Long Hiatus

I Forgot
Ok so I am guilty of what many bloggers all do at some point in life. I forgot to sit down and write on my blog.
Ive been writing this blog for years, Im a bit shocked it was so easy for me to just disappear like that. E texted me this evening and asked me if it was a good thing that it has been 5 months since my last post. I had NO idea it had been that long! Not in the slightest. A whole lot of things have changed since February. Mostly for the better!

Okay so first things first. I finished another semester of school successfully. College Algebra included. That alone is a gift from God LOL.
I decided to do two summer classes this summer, Theories of Psych and Social Problems. Both have been rather fun and light classes to do during an online summer semester. I like the 1 class per month setup, im not so rushed to get things done. I just have my dedicated amount of time to spend on each class 6 days awake, but short amounts of time so I can actually ENJOY the class a little! I remember when reading was rocket science a few years ago.
Sitting down to read a book is still difficult, but for school I can do it.

Second! I went to see my Kansas Doc in March. WOW. Life has changed a lot since then. He started me on some new things for sleep which have made a significant difference in the quality of my sleep. We did the standard work up, I have it all written down and I will post specific details on it all soon.
My quality of life sky rocketed after this last visit to my doctor, like record breaking. Before I went to the clinic I was really starting to wear down again, feeling very flatline and tired. Not necessarily depressed or anxious, just run down. But I was going to the gym every so often and pushing myself, trying to get into the rhythm of exercising and exerting physical energy. My body had all forgotten what intentional exercise was after all these years, 13 years old was when all my formal exercise of any sort ended. Now I am 21 and I can do it again. Some days I can some days I can't, but what has made life different is the days that I can are out numbering the ones where I can't. I do still have limits, I am really pushing getting to bed earlier. I HAVE to recover and not over do it in my daily life if I want to be able to feel well and be able to exercise.
The first  two months after my March visit with my doctor I felt GREAT. Sure I still had bad and sucky days, but I was going to the gym 3-4 times a week for the most part and I finished the last half of the school semester. School, gym, and work. Never thought I would see the day.

Quality of life is doing much much better than in the past. Depression creeps in every so often, when it does usually I can take a look at something I had done in the last 24 hours and pick out the cause. Chinese food and MSG, WAY over doing it with working too hard and not resting, under eating-depression guarantees for me. Every time without a fail.

Anxiety. Heres a word that I, at one point in my life, had no understanding of. No comprehension of the effects that this little disorder could have on somebody's life. I had no idea anxiety held the mold to completely reshape a persons life and personality into a form previously unknown. This anxiety thing isn't for sissies! I had no idea how anxious and on edge I was all the time until it disappeared...
Thats right. I dont think I have had anxiety in months now. After the last visit to my doctor the anxiety and unhinged stress slowly started melting away and releasing. Like a wound up rubber band slowly popping itself free until no tension was left.
Who remembers when thats all I had to talk about?
If anxiety does NOT return with the onset of the new school semester, I think we will have truly witnessed a miracle. Even if it does return, I don't think severity will ever reach what it once was. Looking back about two summers ago when it was in its peak, I think I should have seen a psychiatrist and gotten some strong medication or something. I dont think I even almost recognized how severe it was. OR how strong I was to resist it during that time. I am so thankful that God kept me strong and I never fell victim to feeling sorry for myself or giving up.

Work! I am still at the same office working the same job. During the summer I work full time, which my dear bank account is so grateful for. Come this very full semester of college next month, my bank will shed a few small tears when my hours cut back.
Some things even at work have changed, Ive become much more social and have had much more bonding time with my co workers. I love them to pieces.
Earlier this year the problematic coworkers that all of us were bothered by (11 employees, 2 problematic, not kidding when I say EVERYONE) are now GONE. They are still employed by they are working from a distance, out of our space and out of our way! They're happy not being in the office being social (one of the two has a social disorder and regularly ticked people off) and we are happy having the space back.
I had forgotten how much I enjoyed my job. Some evenings I dont even want to go home, I actually think I rather be at work with my work family than with some of my friends from school. I must be growing into an adult LOL.

