Feeling Off

Always Something!

I posted a few days ago about being depressed at night and that I have felt frustrated lately. Today is my addition to that post...

I'm not sure what's going on with me at the moment. Last night I didn't have the extreme depression that I had been experiencing, which is good. Buuut, I still just don't feel right. It's like I get to try out the normal other people get to have. A test drive. 

It's great while it lasts and I use my well days to the fullest extent, without over driving my system. But when it's all said and done-there's my old, worn out body in disguise pretending it's better. Why wellness doesn't stick is something that stays on my mind. I stay positive, I eat well, I follow the doctors orders, I know I really can do this! But there is a normal that I just cannot escape. 

I hate even calling what I experience "normal" because it's anything but that. Anyone else who experiences it will agree, I'm sure! When all is said and done, it just is what it is. I will follow the path I need to take. I will do what my doctor says and I will continue to treat my body well. In the end, time will be what it takes. It takes a strenuous amount of time to build something, rebuilding something(anything really) is just as much if not more of a challenge.

That's what chronic disease is, it just so happens my chronic disease is Lyme disease. 

Why is that important? I don't know. Bacteria can be killed and damage can be stopped, but we have no way to measure progress with an infection such as this. It's all clinical, an educated guess.

My symptoms are better than they have been the last several years. I say that in about every post it seems....but I still don't feel well all the time.

Tonight for instance, I have a weird, light headache. It's like slight pressure, not enough to hurt but just enough to annoy me. Then I have nausea. I can't eat too much at once and I can't drink to much at once, that is just way too overwhelming to my stomach. Is it Lyme doing this? I have no choice but to assume it is. 

There isn't anything to be done about it. I will get over it one day. I just have to keep working,

And working 

And working 

And working 

Post of Frustration...UGHH

When is it over?

I am looking forward to the day I can walk without aching knees and lay down and go to sleep. That's what I'm starting today's post off with, because it's a positive outlook.

Now for the rest. I am depressed. Just to simply put it, I feel like no matter what I do, I will always have bad days. That in the end, I have only had band aids to my body and when therapies are stopped I'll regress. If I don't stop I feel like I'm throwing my time and energy out the window because I may not get better.

Its a lose lose situation!

I do the therapies, meet with the doctors, educate myself, find the next best thing, but am I just making things better now. I want to be better all the time-24/7. I believe in my doctor. I believe he gets patients 100% well, I believe I will be one of those patients. I'm just afraid it will be years and years upon more years, before I get to be one of those patients to get well...
I know I have written many posts this year talking about my improvement. I have improved greatly, even now I am better than I have been. The process to get well is just so slow and I feel alone when I'm not well.

I need to elaborate when I say depressed. I'm not standard depressed, I just get depressed at night. During the day I usually have no problem. At night, I feel like it's the end of the world. Like everything I do is worthless, that all of my actions of the day were wrong, I could have done/said/planned whatever it is better and what I did was a mistake, I just start to feel like I have nothing.

I don't know what to do about it. I haven't told the doctors because I know it will resolve with treatment and on some nights it's not bad. I don't know if that's a good choice of not, but I don't want anymore tests that get me put on anymore pills that aren't a permanent fix. Ugh...I feel like I have an amazing doctor, but many days I still feel like I have to fend for myself.

I know I have stated a hundred times before I don't sleep at night. I don't sleep much at all and its late when I finally get to sleep. It just is what it is these days, I sleep better during therapy at the clinic in Kansas. That's good. But that's it. At home I go back to my normal sleep patterns.

This week I am doing brain wave optimization therapy to try to get my brainwaves back in gear. I hope it works. But I'll be honest, my first thought when I started this therapy wasn't This is it, after this I'm going to sleep normal again. My thoughts were, this is boring...what's the chance it's even going to work.
It's not that I don't have faith in the therapy, buy I've just done so many different therapies and remedies in the past....I still don't sleep. Is this really going to be it?? I mean, I'm tired of doing so many different treatments.

