Pretending

Posted on February 9, 2015 by lymestorm

Pretending.

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Pretending

Posted on February 9, 2015 by lymestorm

I purposely haven’t blogged in a while.  In fact, I have avoided most contact except with my close family and friends (both mostly by phone) for the last month.  I haven’t checked my email.  I have barely been seen on social media in any way.  I needed to pretend for a while that I was “normal” again.  I was starting to lose my sanity.  I needed to not have to put on my “brave” front to everyone, to not convince anyone that wasn’t in my inner circle that I was “holding it together.” And while I intended on an easy month, as carefree as I could be, it was far from that.

Last month I switched to oral dosing, which was determined by lack of money to continue with IV therapy.  I was at a point where my doctor would have liked for me to stay with IV dosing for another 2-3 months but luckily, I was stable enough to make the early switch. While it was unintended this originally, it ended up to be a good thing for me.  After IV dosing for so long and being so sick, oral dosing was a welcomed relief.  It was so much easier on my system and didn’t wreck near the overall havoc on my body.  The side effects weren’t nearly as bad and while I continued to herx, it was easier and less intense most days.

After dosing, I started having more “good” days than I’d had in a while. I had days where my pain was tolerable enough so that I could skip my pain meds. (I have an aversion to pain medications because I worry endlessly about becoming addicted. I have skipped doses I did need just because of that worry.)  I even was able to do a little bit of driving, the first time in over 10 months! (Of course I was only able to drive on days when I wasn’t taking any mind altering medication and having a good enough day mentally.) My brain was doing better.  I was detoxing well.  I wasn’t getting rid of the amount of “crap” so I didn’t have the amount of “crap” to get out of my body. All of this was GREAT, except that it gave me a false sense of hope.  It fed into my idea of being The Great Pretender.  All of it made for the perfect storm of which the last two weeks have been. Please don’t get me wrong, I have still made major progress since treatment began and I’ve been able to see a lot of that in the last month.

This is what TBDs do to you.  Lyme is cyclical, most often symptoms “flare” every 4-6 weeks once you are at a manageable level and even in the beginning of the disease.  This is also a trait shared with many other diseases including Fibromyalgia and Chronic Fatigue Syndrome (both of which there are now documents supporting that BOTH are related to Lyme disease (undiagnosed.))   You feel better, therefore you think you are getting better and then you do too much because you want to enjoy feeling better and that exacerbates your flares and symptoms.  It’s a constant game of “2 steps forward, 1 step back” (sometimes its even 1 step forward and 10 steps back.) Its a nasty little bugger.  Its mean and cruel.  It messes with your brain and your heart and your soul.

For these reasons alone, TBD patients, HAVE to be some of the strongest and toughest and most amazing people on Earth.  I don’t say this, because I have an inflated sense of self, hear me out on this: They are NOT quitters! They know what its like to persevere and not just because they have to, but because they want to and they need to.  They fight for every thing in life, things you’re “average” person takes for granted every single day. They know what its like to take victory in the smallest of battles (yes, even taking your first breath of the day!) They fight against their own bodies, even when they remain perfectly motionless. They fight to retain any sense of self and sanity. They fight the government for disability and retirements.  They fight against health care systems that are ignorant to their disease, in some cases denying the existence of said disease. They fight to help others (family/friends/general public) understand what they are going through and to help those people to avoid (if in any way possible) the struggle they, themselves are going/have gone through.  They are constantly fighting, even when they are on the verge of collapse. And while all of that “fighting” would make anyone else bitter and cynical and jaded, it makes TBD patients stronger, but more loving and gentile and understanding and appreciative and sensitive.  Perhaps, it is that the complexity of the disease(s) on the body and mind  mimic the complexity of the organism itself?

I think the sensitivity that is gained, has perplexed me the most in all of this.  I was hard, bitter, cynical and jaded.  I was calloused to the ways of the world.  I never considered myself to childlike or naive. I had been a “grown up” for as long as I can remember.  I can’t ever recall a time in my life, when I didn’t feel “under pressure” or carefree.  I could never remember a time I didn’t feel alone, despite “knowing” people loved me.  I could be surrounded by people and yet, I always felt alone.  I had become so negative in my heart, despite fighting to be positive.  I waited for the bottom to drop out because it always did.  The world was against me and never for me. I was a reflection of my thoughts.

