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?

August 2017 – Hi ho Hi Ho, Off to the ENT I Go!

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Yes, I am aware it is September now. August was a pretty busy month, but I figured I would fill you in and not leave you hanging!

August was full of doctors appointments, work, treatment, and attempting to be productive. I feel like lately I have had bits and pieces of “bluer skies”, as Dr J would call it, so I make the most of it. I have done some grocery shopping without chaperone Dave. I have cleaned up my dirty house a bit (I think it isn’t completely possible living with 3 little monsters), and been cooking and freezing some extra meals.

On the other hand, I fade and fade fast. Some days I am still a fixture of the couch – shaking, rocking, and altogether completely out of it. I have been having really bad days with my Tourrette’s syndrome, but also some other days you would never even know.

There have been days I have been told that I “have that light back in my eyes”, and days that I am asked if I am okay, and the classic, “you look exhausted”.

You know what I am saying! Chronic illness is full of good days and bad days. Like a box of chocolates, you never know what you’re gonna get! 😉

This past month, I have been on Augmentin and Alinia. The nausea can be really bad, and by nighttime I generally feel like I am being stabbed in the stomach. I am in a fog or completely depersonalized. But I will say, I have tolerated the combination extremely well, especially not pulsing and treating everyday. Most of the time even pulsing it hits me like a ton of bricks and there is no “bluer skies”.

I finally got in with my ENT. I had been impatiently waiting for well over a month. As I had mentioned before in my video blogging, I have had pretty severe lymph issues. My neck is full of what they call “shotty bilateral lymphadopathy”. Basically, this is a bunch of hard bb pellet nodes in my neck. The center of my neck and under my chin has been completely swollen and even affecting my breathing. It has gotten to the point it has changed my voice and I feel like I am breathing through a straw. It is hard to drink liquids and I have been waking up gasping for air and coughing like I have been strangled. Heating pad to the neck, I’ve just been plain ol’ miserable. Not to mention it isn’t visually appealing whatsoever. Haha. I now have a big turkey neck that I never had before. Gobble gobble.

Doctors upon doctors not too sure what was going on, an ER visit that was unpleasant (but I did get my CT done, so that made it all worth it), my PCP, Dr S… Dr S is the only one that hadn’t been a turd to me about it. He at least took the initiative for some testing. My PCP pretty much said, “It could be Lymphoma, have a good day! Oh by the way, I don’t want to be responsible for you”. Oy vey.

But Dr S did give me a Leukemia and Lymphoma immunophenotyping test.. okay I am not super positive if that is exactly what it is called, but it seemed very unlikely this was my issue. Phew.

Surprise surprise, the CT and all the paperwork the ENT office requested early for my appointment was never even looked at. I was kind of a piss pot about this, so was Dave. He piped up to the nurse that the ENT is doctor #5 and let’s take this seriously, get it figured out.

Side note!!!! *** When you feel like shit, it is a great thing to have someone go with you to appointments. There is no way I could drive the half hour to the ENT office either way, so Dave goes with me. Although I bring notes to discuss since I can’t remember a fucking thing, he adds whatever I may be forgetting as well as asks questions I might not think to ask.

He is my “translator” if I start stuttering or begin to sound like I am speaking a foreign language. I often get a puzzled look, and he always jumps in with a, “What she means is”, and correctly tells the doctor what I am trying to spit out. He is pretty good at being my translator haha, Sometimes I make no sense. Dave gets a gold star.

The nurse was going through my records and stepped outside with the ENT who was then reviewing my CT. I had a laugh.. In the hallway the doctor asks, “Has she been tested for Lyme disease?” I actually never mentioned it to them, but it was in my life story of a binder full of records. The nurse replied that I have Lyme and am still treating it.  I’ll get to the aggravating laugh part later…….

The biggest concern is obviously my breathing and the swelling. Breathing is a good thing after all. Lidocaine was sprayed up my nose, we talked a little bit about symptoms I have been experiencing, and the then stuck a camera up my nose and down my throat to take a looksie. My adenoids and lingual tonsils are all swollen, as well as my artenoids and post cricoids are rather unhappy as well. All with edema, and most with erythema as well. What does erythema mean? It is “superficial reddening of the skin, usually in patches, as a result of injury or irritation causing dilatation of the blood capillaries”. Thanks Google!

