Sixth Treatment

Yesterday's treatment went well. My amazing mother drove me this time. We had a good time talking as we drove there. We talked about our family, thinking positively, why on earth anyone would want to live in the lonely and desolate (though beautiful) areas we drive by on our way to Pocatello and a variety of other things.

While at the clinic, I had the opportunity to meet Sara, Alicia's daughter. She only comes there every 3-4 months just for maintenance and so I was lucky to have met her. Her story is an inspiration to me. There's a YouTube video I watched a little while ago, before beginning my treatments at the West Clinic, which made me realize that if the West Clinic could help her they should definitely be able to help me. I had my camera. I wish I took a picture! But oh well.

I did the usual: Ozone bag with the light therapy and the Chronic Illness bag. My test results came back for my hormones and the results were pretty good. Both my estrogen and progesterone need to be up-ed some but aside from that, my hormones were quite stable. (Yay!)

I had a healing crisis that night. I was experiencing a strong bout of brain dizziness and then the body twitching/jerking came in. Laying down was uncomfortable but I was so tired. I sat for a while with my eyes closed as the feeling of die-off raged through my body causing my body to twitch, jerk and become tense in ways I can't control. I then laid down next to John. He stayed by my side, massaging my head and stiff, twitching arms. Have I mentioned how wonderful he is?

The episode only lasted about an hour then I was able to fall asleep. I woke up feeling tired but lighter somehow. I'm sure of the fact that my body shed some yucky spirochetes last night. (Another yay!)

I know I'm getting better and it's kinda exciting. Today, I feel for those people suffering with Lyme. They need to go to a place like the West Clinic - I don't know of any other answer for Lyme. I've tried being on a super good diet, I've taken all sorts of supplements, I've done an array of cleanses, and I've used homeopathic and herbal remedies for my specific issues and although all these things were good and they've created a healthy and strong foundation upon which I will heal more quickly, they weren't ever what turned things around.

Lyme disease is more serious than people think. John came to me the other day, almost angry, saying, "Ya know, people just don't realize what Lyme disease is. It kills people!" Yes, yes it does. Slowly, might I add. Like I said though, I'm so glad the West Clinic exists.

We're trying to figure out when we'll make that week long trip. Better sooner than later. But it's a little tricky with John's filming schedule and other things that seem to be getting in the way. It isn't until a month out that we have a solid open week. I feel confident, however, that all will work out the way it's supposed to in the end.

Memorial Day: reclaimed

It was a strange thing: I was nervous about Memorial Day coming 'round. I think I was a bit traumatized with last years experience. I don't care to go into the details of it but I had the worst brain inflammation that day that I've ever experienced. It was scary and oh, so icky.

So without realizing it, I was worried that because it was Memorial Day again I'd experience the same thing (silly, I know).

But guess what? It wasn't! It was the best day I've had in a long, long time. I planted our seeds in all three garden boxes, cleaned house, made five jars of Ginger Ale and went on a fun outing for a couple hours with my wonderful family.

They were doing face paintings at this event and there was only one lady painting faces. They were ending the event at 8pm. The time was 7:45pm. Millie and I stood in line ... as did about 15 other kids. So I went up to the lady, told her I've done face paintings at fairs and asked if she wanted some help. She was more than happy to have me help. I reassured everyone in line that I've had experiences with face painting and the face painting resumed, this time with two ladies painting the faces of anxious kids.

I'm happy to say that even though they allowed us to paint until 8:30, we didn't have to turn any of the kids away.

Millie sat behind me and waited patiently until I painted those faces that stood in line before us and we got to the original "spot" where we were waiting.

John's parents even made a visit after that whole busy day. I was pretty done by the end of it all and I can't say I'm fairing too well today because of it but I truly feel SO grateful to Heavenly Father for blessing me with a good day. I believe He knew of my inner fears and anxieties about that day and blessed me simply because He loves me.

The Truth

Children. They're so full of life. So full of laughter, unconditional love, energy. When I look at the pictures of myself as a child I feel a wave of grief. I'm so far from being that peppy little self I used to be. Sure I'm getting older but it's more than that.

Do I mention this or not? ... I don't know who will be reading this blog but I need to remember that I wrote this blog to be honest about how Lyme is affecting my life and to have some of the details of it recorded so that I can, hopefully, look back and say, "Wow! I got through that. I'm so glad I'm all better now!"

