May 2018 – Happy Awareness Month!

Happy Lyme Disease Awareness Month!  May is the month we share information about our health, our story, facts, prevention, anything to bring awareness to our illness.

 

We ask to wear green in our support. We ask others to post a fact, sit and watch a darn movie when they’re bored to learn about our disease (Under Our Skin). We ask others to bite a 50 cent lime for our cause (Dude, you could have done this while pounding back your Cinco de Mayo margaritas y’all were posting..) with little to no response unless you are involved in the Lyme community.

 

This is the month we look at our profiles and realize more people are more interested in our random memes or quotes, picture of our dogs, or even better, that picture you felt the need to share of what you had for dinner. It is the month we find out who has clearly “unfollowed” or deleted us entirely as they find our awareness posts completely annoying. Hahaha.

 

Been there. Whatever. Maybe SOMEONE will listen and learn. Knowledge is power! I’ll keep flapping my gums on my page. There are those who are genuinely interested I will admit to be fair, but this has just been an observation of mine over the years.

 

We have to keep at it though, and maybe someday more and more people will listen and realize this disease is a serious problem on so many levels. The inaccurate testing and doctors not knowing the importance of what to do at the initial time of a bite.

 

It is hard pressed to find anyone to diagnose or treat Lyme and other tick borne illnesses, and there is no “one size fits all” treatment. Lyme is not covered by insurance for the majority of our costs and it eventually adds up to a fortune. I could go on and on. You know this already though I am sure, if you are living with this disease as well.

 

It has been another busy month. I am disappointed to say that I have had a bit of a screeching halt in my treatment plan.

 

I have been doing aggressive protocols for the past several months, and they really seem to be helping. I have my ups and downs, which is normal for treatment but I truly feel like I have been making REAL progress.

 

Then one day, I woke up and my right arm was completely messed up. It was swollen and I was in an excruciating amount of pain. About 15 years ago, I was in a very bad car accident and required surgery. I broke my arm in two places, and metal plates and screws were put in for the breaks.

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I didn’t know what was going on. It wasn’t like I was doing something and had an injury. I just went to bed and woke up that way. It was warm to the touch, and I could see the plates were really pissed off. It almost felt like the day I broke it. It was beyond unpleasant.

 

I waited it out for over a week. I babied it, iced it, and used a brace doing things like typing or anything that could possibly aggravate it further without any improvements. With the advice of my massage therapist, I decided to pay a visit to my PCP to get his opinion.

 

Since his office is on my way home, I decided to just swing in to schedule my appointment. I held out my arm to the front desk girl and said, “I think I need an appointment to get this looked at”.

 

She told me to wait just a moment, and a nurse came right out to me and said I definitely needed it to get looked at and he would be available in a few minutes.

 

Unfortunately, my PCP is not a fan of me. I think a big part of it is that I am completely out of his realm of basic check ups and dealing with flu season. He is a doctor that you can just tell has an ego, and takes it out on me that he doesn’t know the answers. In turn, he treats me like I am doing something wrong and tends to be a grumpy prick.

 

He is flat out rude to me, and when I dealt with my whole tonsil ordeal, he did even say he didn’t want to be responsible for my care. Yeah.. I know. It is time to find a new primary care doctor, but the majority of the time it is just an insurance thing, I need a place for papers to get sent to since Dr. S can’t be my primary because he is an ND vs an MD. I never had to see my PCP other than an initial appointment for years but I keep having crisis after crisis it seems.

 

I figured I would bring up everything I could think of. First off, he is not Lyme literate whatsoever. I really had to bring up all the facts though, and one of them… I had just finished my last day of Levaquin. I know, I don’t need the spiel. We can agree to disagree all you want about these floxy drugs.

 

To me, they have had a tremendous benefit, so the risk was entirely worth the reward. When you are very sick, you really will do or try anything to get better and not question it twice in desperation.

This topic is a sore and opinionated subject to many, people tend to get argumentative as to why they are right, but that is just my opinion, as unpopular as it may be to some. I seem to get in a pissing match a few times a year, that I am trying kill people with my positive experiences and basically being a “drug pusher”. Trust me, I’m not.

Are there alternatives? Absolutely! Can you get better without them? Sure can! If you don’t feel comfortable, that is okay too. To each their own.

I have heard of LLMD’s somewhat forcing these drugs upon patients as if it is their only choice. It’s your body you have the right to request a different treatment, and everyone should respect that, just as you should respect those who chose differently.