The ENT told me to not focus on the side nodes at this time. Viral? He came off Lyme. He gave the diagnosis of laryngopharyngeal reflux, or LPR for short. Also known as “silent reflux”. He said that this can actually be a neurological issue involving the vagus nerve. In the past, I have had stomach issues likely from my vagus nerve and had to take a bunch of supplements to aide in digesting my food, or it would just chill in there for a long time, which is not a good thing.

I was told to not worry so much about acidic foods but to have little to no fat and was put on Protonix. He said this can take a long time to heal, much longer than someone with regular reflux. He also gave me an allergy test as I haven’t had allergy tests done in the past.

Now here comes that aggravating laugh. My allergy testing came back. All negative. Nada. Zip.

A doctor mentions Lyme, Lyme is confirmed. Yeah no.. it MUST be allergies. That is my side node diagnosis. ALLERGIES. ARE YOU DENSE IN THE HEAD???!!!!!!! THE TESTS WERE EFFING NEGATIVE!

This is so incredibly common with Lyme. I hear so many stories of people getting tested, have CDC positive results in their hands and their doctor still says it can’t be Lyme. Lyme isn’t in whatever state they live in. It is a false positive. Any excuse. Frustrating, huh?!

I mean of course, with a Western Blot there can be Lyme specific bands that are positive but that also isn’t recognized. If you don’t have that test lit up like a Christmas tree with that CDC positive test, you don’t have Lyme, even with bands that are positive that are indicative of having Lyme disease. You can’t just be a little pregnant. You either are or you aren’t. That is how it is for us though unfortunately with these uneducated doctors. And like I said, even with that positive test, they will still poo poo you. Gotta love it.

Anywho… I have been doing a little to no fat diet. Not going to lie, as soon as I left his office, Dave and I had a last hurrah lunch at a Chinese food buffet. I stuffed my face with all the fried and greasy goodness I could, knowing I would have to behave. I actually usually don’t eat poorly, but when you are told you can’t have something, of course you want it.

After my last supper, well, lunch, I was off to appointment number two of the day, my sleep neurologist. Things aren’t perfect by any means when it comes to my Narcolepsy, but life has definitely improved from this aspect. I have gone from 14-18 hours a day of sleeping to 8-10. I still have a tendency to instantly fall asleep, and get an overwhelming sensation that I need to fall asleep right then and there. It is almost like complete panic.

She told me that this is more trying to make life better, but I won’t ever not have some struggles of having narcolepsy. She suggested trying to take a one hour nap during the day. It is easy for me to do so, just give me a couple minutes. Problem is, I can’t wake up. We decided at this time to just keep my dosage the same, and to just play around with it a bit and see if it continues to help. Like taking it earlier, or later, just to see if it makes any sort of a difference.

I am a little worried though. I am having the sensation of complete exhaustion when I have any sort of stronger emotion such as laughing or having a deep conversation. This gives me a loss of muscle control, my body just turns into jello. This is kind of a lighter version of cataplexy. I am hoping it will pass. These episodes were improving for a long time, but I am starting to take a few steps back. If it gets worse or continues, she said to give her a call. At least she is really nice to me… even though she always asks how my “Lyme’s” is. Haha. At least she believes me and is always concerned my medication will make my “Lyme’s” worse, or my seizures, which is always a possibility with taking a brain stimulant.

I was looking at my dictation notes from my appointment and I found it interesting that she had mentioned that I was opening and closing my mouth and clicking my jaw. She had a question mark, Tourrette’s or new tic? I don’t recall doing this, but I kind of envision myself looking like a crocodile opening and closing my mouth during my appointment. Haha. Super.