It's more than just getting older ... I'm dying. If I were to stop all treatments I might have another year, maybe two, at the most three left. My mind realized that truth just yesterday but I won't let that phrase hit my heart or soul. This type of piece of truth and reality would weaken anyone when it hits the heart or soul.

To my soul; I'm alive and will be fine. I'm getting treatments at the right place (finally!) and will get better. Heavenly Father does need me to do more of His work here on earth. My kids need me. John needs me. I'm needed here and will be spared.

Probably about a couple of years ago, for whatever reason, I had a bout of maybe 2 or 3 good days and was praying to Heavenly Father thanking him for helping me to feel better. The response from Him was, "It's going to be rocky." "What?!?!" was my ever so humble (hah!) reply.

"Why would that be His response?" I wondered. "How much more suffering could there be? How bad could it get?" I didn't really want to know. I was a bit disappointed to say the least.

I sure hope I'm at the end of it now. I know that die-off will be hard, so I'm not quite there yet. Just thinking about doing the couple of treatments per day for a full week makes me as nervous as if I was about to go into serious surgery. But I do hope and pray that the constant suffering will come to an end soon and that the struggle will ease up and even disappear from here on out (after my week long treatments).

Ya know ... that's another thing. I've had to dig deep within myself for many, many reasons. I've had to ask myself serious questions such as: Well, do I want to live? If so, what do I want to live for? And another issue I've had to face and be honest about is: Do I feel worthy of or deserving of living a healthy, happy life?

For whatever reason, I think that for a long time I didn't! There are so many inner messages we live with that have usually stemmed from the way we interpreted life while we were young and one of those messages that sat, unrecognized, within myself was simply this: Life is hard. It can't be good or something bad will happen. I am not worthy of having things be easy. 

This illness has given me the chance to recognize many of these negative messages that have influenced what I was attracting into my life and allowed me the opportunity to turn those messages around. Now, I don't feel that these messages are the main reason why I have this illness but I realize that it hasn't helped in the recovery either.

So in regards to that:

I deserve a happy, healthy, long, vibrant, joyful, AMAZING life!

Ahhh, that felt good! I really need to wake up saying that every morning. :)

And isn't that what that cute little face up top is saying anyway? My goal here is for me to return to being who I really am isn't it? Well, indeed I'll try!

Maybe that's one of the things that creates that untouchable innocence children possess. Their spirits rightfully trumpet, "I deserve a happy, long, amazing life!"

Yes. Yes you do, sweet child. And so do I. For, did you know, that I was a child once too?

Miracles

If there's one thing I've learned during this journey it's that God continues to be a God of miracles.

So many times in the past, while going through some of the hardest times during this illness, I would plead and pray to the Lord informing Him (as if He didn't already know) that I knew He could heal me. So why didn't He?

I would pray for mercy. Sometimes I'd pray in anger. Other times I'd simply thank Him for giving me breath and life every day. Oh He reminded me alright - "I'm keeping you alive" is what He basically told me. My soul would be thoroughly humbled and my heart filled with gratitude.

My dad called me this morning - my mom had told him about my needing to have appointments either more than once a week or go for a full week and continue with some appointments as maintenance afterwards.

I told him I'm going to the West Clinic next Wednesday, as usual, and seeing what Dr. J's plan will be for me. We'll see how much that'll all be and then we'll go from there. My dad informed me that he's willing to help out. My mom called right afterward to see how I was and to re-assure me (once again) that they'll help out. My heart is filled with gratitude to them for their love for me and their willingness to give some of what they work hard to earn to see that I get these needed treatments.

They, too, just like the rest of us, need their money though. I'm not one to sit back as I pull the money from their hands and take it easy from there on out. Yes, we've already spent quite a bit on my treatments in the past but no matter what, whether someone is willing to help out or not, we're going to see what we can do to help ourselves.

Cora and I

I talked to my sister, Cora, on the phone a bit later after those phone calls. She too, is going through some hefty trials. We had the chance to open up to one another about the things we're going through and learning from which, I know, strengthened our relationship with one another.

I was utterly surprised when, she too, offered to help out financially. She had already set something aside in an envelope. I don't even know what to say. Sometimes words simply cannot do "thank you" justice.

