Treatments 23-27

Well after that visit with my dear friends we went again about a month later - for another two treatments. After having spoken with Dr. Levy (vitman C guru and author of Curing the Incurables), Dr. J upped the vitamin C dosage. It wiped me out more than usual but I was happy to have boosted what I normally get.

I must say however, that I never really felt relief from symptoms like I normally did after those treatments. It was kind of frustrating.

About a month after that time I went in again - kind of as an emergency visit. I was fighting something off and was so incredibly weak and foggy brained from it. I felt a bit better after the few treatments and the thing I was fighting off for so long was finally able to manifest itself (a sinus infection).

After this visit to the clinic I began taking doTERRA's lyme disease protocol (using a particular line of essential oils to hit the Lyme bacteria in just the right way). AND I started taking this amazing new vitamin C called Lypo Spheric Vitamin C.

Apparantly, even according to Dr. Levy, this vitamin C is superior to receiving IV vitamin C. The body uses 100% of this vitamin C due to the vitamin C particles being encapsulated with liposomes/phospholipids which then, once ingested, is used by the body differently and is brought straight to the blood and to the cells.

Well, I was taking 7000mg of this vitamin C and doing the doTERRA protocol - and suddenly, it hit: the biggest Lyme die-off I've ever had.

Now, I've experienced die off. I've watched videos of other people experiencing full blown die off and never thought I'd experience such a thing. But I did ... arms and legs having spasms, joints feeling full of pressure, muscles twitching everywhere and that feeling! The most dreadful part of it all - a feeling so consuming, throughout my whole body as if the Lyme bacteria were taking on a life of its own and completely overtaking my body - it's terrible.

When a person sees a Lyme patient having die off they see the physical part of it - the twitching and jerking and the look of misery on a persons face but no one can understand the inner turmoil going on throughout the whole body's system unless one has experienced it. It is unreal!

It was hard, taxing, crazy - but I got through it and am happy that I can continue taking these supplements that are making a difference in my body. It took me a few days to recover from that episode but I felt SO much better after that.

I'm also super happy about the Lypo Vitamin C because it's such a wonderful and powerful supplement to keep in food storage and use for my family.

I'm currently experimenting with creating my own Lypo Spheric Vitamin C.

We shall see if I'm successful!

Treatments 17 - 22

I ended up going to the clinic just for one more treatment about a month after my last post. I must have been fighting something off because that treatment wiped me out for 2 weeks! But I recovered after that and was stabilizing.

I spent this last Monday through Thursday at the clinic with a couple friends of mine. I love them dearly. One of them had bladder cancer and still has some low white blood cells that she wants to see go back to normal and the other friend has Fibromyalgia and a handful of other issues that she is so desperately wanting to recover from.

We had a great time together! Some of our adventures were as follows:

* On our way there a car driving behind us suddenly lost its tire and quickly steered off the side of the freeway sending dust flying everywhere. The tire bounced across the opposite side of traffic and it just so happened that a police car witnessed this on the other side of the freeway and quickly went into action to help that person. What a blessing that the car didn't lose complete control and that the cop just happened to be there exactly when it happened! Amazing.

* Shirene working her "magic" and getting us the room we wanted/needed. When we got there we had been put in a tiny room that didn't even have a fridge or microwave. Shirene has outstanding communication skills and worked that skill to get us what we needed. In the end we got a spacey room with that fridge and microwave we were in need of, a fridge that was thoroughly clean, and a table with four working legs.

*  We were frightened to death a couple of times because the pot Amber was using to melt the cheese on her spelt bread was creating a lot of smoke (we had an indoor cooker) and we were worried that it'd set off the fire alarm - that'd be bad!- but with a lot of waving paper plates around, covering the top of the pot and opening the front door we managed to avoid the fire alarm from going off.

*  Shirene was a pro. once it comes to a particular Niacin treatment but on the third day Amber and I were given the Niacin treatment for the first time and had a great time of it. Our bodies burned like they were severely sunburned and our faces and skin turned bright red. Amber couldn't even talk to me without breaking out in a hardy laugh - my abnormally red face was too big of a distraction for a little chat. It was super funny.

