excuse me while i vent.

Ok. My life so freakin’ sucks right now. I struggle to start my day.. not because I am depressed, it’s because my freaking legs hurt so bad I don’t want to move. I’m freaking 36 year old on the verge of being an invalid. I am a full time student and a freaking horrible homeschool mom. I SUCK at being a wife. I hate being a wife. I don’t want to do it anymore. And the poor guy deserves someone to love him. I can’t anymore. I don’t have it. I lost it years ago. When I finally realized that the way I was treated wasn’t normal~ my heart wasn’t in it anymore. And it’s not. I’m done.

I am making all these family  decisions too.. budget, planning, finances, life, the children’s freakin’ future. .. why do I have all this on my plate? Why does the decisions come down to me??? GOSH . IF I HAVE TO DO THIS CRAP ON MY OWN, I WANT TO BE HAPPY. I WANT TO BE ON MY OWN..

Now. the problem. I have children. I am a christian. Divorce has been talked about for yearrrs with me and my spouse.I guess because every other decision is up to me, so is this. I’m just so freaking done. I thought moving across the freaking country could help. but no, of course not~ issues are deeper than stupid geography.

I’m ranting here. I’m not seeing a lawyer monday. I don’t have my bags packed. Just so stressed beyond belief and tired of doing it on my own.

What is wrong with me!?

I really don’t get it. I have treated Lyme for years. I have went “gluten-free”. I have done without chemicals. My kitchen looks like a vitamin store. My kids know more about Lyme Disease than the average adult. I had brain surgery. I took enough antibiotics to cure a whole city of the plague (figuratively). But I still for the life of me can’t figure out what is wrong. My body is wracked with pain. Day and night my nerves pulsate non stop. My head throbs, my body aches. I can’t get away from it. And it’s days like this that I take to wordpress to vent my frustrations. It’s days like this that I understand why there are so many pain sufferers on pain killers. It’s days like this that I sympathize with chronic pain people who have moved their whole lives to Colorado to be able to get pot when they need it. I’m not talking about people who are addicts. I am talking about people who are legitimately in severe pain all. the. time. I exercise. I stretch. I listen to doctors. I do the work. But there is still no real answers. I’m paying so much money for an antidepressant that is supposed to help with ‘pain’ when it fact it does nothing but make me more depressed because instead of buying those cute Tory sandals, I have to buy stupid medication that doesn’t help me.

I know, lots of people have it worse. I am not in a wheel-chair. I ‘can’ exercise. I ‘can’ walk around. Yes. that is true. But I don’t feel like it. I hurt. And right now, I’d smoke a doobie.  I am not advocating for legalization of pot. NO. I don’t smoke weed. I don’t even like it. I can NOT take narcotics. I hate them. But really. What can I do to relieve pain. For real. Give me an answer. Those who don’t live with chronic non stop pain have absolutely NO IDEA how crazy it can make you. It’s frustrating. It’s debilitating. It’s depressing.

I wish I could just go to a Lyme Center or Chiari Center or Vitamin Therapy Center and just stay there until I’m cured. But that will never happen. For now, I’ll pop my vitamin D3 and carry on.

Joy and Pain

There are those rare moments when you actually feel happy, feel joy, that you are light and there is no weight on your shoulders. Maybe people feel that everyday, like a choice that they just make. But to someone with a chronic disease, the feeling of light-heartedness catches them off guard.

I pondered my brain to figure out what was it that made me feel this way. Was it prayer, was it the treatment I started back on for Lyme, or was it the fact that I am finally moving on to another adventure in life?  Whatever it was , I enjoyed the moment, that’s for sure.

Living with pain everyday make up for a lot of that lack of happy emotion. It’s just not there. For 15 years I have hurt in my body 24/7.  For 6 years, it’s been uncontrollable. I am thankful that we found the culprit (culprits) to most of it, but the diagnosis is just the beginning~ sometimes the end for some. Treatment is so time and money consuming. You just want to stop and move on with life. But if there’s one thing I have learned about Lyme or Chiari sufferers is that they are fighters and don’t give up easy.

Lyme, Chiari and many other diseases are invisible. It makes us feel invisible too. We are to purse our lips and put on a smile and move on with life~ just like every.body.else. That’s hard. Yes, some have been through worse things than us, some can’t walk, talk, see, or hear. I understand that. I sympathize. But please, if you know someone with Lyme or Chiari Malformation, get in the know. Research symptoms, watch videos about the illness. Don’t pretend that what they have doesn’t exist because it’s more convenient and comfortable for you. No one likes to be invisible.

And warriors. Keep fighting. Keep advocating. Never give up. May the Lord return our Joy no matter how sick our bodies are. Our spirits will thrive if we only see Him through it all.

God bless.

Low Dose Immunotherapy~ Have you tried it?

I finally went back to my LLMD. It was a sad day. I waited a whole year after my brain surgery, hoping that Chiari was the source of most of my ailments, but a lot of my initial complaints with Lyme were still lurking, so I had to go see him. He went over the list of complaints I had when I first saw him : fatigue, irritability, wide spread pain, depression. I thought, ” Oh crap. I still have all those problems.”