I go back to my Kansas doc in just a few weeks, two I think. I have already gotten my blood drawn for the lab work. Just waiting to fly out. I am still taking a crap ton of supplements and I pray that soon I will be able to reduce things, I am not on as many pills as I have been in the past but I am still choking down a fist full morning and night. I dont even ask that I have to discontinue them all. Just some. Pretty please
I have begun to slide down again on energy compared to what it was after my visit in March. I changed one of my adrenal supplements and it made a big difference and progress started coming back. I am looking forward to my upcoming visit, my baseline now is a mile higher than ever before. I have never gone into a week in Kansas, not anxious and in pain, never ever exercising, never working hard. Its almost always a downward spiral my doc has to pull me from.
The only symptom I would say is truly "returning" is my brain fog, which I have fought with and fought with for almost a decade. Again, if I could sleep am 8 hour night every night, my brain health would probably be out of this world. Sleep quality has gotten great, amount of hours is still rather lacking and not ideal. Ive noticed lately Ive been garbling my speech a lot more and I lose thoughts and sentences, so I know its coming time for a tune up again. I am glad this coming visit will be more of  strong jump start or maybe even a slingshot into feeling normal again, rather than my doctor pulling me up by the Grace of God from the pits of disrepair. He's going to be so shocked when he sees me next time.

I am still trying to push my fitness even though my energy has been waning a bit. I have gone to the gym twice this week. I am really trying to eat more, I haven't eaten a satisfactory quantity on a regular basis in years (probably the whole time I've been sick). Its time I quit starving myself and I make food a higher priority. I still don't enjoy food a whole lot or enjoy eating. I notice I can trick myself into eating a lot more at work when Im busy compared to when Im home doing other projects (read, I forget to eat at home). I have found a protein shake called Vega that I can tolerate, so I have been mixing it with some frozen fruit and ACV, creating what is now my breakfast and dinner. I learned protein shakes before bed drastically help my sleep quality. With these results, doing the shakes has become second nature. I mix them with fruits I like plus some kale or veggies, then heavily dilute with coconut milk to thin it out. If I make the smoothie very thick it will hurt my stomach, I still have to watch it with food. Hard to digest solid food makes my stomach feel full and painful for a while. MUCH better than it was in the past but it is still an issue. If I dilute my smoothies down and take digestive enzymes, the problem is better. Maybe my hunger (lack of) issue will be what begins to improve next time I go to my doctor.
My goal is to begin gaining weight, 6'4" and 136 or so LBS. Its time I look less anorexic and have more reserves. People who have a healthier body weight have a stronger immune system and are less likely to get sick. Thats mah goal here!
Since starting with the gym I have gained zero pounds since February. I took a look at my diet and realized how little I was eating (realized...again) and how lacking in protein it was. This week I started the Vega instead of the other vegan protein I was doing, the Vega is a bit higher in proteins. I still need to bring up the calories and nutrients as a whole. But this eating thing isn't easy. I have noticed a difference since I started doing protein shakes 1-2 times a day a month or two ago, my energy has become more consistent and holds out for longer.