*  Then came our adventure with a sinus treatment they did for me. They did an ozone injection treatment into my sinuses which bloated out my face so badly (which is totally normal) that I looked like I either took up professional boxing as a profession or I had a severe allergic reaction to something. I knew what room Shirene was in so I went and showed her how I looked. She just did an intense gasp and said, "did it hurt?" and didn't quite know what to say. But I just laughed. Next I showed Amber who also gasped in horror but then laughed with me as I darn near had a complete laugh attack and hid my face under a blanket. It was seriously funny.

*   However, seeing as how my body isn't as strong as it used to be, about an hour later, I went to get a drink and suddenly felt that I couldn't move. My body was wigging out. An attack was coming on. Amazingly (due to the goodness of God) as I kneeled on the ground and began to cry while thinking "Oh, John where are you.? I need you here with me. Somebody help me." Amber just happened to come out of the IV room and said, "Are you crying?!" She helped me get up. One of the nurses came over as well and got me into another room.

My body shook, my muscles twitched and ached, my heart pounded like crazy and my strength was diminished. Lyme. It isn't fun. But I recovered after a short amount of time and felt ever so grateful that Amber was there to help during that breakdown.

Although we were all quite exhausted from our treatments we had such a great time. We talked until late into the night. Watched Crocodile Dundee until 11pm. Ate together. Did treatments together. Laughed together. Napped together. Allowed ourselves to be couch potatoes together (watching several series of Reba and Leverage). Strengthened one another. It was wonderful. I'm so grateful to have had that experience with them.

We have all made progress with our treatments at the clinic and time will prove that more and more. I was surprised to find myself having more energy than I've ever had as I got the treatments during those four days. I wasn't completely wiped out like I normally am. Thank goodness! That says a lot about the progress I'm making.

As for today - I'm experiencing some good die-off. It's hard going through it but it's comforting to know that things are working and moving and changing.

I am so blessed by Heavenly Father and look forward to complete healing so that I can, more consistently, be the mother, wife, sister and aunt I want and need to be.

An Unexpected Gift.

I received a gift in the mail today. Call it a little miracle. Call it a completely unselfish act on the part of someone I may or may not know. Call it what you may. It was a gift - a gift I do not take lightly and am ever so grateful for.

Thank you to whomever gifted me with another round of treatments. I feel beyond grateful ... I feel humbled.

Thank you.

Treatments 14, 15 & 16

About 1 1/2 weeks after the week long treatment, I went for another 3 days of treatments. (We just got back today.) We decided to make a trip of it with our kids and so we brought them along, stayed in a 2 bedroom hotel and tried to make it a fun event. They got to swim three different times which made it totally worth it for them.

The kids got to see the clinic and watch as they stuck me with the the IV needle and drew out some of my blood for the ozone and light machine treatment. I think it was good for them to see what has been being done to help their mama. It was also fun to see some people I've made friends with over the last couple of months and have my kids meet them as well.

After the second treatment, on the first day, I crashed a bit. I slept from 6pm until 7:30am. And felt that I could have slept a whole other day if I didn't have to get up for another round of treatments. However, the second day's treatments gave me a bit of an energy boost.

We went home after the treatment on the second day where I still felt pretty tired. I'm now anxiously awaiting to see what improvements will take place from here on out.

So onward and upward from here on out. I love the West Clinic. My (new) life long dream is to find a way to get people who are sick and ill and get them over to the West Clinic - their expenses would be paid and their trip be made as smooth and relaxing as possible.

So many people are there that can barely pay for their visits. So many can't afford to go at all. I wish that wasn't so. Money should not hold people back from getting well - I want to be able to help.

It was so nice seeing some of the people I'm closest to - some of those that I pray for every night. I want so badly for them to completely recover. It amazes me to see the progress they've already made.

When I first saw Nancy, she had a feeding tube and was still fairly weak. Her husband took her from a hospital where, after a long stay there, her stomach having shut down and she being in a non-coherent state, the doctors shrugged their shoulders at them and told him to take Nancy and go home.


Knowing that she only had maybe a week left to live, her husband, being desperate to have his sweet little wife live, brought her to the West Clinic not quite sure of their "strange" ways of going about treating people. He brought her there anyway as one last ditch effort to get his wife to live.

A few months later she's alive, walking, talking, functioning. What almost killed her? Chronic Lyme and parasites in her blood, mainly. Oh I love being able to visit with her! It's been 6 months now and she's doing so much better.