I just had an appointment with my LLND. I had shot him an email prior to my appointment asking to start over with my supplements to see what is truly necessary. Instead of having a pile of supplements ready for me, he gave me a list and told me to finish what I have and downsized my stash, and changed a few things that he thought would be more beneficial when I use everything up. I am glad I have a doctor that isn’t into selling me a bunch of things, and wrote a list. It could have been one very expensive appointment!

I read off my bulleted list of symptoms and filled him in on my recent appointments. After playing my little violin, I asked what the game plan was…

Well, back on treatment. I have had about a week and a half off. During that time I did a lot of juicing to detox, and it is easier to do the fun no fat diet. At this point, it isn’t my first rodeo with treatment and he kind of looked at me and asked what I wanted to do, that I already probably had something in mind. He does the same with my blood work, gives me a look at the sheet and asks what I want to add. I apologized for being bossy, but he did say me it was welcomed from me. Like I said, not my first rodeo haha.

I am adding some yellow chalky syrup to my mix, as well as my nemesis last summer. In short if you haven’t read my blog, I went nuts. Voices in my head wishing me self harm. The voices wouldn’t stop. Literally 24/7. Nothing could drown them out. It took about a month for it to go away when I stopped treatment. I had been on this antibiotic for years on and off with significant improvement, so it was just bizarre I had a strong reaction. I put two and two together, I had started a biofilm protocol at the exact same time, so I think a lot of Bartonella released and it was just way too much. I am giving it a whirl again though! Here goes nothing!

I started treatment a few days ago. So far, I am definitely bogged down and “fuzzy”, I guess you could say. The Mepron is definitely hitting some Babs, I am getting horrible night sweats. The back of my head and hair are drenched, and you can see where the sweat has gone through my jammies. I haven’t started Alinia yet, my Dad has to pick it up for me. I’m not really looking forward to it haha. I am getting the lump in your throat that you feel when you could possibly barf and I have that awful feeling of liquids sloshing around in your stomach that happens when you get super nauseated. But, I need to keep hydrated.

I am waiting on a lot of my blood work, so I don’t have an update on that yet. So far, everything wasn’t really too far off. A lot of on the fences but not out of range. My chloride was high though? That is a first.

The only test that was off was my vitamin D. It has been low normal for a long time… when I first got tested it was only a 13. That is pretty bad. Now it is a 24. I didn’t know how it could possibly be low, it is in my array of supplements. I did a little research and found a lot of vitamin D rich foods have fat. I am not eating fat. Secondly, I look at the bottle of vitamin D. Suggestion was to eat with fatty foods for absorption. Well then! That would probably explain it! But, I am now having to have a little peanut butter twice a day, so I am thinking by the next time I have a blood draw it will be better if I take it at the same time.

We are retesting for Myasthenia Gravis, as I always am teetering in the middle to high end, but never a positive. Immune complexes once again. Viruses. We had discussed Sjogren’s as a real possibility contributing to my throat issues, as well as my tongue issue, and a history of dry mouth on or off medications and dry eyes.

As I said, I am definitely not looking forward to adding Alinia tomorrow. Really not. I will definitely be herxy and if I am out of it now, I can only imagine how it will be with the add. I am pretty reactive to it. At least I know it is working. I think of it like this though.. treatment is not fun at all. But, you need to look forward and do what you need to do to get better. I am not a quitter.

How does that saying go?? My track record is 100% of getting through my worst days and that’s pretty good? I don’t know. It is some meme I have seen floating around. But yeah. That. I do have a perfect record! I will be okay, I just know it.

Since I forgot last time, here is Miss Olive, and the gang! I am never lonely in this zoo 🙂
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December Part 1 – It’s Complicated

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Hey everyone! I have been waiting for an array of tests to come back before I wrote again. Annnnd… I am still waiting on even more blood work to come back. I figured I would check in in the meantime!

It has been a pretty frustrating month to say the least. I feel like I am falling apart and am growing really impatient trying to find out all the answers.

I finally did the SIBO test and it came out negative. I ended up doing a poo test which I hate and was holding off on.

There was a bacteria, as well as candida and another fungus, so that would explain the bloatedness, inability to go to the bathroom (even though I have doubled the dose of magnesium citrate).

