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?

Happy Monday


So, I am not sure how I forgot to add (maybe because my video is way longer than I wanted it to be… probably due to the continued loss of train of thought.. – right before my lymph infection I was mauled by my cat. This sounds gross but I didn’t really feel it, since sometimes I don’t have full sensation of my legs, and I didn’t even notice it, so I in turn did not see it and it wasn’t cleaned in over a day. It got infected. That was a big question mark.. Bart? Pictures are below… I can’t figure out my WP program at the moment. Brain fart.

And let’s add some more to the mix. I was bit by something. Once again, not a lot of sensation in my legs. What do you think?

I also have to share a picture of Miss Olive as I always do… That face!
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Stuck.

Happy Monday! As you can tell, I am in a bit of a fog. I was off this morning then just completely took a spiral this afternoon. Funny how things can change rather quickly. I am trying to remember anything else that I missed… blood work also showed very low Biotin and low Copper so I will be adding that to the supplements.
My sleep neurologist lowered my narcolepsy medication to see if it would help with my tongue. It is a tiny bit better now, and fortunately the small difference in dosage hasn’t changed the effectiveness too much. I could give a laundry list of symptoms and crap I am dealing with, but my video was way longer than I thought it would be so I will spare you. I’m bummed, but I will figure something out to get back on the right track. I’m no quitter.  🙂

October Part 2 -Hmm.

There has been a lot going on this month! Right now, I am focusing on fixing broken pieces, trying to get myself together in order to get well. It hasn’t been a good month, but I at least had a moment I was able to get out there and not be a hermit and enjoy myself for awhile. Halloween is my favorite and I pushed myself with a lot of mind over matter and a nice long nap before going out with Dave and my friends.

I had an appointment with Dr. S and there is a lot to work on. Thank god he writes notes about the appointment, I was about to crash and fall asleep so I was completely out of it.

He actually ended up telling me to head home and make another appointment, see how I do with my new supplements and skip my chiropractic adjustment for the day.

He saw my pictures of the bloat and stomach issues. I am going to give a little side note and some words of wisdom before I continue on.

SIDE NOTE: If there is something funky.. mysterious rashes, swelling, anything really……..TAKE PICTURES, ALWAYS!!!
A) It is easier to just show a picture of what has been going on if whatever it was isn’t there anymore for your appointment time.
B) They can’t help you if they don’t know what it is just by your explanation.
C) You can kinda sound like you are full of shit, especially if you are seeing a new doctor without proof.
D) Seeing is believing.

He takes my word for it either way, as I have had a good and long relationship as a patient with him… but… not exactly knowing without that picture really isn’t super helpful. Especially if you are a mumbly, stuttery blob in the chair, in my case tweaking and cringing as well.

Okay. Back to my story. No more amoxicillin for me. As you saw on my last blog entry, I am definitely bloated terribly and am having really bad stomach issues. The game plan for this week until I see him again is to work on my stomach issues. Lots of pre and probiotics, digestive enzymes, oil of oregano, GI Integrity, switching to magnesium citrate to try to get me poopin’ normally again.

Not going for several days apparently is an issue even though I am not straining and just forgetting, and I have always had issues with my liver so I guess it isn’t helpful to it and I am very toxic.

Well, nada. Zero difference. It stinks to get a bunch of stuff thrown at me but nothing seems to be working.

When I go back I am going to do further testing, to perhaps pinpoint more about the bacteria, as I already had a test that showed I had a pretty severe bacterial infection, but learning more might help with a treatment plan.

Gut health is so imperative to any sort of healing. It is worrisome that working on diet for gut infections, particularly SIBO, supplements, the probiotics etc. are not touching this. We will get it figured out. It is really important to be on track and I know I just need to be patient.

The next thing on the agenda was kind of random. But Dr. S kind of seemed baffled all of my gynecologists that I have seen in this past year showed zero concern I have not had a period in over a year. That’s a long time! I certainly haven’t missed it. Dr S. wants me to be back on track, and hormones are definitely out of whack if it has been this long.

Progesterone cream it is. I have started that but have still yet to finally get my period. I kind of feel like I am a ticking time bomb and am going to eventually blow, and possibly bleed to death as it has been so long. Haha. Only kidding.

I am only 5 days in and woke up this morning with hellacious cramps. As you know, if you have followed my story (you should, I’m awesome), I have endo and it isn’t fun at all.

I was so late for work. I was in so much pain that I was dry heaving and kept on blacking out. I looked at the clock and pushed myself as hard as I could to get my shit together and make it through the day. I actually am pretty busy with lots to do, and a dinner I need to go to tonight, ugh.