In my more fun side of life, I bought a 74' Alfa Romeo Spider, it has become my baby. Its a cross between a project car and my own daily driving car. It was a solid driver. At first. I decided to drive the car to work one day, the thermostat stuck and overheating the engine...blowing the head gasket. This wasn't a bit deal, it was easy to fix this. While I had the engine torn apart I replaced a lot of other things while I was in there, thinking I was making my car more and more reliable (in theory I did). Well once the head gasket was replaced I took the car on some test drives around the neighborhood, honing in the carburetors and getting them adjusted (look, I know im supposed to be  millennial but I want to learn how this stuff works LOL). Aaaaaand a little 10mm nut came off a carb bracket, and went right into the engine. Thats bad. Whats worse, I did not realize that had happened. I eventually figured out the reason I couldn't adjust the carbs was because one cylinder had sucked in the nut and had become severely damaged in the head. I discovered this had happened when I took the spark plug out and saw the tip had been crushed, I knew this had to be bad. LONG story short. The head of the engine has been back and forth the the shop many times, with failed attempts to fix it. Now another head is being built for my car (I know most of my readers arent car people and this is just rocket science...BUT)and will hopefully be ready soon. Its taken about two months to get this far on this issue. The "new" head being built has taken almost a month to be refurbished from what it was, the shop hasn't been in what you call a hurry to get the job done. But if they do a good job, I can be patient. Im thankful it only hurt the head of the engine and didnt ruin the WHOLE engine. For this we are thankful.

I think this about brings everyone to where my life is now. Major symptoms-fatigue(could be worse), brain fog, insomnia, digestion.
Life problems-my car is broken.
But hey, all these issues are fixable and will be fixed in due time. Step by step progress gets made!

I missed blogging, truthfully I just havent sat down or really NEEDED to vent like I have in the past, but no that does not mean I will stop writing!

And I'm off...

If anyone reading this post suffers from chronic disease, you will get everything im about to say. If you do not have a disease, just hold with me.

As you guys may know, learning to deal with chronic illness creates a new way of life. A patient must learn his limits, what's okay and what's just too over taxing. Here's a few examples-waking up in the morning, never open your eyes then proceed to stand up. A waiting period varying from 5 minutes to 45 minutes is needed to avoid possibly collapsing on the floor from low BP.
Thyroid hormone you see is what gives you your early morning energy first thing. Lyme disease however attacks your thyroid, making it dysfunctional. When the thyroid function dips, so will you.

Next-we've wokem up, blood pressure is now at a functioning level. We are standing up changing clothes, normal right? Well, no. Depending on the day we have joint, bone, and or muscle pain. Once clotures are changed, bodily fatigue is beginning.

And then after this processs we may want breakfast. Not always, sometimes the morning is just too blurry to eat. If we actually need to eat, something simple and small(but healthy, junk food causes it's own a symptoms) like an apple is all that is consumed. Maybe not even the whole apple depending on the day.

And that's a regular morning for someone like me. I wake up, lay there until I can get up, grab an apple, then go to work and smile.
Lately my joints rarely cause a problem, bones are fine, but muscles are tight and cold. So changing clothes is tiring to some degree.
I started stretching and exercising mildly, I have had tolerable improvement. I can't over do the exercise, been there done that. Never ends in my favor.
I started the mild exercise a three days ago I think, and today was notably harder than before to get down on the floor and expend energy.
I only do my routine for 5 minutes max.

Anyway, I think I got distracted.

Chronic illness changes what a person can do. I saw something recently, and it just triggered me.
I don't know of a better way of putting it, but it just hit me.

The post was a happy parent bragging about how amazing their kid is doing. Working and doing school am obnoxious amount of time and a 4.0gpa.
I'm sad the say the only thing I felt was depressed and sorry for myself. I feel like I have fought to the death for the energy I have to work and to get my not so great gpa.
I eat a special high nutrient diet with minimal chemicals and garbage, I have single handily kept the amazon supplements companies in business, and I have had to fight with adults since I was barely a teenager to even get recognition that I'm sick and need treatment.

I have the disease that leaves me looking almost normal and feeling like I'm physically dead.
I eat weird foods all the time and I look anorexic.

And this disease is surpassing breast cancer and HIV by longshots...
But none of us get recognized. None of us get treatment. The only people that care are the ones who have experienced it.

Before Treatment update

Hello you all, I know it's been a little bit since I've said anything. No news is good news, this time.

I go back to Kansas for treatment soon, which I am looking forward to. This visit has the potential to be the last needed. I would love for it to be, but my guy feeling is that it won't be. 