The neat thing about the test is that it showed what treatments were most beneficial to me, and ones that I am resistant to.

I am actually resistant to Diflucan, which I have been taking forever. The bad news is the things that are supposed to work for me I have been taking for months and nada. I guess it will take time and I will continue on with a clean diet and hope that it all begins to resolve.

The sleep has been absolutely ridiculous. I managed to be okay to make it to a friend’s baby shower but I absolutely need to have a few hours nap to go anywhere or it just isn’t happening. I have had to nap to do anything, I have napped at work, and even planning on going to my sister in law’s for Thanksgiving, I napped before we left, the half hour drive, and when I was there I had a quick snooze before dinner, and as soon as I got home.

I have been missing out on things like an invite to watch a football game, going out to dinner, and visiting friends. I am a pretty social person, even though I am a bit socially awkward, and to not be able to get out much is a big bummer. It really truly sucks.

During my first appointment since I last wrote with Dr. Steve (I must be a VIP patient by now LOL) , he did a little check out and low and behold I had an ear infection.

There was actually some blood coming out of my right ear. It doesn’t seem to bother me and was kind of new news to me.

He is a blood work kind of guy, which I love, so I had a full list of tests to get done. I didn’t have to get as many tubes drawn as anticipated, a lot of the tests could go in the same vial. I also got a Minion band-aid. Win!

With those blood tests, it showed my hormones are way off. The biggest issue is Progesterone being extremely low. I was surprised at this, even though I knew something was off, as I have progesterone injections and use progesterone cream. Hmm.

There was a test that was an AHA! moment. It is called immune complexes, and another that shows extremely better white blood cell information than your basic panel.

It showed that I had off the charts inflammation, and my body is indeed attacking itself.  The problem is, we aren’t positive as to why and what.

As a side note that I can’t figure out where to copy and paste it (brain fart), no one wants to have something bad on their tests. I will admit though I was happy as a pig in shit that something showed up. Finally. I was beginning to feel like I am friggin crazy, as I am sick. Very sick and nothing was showing up. These tests

The biggest possibility we are looking into is vasculitis of the brain. It is very rare, and my spellcheck even doesn’t recognize the disease hahaha. Joy. We are looking into an angiogram of the brain to confirm this guess, and trying to get as much information gathered as possible for insurance to cover IVIG treatment which could be really beneficial to me.

Another option we discussed was going on prednisone. Yes, I know it is a freak out no-no topic among the Lyme community, but you really need to outweigh the good and bad, and it can actually be life saving to those with conditions such as Addison’s, etc.

I wanted to look into this, as I know there are so many possible side effects, and I am learning that this is likely not a good option for me as I have Factor V Leiden. It can cause some extremely severe side effects even in a very short period of time. Surgery required bad things. Yup.

So I am continuing to get information together before my next appointment, and am wondering if we could make a case for the insurance that prednisone could possibly cause massive side effects.

Unfortunately, there is no way I can afford trying out the IVIG if it isn’t covered. I know also that it can kind of be a crap shoot. For some people it seems to be great, others it seems to do way more harm than good. If it is covered I think it would be worth trying.

We are going to run another blood test coming up that tests for more things that would maybe give a few clues to neurological issues that is more specialized than something Labcorp or similar companies offer.

A few new issues have come up. I usually haven’t dealt with a massive amount of pain for the most part with this disease as I am nearly all neurological, but my calves and back of my legs have been extremely swollen and excruciatingly painful.

They are not hot to the touch, but when they get like that, veins even begin to bulge out. Sexy I know. I have forced myself to use my bike a bit as maybe it is a circulation issue.

Underneath my jaw (maybe lymph node) has also become swollen. It reminds me of a frog when they puff out. You know what I am talking about, right? It is really painful and I am not sure what to do about it.

My throat isn’t sore, and although my lymph nodes on the side of my neck are swollen as they always are, they don’t appear to be quite as bad. Or maybe they don’t look that bad with this massive thing going on below my jaw. Haha.