The next person is Gayle. She also has Lyme and some other issues. She and I have symptoms that are quite like one another. I've loved being able to visit with her . She lights up my day every time I see her. How a woman, who has struggled for so long, still keeps that twinkle in her eye and smile on her face is a wonder to me! I'm so glad I've met her. And I'm so happy that her symptoms are disappearing. 

 I'm so grateful that the West Clinic exists not only because it's saving my life but because it's saved the lives of people, such as these wonderful women, as well.

Week Long Treatment

So after that last appointment, plans were made for me to receive treatments (two treatments per day) for a full week ... that week long trip took place a couple of weeks ago. My mom watched the kids for the first 3 days and my mother-in-law watched the kids the last day.

When we got to the clinic we found out that Dr. J was going to be out of town that Friday - which was a bit disappointing at first but then, figuring that things happen for a reason, we chippered up and continued on with the treatments.

It's pretty easy to sum up how the treatments went: the first night I had a killer head ache and that night plus the following days and nights I was quite tired. Every time I'd chat with my mom my answer to her question about how I was doing would always be, "I'm tired." No body twitching, brain inflammation, heart beating like mad ... it was pretty calm. I feel very blessed.

The next couple of days upon getting home were rather frustrating. My brain was feeling super icky and I wasn't functioning well. My spirits were quite down and I felt a growing burden. That burden existed because  my family (especially my father, a sister, my mother and many from church) were anxious to see if I was doing better. And, at that point, I wasn't! In fact, I didn't feel much better than before I ever started going.

Boy was I frustrated and angry.

BUT ... after those first two initial days, suddenly I found myself cleaning my house more than usual, running the kids around and not needing to take a nap during the day. I questioned myself a few times, "Am I getting better?" and I asked my husband the same thing. I'd think back on 2-3 months ago and realize that I sure wasn't able to do this much that long ago.


Two to three months ago, I was taking multiple naps a day and even when I was awake I'd keep myself busy doing things that allowed me to stay sitting. I'd miss out on going out and doing things with my family because I simply wouldn't be able to keep up or last that long. I'd have regular flare ups that would completely wipe me out and where leaving me alone at home wasn't an option. I couldn't even do the dishes anymore - it was all too much! My kids and John were doing everything. 


So yes, yes I was doing better! And unlike the past 5 years, where I'd do my own stuff to try and get better or be following a health specialists regimen and feel some kind of relief, the relief, the healing, felt more solid, steady, real and permanent. 


Although, because of so many past experiences, I'm still a bit hesitant to cry out and say it's totally working I really feel quite hopeful and happy about it all!


(The photo is of me on the last day there. The doctor's flight was leaving earlier than he had initially planned and so he had us come in extra early that day so that I could get the full treatment for that day. We were put in one of the rooms (instead of the usual IV room where I get to sit in a recliner) while they had their usual morning meeting in the IV room.)

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!

I've had this sweet little baby outfit hanging in my closet for about 6 months now. (John claims it's been closer to a year.) I bought it with the intention of having our next baby wear it. Although we already have four wonderful children, we've known that there are more to come. Two more to be exact. And I can't wait to get to that point.

Even before knowing I had Lyme disease, I knew something was so terribly off in my body that having another baby wasn't a good idea. Carrying a baby for nine months, having it rely on your body for its own growth and development and then giving birth to it and having all go well with that is so taxing on the body. And when a body is already severely taxed and has been so for many years, having a baby isn't exactly the wisest decision to make.

After a couple years of going from one doctor to the next and finally finding out that I had Lyme, I knew for sure that our gut instinct to hold off having more children was right on.

Lyme disease is easily transferred from mother to baby. Some doctors disagree with this. But there are too many mothers experiences that say otherwise. So am I concerned that my children might have Lyme? You bet.

Initially I have been most concerned about their digestive systems. Mine has never been up to par - thanks to the crazy amount of antibiotics I took for acne while I was a teen and the way I handled stress for so many years. All my kids manifest an impaired digestive system in one form or another; candida, sensitivities to pasteurized dairy, eczema and abnormal stool.

I never really worried that much about the possibility that they too may also have Lyme until I went to the clinic and they asked me if I thought my kids may have it. I told the doctor that I was a bit concerned about my youngest, Millie, having it because my condition flared up while I was pregnant with her.