Be informed on potential risks, but you really should be researching EVERYTHING you are taking. Why you are taking the drug, as I even see over and over again, “What is such and such antibiotic for?” What are those risks? Every single drug you put into your body has risks, some might come at a heftier cost, but it is important to do your own research. I honestly won’t even put a pill in my mouth unless I learn more about it. I don’t get it personally.

The “big guns” and most effective treatment was the right path for me, I got a lot of quality of life back. That is my two cents, my truth.

I had the argument of why I am taking antibiotics, and I eventually just said to him, “We are never going to agree on this whole Lyme thing. I was prescribed my medications by a doctor that is familiar with my situation, and your beliefs on Lyme disease really isn’t relevant here. What is relevant is the fact that I took Levaquin. I am telling you everything I know that might give us answers.”

 

The next fact I brought up, I was NOT given an antibiotic prior to my tonsil surgery. That is common practice having any oral surgery and having any sort of metal in your body. Your mouth is full of bacteria, and for some reason they can travel to your metal plates, screws, knee replacements, whatever you may have and can cause an infection. I got a “Yes, that is common practice to have this done, I am not sure why it wasn’t done”. Greattttt.

 

He measured my arm circumference and it was two cm larger than my other arm. I guess that isn’t huge? But certainly is a difference. It was warm still. He said there was deep tissue inflammation, and decided to order an x ray of my arm.

 

I went in the next day to have my x ray done. Want to know how much this doctor likes me? I had called exactly a week later and the nurse I hadn’t heard anything and it’s been a week. She told me she would look it up, and she couldn’t even open it on the computer to talk to me about it because he hadn’t even looked at it.

 

AFTER A FRIGGIN WEEK??!!! I could have had a broken bone, infection, a screw loose floating around in my arm.. who knows? What was the point of giving me the damn x ray?

 

So annoying. She told me that she would talk to him and give me a call back. Two days later, I had heard absolutely nothing. I called again. He opened it finally. At that point, I had gone to medical records to get my hands on a copy of the radiologist’s findings and a cd of the images.

 

Damnit. It was the ONE radiologist who is an absolute moron at the hospital.

 

My report had two sentences. I have plates in my arm and my arthritis isn’t significant. Wow. Thank you for that valiant effort.

 

Two years ago, this particular radiologist missed a lump in my left breast slightly larger than a pea. It was concerning enough while getting my mammogram that the woman left the room, showed the radiologist on staff, and they sent me to get an ultrasound the following morning.

 

She brought me over to the computer and showed me the lump that she was worried about and wanted to investigate it further. The radiologist that said I needed to get the ultrasound did not complete my report, yet this dipshit reviewed and finalized it. According to his findings, it was completely normal! No lump!

 

I had my ultrasound, and fortunately, the lump was fibrous tissue. I asked why there was a completely different report from what was explained to me, and the dipshit came out to the ultrasound room and was kind of  shrugging it off like, “Oh yeah, I guess there was a lump”.

 

I just wonder how many issues are missed by this radiologist. Maybe he goes by age and likeliness of having an issue or has an everyday case of the Mondays. Who knows.

 

Anyyywayyyyssss. The nurse called me back, she told me that my PCP put zero notes on it, he simply just opened it. She told me it looked like I possibly have arthritis, which would not account for my arm. So do I have arthritis now too?!

 

She was really nice, and we chatted for awhile. She told me an x ray wouldn’t show a lot of the things that would be helpful to me and that an MRI isn’t really possible for those who need one in the area they have metal in their body. She said the x ray wouldn’t show the tendons or the screws.

 

Kind of in a nice way, as she obviously works for this man, gave a big “WTF” that he hadn’t even reviewed it for over a week and that is pretty inexcusable. Yup. I would have to agree. She told me she could have him call and discuss this with me, but said I really should just skip it and get a referral to Ortho.

 

I got a call the next day to set up an appointment and actually got in relatively quick. A one week wait.

 

Of course, my arm was improving, that is just the way things work out. It was still swollen and my plates looked very off, but I at least had a visible wrist again. LOL

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I was having an off day when I went, and the florescent lights were really bothering me. I was in a fog, was having a few small Tourette’s bursts and was a sweaty mess. I gave him fair warning and he was fine and kind of acted like I wasn’t a hot mess. Cool. Down to business.

 

He was really nice, and took a good look at my arm. I kind of felt like an idiot because I had to ask him to repeat things several times, just to make sure I was understanding what he was saying, but I didn’t want to leave there all confused and not know what my issues were.