Yes, I have been through some absolutely horrendous things in my life which were completely out of my control (I will not discuss these things because it’s not something I want to publish to the world, nor do I want even those closest to me to know about.) I had never learned how to “let go.” I never learned how to say “it’s not your fault” and really feel that.  I never believed that deep down I was not broken beyond repair. I never believed anything positive anyone told me. I never believed that I was beautiful on any level. And yes, it is true that many people suffer the same things because we do not live in a culture that really nurtures our souls.  As I got older things only got worse.

I don’t know when I was “infected.”  I know I can tell you when I removed a tick the first time.  I can tell you when I got my first rash and when specific symptoms started; but due to so many contributing factors (including being bitten and never having known, the likelihood of never getting a rash at initial bite, etc.) I will never know when I was infected because I have been experiencing Lyme symptoms for well over a decade.  Because I don’t know when I was infected, I don’t know how much of what went on in my brain was me or the disease manifesting itself.  But none of that really matters at this point.  What matters is what has happened since I’ve begun treatment.

I have become more isolated, in a way a I never have and for the first time I appreciate it and feel the uniqueness of being me.  No one in my “world” has walked this path that I continue to travel down.  I don’t know anyone that I commiserate and celebrate with personally.  Yes, I have met other TBD patients and we’ve shared stories and I appreciate all their individual stories and appreciate knowing that I am not alone, but no one in my “circle” can understand it and in some ways I hope they never have to.  I see myself as a pioneer and a crusader now.  I feel its my responsibility to fight for my diseases to be accepted and understood.

I was at the emergency room last week for a possible infection in my central line. (My doctor had decided to keep it in until my next visit to help with detoxing and to make sure I was detoxing well enough. They happened to be the ones who sent me to the ER because my routine lab work indicated a possible infection in my line.) While at the ER I was told that I was a “complicated patient” and that I had the most difficult and complex medication list the nurse had ever seen.  Yet, no one bothered to ask me about my diseases that they didn’t understand.  No one even bothered to contact my doctor’s on-call, for clarification or advice on what to do with me.  This infuriated me! How can you treat a patient you don’t understand or know what to with?! The ER discharged me that night.  It turns out that my line was indeed infected and needed to be removed.  I had been sick for over a week and had I not contacted my doctor the next day, my infected line would still be in place.  While I understand that Lyme and other TBDs are VERY MISUNDERSTOOD, I can’t believe that “health care” providers are so unwillingly to learn about it. This is just another reminder why so many TBD patients take their own lives, unable to be helped by our current health care system.  This is why I talk about my diseases.  Not because I want to, but because I HAVE TO!  I am going to make sure my loud mouth saves at least one life!

I see the world in such a different way now.  I have said for a long time, that I believe these diseases were the best thing to happen to me.  Despite continuing an uphill battle, I still believe that and I find new supporting evidence routinely.  I see beauty in things that I never could.  I still struggle with my personal image, but for the first time, I can honestly say that I love myself.  I am still flawed and still working on things, but I am good person and I am proud of who I am. I have a heart that allows me to feel again and the brain to go with it.

I recently started speaking to someone whom I’ve had feelings for a long time ago (in truth they’ve always been there but I shut them out.) I have communicated those feelings.  I broke down my walls.  I accept that this makes me vulnerable and that there is risk involved.  It scares me, but for the first time, I’m just going with the flow.  Maybe things will work out and maybe they won’t.  But I can learn from which ever outcome comes my way. I’m not putting my life on hold anymore because of being sick.  That comes with me. I’ve accepted that it’s a part of me and will always be, but that doesn’t mean that it is all I am. I’m working out the kinks of putting is farther back and letting the person I am, always evolving, have her shot in the spot light for a while.  I’m TRYING not to have to feel like I have to pretend anymore.

Today I woke up and I felt like I needed to cry.  I let myself cry because I needed it.  It’s not because of any one thing, in fact I have a lot to be happy about now.  But I’m not fighting what I feel.  I’ll probably end up crying more later.  I still feel like I haven’t gotten it all out.  I have a lot weighing on my mind.  I know this will pass.  I know that in a lot of ways I’m in a state of limbo and that I can’t do anything about it…at this moment.

One of my favorite books is Tuesdays With Morrie by Mitch Albom.  Even in his death Morrie Schwartz has changed not only my life, but the lives of thousands.  One of the things I think about often now is a part in the book when Mitch and Morrie are talking about emotions.