It wasn't until I was receiving my treatment and speaking to other moms in the room that my concerns peaked. They too asked me if I thought that my children might have it. I told them my concerns about Millie and commented that she does always seem to have one ailment or another she's complaining about. But, I explained, I felt that she did this because she always sees me dealing with one ailment or another.

Truthfully, her repetitive complaints actually irritated me. I felt that she was only acting this way because she (I'm embarrassed to say) learned it from me. I didn't want her to become a hypochondriac.

One mother in the clinic said, "Ya know, it's my belief that children don't complain about things just to complain. They complain because something is really bothering them." The truth of that comment hit me hard when she said it and I began to tear up.

I felt so bad that I would always shove Millie's complaints away by saying, "You're fine." Flashbacks of her complaints crossed my mind.

"Mommy, my tummy hurts." - "You're fine."
"I wanted to cry in my (church) class and go to you because my foot was hurting." - "You're fine."
"Ow. My tummy hurts." - "You're fine."
"My arm is hurting." - "You're fine."
"My tummy isn't feeling good." - "Millie! You're fine!"

Lyme. It commonly hits the digestive system first. Muscle and joint aches that sporadically hit different areas of the body comes next. It's quite possible that Millie has Lyme. If left un-diagnosed and untreated it will wreak terrible havoc with her body, steal her life and be transferred to her children - if she lived that long.

I've been much more compassionate and caring to her continuing complaints ever since I returned home from the clinic.

All of my children will need to be checked for Lyme - especially energetic, colorful, strong willed, sensitive, constantly-dancing little Millie.

(This is one of Millie's dance interpretations of a particular hip-hoppish song. She spends time dancing away to an array of different songs daily.)

Having that baby outfit hanging in my closet, seeing it every day, makes it feel that having another baby is closer, more real and more possible that it otherwise usually feels. My Lyme will need to be erased. My health, strength and vitality will need to be restored. But we'll get there. One day.

I know it!

Lymie Friends

Being hooked up to an IV for a couple of hours at the West Clinic allowed me the opportunity to meet others who were receiving treatments as well. The first lady I met was a woman who flew in from Connecticut. Lyme Connecticut which interestingly enough is where a lot of this whole Lyme issue started.

This woman was probably in her 40's. She's a mother of nine. She's even a grandmother although you'd never guess such a thing by looking at her. Nor would you guess she had had Lyme. She had been getting treatments for the last seven months and was now only needing to come in once a month just for maintenance. I enjoyed being able to visit with her.

One other Lymie I met wasn't in as good of shape. She was as pale as could be. Had a feeding tube inserted into her nose and wasn't as lively as the first woman I chatted with. I did get a chance to talk to her though. Her husband was there with her as well so we got a chance to hear his side of the story as well.

Her health had been ailing her for many years, from childhood really. She did her best to hang on. She had surgeries removing her gall bladder and appendix. But then crashed just last Summer.

She became quite sick, sleeping most of the day. Her husband said she'd only be awake 4 hours in the day. They took her to a multitude of hospitals but they didn't know what to do for her. The last doctor they saw shrugged her shoulders at them and told them to "go home". Her husband told me that they did so knowing that she only had a couple more weeks to live.

During that first week they found out about the West Clinic and, not quite sure whether to believe in such hullabaloo, took her there anyway. She had to be wheel chaired in. She was unable to talk. Unable to eat. Her skin color was gray. She was on the brink of death.

Although she looked quite sickly to me (and maybe that was mostly the feeding tube talking to me) her ability to walk and talk and be alive was a complete miracle to her, her husband and her four young children. And she was only improving. Her feeding tube was going to be taken out in a week.

Her issues stemmed mostly from Lyme and parasites.

One person that I should also mention is Alicia. She never had Lyme. But her daughter Sara did. Sara had Lyme ever since she was a toddler - they weren't aware of the fact that it was Lyme that they were dealing with.

Alicia was the lady who took and analyzed my blood under the dark field microscope. She was such a great listener and so compassionate and caring. I know she's able to be so compassionate and caring because she dealt with the reality of Lyme, through her daughters experience, for so long.

Here's her daughters story.

Alicia lived in a motor home, next to the West Clinic while Sara received her daily treatments. Alicia informed me (a few times) that her daughter is now completely well. "She's like the energizer bunny" she explained to me a couple of times. I just teared up. The story is touching but the tears came because I want to be energetic again too. I want to be who I know I really am again. It almost seems to good to be true.