Lately my head seems to have massive pressure… it doesn’t hurt at all but it literally feels like I can feel my brains being squished into my skull. Like my head is full. When this happens, I almost feel a giant wave come over me. I feel completely totally out of it, am oblivious to my surroundings and unaware. I can’t even talk. Nada. It passes quickly, as I said it is like a wave. Very bizarre. Maybe yet another type of seizure? I don’t know.

Even more nerve wracking, I am not sure what is going on with my eyes. All of a sudden, I can’t see. It lasts more than a few blinks, maybe 15 seconds or so? Just a guess. You don’t really keep track of time when you instantly lose your sight. It isn’t total blackness. It is beyond blurry, as I can’t see a friggin thing, like I am looking though the thickest piece of the type of glass that a shower has that you can’t see through, and a shade of grey.

I went to the eye doctors, and tis the season, I do have a tendency to have dry eyes in the winter and a little inflammation and thought maybe this was the case but there is nothing wrong with my eyes. My eye doctor doesn’t think I am crazy about Lyme and takes me pretty seriously, and really took the time with me to see if he could find anything that could be causing this issue. His only explanation is that it had to be neurological. Gah.

I did finally have my appointment with the sleep neurologist. The day before my appointment, there was a questionnaire for Dave to fill out, since he does see my sleep patterns and knows my sleep habits and lifestyle. He was out for the evening and of course I had to look at his answers. In a question about snoring and to describe this sleep behavior in more detail Dave’s response was, “More than 75% of the time loud snoring and other loud disgusting noises with her mouth.” Thanks hun.

Although she did call it, “Lymes” (pet peeve LOL), there was a little positivity, as I am actually having some testing done. I will be doing an overnight sleep study as well as a daytime one. I’ll call it a mini vacation?

Included in that will be an EEG, maybe there will be some sort of revelations in that as well. I just want some answers. Something isn’t right. And she agreed with me that something is going on. We just don’t know what.

She really believes that it very well could be narcolepsy as I fit right into the category or sleep apnea. She had mentioned a type of sleep apnea that is a little different, one that your brain basically tells you to stop breathing. Not like an airway sort of issue.

I had some pretty great accomplishments this past month. It sounds pretty lame for those who aren’t dealing with this all, but I am happy. It has been over two years since I walked in a Walmart. I walked all the way to the electronic section with Dave, and also the pet section to get our fur kiddos their food.

I didn’t get into a complete state of panic as I do in situations I know are going to be a struggle, my feet had no feeling, and I had to hold onto the cart to have some extra support.  The lights made me dizzy and I went into a complete fog. I made it though!

I had a day I went grocery shopping by myself, after 3 hours of work I should add, then continued on pushing myself to do some cleaning around the house. I really wanted to just lay down, but it was a huge boost mentally to do this.

In a few weeks I will be trying something called electro-magnetic therapy. It is supposed to help boost circulation and get rid of waste.  I haven’t done a lot of research on it, which is pretty surprising as you know I am the Google Queen, but for more information, it is called PEMF Therapy.

I am going to leave this on an uplifting note. It seems that this time of year is especially hard for the Lyme community, and we have lost too many people in the last several weeks.  It is heartbreaking.

I am exhausted and am mad and sad at what has been going on with me. I have kind of felt like I have been breaking down piece by piece in frustration. Why does everything have to not be cut and dry?

I do have days that I feel like an absolute rock star for getting some things done like like I have shared and not making a zillion rainchecks to Dave for him having to do everything.

But… that is doing the basics that I had once been able to do months ago. Even years ago. I am grateful to be doing anything at all as it is still an improvement from when I first started over 4 years ago. I will admit though, backtracking isn’t fun at all.

For every bad day I am really trying to go to bed with the mentality that tomorrow will be a brand new day. I will keep going, keep fighting. I really don’t have a choice. What is it that Dory says? “Keep on swimming?” Well, I guess I will do just that. Wishing you all a great day, and to continue being strong. We will get through this together.
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Can’t forget my Olive girl! Introducing Miss Olive Loo Who! Haha. She looks pretty pissed. Someone was not in the Christmas spirit.

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.

 

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