I told her about our idea to do a Family Fundraiser Fair but after I expressed to her my concerns about having enough strength to take on such a task (and seeing how we're already all kinda maxed out here) she brought up the valid point that maybe we should simplify it by doing a simple picnic and maybe, at the most, cook up some hot dogs people can buy and just have a donation box sitting there.

Her wisdom astounds me sometimes! She's right. So that's what we're thinking of doing as of right now. A family & friend fundraiser picnic.

If there's anything else I've learned from all of this - it's that neighborhood's, family, friends should be there for one another. It isn't easy even asking for help even if its in such a fun picnicky way but then again why not ask for help?

Why not?

Fifth Appointment

My mom, along with Tante (Aunt) Giesela and her husband, Onkel (Uncle) Manfred, took me to my appointment today. My mom was (and is) ever so willing to help out with whatever I may need to get me these treatments. She's watched my kids in the past but this time, feeling that John needed a break from these weekly drives and knowing that he needs any extra second he can get to get our business up and running, I asked her if she could take me to my appointment.

She was willing to do so and seeing as how Tante Giesela and Onkel Manfred are visiting from Germany and don't have much else to do, they came along as well. In fact, Onkel Manfred did all the driving!

They did the usual two bags today: "Ozone" along with the light therapy and the "Chronic Illness". I thought I was doing okay but realized, after being done with the bags and getting up, that my body was having a mini healing crisis. Shaky. Weak. Yucky brain. Twitching ... the usual. 

My mom, my Aunt and Uncle ran some errands in good ol' Pocatello while I had my treatments. I called my mom to let her know I was done with the IV bags and was just waiting to be able to talk to Dr. "J". She came in and sat with me while the other two stayed out in the car.

One little funny incident that happened was that as Dr. J., upon entering the room, shook my mom's hand she reacted by saying, "Gutentag." And then she just laughed that hearty little laugh of hers at what she had just said. (She just came back from a 3 week trip to Germany and is therefore still in German mode.) Too funny.

Trying to reassure Dr. J that I wasn't a hypochondriac, I asked him if he could ease my concerns that what I'm dealing with isn't a brain tumor. (The flare up's with the brain inflammation and vision disturbances kinda makes me worry a bit to say the least.) He showed me the dark field blood work he had done on me and then showed me photos of what it would look like if I had brain cancer. I was in the clear there. He told me he felt 99% sure that I did not have brain cancer or a tumor. I'll believe him.

As he (and Alicia) walked out the door I quickly asked a question I almost forgot to ask, "Do you think coming once a week is enough for me?" I just had to know. 

"No." they said in unison as they both shook their heads. 

"You should be coming at least two times a week." Dr. J. says.

"Okay." I respond. They walk out the door. My mom and I both stand up to leave and I lose it. The tears start flowing and I sit back down. 

"(Nah, was isten los?) Oh, what's wrong?" My mom asks as she lays her hand on my shoulder. 

I simply need to cry for a second. Alicia comes in the room again.

"I just don't know how we're going to make that work. Money. Time..."

"Don't worry. My mom says. Dad and I will make it work. Don't worry. We'll make it work."

Alicia informs me that they do have good deals with some hotels that are close by. She tells me that it really would be best to come even for a week or two and get a couple of treatments per day.

"People with Lyme heal so much faster if they can do that." She says. "Then they just come in for maintenance."

"I'll see what we can do." I respond.

By this time I've pulled myself together and we leave. My mom, ever so generously, paid for this treatment. $295. Add it to the pile. At least, this time, I'm getting some (not so pretty, yet necessary) results.

So what will we do? I'm not quite sure yet. We've been thinking about having a "FUNdraiser Family Fair". (I came up with that - thank you!) John needs at least one more week of 12-14 hour work days getting the site done. So maybe we'll go to my regular appointments, a week from now. And soon after that go and live in good ol' Pocatello for a week while I get those consistent doses. By this time the site should have been launched and it's the "advertising" we'll be working on. 

Whether we bring the kids or not, I don't know. I'm thinking the die-off will not be pretty. A) I don't want the kids to witness that and B) It'd be stressful on John to have to try being there for me and juggling the kids in a little hotel room ... BUT my mom is gonna be out of town for another few weeks traveling to Canada, Arizona and some other place with my dad for my his business.