It was nice getting to know these people. We all seemed anxious to hear each others stories. We all understood each other. Related to one another. We knew that even though we looked okay on the outside - our blood was (or used to be) riddled with the Lyme bacteria that wreaked havoc to our health and slowly pushed us away from being well and from enjoying life. Instead it created a life of constant struggle, unpredictable days and near death experiences. 

Although these new found Lymie friends and I carry an ache in our hearts, the ache is covered with hope. We are all in the right place and we know it. It was exciting and energizing to be there with them and I'm excited to meet others as I continue my treatments.

New Treatments

I've been seeing the same N.D. for the last six months. The improvements I had were as follows:

No more flare ups with muscle weakness in neck and shoulders.
Gall bladder pain - gone.
Shoulder pain - gone.
Yucky heavy feeling in brain - gone.

So there were definitely some very needed improvements made but I still have more bad days than good. I felt that they got me as far as I could go with what they had to offer - labeling me as a "difficult case". Which isn't the first (or probably the last) time I'll be "labeled" as such.

I decided to seek treatment through a well known and reputed clinic called the West Clinic in Pocatello Idaho. They are known to diagnose, treat and cure "Lymies" (aka: people with Lyme).

There are many tests that were done while I was there. They did a test called a "dark field" blood test. You can actually see my blood platelets floating around. There was a lot that they were able to tell through this test and other tests. Here's some of what I remember:

I do in fact (still) have Lyme disease. About half of my blood cells are riddled with intracellular co-infections of the Lyme bacteria. My blood is also riddled with Lyme in its cyst form.

My kidneys are severely taxed because of the toxins (Lyme mostly) that my body is dealing with.

I have intestinal issues (an impaired digestive system) and am not digesting my food right.

 A lot of my blood cells are oxygen deplete.

My blood is also riddled with yeast - Candida to be exact.

Most of these things didn't surprise me. I wasn't aware of the kidney issue and I wasn't quite sure where I stood with the Lyme - now I know. I didn't see any of those nasty spirally spirochete swimming through my blood cells so I thought that maybe I didn't have Lyme. Maybe it was gone! Maybe my health issues were stemming from something else.

But I was unaware of the fact that the Lyme bacteria has several phases in its life cycle as it lives in our blood. Like I mentioned, it was mostly in its intracellular and cyst form stage - which to the untrained eye, like my own, wouldn't be something easily recognized.

I also thought that I've just matured a lot :) and have learned to deal with stress a lot better than I used to. When the doctor began speaking about stress I proudly (yet humbly, by all means) told him that I don't stress about things anymore.

He told me quite frankly, "That's because your body is so deplete of the things necessary that allow you to react to stress! Your hormones are shot. Your adrenals are shot. There's nothing there to allow you to feel, deal with or handle stress. The ability to feel stress is actually a good thing."

Oh.

So what do I do now?

I'm going on the GAPS diet. Which I had a hunch I needed to do anyway. This diet will heal my digestive system and be a great aid in restoring my immune system.

I'll be treated through IV therapy. If I lived closer they'd have me do the IV therapy three times a week but since driving up there and being hooked to an IV for 2-3 hours at a time takes up the whole day, they said I could get my treatments one time a week. If I regress any, I'll have to come in more than that.

It's a sacrifice for many. My husband who drives six hours total for me to get this treatment. Our family because we don't get to do extra fun vacations or trips because our money is pouring into my treatments. My mother who watches my kids while I'm away. My father who allows my mom to watch my kids and therefore has one less important employee working in his shop.

All these people. Sometimes I feel so bad. I feel guilty and it brings tears to my eyes. But I quickly have to shed those negative feelings and replace it with feelings of gratitude. Gratitude that I've found people who can gift me my life back. Gratitude for my family, my husband, my mother, my father who all love me enough that they are willing to make sacrifices to see me get better.

Getting better. Being whole again. That's what it's all about.

I can't wait!

My Remedies for Lyme

I have been amazed at how well homeopathic remedies work. They have literally saved my life. Every morning I take all my homeopathic and herbal drops and my small pile of assorted pills.