But the upside was, I hadn’t been on antibiotic treatment since my chiari diagnosis and my symptoms had not worsened, so the LLMD gave me the choice as to whether I continue abx treatment or try something knew, something called Low Dose Immunotherapy. I had never heard of such a thing and while he was telling me about it, I honestly was lost. But shoot, it was cheap~ a whopping $30 bucks cheap for 3 mths so, why not give it a shot!  Immediately I broke out into hives (which I heard was a good sign that my immune system recognized the intruder and began to fight it) .

So that’s what I’m doing. I did start school. Something I never thought I could do in my condition, but I believe I have come a long way. Minimal abx treatment, no more lyrica (!!! Huge wow!!!) and now take LDI. Do I still have pain? Yes. And even more now, realize I have a lot of limitations due to Chiari Malformation. Yay. But all in all, the road is smooth pavement with a few bumpy dirt roads in between.

http://www.specialtynaturalmedicine.com/lyme-disease-ldi/

I have heard of other doctors/practitioners charging well over $100 for these treatments and considering what my doc charges, I’d say I’d rethink my specialist if I was getting ripped off.

Have you tried it? If so, let me know how you’re doing on it!

~~Some “WHYS” and “WHATS” of a Lyme life~~

Sometimes I wonder ,  why me?  Why?  My family is mostly healthy.. There are no major complications that run in my family. So, why can’t I catch a break? Why can’t I just be normal?

Why do my legs have to shoot off so much pain I can’t sleep at night?

Why does my back hurt so bad I have to lay down to get any type of relief?

Why did I have to have brain surgery?

Why did I get diagnosed with MULTIPLE diseases?

Why do my arms and fingers ache for no reason?

Why can’t I walk on my feet in the morning?

Why does the vision in my eyes come and go?

Why does my brain shoot off pains all across my head?

I mean, I don’t need THAT much inner healing?? Right?! Do I need some major deliverance and years of psychiatric evaluation to deal with some soul stuff so I can get physically healed?! UGH!

I try not to be self-centered. It’s hard , honestly. When you live your every waking moment using all your energy to live a normal ‘day’ .. it’s hard to not think about yourself and what you are doing.. using your energy to take care of the ones you love. And yes, there are dark moments in there too. Moments you think that life would be better if you were not in it. That your children and your husband would just have a better life if you checked yourself into a pych ward or checked out for good.  Lyme, chiari and really any disease that deals with massive, chronic pain will make you have  some dark moments. You can’t have that much pain and not be depressed. Sometimes it’s saddening that I’m not the same person I used to be. I’m not happy. I’m not joyful. I look forward to seeing sunshine and rainbows and doing happy dances again.. See there I go~ down the depression road. When it comes to my kids, I keep up the happy. I keep up the dances and play times because that is my job. My job is to make sure THEY are happy and healthy. Anyway, I digress.

Enough of the ‘whys’ …

Let’s discuss the ‘whats’…

What I have been doing. Well, let’s see:
Recovering from brain surgery for a chiari malformation that I did not know I was born with. I am almost convinced that the cycline abx’s worsened the condition~ so I had to have neurosurgery.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125540/

Recovering from a torn ligament. OUCH!

Recovering from 3 LP’s  that I’m convinced made me have bulging discs or worsening of bulging discs.. therefore dealing with crazy back pain symptoms that have NEVER been an issue.

Going to multiple doctor’s appointments for all these issues. I refuse to give up.

What I haven’t been doing is treating Lyme. Not sure if that’s good or not. But I really wanted to see what the chiari decompression would do for me (or not do).

Homeschooling!

Applying for school for myself! ( I must have really lost my marbles.)

I know I said ‘no more whys’ But I have one more~ Why do I make life harder on myself? Like it’s not already challenging enough. Lets add some more responsibility and stress, ok?!

Now, take all that and add treating your children for lyme, parasites and heavy metals. Then add your husband having to get MRI’s and physical therapy and self treating lyme. It can get OVERWHELMING. But I think I put added pressure on myself. I don’t want anyone in my family to go through the same ‘hell’ I have been through, so it literally had me freaked out for a while. But we are trucking along smoothly now.. In a groove.

But what does the bible say? To forget all that is behind and press forward to the mark of the high calling that is in Christ Jesus. Maybe that’s why I want to go to school. I want to believe that being sick is not God’s will for my life and I don’t want it to hold me back. I want to keep moving. Believing that God has a plan for my life. That He still wants to use me to touch souls. To reach out to the broken. Even with all of the trials (some I won’t mention on a blog) I want to be found in God’s lap, holding on to Him~ trusting Him with my life.. with my children’s lives..  I am so thankful for my children. If not for them I would have given up years ago. They are what push me to get better. To be a better person. I love them so much.

So say a prayer for me!

And it’s my prayer for you too… that if you are walking this walk of searching out a proper diagnosis and being healed of your disease and it’s consuming you.. just remember that God made you and has a plan for you. That the sickness you have is not his ultimate plan for you and that through the storm you WILL see the sunshine again. Don’t give up.

When I have a really dark moment and feel that the Lord has left me, I think of all the amazing moments when God spoke to me through others. When He provided for me in the most miraculous ways. He is SO good. He doesn’t give up on us, so why should we give up on ourselves. We are fighters. Keep up the fight.