This week I am trying to get back into juicing like I need to be. I have been doing smoothies, which is good. But I really do need to step it up a bit. Every time I juice consistently I feel significantly better, without fail. 

One thing that makes me think, is it the detoxing from juicing that makes me more alive or is it the nutrition.

I know I don't eat much, my stomach doesn't allow it. Too much food makes me nauseas and bloated(still). 

In a last post I had mentioned my kidney pain had taken off again. I drank an herbal tea for a week, which had almost gotten rid of it. The pain stopped, then came back worse. So I made up another herbal remedy, and stuck to that a little longer which seemed to have finished off whatever that was. It may have been some kind of UTI, I didn't have any burning, just major side pains. If I thumped my back it felt almost like a bruise.

This will be making my list of question to ask the doctor when I get to Kansas.

Another recent thing to have popped up is yeast rashes. I had 1-2, around my hips that weren't bad. I noticed them but didn't think much, figuring maybe it's heat related. I have had a yeast rash around my stomach that comes and goes. I put coconut oil on it and it goes away, until I sway to far from my diet for to long-then it comes back to remind me junk food isn't doing me any favors.

But these rashes are more resistant to the coconut oil. Several rashes had appeared and grew before I started doing anything for them. Which was probably my first mistake. 

Yesterday I started to crack down on them, rubbing in coconut oil with a couple essential oils to soothe the itching that has started. Today I did even more. Maybe tomorrow they will begin to sway...

In the past my stomach rash would disapear after diligently rubbing coconut oil on it. Though each time the rash has come back it's been more resistant to the coconut oil, which can't be a good sign.

Other than this I have been doing well. Fatigue isn't at its worst, neither is insomnia. The night before last I went to sleep at a resonable hour, which felt fantastic by the way.

I am hoping this is the beginning of many more restful nights asleep. I still feel like I have a significant ways to go...but I do enjoy the improvement.

I would say since my last visit to my doctor I have had some of the most extreme ups and downs...

Resolving the Situation

Guess what guys, only a few weeks before I go back to the Hansa Center! I am excited to go back and further my treatment. Each visit to the clinic has brought me to a better place physically and mentally. I still struggle with symptoms in between visits, so I will for sure be talking to my doctor about what to do. I will be treated for a week(5days) just like my last visit in April,

Anyway, I am glad to say this week has been so much better than last week. The last few weeks I haven't felt so hot, and I've had the gloom and doom thoughts. It all eventually manifested into another symptom, kidney pain. My kidneys began hurting again, at the same time all of my other symptoms skyrocketed.
When this occurred, it hit me-I can do something about this. Back around November my ND found I had a minor UTI, which manifested as side pain. They gave me a bag of herbs to make tea out of and it worked out well. My pain stopped after drinking the tea for a week.
So last week I made myself another batch of tea. I can't remember all of the ingredients, I know the tea contains marshmallow root and uva ursi. I made up the tea and drank 8oz twice a day. Hallelujah, a few days later I'm starting to feel my normal again. The doom and gloom disappeared, my skin even began clearing up.

Now after going through a pitcher of tea, I'm doing very well. The first three days of this week I spent over an hour outside laying in the sun. I know my vitamin D levels are low, it's been a while since I spent significant time outdoors. The heat will also help my joints, which are often cold.
I believe this has given me a little bit of an edge, since starting sun bathing my sugar cravings went away. It's not normal for me to crave junk food, but recently I have wanted more and more of the nasty foods. Maybe Candida is flairing.
I also have a small, quarter sized, yeast rash on my hip. So I suspect maybe my kidney infection/UTI (whatever it was) was yeast related. Just a thought.

Yesterday and today I exercised a little, it wasn't much but it sure made me happy. My body loves to reject any tiny physically straining, so a little weight lifting and stretching feels amazing when my body allows. My joins are less tight and cold and my back is more limber now, I love it.
In total I exercised 5-7 minutes both days, I pray this can become a regular part of my health routine.