These drops and pills range from probiotics that heal my gut, drops that strengthen my immune system, remedies that fight off the Lyme, keep the Lyme that we've gotten rid of at bay, strengthen inherited weaknesses, give strength to my lymph and adrenal systems, support my gall bladder and liver, help to rebuild the connective tissues in my brain and other things I'm sure I'm missing.

I am so grateful that such remedies exist and am grateful for doctors who know how to find exactly what's ailing me and what remedies my body needs, can handle and will use.

Eye Opening Lyme Video

My eyes were opened to the devastating effects of Lyme when I watched this video for the first time a couple years back.



Fortunately this story has a fairly happy ending!

Darn those Spirochetes!

Videos: The Reality of Lyme

Purpose of this Blog

The purpose of this blog isn't so that I have a place to whine, cry, and get attention for my invisible suffering. Not at all. I took some time to read about other people's Lyme stories on the internet last night and, afterwards, felt that, I too, wanted to share my story. Even if my story is only one of a staggering amount - I like the thought of adding my story, like a drop of water in a large pond, to the stories of so many others. Maybe, just maybe, it will help others realize how real, debilitating, and serious this disease really is.

In my opinion, it's as bad as Cancer. Lyme disease is so evil!!! (and I laugh as I say this!). Instead of killing us off (which, heaven forbid, I have no desire to die) it tortures many, leaving us alive yet dying at the same time for many, many years. But eventually it can lead to death and has actually robbed many lives. But for the most part, thanks to this new and advanced life form called the spirochete, it mainly and "only" causes a lot of prolonged suffering.

If there are any passions or pursuits Lyme has given me it's that, as mentioned, I want to help raise awareness in others of how debilitating and real this disease is and help open others' minds as to how to go about treating this ravaging disease - antibiotics aren't the only way (nor are they THE way) of going about treating this disease, especially when it's in its chronic form.

More N.D.'s and holistic physicians need to share methods that work with one another so that successful methods of treating Lyme can be spread to as many doctors as possible and there needs to be a way for these millions of Lyme sufferers to know about, learn about and receive help from these doctors, without having it be like finding a needle in a haystack, to find them!

Also, Holistic Doctor's, Naturopathic Doctors and Lyme Specialists shouldn't have to feel that they need to keep what they're doing quiet or under the radar - especially if their treatments are working!

Much needs to be done - Lyme sufferers are caught in some strange crossfire. Suffering away and not sure about what method or which doctor can really help them!

The Reality of Lyme

Sometimes, even on my non-crazy brain days :), I laugh out loud at this whole experience of mine. "This is so real." I say.

Having Lyme disease, I do my best, every day, to deal with whatever symptoms I'm handed for that day. I'm constantly pulling myself together and doing my best to be strong, move forward, have faith, remain hopeful and remember that Heavenly Father is aware of my suffering, my strengths, my weaknesses, my potential.

I tend to suppress the reality of what I'm dealing with. "It's not that bad." my subconscious tells me. But then, many times, I wake up to how much and how long I have been struggling on a particularly hard day and think just that, "this is so real!" And it almost seems funny.

So, why not see a regular Western Medicine doctor? Along with going with my gut instincts or promptings of the spirit or common sense, I've done my researching. Antibiotics can help people who just recently and knowingly got a tick bite and got that bulls eye mark following it.

After you've had it for many years and it's become chronic (and your digestive system has already lost it's state of homeostasis due to an imbalance of good and bad bacteria from prolonged antibiotic use as a teenager because of acne) antibiotics are not the answer. Most often the Lyme may recede only to emerge later with a vengeance! Paralysis and death can or will occur in such common situations.

Kyla is one person dealing with Lyme. She explains a bit about this:

You might be thinking, “Why can’t you just take antibiotics if Lyme disease is caused by bacteria?” Well, you can. If the tick bites you in an area you can see, if you develop a telltale bulls-eye rash or other telling symptoms and seek prompt medical treatment, a heavy dose of antibiotics might do the trick. If, however, you don’t realize you have Lyme disease until almost 2 years later, like me, it is much more difficult to treat. The Lyme spirochetes are smart, and they are relentless. They burrow through connective tissue like a corkscrew, faster than things can move through your bloodstream. They encapsulate when they detect a hostile environment, and then reemerge later when the “coast is clear”. They enter and destroy tissue in every organ in your body. They literally “eat” brain tissue, causing memory loss. They like to hide in the pericardial sack around your heart, causing palpitations and heart damage. They damage your liver, your kidneys, and just about every other important organ of your body.