There's a lot to figure out ...we'll see how it all plays out. Maybe we'll just wait out those three weeks, going once a week during that time, and after those three weeks are up then we'll stay there for a week.

I'm sure it'll all work out. It seems so often that humans/I worry, worry, worry about how things (especially complicated things) are going to work out but so often, in one way or another, they just do!

I'll bank on that.

Lyme: costly. Life: priceless.

We have spent over $10,000 in the last eight months trying to get me better. The first $2,500 was a shot in the dark as I saw a doctor in California who thought he could help me. He couldn't. He didn't even give my Lyme issue a second glance. But that shot in the dark made it possible for us to slip in some vacation time, enjoying the sights of San Francisco, which is something we'll always look back on with fond memories.

The next largest bulk of the money went to some wonderful doctors in Ogden Utah whom I saw for 6 months and whom I know saved my life when the Lyme and other things were causing bouts of brain inflammation.

The last doctor, Dr. "J", at the West Clinic, is the place that is currently where our money is going to and basically the last place I thought I'd ever have to go to. I was always hoping that perhaps the Lyme wasn't all that bad and that it could be treated through less aggressive means. But I'm simply so grateful that such places exist.

I wish I could say that we're filthy rich and that forking out all this money isn't an issue but we're not and it is. We've been incredibly blessed in the last year to have gotten some extra income which made it possible for me to have these treatments and make the progress I've made.

But life is real. Money runs out.

It's so easy for me to think of so many places that the $10,000 could have gone to: completely paying off our car, a new bedroom set (every now and then I get sick of our mattress on the floor!), stuff for the kids' education, multiple trips to Disneyland (we've never even been!), etc.

Vacation! Period. Forgive me for grumbling for a minute however, seeing as how today hasn't been a good day and my spirits aren't as peppy as they ought to be and I don't have it in me to play pretend...

We are burned out.

...John working like mad trying to launch our business as soon as we can... the financial stress of it all knowing we only have so much money left until it runs out and not quite knowing how this new business will do in its infancy... the kids stepping up and doing more than most kids do... the energy is pulls from all of us as we all deal with my trips to the doctors, my inability to go out and do much, my needing to lie down a lot, and those dreaded flare-ups that, whether you try not to worry or ya don't, it causes concern for everyone in the house.

We almost always hide the truth of how ugly these flare ups from the kids. They know I'm not well. I try to let them know it isn't normal to have a mommy that's sick all the time. But when things get real ugly we usually pop in a movie or send the kids to bed early and John sticks by my side, giving me blessings, comforting me as I break down after trying so hard to stay calm and be strong.

What can I say. We're burned out. I've been sick for over 5 years now. It's been the longest five years of my life and honestly, sometimes, especially lately, I don't know how much longer I can hang on. I don't have that same kick that beats from the core of my being, driving me to continue seeking after and doing what will truly heal me. I never thought that kick would begin to wear out as well. It's my will to live! One can't live without that!

I've been praying a lot lately - asking Heavenly Father to inform me as to whether or not I'm going to live. Is there something he still needs me to fulfill in this life? Or am I one of those people that, even though they still want to live, there are more important tasks at hand for them in heaven?

I don't want to be one of those people!

I love Heavenly Father with all my heart and many times during my life I've yearned to be with Him again but I have my children, my husband, my mother, my siblings. They'd be so sad if I left. I have things I want to do in life: I want to paint. I want to finish Language Land. I want to learn how to play the cello. I want to teach others how to eat healthy foods that heal the digestive system. I want to see and play with my grand kids. I want to grow old with John and experience that success with him that he and I have been working so hard to create. I want many, many more vacations at Bear Lake with my family.

I. Want. To. Live.

And right now, I want a long, extra long, vacation at Bear Lake.

Fourth Treatment

For my last treatment I was given an I.V. bag titled "Chronic Illness". I believe this bag contained the high concentration of Vit. C, minerals and the amino acids. I was also given the hydrogen peroxide bag along with the light therapy.

I was excited because I didn't feel so incredibly tired afterwards. My head felt icky (of course) but my body felt, dare I say, slightly energetic. The week went along fine. No healing crisis occurred even though I'm pretty sure I was given the same dosage that caused me that week long healing crisis before.