I grabbed a coffee at the gas station on my way to work, and decided to buy a box of tampies, just in case. I actually had to look at the different boxes like, “what are these? I forgot all about you guys! ” LOL Like I said, I am pretty sure it is brewing.

Sorry if that is graphic or gross to you talking about my time of the month. Or that time in well over a year. Whatever. I promised you all the good, the bad, the ugly.

My Tourette’s hasn’t been as bad, but I am still doing the cringes and hand raising and a few “bahh!!!”s at night. I can deal with that all though. It is what it is.

Fantastic news.. I have CHRONIC EBV/MONO… No, this is not just flares people get that already have it in their system and it gets reactivated. That is common with Lyme.

I have it all the time. 24/7. 365 days a year. Not a days break in between. Okay, that really isn’t fantastic news.

What to do? I have been on several antiviral herbals, but unfortunately there is no cure for mono. Rest and all that good stuff. I certainly get enough rest! Haha. I added monolaurin (spelling?) to my antivirals I am already taking. Hopefully it will finally get deactivated.

I asked the risks involved, and I guess you are at a much higher risk for cancer if you are in the situation I am in. I have so much crap going on, I am not going to even be scared about it. I just want those viruses to simmer down and go away.

Once again, reoccurring theme, I am still sleeping my life away. It keeps getting worse and worse and I don’t know what to do about it. I almost get in a panic if I can’t go fall asleep somewhere.

I had to sleep after seeing Dr S after my brief appointment to get my back cracked and we decided on further testing for stomach bacteria. (Yes, I know I had already mentioned this but I have taken forever to write an update and have been writing bits and pieces for about a week now.) I was toast.

That day was yesterday, an 18 hour of sleep day. And I will tell you, I am so exhausted today. It hasn’t made a difference. I seriously want to cry because I feel like this has taken over my life.

Giving a disclaimer to those who suffer from chronic illness can have extreme fatigue, I am not downplaying or minimizing anyone else in my post today with my personal ongoing issues. It sucks all around for everyone.

I have been through the chronic illness fatigue and I will tell you this is beyond different. Something is very wrong. I have been through hell and back with this illness, and this is honestly making me scared.

I can’t wait until I see the sleep doctor. I will obviously mention the mono issue. But everyone seems to think it is something more, most likely narcolepsy with the array of symptoms I have. I know my body, and this isn’t just a mono issue.

I hope I get some answers and help. This is seriously destroying my life and making it really hard to continue to make strides in improving.

I have been trying to do things. We were invited the other day to watch the football game with friends right down the street. Nope. Slept thru it and we didn’t make it. I have to sleep for hours before trying to go anywhere, if I am able to get out of bed at all.

3 hours for a quick dinner, several hours to make it to go to a Halloween party with friends. It is one of the very few things I look forward to every year. It was a major struggle.

I also feel like an asshole to Olive as I have to put her in her crate if I can’t leave her in our fenced in yard, it has been too cold or rainy. I hate doing that when I am home but I need to sleep. She is a troublemaker and can’t be trusted though, but I really feel mean to do that to her.

I still have my classic Babesia symptoms, not seemingly as bad, but Bartonella has come out to play. Bartonella feet hurt a lot at night. Anxiety, anger, and paranoia. I am entirely oversensitive.

Each and everyday I have moments when I freak out thinking no one cares about me, my friends hate me, Dave is annoyed by me… I make up all these scenarios. And I think it so much it becomes real.

Obviously it is not, but it is still real very to me. I need to just try to relax and know that this isn’t reality, I am putting this all in my head. It is like I need reassurance from my friends and Dave… but the thing is.. IT IS ALL IN MY HEAD!

It will pass, it always does. It seems like it comes and goes in waves. But in the meantime I hurt pretty badly purely by my imagination.

The hallucinations have calmed down a bit though… Dave at least hasn’t had to pick through my food for spiders. 😉

My happy moment was Halloween. It was hard and I paid for it dearly for several days. I was lucky, there was plenty of places to sit and it wasn’t a crazy wild party or anything. We had so much fun and I was so glad to get out. I actually did okay. There was a few moments little waves hit me but I always came to and enjoyed myself. Again though, even though I was clearly invited I felt the crazy fake scenarios in my head of paranoia, I did try to be as much of a social butterfly as I could be.

I love homemade costumes. This year just wasn’t the same for me. I am usually ready at least a month in advance, and plan forever, but this was literally the day before I put our costumes together. I think I did alright though.