So what am I feeling today?

Woke up shaky

Lots of eye pressure

Tired

Muscle weakness esp. in shoulders and neck

Dizzy / Wavy thinking and visual disturbances

Muscle stiffness esp. in neck and shoulders

Inability to respond well to info. around me

Slight head bobbing when still

Today's not a very good day. :)

Symptoms

So what is living with Lyme like? Well, I can list the symptoms. 


Now, I don't deal with all these symptoms all the time. The spirochete bacteria that make up Lyme are an interesting bacteria.They thrive one day and retreat on others. They have a party in my brain one day and on others thrive in my muscles or joints.

Symptoms? Here they are:

Body Aches throughout back and arms, settling in arm joints

(I have progressed enough that I no longer deal with the body aches. yay!)

Shakiness (neurological)

Tremors (head, hands, arms)

Foggy Brain

Slurred Speech

Stuttering

Dizziness

Deliriousness

Disconnection from life and people around me

Neck and shoulder muscle weakness

Fatigue

Aches in certain areas on body for months at a time

Shoulder pain (gone too! had this for 1 1/2 years)

Easily irritated

Inability to process what others are saying to me

(this was the case, many times, on my worst days)

Head Pressure

Head Aches

Fidgety

Distant - lacking genuine emotions about life and others

Strange sensations while walking (unable to feel that I'm walking)

Strange constant visual disturbances (almost like double vision)

Body under constant physical stress of one kind or another

I believe that sums it all up. What would doctors label this as? Fibromyalgia. Chronic Fatigue Syndrome. Depression. MS.

No, my friends. THIS is LYME.

People's Voices

During my 5 year trial there have been many voices, usually from well-meaning loved ones, who had a suggestion or two for my condition.

The frustrating thing about Lyme is that I look just fine. "What's wrong with her?" people quietly ask "She looks fine." Yes. I can pull myself together enough so that I can function around people ... for short periods of time.

I remember one time, while at a meeting for a church ward activity, I was feeling so miserable. My brain was burning. My muscles were so weak. I couldn't think. I couldn't express anything in words that made sense. But I pulled myself together with every ounce of energy my invaded muscles could muster and got through it without embarrassing myself too much.

I went home and crashed. Life is like that quite a bit for me. Go to church (or most of it anyway) and crash. Go to a family function and crash. Go to some fun event with my family and crash. Goodness even go on a walk with my children! Crash.

Naps aren't an option for me. And it's hard. I want to be strong. I want to be fit. I want to go, go, go. I want to because I know that's who I really am! "The German Workhorse." is what my husband titled me when we were first married. "Look at Claudia go!" is what my gym teacher proudly exclaimed as I did push up after push up.

I'm competitive. I'm strong. I can handle pain beyond what most anyone I know can handle. I can endure hard things. I can have a good time. I can be humorous and sarcastic. I can run and run, pushing myself to extremes.

Lyme has changed all that. My nerves rattle at the slightest sudden onset of stress. I wake up super shaky on a bad day. I need to rest and sit quite often. I need naps every day. Pain is something I no longer handle well. My adrenals are shot. I'm constantly in a quiet mode, reserving energy for the constant healing and crisis my body is under.

I do have some good days though. Good days aren't free of symptoms, ever. But I, for whatever reason, have energy that day and feel like life's going to be okay. That even though something might not be going quite right, things will be okay in the end anyway.

So, when those well meaning voices come: "Why don't you just exercise?" "Where's the doctor that can give you that shot to fix you?" "Maybe you need to take more vitamins." "Maybe you need to let go of emotional issues." I do my best to handle them well.

If I were to say, "I have cancer." Anyone and everyone would have compassion, would pray for me, would be understanding of any random ailments that come my way. But with Lyme the reaction tends to be: "What's that?" or "She looks fine." or "Yeah, sometimes I worry about every little ache or pain too." or "She's still sick?"

However, today, I can just smile about such comments and shrug them off. Why would someone understand? No one can or will unless if they've been in the debilitating, quiet grips of Lyme.

It's okay if no one understands. All that matters is that I get better and that I will be able to live life to its fullest, enjoy my children, my husband, and this wonderful opportunity of living on earth that I've been blessed with.