I'm glad to have something positive to write for a change!!

Looking Forward

During the last week a good bit has been going on in my life, good and bad.

Last weekend I had the flu, I'm still trying to regain my energy. 

A few days ago I spoke to Dr.Jowdy for my one month update. He is very pleased with my progress.

At the moment I am trying to keep up with using the sauna. When I was on my trip I could not use it, several days in the last week I've had something come up and not had the time to get in...

So I am trying to get back on track with that, originally Dr.J recommend 3X a week. I would say overall I do closer to 5 days a week.

Today was the first time to use it since the weekend. I set it to 150F, got in at 130F, stayed in almost 40 minutes and when I got out it was 140F. So I did longer than usual and hotter than usual, it made a difference. I was not expecting anything much but I truly and honestly felt less fatigued after getting out. 

Of course half an hour at over 100 degrees I was kinda gross, I went straight to the showers after that!!

After my shower I decided I would continue my roll and make some juice and a smoothie. I needed rehydrating for sure. I made a larger juice and a larger smoothie than normal, along with 5 caps of Betaine HCL. 

I started the HCL last week, still tweaking the dose. I did a stomach acid test and found my stomach is not producing acid well, this leads to me not absorbing food as well. 

All in all and the added acid leaves me with less stomach discomfort after eating. When I eat it always feels like a rock is stuck in my stomach for hours. Even water does this. 

I haven't tried more than 6 capsules yet because I'm a little fearful...I've heard it's very painful if you take to much acid. I know I still need to reach a higher dose. I drank that smoothie an hour ago and I still feel it loud and clear. 

I mentioned already I spoke to my doctor. Between visits he told me to shoot him an email update with any questions and what's going on. 

The summary of how I'm doing is this-fatigue, insomnia, and concentration are still resistant. They are holding on strong. I am not sleeping as well as I did when I was staying at the clinic. That sleep only lasted a few days after leaving. Fatigue has been much better than before on average.

His response was its probably heavy metals I'm still detoxing. He recommended a product called Chelex to help detoxify those.

(Note this is a fraction of what I said and how he responded)

I am excited to go back to the HC, I am doing much better than before. I am not hasitling over trying to find a new herb or treatment to try on myself. I am truly healthier than I was pre-Hansa treatment.

But I still have work to do. My sleep is not consistent, my fatigue is holding on, and my concentration is all over the place. Plus I still can't exercise(which I forgot to mention to Dr.J...)

I don't know how many visits it will take. I hope it only takes this one more in a month but who knows. I am trying to stay focused on my life and my progress more so how much longer I will have to be visiting doctors and taking pills and remedies.

Feeling like a lazy Chihuahua.....

Today was a simple day, so not much to say in this post.  
I think a herx has begun...feeling extra fatigued and tremors are coming and going. My brain, is gone...mental fatigue is in high gear.

Something weird has been going on today, I don't exactly feel cold I just feel like I think I am(I know, confusing) and my hands were purple(like I was freezing) all day. Usually I am very hot natured, last winter I was wearing shorts until January. Today it was in the 50's and I was wearing long jeans and a hoodie, and turning purple. What does this mean?? Lyme problems...ugh

So I am going to say the 2 new supplements are giving me some kind of herx. The fun of the lyme life, whoo! always an adventure...

A Good Day WIll Always Return to Reality

Yesterday was a very long day. I was busy from the early morning until about midnight. Anyone suffering with chronic disease can tell you this, long activities take it out of a person.

I woke up feeling good and stayed that way throughout the day. I had fatigue and upper back pain but otherwise not bad, my blood pressure stayed up, no noticeable tremors, no nausea really. All good things.

At the end of the day, reality always returns. I felt good right up until I pulled into the garage late last night, as soon as I tried to get out of the car, my left side became weak, my joints began to hurt, and the soreness began. The adrenaline high, was over, back to my reality.