Morrie says “By throwing yourself into these emotions, by allowing yourself to dive in, all the way, over your head even, you experience them fully and completely. You know what pain is. You know what love is.  You know what grief is. And only then can you say “All right. I have experienced that emotion.  I recognize that emotion…”Wash yourself with emotion.  It won’t hurt you.  It will only help you.  If you let the fear inside, if you put it on like a familiar shirt, then you can say to yourself, ‘All right, it’s just fear.  I don’t have to let it control me. I see it for what it is.'”

I have always loved that.  I’d like to think that I’ve always allowed myself to “bathe” in emotion and then as Morrie says “pick yourself up and move on with the day.” Truth is, I’ve been fighting every positive emotion and living in fear of the bad ones.  Now I think I finally get what “Morrie” has been telling me all these years.  That book changed my life, even before I was ready to put Morrie’s words into practice.

And that is what my diseases have done. They have broken me but only to allow a new me to be built.  Rome wasn’t built in a day and neither is Jessica 2.o.  I’m finding out what works for me.  I’ve been given a chance to break free from the shackles of what is the “norm” and to be who I’ve always wanted to be, who I’ve pretended (at times) to be and that is my blessing.  I can be more sensitive. I can embrace any and all emotion.  I can feel for my fellow man/woman.  I can accept that everyone has their own story. I can be a friend. I can listen and be immersed in the moment. I can really be present with people, without rushing off to the next thing. I can feel.

From time to time, I will need to retreat from the world, only now it is to regain my center-my balance.  If you are present with me, you have my full attention; all other things can wait (unless it’s an emergency.) We live in world where multitasking is so important, but we forget that there was a world before technology.  There was time when we lived in a culture that nurtured what it meant to be a human being.  Now is not that time.  I’ve always been unconventional is a lot of ways, that’s one thing I’m not changing.  I’m not conforming to what is popular.  I will stand by my morals and principles.  I want to live gracefully, with true love in my heart-my heart gets to lead the way with brain as the right hand advisor.

 

 

Posted in alone, Antibiotics, Babesia, Babesiosis, bartonella, being ok, emotional, emotions, ER, faking, faking being ok, fighting back, Freaks, getting better, go your own way, growing stronger, healing, herxing, I will get better!, letting go, loneliness, Lyme, lyme disease, Mitch Albom, Morrie Schwartz, oral medication, oral meds, pretending, spiritual, TBD, TBDs, Team Lymestorm, tickborne, tickborne diseases, ticks, True love, Tuesdays With Morrie, Uncategorized, what life's about, withdrawl | Tagged | Leave a comment

Reflection and Thanks

Posted on January 2, 2015 by lymestorm

A year ago today I was fighting the remainder of the flu.  I was working (Southern Patrol, my favorite.) I was still searching for the correct diagnosis. I was set in my routine. I was going about life the best I knew how.  I was a person, who despite her own knowledge, was very dead inside, figuratively and literally, and as I look back, a person that I don’t much like.

At 1400hrs I got a phone call that I wasn’t prepared for…the hospital telling me to get there as fast as I could because my great aunt was dying.  It was an hour before shift change. I don’t remember my last hour of work for that reason.  I don’t remember being relieved by the oncoming shift.  I barely remember who I was working with that day.  All I could do was hold in my tears and otherwise, be a machine.  That was the last day that would ever work in Emergency Services.  The last day I would ever talk on the radio.  I remember almost nothing of that day at work.  It was like any other work day and it wasn’t unlike any other day I’d come to work sick. Little did I know, it was a brand new beginning I wasn’t planning for, but one that I needed more than anything in my life.

That day was last day I’d see my great Aunt Betty for the last time.  She wasn’t just someone I only saw on holidays.  I had taken care of her for the last 15 years, some of it for years by myself.  I loved her.  No one thought she’d ever really die.  She was the last of 12 children, the last link to the past in so many ways. If you’d known my Aunt Betty, you’d know A LOT!  When I was growing up I considered my “family” as my mom, my brother and me, but just outside of that was my Aunt Betty and my Aunt Jane (Betty’s sister) and then the rest of my family. I used to spend weekends there.  (I’ll spare you the details of ALL of my memories.) My Aunt Jane died 14 years ago. My brother died 2 years ago. And now my Aunt Betty was dying. (Both of my Aunts died in the middle of a major snowstorm.) I said my goodbyes 1 year ago.  My Aunt Betty passed peacefully early the next morning and that was the best I could ask for her. I miss her terribly but carry her with me every day.