 

*Insert ominous music *  Tendonitis. Blah. I told him I just woke up like that, and it wasn’t like I was doing anything. I always baby my feet when I am on my floxy drugs, but I guess Levaquin is much stronger than Cipro and issues really can just pop up out of nowhere.

I will still say, call me nuts, I don’t regret taking it. Not one little tiny bit. Regardless, it is a huge reason I have been making great strides in my treatment. But I guess that one will no longer be a part of my treatment. Flipping sucks.

 

It then got more complicated. I do have nerve damage, which I did know as some spots are numb or tingly to the touch and have been forever. The real issue here is that I guess I have an abundance of scar tissue around my plates, and the tendonitis was aggravating the tissue more.

 

I wasn’t even really aware of this being an issue. The surgery was so long ago, and after awhile you kind of learn to deal with issues you may have, or not even really notice them anymore.

The only time I really noticed anything was weather changes it will get sore, but that is basically anyone with any sort of medical implant. A lot of us basically are walking weather forecasters. Haha. Arm hurts. Yup! It’s gonna snow!

 

He said there wasn’t any signs of tendon rupture, just plain ol’ tendonitis and it would continue to improve and keep doing what I have been and remember to ice it especially after doing anything like typing.

 

Since I was already there, I told him about my bum knee, that has been an issue for over a year. I heard a weird noise and fell. It still hasn’t been right, even after all this time. I can almost feel the inside moving and grinding, and it gets swollen.

I have noticed the movement of standing up is the worst. It gets very stiff in the morning and while that improves, it gets more painful as the day goes on.

 

I explained this situation to him, and he did a brief exam. He noticed immediately that it was swollen and full of fluid that he could even just freely move around, and did an x ray right on the spot, and reviewed it.

 

The results showed the beginnings of Degenerative Joint Disease., also known as Osteoarthritis. Then… he said to me, “You have a Lyme knee”.

Whaaaaaaaatttttttt???!!!!!!!!

He explained further that he has seen many knees effected by Lyme, and the problem was that people are not treated nearly long enough and run into long term issues.

*Jaw drops*  Is this real life???!!!!!

I lit all up in excitement and said, “YES!!! THANK YOU”!!!! I wanted to tell him I loved him but I think that is a bit too far especially just meeting the guy.  LOL

He gave me the option to work on the knee and the arm at the same time, or to do the arm first then revisit the knee issue.

The reason that I have waited to get it looked at is that I was dealing with my tonsils and that took way longer than it should have to be addressed, and I would like to deal with one crisis at a time. He completely understood.

Next time I see him, I will likely get the fluid aspirated from my knee and have an MRI ordered. He did say that it is a possibility from the fall that I tore my meniscus, and that could be why there hasn’t been huge improvements.

In the meantime with all of this going on, I haven’t been on the Lyme treatments and ended up working on parasites instead. My first task was to take the Albendazole along with Alinia. Well, it is $400 a day… and I needed 14 days. Yeah. That wasn’t happening.

I guess I will be a storyteller and tell you about a girl I know. Well, this girl decided to look into ordering this dewormer out of the country. In other countries, this is not a prescription, you can get it right over the counter. In the US, it is required to have a prescription.

This girl gave it a go, and ordered it online.

 

A) The second she ordered it, her credit card was flagged and frozen for the out of country purchase, the transaction was denied, and between emails and phone calls it was finally approved.

B) The package did not come from the country it was ordered from, and was shipped from India. The thing is, some meds from India are perfectly fine, but they do not have the same standards as the US for manufacturing. It isn’t really a worry the pills will be poisoned or anything, yet the matter of it being as effective.

C) The package sat at customs for over a week. This girl whom I speak of, was waiting for a knock on the door, busted for ordering medications out of the country, and taken to jail. Can you imagine? It isn’t like opiates, it’s a fucking dewormer. This girl is too little and adorable for jail.

D) This girl was not home, and her husband had to sign for the package. Uh oh! Was there someone waiting for a mysterious van to appear and take him away?!

This poor girl had a bit of stress about this all. But, her prescription was 60$ including shipping for way more pills than she would ever need. Not thousands. That’s just what I heard about some girl.

So, back to my treatment. I did end up being able to get the Albendazole somehow. 😉 I did a lot of research, and it scared me. I am usually not one to care about potential side effects, as it is potential and they just have to list them, but there was seizures, hair loss, liver issues…  a lot. As I have mentioned earlier, risk vs reward. I gave it a try. I always have a general rule with anything new to take it with Dave home in case there is any sort of adverse reactions.

I started off my parasite cleansing with something gentler, Pyrantal Pamoate. It was pretty easy to handle. I would get a lot of rumbles in my tummy and some cramps, but it was no big deal.