It's depressing not being able to do what other people do. I want to get up and go to work, I want to exercise for fun, I want to throw out all my medicines, I don't want to know my doctors home phone number!
Can I tell you what it's like to become chronically ill and your own doctor at 13? It's hard. It's complicated. I wouldn't even know where to start, so I'll just say this,

It would be nice if I could go online and find a study saying XYZ treatment fixed X-Lyme disease problem 100%. I can go online and find all sorts of official, authenticated, backed studies with a bunch of diseases showing what will be beneficial and what's not. Treating Lyme disease is like gambling, who knows what's going to happen.
That goes for traditional, alternative, conventional, whatever you chose treatment. None, NONE have anything to back them with enough information to give people a cure for the disease. Kill bacteria sure, you can find studies about killing bacteria,

But it's not about killing the bacteria, it's about making the patient LIVE!

Share Your Story!

Share With the Chronic Community

I would like to reach out to people who read my blog today.  If anyone would like to share their story on my blog please send me an email. I would love for anyone out their to be able to share their story, especially what got them/gets them through hard days. On my worst days I always searched online for someone post somewhere, anywhere, blog, forum, whatever-I just wanted to see someone's story where they shared what they went through, and the positive things they could find to say.

Chronic disease can make some one grow exponentially, spiritually. What good are our growths with life, if we can't lead someone else through something??
This is just how I see it that is, haha.

I would love it if anyone with a chronic disease could email me at itislyme@gmail.com and I will share your story on my blog.
You can remain totally anonymous if you would like.

Thank you!!

Grey Skin and Red Juice...what

Haha, a kitten different from my normal title themes right?

Sauna Update 
This week I have been trying to get back in the swing of what my routine is supposed to be. That includes, sauna twice a week. Today I only last in the sauna about 20 minutes, which isn't long enough. Usually I do 30-35 min, 130F.
I guess this is a sign I need to be more consistent. It's just been so hot outside, getting in a hot sauna just does not sound fun...but hey, it makes me feel better and that IS fun. So I'll do it.
As long as my mind doesn't forget...which its all to good at.

On another note, I have an interesting story about using the sauna recently. After I get out of the sauna I usually go and take a shower. I use baking soda on my lymph nodes around my armpit to help  clear them out(more on this later), and because baking soda is also an exfoliator it removes dead skin. Here's the odd part, the baking soda and dead skin turned blue...like bright grey almost teal blue. Also there was a lot of dead skin, which Is another unusual thing...
My thoughts are maybe heavy metals coming out after my short sauna hiatus??

My Diet
I'm a diet nut. Not a secret, but I suck at eating. For whatever reason I can't eat much food before I feel extremely full or even nauseas. To avoid either of these happening I have found a select few foods that are easy to make and take little energy to produce, anyone who eats healthy(low sugar/GF/DF) knows these foods are few and far between.
So I tend to get bored with food and start eating junk food that I don't need to be. Not because I want it but because I just get sick of eating the same food day in and day out, over and over.
It's time to get back into healthy eating, consistently. I haven't really been that bad, but I would feel better if I cut the crap out altogether.
So today I made a big glass of juice, two actually. One to drink and one for breakfast when I don't feel like cooking.
Instead of the usual green juice I mixed it up and made red juice using strawberries, plums(from a friends tree, kale, carrots, pomegranate, spinach, and ginger. It wasn't bad, tasted a little odd...but I've made worse lol

Feeling Dragged Down

I think I'm awake

These past few past weeks I've been feeling sluggish. As if I'm not even awake, not tired and knocked out, but mentally I feel like I'm in a dream. When I read something it's as if I'm absorbing nothing at all, staring at a page sloooowlyyy dragging through a sentence. <lost focus at least 4 times to type that.

I realized the full moon is coming up. Parasites and virus tend to bloom around this time, so it must be time to give them a whack with somethin. I have to admit, I haven't been using my infrared sauna as much as I need. So today, I got in for a time like I'm supposed to. Ha.