Her death would ultimately be the catalyst for my diagnosis.  She gave me a final gift, though I’d have to fight through hell to get it.

During funeral planning and the actual funeral and wake (yes, we do Irish the RIGHT way! After all, she was the one who’d taught us!) I was on auto pilot.  My pain quickly escalated which I associated with all the running around and being on my feet. After all was done and it was time to go back to work, I couldn’t.  I ended up in the hospital unable to stand because of my back pain. (I have had a prior spinal fusion and have 4 bulging discs.) I was sure that I had herniated another disc.  None of the tests the ER ran showed anything that would amount in the severity of my back pain. I was sent home with narcotics, a note putting me out of work and one telling me to follow up with my primary care doctor.  I did.  I went to my previous back surgeon and got a second opinion. I was put on FMLA by my primary care doctor.  And the race was on; to find out what was wrong with me before my FMLA ran out.  Keep in mind that I was still injecting my medication for my diagnosis for multiple sclerosis. Change was coming at me, good change, though I couldn’t see it at the time.

I went to doctor after doctor.  I was tested for everything under the sun (except what actually ended up being wrong with me.) I was scanned in every way.  What I was gaining was knowledge. I ruled out what wasn’t wrong to leave way for the knowledge of what really was.  I became my own doctor.  In February I went from a diagnosis of Relapse Remitting MS to Primary Progressive MS (the most aggressive form.) I started searching.  I stumbled across a website which featured a very successful physician (I honestly can’t remember the name, at the time I thought it was just another blip on my radar) who had PPMS and was talking about the importance and healing power of diet.  This doctor had gone from being in a wheelchair barely able to move to a healthy person who could ride a bike with her MS in remission, in 18 months! Right there, I researched the diet and ended up going Paleo.  I got such an instant result, I took myself off my injections.  (I later learned that because I had taken that medication it sped up the problems caused by my Lyme/Bartonella/Babesia/Mycoplasma which accounted for why I got so much sicker in such a short amount of time.) I ended up in the hands of the best person I could.  My NP.  She was the one who thought outside the box and worked WITH me.  She was the one who put me in the hands of the people who are now saving my life.

I GOT MY DIAGONIS(ES)!  April 3rd, 2014.  The day my prayers were answered.  I experienced so much during my prep and during treatment.  I can look at all the things I’ve lost, all the misery, torture, self doubt, suicidal thoughts, all the negatives. I can look at them and be thankful for each and everyone of those things because it has made me the person I am today.  They have humbled me deeply.  They have made me a person who is evolving. They have caused me to gain more than I have ever lost.

Even as I lay here sick with a cold (on top of my normal stuff) I think about me as person.  The person that I was a year ago is gone and while I’m thankful for the things she taught me,  I’m not sorry to see her go.  She was formed of sickness and bitterness, jaded and cynical, protected by chains and irons…she had lost her innocence, her heart, her ability to love others and be loved, she was numb to everything except pain.  Some of her things still remain, I’m still cleaning up shop, but to look on the inside you would hardly know she even existed.

This year I have to learned to love again.  I have regained some of the “wide eyedness” of my youth.  I have allowed myself to be some of the child that I don’t think I ever really was.  I have gotten closer to family and friends.  I have lost some people from my life that I will miss until the day that I die, but I have learned who will stand beside me and love me through it all, even when I deserve it least and/or when I need it the most. I have formed deeper, more meaningful bonds and relationships.  I have opened my heart again.  I have passion again.  I have regained the ideas to follow my dreams and to live from my heart. I have become more spiritual. I have become more attune with the world and nature and my environment. I have grown as a person. I am a constant work in progress.  So, I think that good and the great far outweigh the bad and horrid things.

Life is a balance, whether we know it or accept it or we don’t.  I’m still working on it. I’m thankful for each and every person that has crossed my path over the years, particularly in the last year, because I have learned something from them all.  I’m thankful for every person that helped in any way. I’m thankful that I have the mother I do. I’m thankful for my crazy dysfunctional family.  I’m thankful that I have had time to spend with my grandmother. I’m thankful for so much.  Mostly I’m thankful that I’m alive and that I’m getting a second chance – to be able to live my life healthy, happy, loved and to make it anything I want it to be.