As I always give the good, bad, and the ugly.. in this case just plain gross, here is my report.

Day one, nada. Day two, there was a few things that were questionable, but I wasn’t about to “pan for gold” with my poo. It just wasn’t happening. No fucking thanks.

Black things, a ropey thing, some corn like things and I haven’t had corn for months, so I know that’s not it.

I would have to confirm that I have pinworms. Yuck! Remember my little wormy friend? I would have to say it was a pinworm.

I never had any symptoms of pinworms, so I was kind of surprised. I know one of the most common symptoms is an itchy bum, and I really didn’t have that issue at all?

All I can envision is people dragging their butt across the carpet like a dog hahaha. Who knows, maybe I am totally wrong on that one. Like I said, I wasn’t going to sit there and sift around especially with my tendency of butterfingers.

I am pretty liable to drop the pan or whatever you are supposed to use, poo goes flying in my bathroom, slip on it, fall in it, just a disastrous mess.

It was also hard to look things up, a lot of things don’t gross me out but when you type anything into Google, you get the most disgusting pictures. No. Just show me what the worm looks like, not explosive diarrhea with spaghetti in the toilet.

I always get a lump in my throat and my mouth gets watery, probably trying to hold in barf. I can clean it all day long, let’s face it… working in the restaurant industry and cleaning bathrooms, I have learned people are just plain disgusting. That’s fine. Pictures no.

I actually got Dave to do it with me, as usually an entire household should. I was in heavy anticipation.. even shooting him a text.. “Ya poop yet? Find anything good?!” LOL He told me, “  I think you are the only gross one here, I got nothing”.

Then came the Albendazole. I also had that crampy feeling, but it wasn’t bad. I think it was pretty much a clean up of what the Pyrantal Pamoate did. There wasn’t anything overly frightening.

Actual treatment had its ups and downs. On one hand, there was days that I was foggy, depersonalized, stuttering with practically every sentence, and pouring buckets of sweat. There were days I literally couldn’t move from the couch for hours, just spacing it and staring at the TV.

My POTS was back in full force. I had a few times that I had to completely stop what I was doing, even something as simple as gathering my clothes to wear for the day and lay on the floor.

I began to experience air hunger yet again. One night, I went to bed, and Dave said to me, “I can hear you breathing”. It is like a weight is on your chest, and no matter how hard you try you cannot get that breath of air in.

Bartonella tends to me anxious, now I honestly just try to sleep it off. Sometimes, I will admit, I will not take my Narcolepsy medication, or at least my second dose on a bad day. You can’t feel all of this while you are asleep, right?

On some days, I feel like Narcolepsy is a total blessing in disguise….I can just sleep everything away. I mean, I have a lot of responsibilities but I can cut it short and just not spend the day feeling all the nausea 24/7, the herxing. Out like a light. Letting my body heal I guess? Silver linings?! I have to look at it in some positive light, better than being miserable about it all.

I have made a lot of big accomplishments since I have last wrote. I have been running around doing multiple things a day; errands, cleaning, cooking dinner and not completely crashing. My biggest accomplishment of all, I drove myself to the DMV to renew my license!

This is about a 35 minute drive from where I live. I am pretty secluded to my less than 15 minute radius. My Dad had offered to take me, or Dave said he could possibly drop me off on his driving route and pick me back up.

I love that I can get that help if needed but I REALLLLYYY wanted to do something big on my own. There was a lot of days that I had good intentions of going but I knew it just wasn’t happening. Not only is it putting myself in danger, I wouldn’t want to ever put anyone in danger. I am a big advocate for pushing yourself hard, but when it comes to driving, know your limits. Don’t be an asshole.

I had a day that I had very little to do at work, so I was only there for a short time, and it was rainy and dark out. Perfect!  I have a really hard time especially if it is very bright out, even with sunglasses. In the rain I even wear my sunglasses.

I made a game plan in my head before I left my house. There is a Tractor supply about 20 minutes away, and if I needed to go home I could just camp out there and turn around. I didn’t really know how I was going to do..

I made it to Tractor Supply and sat in the parking lot for awhile. My anxiety was getting to me, which anyone would be anxious if they haven’t driven that far in years. I needed a break. I also notice neurologically I begin to have a harder time with controlling my speed, my foot just doesn’t like to cooperate and has a hard time keeping the same speed and I end up going much slower, or faster than I should.

I also get tired, which is a bad thing is you are a Narcoleptic… you can’t really push through especially with cataplexy… and have a tendency to forget where I am… even if I am just going 5 minutes down the road.