Today however, I awoke with brain dizziness, visual disturbances, overall icky-ness, extreme fatigue, body twitching and the usual head pressure. Not pretty. Something must be hitting me - which makes my body react to that instead of concentrating on the Lyme which allows the Lyme to be set free and wreak havoc with my entire system.

I'm anxious for my next appt. (which is in 1 1/2 days) to give me, not the Lyme, the upper hand again.

I met some fun people at the clinic this last time. It's always fun getting to know the different people there. One gal I met, near the end of my treatment, it was her first time there. She had been diagnosed with MS (surprise, surprise) from her previous doctors but really was riddled with parasites in her blood which were attacking her nervous system.

I also met two older guys the first of which said, "You look a lot better than last week. Are you feeling better?" Yeah. I'd rather not remember last week. In fact, I was so out of it I didn't even realize he was in the room during the short time that I was in there until they moved me to my own little room.

His friend, I found out, created video documentaries. He's currently working on a documentary on alternative medicine.

I also met two ladies (about my age) and enjoyed talking to them. We're all so curious as to what we're all dealing with. These two had serious hormonal issues, digestive issues and candida. They'll be going every Wednesday too so I'll be seeing them often.

My older sister watched my kids this time. I feel so thankful to her for her willingness to give up her day and regular routine (she has a wee baby, ya know) to watch my four, energetic kids.

I must confess to one concern I've been having: that the one treatment per week isn't cutting it.

Third Treatment

When others catch a cold they get the sniffles, a cough, maybe a headache, or even a fever. When I catch a cold my brain goes crazy and the Lyme goes wild.

Today was one of those days. I had a Lyme flare up while at the clinic. My head wouldn't keep still. My muscles twitched all over. My body spasm-ed in various places. Along with these silly symptoms comes an icky feeling, so terrible, I don't even know how to describe it. Icky. That's it.

I had the hydrogen peroxide and Vit. C. bags today. I was also treated for some of my head pressure issues. My body wigged out and it was a rough day to say the least.

My aunt (Tante Giesela) and her husband (Manfred) are visiting from Germany. So my father and these two were going to take me to my appt. just for fun today. Although I appreciate their kind gesture in planning a "fun" trip around my appt. (can Idaho really be considered "fun"?) I'm so very glad that didn't work out ...

In the book, The Secret Journey, one of the shipmates in the story said, "Some good comes with every difficulty." I wholeheartedly agree with this. One good thing that has come out of today (and many times before, really) is that my affection and admiration for John has grown.

He was right there by my side as my body shook uncontrollably. He stayed with me as I gave way to a fountain of tears as the doctor and his assistant worked on me. He held my hand and stroked my hair to help calm my trembling and breathing.

Words cannot express how grateful I am to have him be such a solid foundation that I can lean upon during my weakest moments.

Right now John is doing everything for our family. He's working 10-14 hours a day trying to launch our business by our goal date. He cleans up the house. He plays with the kids. He takes care of dinner. He drives 6 hours in one day, each week, to take me to and from my appointments. He prays for me. He gives me blessings. He sits or lays with me during any flare ups.

And he never. ever. complains.

I couldn't ask for a better best friend.

I've also felt closer to my family. My sister, Cora, was so good as to give up a day of her own to watch my kids from 8:30am to 4:00pm. It was so nice of her and I'm so grateful that she was willing to do such a thing and help the kids have such a great time.

.... Tired of being huddled away in my home, I tried to get out so I went to a church function. I lasted five minutes. That wasn't the greatest of ideas. But at least I tried. It just seems that people with chronic conditions tend to stay that way if they aren't trying to get out, do things and be around others. So, I'll keep trying.

It's kinda funny to look at the last three photo's that were taken at the clinic. Each time I've been there the picture gets worse. The first one I look pretty good. I wasn't feeling great but I wasn't feeling miserable either. The second one I'm feeling pretty yucky. The third well ... it speaks for itself. What will it be like next time??? I'm not worried though - I know I'm in the right hands.

Things may be tough right now but I know the treatments are simply stirring things up in not so pleasant ways as they kill the bacteria. The fight will be worth it.

And I will win!

Hm. Some people run marathons, triathlons, or iron man races. Although I'd love to be well enough to do such things, I'm simply anxious to win my race against Lyme!