I’m still sick and in some degree I always will be.  I can’t deny that.  I’m still fighting for my health.  I’m still fighting for my retirement and disability. I’m still fighting to let go.  But most importantly I’m still fighting at all! So while everyone is still making New Year’s Resolutions, my only one is to continue to change.  “Change is hard.  We fight to hold on and we fight to let go.”

I’m having more good days than I was during this break, than I ever have.  My mental clarity is improving (even though my fine motor skills are getting worse. They will improve, its just the way treatment is hitting my brain now.) I learned that some of my hallucinations are actually my brain making new connections.  I will never be the person I was but I don’t mourn that anymore, I celebrate it.  I will never have my brain back the way it was and while that might mean I can’t do certain things (my job included) that I used to, it doesn’t mean my life is over.  I never asked to be sick with all of this.  I never wanted any of the doctors visits and pain and depression and isolation and misery that came with being sick. Either way I got it.  Maybe God and The Universe and my guardian angels knew that I needed this.  Maybe they were tired of waiting on me to do something about the way I was living. Maybe this is all part of “The Big Plan.” I don’t have answers to any of those things and maybe I never will.  It doesn’t matter.  What matters is that it happened.

I know that this year is going to find me even more happiness than last.  I still have a long way to go in treatment and I will still have horrible days. I will always have Lyme. It has been the center of my world this year because it dominated and controlled everythare ing I have done.  I might start out on a rough note, but I’m going to continue to shift focus, because Lyme will not dictate my life any longer or any more than it has to and I will push with all I have to knock it out of center.

And whenever they take out my central line, I’m celebrating like New Year’s/Christmas/Thanksgiving!

If you interested in donating to my mounting medical bills please visit:

http://www.gofundme.com/LadyLymestorm

Feel free to share my campaign, I would greatly appreciate it.

Posted in Babesia, Babesiosis, bartonella, caveman diet, chronic pain, emotional, ER, fighting back, food matters, getting better, growing, growing stronger, healing, healng yourself, helping yourself, hope, I will get better!, illness, Life is unfair, Lyme, lyme disease, lyme's disease, Medical, paleo, paleolithic, pamela weintraub, reflection, sick, spiritual, suicidal thoughts, TBD, thankful, ticks, Treatment, Uncategorized | Tagged , | Leave a comment

What No One Tells You About

Posted on December 10, 2014 by lymestorm

There are so many things I have learned over the course of the last year.  What I realize now is that there are a lot of things that no one tells you about treatment.  So here is my version of “What to expect when you’re expecting tick borne illness treatment.”

1. Going to the Emergency Room will be a nightmare for you most of the time. You will end up being you’re own doctor.  I live about 20 miles outside of Baltimore, MD. My local hospital is owned by The University of Maryland and I still had to explain what was wrong.  There were doctors and nurses there that either hadn’t heard of Lyme or thought it was “Lyme’s.” I have been there twice since treatment has started, both for blood clots.  Both times I had to explain my diseases, my meds and my treatment plan.  Neither time were any of the providers familiar with the type of central line I had.  Last Wednesday, most recently, was the worst experience.  I had put on a mask for my own protection and the registration person asked if I had Ebola? SERIOUSLY.  When I went to triage I explained that I have almost no immune system, so they put me in a part of the ER for “isolation” which consisted of 5 recliner chairs and curtains. Guess they need to learn about isolation.  I had been herxing for a while (coming in waves of intensity and violence,) when I was told they had a bed for me.  Ooops they made a mistake.  Instead I was left in the hallway violently herxing for over an hour till the room opened up.  Not one doctor, nurse, tech, janitorial person ever stopped to check on me.  That is until my mom took care of that.  Eventually when I got into the room, they took blood from my arm, not my central line as they could have.  I was x-rayed and finally got my ultrasound.  No clot this time, but no reason for the lump at all, nor was my chest pain or shortness of breath even questioned.  (I had mentioned it several times.)  Never was my port flushed.  No one even wanted to have anything to do with it.  Finally I was discharged (7 hours later) with chest pain and shortness of breath and told nothing to do.

You may be lucky enough to have a better local hospital than I do/did, but chances are once you mention Lyme, let alone any other TBD, you’re going to be looked at differently.  So be prepared if you ever have to go.

(Side note I did contact my Doctor in the morning and the problem was explained in great detail, instructions were given on how to deal with it and what to do the next time it happened.)