I rarely fall down in doing my different treatments..but I have to be honest. It's hot this summer, it's hard to get in a hot box...

But I did it. I've been instructed to use it twice a week. I guess I should step it up.

Anyway, the sauna should help knock out viruses. Parasites are next, I found some Humaworm I had stashed away. I'll finish it up. 

My doctor already has me taking something for parasites, so I have my doubts it's anything more than virus. But the herbs in Humaworm will be beneficial for parasites, virus, and yeast. So my bases should be covered for now,

It's also entirely possible I have a yeast flare up, it's been a long time since candida has been a problem. It's been off my radar....

Something else to keep in mind.

Anxiety Steming from...Where?

Today I have something to report that I don't mention often. In my last post I mentioned how my allergies have changed my mood and overall feeling lately. Today wasn't so bad, less allergy problems than the day before.

Something out of my ordinary did happen though. I had to go out and do some things, nothing strange or out of the ordinary, just a few errands.
But today, it was hard to leave the house and be around other people. Knowing I had to go out and speak to people while doing something slightly out of my routine, became stressful. I thought ok, I can do it. I am not doing anything hard, I just have to go to the Post Office and get some stamps and Mail a few things. People have been doing this for over a hundred years, it isn't hard.

Yet still I felt reserved and almost afraid. But I made it through the Post Office fine. I mean I do feel like I could have personally delivered everything I had to mail cheaper than that book of stamps was, but whose got time for that. Hah.

After buying stamps I had to go to the ATM. This should be fun, I'm gaining not losing money today-whose complaining! Well today, I guess I was. This kind of anxiety/reservation is rather out of the ordinary for me. The thought of driving up to the ATM and doing what I need to accomplish with a line of cars behind me watching my every move, was rather stress inducing.

When I actually made it to the ATM, and took a step out of my marathon running brain, it all went fine. Quick and easy. I was the only car at the bank until the last minute. It couldn't have gone any better I don't think. Still, on the drive home I was back in my head. Creating more stress and anxiety.

I felt nervous and afraid. Like I was totally powerless against everything, even though I had nothing to go up against. No reason for it, but even when I was back at home the feelings continued. My hands even started shaking. Not for long, but I was having tremors out of my usual.

Today was an unusual day, but it did get better before the day was over.

I cannot imagine what someone who has an anxiety disorder such as PANDAS has to live with on a dailey basis. The anxiety from an average day is taxing, but even more so on an extra stressful day experiencing something out of the ordinary routine...
Wow

Allergy Flare

It's been a little while since I have posted much. Before I was feeling well so I didn't have anything to say. The last few weeks on the other hand, I haven't had much to say because I haven't felt great.

I haven't been doing bad, just haven't been myself.

Something must be blooming outside, because my nose is running a marathon. I have reached Squirel hoarding status with my tissue stash...haha

Lately I've just been feeling a little under the weather and just not totally present. The lights are on but nobody's home. The allergies have also been keeping me awake, solid awake through the night. This past night I officially went to sleep at 5:30am, then woke up fully awake about 11:20. I woke up a few times or maybe even several times, and that's what seems to be the routine at the moment.

I have been taking HistaBlock from Natures Sunshine, but my bottle has run out. Allergies are a little unusual for me, so I don't keep anything on hand. Even in my oils, nothing good. Haha, I think this this is a sign I am not prepared for everything, I used to have a bottle of anything I needed back in the old days. I guess this is a good sign I haven't needed as much, that's a plus.

It's just been like I'm in a fog, my brain isn't here. Like I can sit with someone and miss everything they said or forget they are even there altogether. That's unusual for me. It's normal for me to forget what someone says to me, but miss it altogether...not cool.

On another note. I finished my supplements last Tuesday, until I go back to Hansa. I do have to continue on one remedy for parasites until I return, but other than that I'm free.