This is something I try to ignore, I like to keep my mind on the better side of the day. The adrenaline high from knowing that I have responsiblities that must be accomplished for other people, keeps me from giving out. I like being able to hide my symptoms good enough that other people can't outright see that I am sick. I have not been able to rely on many people since I've been sick, only other sick people seem to understand. I like being someone to rely on, I want to be there for other people. It gives me joy.
I can fake it for a while, but the adrenaline high is in no way permanent. When the fun and games is over, I turn back into a sick pumpkin and hit the bed.

I do try not to dwell on it, but it is a fact that shouldn't be denied. I want other people to understand this, we all want to live a normal life. Most chronically ill people keep information about their illness to themselves, other people cannot understand something they have never experienced. Its not the flu, we compare it to the flu but its not the same. Diseases cannot be compared, cancer isn't the same as ALS, lyme disease isn't the same as tuberculosis, a car accident injury isn't the same as a common cold. While these can all be horrible, horrible illnesses, they all feel different. On paper they may have similar symptoms but they each feel different.

Some things have just been bothering me lately, this is one of them. I can fake being normal about 95%, I never get told I look sick. I cant fake everything though...Like fatigue,  it shows in my dulled emotions, I cannot fake excitement that I don't feel.
One thing that bothers me is my strength, even though I feel better than last year in some ways, my body doesn't feel stronger.
Last year bicycling was my only exercise I could do. During the summer I bicycled about 80 miles. My neighborhood is around a mile long, so I would (on the good days) just do one round through the neighborhood, simple enough.  It felt good to be able to do this.
This year was not the same, I may have cycled 5 miles. That's a huge difference. That means I only went out about 5 times...last year 80, this year 5...what happened??

Its like that with any form of exercise, I have tried doing other simple things like push ups, sit ups, lifting small 5lb weights, I could never do any exercise consistently. I want to, I feel like I need to, my body on the other hand, says no.
This drives me crazy, my hands and fingers are noticeably getting weaker, its not very fast but its happening.. Same with my legs and back.

I wish I knew of something that could help this, but I don't. It just is what it is, and I keep moving on.

What is Chronic Fatigue?

This past week I have been totally out of it. I stay tired all of the time, but this has not been one of the better weeks.
One of the things I have sought an answer for is, why is fatigue so common?
Whenever someone gets sick, fatigue is one of the first symptoms. Why?

I don't have an answer for this one. My assumption is we feel fatigued from the body working overtime to fight infection. It seems to me fatigue should not be that hard to reverse. If we consume to the needed nutrients to support the organs, vitamin C for the adrenals, L-Glutamine for the stomach, probiotics for the intestines, and omega 3's for the heart and brain, the body should rebuild itself. Right? Obviously not, something is missing.

I have read through many threads on many forums, there are some people who practically supplement every nutrient the body could possibly need. Yet they still feel fatigued. Supporting the methylation process, the GAPS diet to rebuild the gut, and detoxification can all help...but its not all that common to for someone to say "I found that magic bullet that cured me". Don't get me wrong, all of these methods can be invaluable. The body needs all of these nutrients, sick or not.

     In my opinion, it looks almost like the body just doesn't use the food, supplements, medications, etc. that we provide well. Like the building blocks are there, the body just doesn't (or cant?) use them. I wonder why that is?

     Healing the stomach and intestines can certainly improve digestion and absorption. This can make a big difference for someone who has had
high doses of long-term antibiotics. Antibiotics kill the beneficial bacteria in the gut. These bacteria allow us to break down food sufficiently to be digested. Food that is not broken down enough cannot be absorbed and utilized. This would cause anorexia like symptoms even though the person is eating plenty.

     The fatigue, however, does not start after lyme treatment. The treatment can make it worse, but its not the cause. Fatigue is usually one of the first symptoms to appear, it was for me (along with insomnia.) but why?

What is there to curb this fatigue? I am still searching...