A goal I need to work on is to really get back to a ritual of my daily exercises given to me by my PT, and use the bike again. Suck it up when I am all disoriented waking up, or do it first thing in the morning even if it screws me up for the rest of the day.

My massage therapist warned me that I am losing muscle in my legs. This is the first time I have been told this. Since I have been really sick and a couch potato, over 4 years ago, I still had a bit of muscle. It was likely because I was so fit and active before my body said, “when”.

That’s not good at all. I mind over matter a lot of stuff and have done amazing things throughout my Lyme journey, but I will admit lately I have been slacking on the exercise. Really truly slacking.

And it makes a big difference with POTS as well. I need to boost my circulation. It isn’t fun to have to turn the shower off and curl into a ball on the shower floor because you are going to pass out.

Yup. A goal. Well it shouldn’t be a goal. I need to dedicate time to do this, even if I often sleep 15+ hours a day now. 10-20 minutes is a heck of a lot better than nothing.

Wish me luck with everything. Told ya, I have a lot going on!

Have a great day everyone!

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And of course, Miss Olive. I have no clue how the heck she got up there. My Queen of the mountain.
 

October Part 1 – Why Hello There!

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I wish I could tell you, “No news is good news”, but things really haven’t panned out to be that way the past month. I have begun a small antibiotic and herbal regiment (well, maybe it is small, maybe not…. I am just basing it off of my massive scale of treatments that I have been on in the past.

I had an appointment with my neurologist and was kind of pushy to try to get some testing done before the end of the year as I have no idea if there is going to be a giant spike in the cost of insurance. Let’s hope not. But, better safe than sorry.

I gave him the spiel about how I have been doing, and was really hoping to get some nerve function tests to at least see if it is permanent damage from my mid calves to my feet or if there is hope for further improvements. Makes sense, right?

Of course he didn’t order a test of any sorts for that, and my notes for the appointment even said, “NUMBNESS FROM THE MID CALF DOWN TO FEET, DON’T KNOW OF THE CAUSE”. For real??!!!! Pretty sure you are the Doctor, Sir, why don’t you figure this shit out. And before January 1st. Please and thank you. Ugh!

He did however seem pretty concerned about my sleep and told me that was in his mind the first priority. I of course was a little dishonest, and didn’t tell him my incident falling asleep for that split second on my way home from work, I just couldn’t, but I let him know my general sleep schedule, and my “I actually get a day off” sleep schedule.

I am seeing a sleep specialist next month, as he really believes I either have narcolepsy or possibly sleep apnea.  I really didn’t know much about sleep apnea, other than from watching shows with really heavy people and they have to wear these masks as they sleep. He told me it can really happen to anyone, it is just a higher risk factor.

He then told me, which made a lot more sense is that if you have very bad sleep apnea you may never really reach the higher levels of sleep, and that would cause the excessive daytime sleepiness.

Of course when telling the neurologist about the hours I sleep and trying to gather as much information as possible, with Dave knowing I was going there and was going to discuss these issues, he failed to tell me until AFTER the appointment I snore very loudly and make weird throat noises in between trying to swallow, chewing and choking.  Geez, super helpful Dave.

I suppose narcolepsy is a possibility, Dr J has also mentioned it to me in the past, as there are many similarities. I once again was just thinking of the specials on TV in which people fall right to the ground randomly and it is like an every moment event. I guess that isn’t always the case, those are the most severe cases. Guess I need to stop watching TLC specials perhaps.

If absolutely nothing pops up, then I will know that I am still as sick as shit and my body is in healing mode. People tend to have one side or the other for a spectrum of treatment. No sleep, or sleep all the time. This has just been an ongoing thing for years and years and has only gotten worse.  This is also much different though, it has gone on for a very long time without treatment too.

It is awful to be so debilitated, falling asleep literally mid conversations, getting anxiety if I can’t right then and there go and take a nap, feel a wave of tiredness from laughing too much or any sort of strong emotion, confusion and completely out of it if woken up, and I sleep for up to 18 hours a day.

With it only getting worse, it has not only messed up my ability to keep trying to have my legs moving to help with POTS, I have also missed out on a lot of things. I have missed a few birthday parties this month and have been a bit of a hermit. We try to go out to dinner on Saturday nights but take-out seems to be a common theme. The few times I have gone to do anything, simple things, I have looked at the clock wanting to go home, which I hate. I love my friends. I love being a part of doing anything, and even more having an invite even if it is an empty one. This isn’t me. This all around sucks.