Winning. That's what this is all about.

I can't wait to be me again.

Me!

"Healing Crisis"

As I had mentioned, Dr. West upped my dosage quite a bit last time, seeing as how I have "healthy" blood, he felt I could handle a healing crisis.

"Ha! 'Healing Crisis'. Bring it on!" I thought. Last time all I dealt with was being tired. "I've dealt with worse." I thought "I can deal with being tired."

Well ... the story goes: On our way home after this last treatment, John and I stopped off at a gas station for a little restroom break. Coming out of the gas station, my legs were so weak I could barely walk. I repeatedly bent over leaning on my legs saying, "My legs don't want to work!" So John carried me to the car. We laughed about it. It's all so silly sometimes.

I crashed and slept a few hours after getting home. The next day wasn't too bad. Some weak leg issues. Fatigue - of course. But upon waking up the day after that, things changed a bit. The healing crisis occurred. It wasn't fun. And was so ... real.

To sum it up I dealt with the following:

Brain dizziness.
Twitching throughout my body.
Tingling hands and arms.
Shaking and trembling.
Heart pumping like mad even while doing nothing.
Double vision.
Legs weren't working.(One of the most unsettling symptoms.)
Extreme fatigue and weakness.
Fidgety.

I had a few emotional break downs. I worried I was dealing with things other than Lyme die-off. Things like MS or CCSVI. It's so easy to let complete and utter fear take hold of your being when going through such an ordeal. Over and over again I had to use every ounce of my self control to keep myself from completely losing myself to fear. My whole body would burn with intense worry and well, fear.

My husband gave me a couple of blessings during this daily ordeal which always helped to calm my nerves and help replace fear with hope. I also asked him if he would pray and ask if what I was dealing with was only a healing crisis and nothing more. After he prayed he said that he felt the answer was that it was only a healing crisis and that I'll make it through it.

These words gave me great hope and I'm still relying on them today! I have another round of treatments I'm doing only tomorrow and am a bit nervous, to say the least, about having the healing crisis be intensified.

But, all will be well in the end. It's good to see that this treatment is doing something.

Lyme die-off is never a pretty thing.

Second Treatment

 

I did another round of treatments at the clinic. Dr. West had some good news:

I'm a healthy sick person. Yaaay! 

How is that possible? Well, even though my blood is infected with Lyme, my kidneys are taxed, there's yeast in my system etc. etc., my blood is actually nice and healthy.

My blood work came in and almost every thing they tested came out at a healthy level. Hematological things like my white blood cell count, blood platelets, hemoglobin, etc. and my blood chemistry such as my sodium, potassium, glucose levels etc. all came out right where they were supposed to be too.

Dr. West told me I get a gold star for having such great blood. He mentioned that it's quite rare that he doesn't "mark up" his patients blood paper work. I happily accept that gold star and will soak in the compliment!

I attribute this healthy aspect to a super healthy diet and some good genes. Now we just need to fix the chronic issues...

Now that Dr. West knows that, although being sick, I have a healthy foundation, he's upping the concentration of the IV bags, knowing that I can handle a bit of a healing crisis. That's fine with me - let's do it!

And so I did and it wiped me out - good! I was basically in bed from the time we made it back home until the next morning. But I really don't mind. I've had many, many health crisis' before. Some of them healing crisis'. Many of them a blasted Lyme crisis.

The healing crisis I'm getting from these IV treatments simply leave me utterly tired. Completely exhausted. My body feels like it's made of lead. I can barely move. I sleep a lot. But instead of feeling super yucky, knowing that it's the Lyme that's winning the battle, I'm simply super tired and I know I'm healing and that's what gets me through this.

This round of treatments consisted of two IV bags. One containing the Vit. C, Vit. B's and other vitamins and minerals this time is also included high doses of particular amino acids. The other IV bag was one where they draw some of my own blood and transfer it to a bag containing an oxygen rich solution. Before this mixture returns to my system it goes through a machine that hits the blood with a specific light that helps the body to heal and is particularly good at getting rid of yeast.

I have been through the ringer trying to find people who can diagnose me correctly and help me to truly heal with permanent results. I feel like I might just have found a doctor and a treatment protocol that can help me with just that!