and I have anxiety about how I am going to feel, and I wish that I was more involved in helping out. Meds to help with sleep and essential oils aren’t doing the trick. It is really hindering a restorative sleep, and I am beginning to have nightmares and moving around a lot in my sleep. A few weeks ago, I was asleep, punching my headboard to my bed. I have been all over the place, tossing and turning. It would probably help to get to a better place with sleep again and I would not feel so yucky.

I had my neurology appointment last week. I had to joke as soon as I got into the office. It is bright as hell in there, which is kind of a neurologically impaired person’s nightmare. Really? Dim those suckers down. I can’t be the only person with light sensitivity that comes through that door. Oy. The good in that (I will put a positive spin on it), is that they will see exactly what those lights do to you. It is one of those things, generally when you walk into a doctors office to discuss a problem or symptom, it just disappears. Poof! When you get home, it is right back. And you just look like an idiot or a faker.

I suppose he probably isn’t reading this, so I will be honest with you. I will say, he is REALLY a nice guy, and I do like him. There is a BUT though. I will put it this way. He was probably the very bottom of his graduating class and snuck by. I saw him a few years back, not noticing anything because at that point I was petty much a vegetable. A twitchy, yelling vegetable. I had no idea what the hell was going on around me.

Example one. He referred to his notes from my previous appointment, and of course he remembered me. I am kind of one of those people that is hard to forget. Obnoxiously yelling, flailing my arms, finger snapping, clapping like a friggin harbor seal. Yup. Not too hard to forget. He had mentioned Tourrette’s, even though he understood the cause was likely my tick borne infections, and said that because I was not swearing it wasn’t quite but very close to Tourrette’s, or borderline?

I can’t remember the exact wording… I do know that an extremely small percentage of Tourrette’s patients actually do swear, so I kind of bit my tongue. This is not correct information for a diagnosis based on guidelines, and telling Dr S this, he was kind of disappointed because sometimes in these situations it is good to actually get something down on paper by the neurologist.

Example two. I had several notes prepared walking, well, waddling though the door, with everything I wanted to discuss. My foot and leg numbness was a big priority. What is permanent damage? Does he think there is permanent damage? Just something I have to deal with or something he thinks will get better? Any thoughts?

He gave me an exam. Not ONCE did he test the bottom of my feet for any response, the sides of my feet, reflexes in my feet. I even suggested it. DO ITTTTT.  I would think, common sense, if this is the number one complaint of the patient, it would be done. The only thing that was done in relative to my feet was he used something that kind of looked like a golf tee so it was kind of sharp at the end, made sure I was unable to see what he was doing, and told me to tell him when I could feel it. He did it a few times. Every time I answered, “right there!” or “now!”, it was midway up my calf. I really thought that he was starting out there and going downward. Nope. Upward. There was a whole lot of nada until halfway up my calf.

At the end, he did tell me that he wanted to follow up with me in a few months, and wanted some of my blood work to be redone. The big positive: it sounds like he is going to set up an electrical conductivity test to see how my feet and legs do. Which was huge. Another positive was that he was willing to refill my lamictal, which I cannot get here. One less thing to think about.

He also changed the wording on my lamictal as it stated that I have epilepsy, which I do not. He said that it was kind of a red flag, so changing it is better. Driving and whatnot. I told him the truth that I do drive, even though I am limited, like a 10-15 minute radios each way and that is my maximum. I was worried he was going to pull my license when he saw my list of meds. He didn’t though, thank god. I already feel like I have lost enough independence with this disease.

I was hoping for the epilepsy testing though, to see if the drugs I am taking are the right choice for me as it would give me that answer. I guess I can’t get everything I want. At least it sounds like I will be getting that nerve test done and my lamictal refilled, which were kind of the top priorities.

I had my appointment with Dr S today. It was a really easy, straight to the point appointment, really. We decided it was still best to not be on antibiotics. They really serve no benefit to me at the moment, and my stomach really isn’t fully healed.

He was really happy and encouraging that I am working on getting stronger. He wants to control the neurological issues more, and have that be my primary focus. Inflammation and more neurological stabilizing supplements! Also, working on the liver to make all these things work better and I absorb everything better.

I have been procrastinating for some time now on an issue, and Dave has gotten pretty mad and pushing me to call. I have about a dime-ish sized lump in my breast. It really near your armpits where your lymph nodes would be, but it is uncomfortable. I guess I need to take it more seriously. I honestly just hate dealing with doctors. In my family history, my grandmother died a very young death, before 30 of breast cancer. I am nearly positive it isn’t the issue, but a mammogram appointment has been set up for me.

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Also, I guess it is NOT normal for your heart implant removal scar (I had it removed in January) to have a keloid looking scar and certainly not normal to have black specks in the rest of my scar, and the left side not looking like it closed all the way. It did, but it kind of looks like there is a hole. Sorry for the super crappy picture, it is really hard to take a picture of your chest with a full sized macbook. Haha. Just to give a very basic idea.

Dermatologist appointment in the works. Super duper. I didn’t even bring this issue up, he saw it and said I really should get it looked at and possibly biopsied. Especially having black dots in it. Who knows, maybe they will cut it all out and I will have an even more badass scar. Woot woot! Just another thing to put in my calendar.

My electrophysiologist called for a follow up appointment as well. The prescription he gave me, the tweaked dosage, and his game plan of the recumbent bike, lots of water, salt and simple leg exercises seems to have helped, so I kind of put it on the back burner for now. It is so busy with work for my Dad and Dave, who would be the ones who would have to give me a ride.

My birthday was on Friday. 29! I plan on being 29 for the next few years. We didn’t really celebrate, the weekend before however, Dave did take me to the ocean for lunch, and I was having a bad day, but still was able to do a small walk on the beach. I wish I could have done more, but I wouldn’t have made it back lol. I always feel like a new person and completely relaxed after spending some time at my favorite beach in Wells, Maine.
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That’s my update for now! Wishing you all a happy Wednesday!

Of course, a picture of Miss Olive, sleeping with her caterpillar. 🙂
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May Part 1 -One Long Vacation..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

March Part 2 – Coming to a Fresh Start

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wishing you all a good Sunday!

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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