Dave and I went to a fair over the weekend and although I made it a little bit, I had a very hard time. I couldn’t feel my legs and had to hold Dave to walk at all, I started getting completely out of it, rocking and having my Tourrette’s scrunchy faces. We left before anything got worse and I needed a near 7 hour nap to recoup from the time at the fair. At least I got to see the bunnies. They’re my favorite 🙂

I have had some recent blood work done and my cortisol is completely normal.. not really any explanation. I guess spinal taps can show some sort of information on it but I have yet to have a spinal tap for any sort of issue so far, as well as sleep studies. Who knows, we will see what the sleep specialist says!

My start of the month was a round of Coartem and it did go better than my previous round. I had the classic Babesia symptoms: air hunger, sweats, hot flashes.. that sort of thing and was pretty emotional and drained. I hated the air hunger. I couldn’t even lay on my back or on my stomach, I had to sit upright to breathe better. You just have to try to relax your mind and try to focus on your breathing, in a relaxing sort of way and not panic. Panicking only makes it much worse.

Treatment has been making me pretty nauseas and out of it. The other day (when I say the other day it might have been several weeks ago haha) I made an oopsies, on my way home from the Doc’s office, I just plain didn’t feel like cooking and decided on Chinese. I went to the Chinese food restaurant and waited and waited for my food to pick up, and a gentleman came out and said I never called. I got in a rage and was persistent that I had called in my order, and he then asked for my phone number. Low and behold, he checked the caller ID and I did NOT call in my food there. So, I made it to the other Chinese food restaurant and my food was sitting there waiting. Oy vey.

I have been having moments of being completely overwhelmed. With work, and with life in general and have had a few mini breakdowns. Today, I had to leave work, I just couldn’t do everything I needed, but absolutely had to run a couple of errands in town. I sat in the parking lot and did my best not to cry. The bank, dropping mail in the slot, and picking up dog food seemed out of reach for me. Don’t you do it Kimmiecakes! Don’t cry. Push. You got this. And I did. I can barely keep my eyes open right now and I will be psyched as soon as I am done this to take nap numero uno for the day. I have just been slacking so badly I didn’t want you all to think I have fallen off the face of the earth.

I have had hallucinations at night, seeing my usual spiders. I made a small plate of vegan nachos the other night to take my pills, and screamed out loud, convinced there was a spider in my food. Dave had to pick through my nachos and assure me that there was no bugs in my food. Bartonella is at it again. Not to mention the paranoia, anxiety, and just plain sadness lately. I am not really sad I don’t think it explains it right, I am more just frustrated. I always focus on all the good in my life when I get like that and pull myself out of the funk I end up getting in.

Neuro issues in my feet have taken over. Last week I hopped in my car and looked down, and there was blood all over my big toe and smeared on my feet. I must have hit my foot against something. Not only that, a big blister formed on my little toe. I am kind of glad I didn’t feel it. I have the feeling it would have hurt like a MOFO.

I am now taking a break from treatment again. I have begun to have major bloating issues. I measure myself to see if I am bloated or just feel that way, and I have gained over 4 inches in my gut in less than two weeks. FOUR INCHES!! That seems like a lot in such a short time.

Something is definitely going on, so the plan until my next appointment is to see if I can get the bloating down before then, and if not that will be my main focus again. I am assuming the gut infection is back in full-swing. I am sure I will be getting some testing done next month.
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Yikes! I look like I am preggers. This is after the first thing I ate for the morning. A small piece of steamed haddock. Morning fish? Yeah. I know. I work in the fish business. No breading, no gluten, not saturated in butter or fat, and very small amount. And my stomach only gets worse as the day goes on. I am grateful it is now sweater and legging season! Haha. Silver linings.

So, I will continue on with my FODMAPS diet, behave as much as possible, and load up on probiotics, prebiotics and FOS. Wish me luck on this one haha. At least at this point I am not remotely obsessing over it and hasn’t been a dent to my self esteem. It is what it is. Happy Wednesday!

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Annnnnnndddd of course here is Miss Olive! Getting big! Also, notice my blue foot. LOL

Note: Feel free to share, share away! I like to think I help others relate in some small way, and educate others by writing. But, please use my link or hit the share button on FB and do not copy and paste as your own work due to recent copyright infringement issues.

 

September 7th 2012- 4 Years

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

 

August Part 1 – Busy Month

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Let’s get to some information about parasites!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now the awesome!!!

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

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

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

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

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

Annnndddd… Miss Olive says, “hi”!!
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