After my rest, I felt better and decided to continue on. I probably went another 10 minutes and made another pit stop. I have a harder time with highway-ish roads since it is maintaining a speed and going straight for the most part unlike back roads.

That was a short stop. I was very close to the DMV at that point and I made it!!! I stayed in the car for a little bit, which I am glad as there was a massive line, as there pretty much always is at the DMV it seems.

Done! My picture is disappointing I must say, I liked my much younger version, and between my swollen lymph nodes and being beat, I looked like a poster picture of a “This is why you don’t do drugs”. With the swollen Lymph I have been dealing with lately, my new picture is like a hologram. Hold my license downward, normal, hold it straight or up, massive turkey neck.

I didn’t even have to make a pit stop on my way home… I think it helps I wasn’t as nervous. I did stop however stop to pick up a celebratory pizza. I deserved it!

Dave was so surprised and proud of my accomplishment. “Really??!!!” He really isn’t one to say much like that but you could tell he was really happy for me. My family was also happy I made the trip. It is nice when people realize things are a struggle and give you some positive response to things that seem simple to everyone else.

I seem to be recovering (thankfully) from a phase this past month or so, the times I try to sleep off, where I worry about anything and everything and put scenarios in my head like how awful something would be.

Like what if one of my dogs got ran over. What is something happened to my parents? My brother? Who wants to think about that?! Ugh.

Bartonella keeps me up at night thinking about these things, and I have just plain been having insomnia as well. Believe it or not, you can have Narcolepsy AND insomnia.

I also get really bummed out on my birthday month. The month I see the age number get bigger and then realize I have jumped from 25, to now 31 and have a sense of feeling like I have been completely robbed of a chunk of my life. Can you hear my violins?

I started physical therapy, and it is going pretty well. I really like the therapists, they are easy to talk to, which is good as I am sitting at a table facing them when they work on my arm. It would suck if it was awkward silence or nothing fun to talk about. I knew I would like it there, as I had gone there for a very long time about 4 years ago to work on my core and legs after I wasn’t using a wheelchair and was starting to make improvements on my IVs with Dr J.

During my first appointment, we started off with some exercises to see where my baseline is. I was pretty surprised, even being right handed, my left is so much stronger, and looking at and comparing movement to my other arm I really didn’t realize it was so bad.

For the most part, a metal smooth tool is used, and a cream/gel is put on my arm and the tool is used to rub along my arm and scar tissue. I didn’t even know that some of the scar tissue could even be broken down. I thought it is there and that’s about it.

Today we did a lot more exercises, squeezing a ball with a massage like technique, and also to try to work on lymph to help heal the area. I was kind of bummed out, I was told it was even more swollen today and that it was recommended I use a brace again. Wahh.

I don’t really know what I want to do now when it comes to treatment. My body hurts. Symptoms are slowly beginning to creep back. I haven’t completely fallen apart or anything and I am doing really well for such a long break, but I just know when it is time. Annndddd it’s time.

I saw Dr S a few days ago, not for an actual appointment but for an adjustment. Every time I see him, even for an adjustment, we have a brief chat about what has been going on.

I was waiting for the big fat,  “I told you so!!!’, as he didn’t even want to give me Levaquin in the first place. He was fine with Cipro but he had issues personally with Levaquin, but I pushed him into letting me try it. That really isn’t on him that this happened though. Fortunately, he didn’t give me the “I told you so” I was expecting, and I told him how bummed I was as I have seen the incredible benefits, and I also don’t even get nausea with this drug.

My left hip was pretty unhappy, since I am using that to compensate for my bum right knee. We of course chatted a bit about what has been going on, and I booked an appointment for next week. Together, we will come up with a good new treatment plan, and I will be back on track again.

I had a little Lyme photo op with a good friend of mine, who has been going through a lot of what I have over the years. I am incredibly lucky to have someone that can relate and I can vent to, any weird symptoms she will know exactly what I am talking about, while healthy people will look at you like you have two heads. LOL Even better, she is only a hop, skip and a jump away from me! Love her lots, she helps keep me sane through all of this.

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Happy Lyme disease Awareness Month! Keep on fighting, keep on sharing, keep on educating. Maybe not all will listen, but if it educates a few, it is worth it.

Of course I can’t forget about Princess Puppyfarts and the gang! Someone apparently had a case of the zoomies when I was gone. Judging my their looks, I think Cooper might be the guiltiest of them all!

 

 

 

2 thoughts on “May 2018 – Happy Awareness Month!

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