 

2. Supplies.

A. A cane, a walker and crutches were good walking aides for me.  There were times I probably should have been in wheelchair but I was stubborn. Use them if you need them! Have NO SHAME for what you are going through.

B. Lots of pillows in varying sizes and firmness.  There will be times you will need them.  Right now I have 8 on my bed.  I use them to prop me into certain positions so that I can be comfortable enough to sleep.  I use them everywhere and so will you.

C. Depends/Adult diapers.  That was a hard blow to my ego but once you have an accident, you’ll think twice.  Its the meds, its not you.  For me that accident came at 530 in the morning crying for my mom, because it was everywhere on me and in my bed.  Since then, anytime I think I might not be able to control my bowel and bladder, I slide into them.  They are very uncomfortable at first, but they get better.  And with a pair of jeans you’ll never even notice them and neither will anyone else.

D. Toilet paper.  Stock up! Look for sales.  Because antibiotics make a normal person have loose stools, its going to worse for you.  Your butt will hurt. Vaseline does help.

E. Padded Toilet Seat.  I was lucky enough to have my mom make one for me.  Its awesome! It helps with the pressure on my hips and lower back.

F.  Heating Pad(s)  Even in the hottest of summers you will need your heating pad because it helps.  I have king sized.  Now that the seasons are changing and the barometric pressure (which normally does not make Lyme and TBD patients feel good) I am using it even more.  I have Reynaud’s as well and limited circulation in my feet. So sometimes the heating pad helps warm me up.

G. Food. Feed your body healthy stuff, its nature’s medicine.  Gluten is terrible for Lyme.  The spirochetes feed off of gluten and processed sugar.  Good for you food can be expensive but it is worth it at least during treatment.  Because you’ll be sicker from treatment, you probably won’t want to eat, so spend it on good stuff for when you are eating.

H.  Emergency Contacts.  When you are home by yourself (at that point in treatment) make sure you have as many people as you can to call in case of an emergency.  I’m lucky enough to a more than a few.  Make sure that those most likely to respond have access to your residence.  I have had days where I am completely bedridden and can’t make it down the steps safely to unlock the front door.  Be prepared.

I. Medical supplies.  Yes you will need a lot and most will come from your doctors via prescription, but there’s a lot you’ll need on your own.  Alcohol preps. Masks for you and visitors. Gloves.  An IV pole (buy it or make it.) For me I had to purchase tubing, saline and heprin flushes for the days I’m not dosing and using the lactated ringers.  That stuff is NOT cheap.  Use the internet to comparison shop.

J. Epsom Salts.  These are great for detoxing your body. Pour it in a warm bath and soak.  It does help a lot. I get mine from the dollar store.  Same sized bag at Walmart is almost $5.00.

K. Schedule.  Stick to whatever schedule/regime your doctor has given you.  Set alarms on your phone if you need to, to remind you when take your meds. Do what you have to do.

L. BIG Pill containers. I looked everywhere for ones big enough to hold all my pills. I found them at The Dollar Store. I use plastic snack containers with a snap on lid (mine are about 2inches long and 1.5inches wide and deep) and they have worked perfectly.  My mom does my pills and we have enough containers (AM and PM) to do 15 days worth of my meds.  They work great!

3. Weight Loss.  Whether you want to or not, you will lose weight.  At the beginning of this year I was up to 175lbs and am now at 133lbs. I was grateful to lose most of it, but it wasn’t a healthy way. I have still maintained a lot of muscle (herxing can be the most intense workout.) In a week I dropped 10lbs.  If I sit on a hard surface, I actually feel me sitting on my bones. Again, pillows to the rescue.

4. Things will get worse before you get better.  Treatment is rough and hard and taxing and sometimes, you’ll think, worse than the cure.  You’ll feel like you’re losing your mind, you will cry in pain.  That means its working.  Treatment is getting all that horrible stuff out of you.  I had thought I turned a corner in October, I was making great progress.  I still had a lot of bad days but I also had good days.  Things are turning around again.  I have increased brain fog, my fine motor skills are horrible (one day it took me 20 minutes to zip up a jacket, I wouldn’t give up,) my hips and lower back are worse than ever. Back to days of being bed confined.  Sleep was better and now is worse.  I go back to the doctor tomorrow and they can adjust/add/remove the meds they need to, to get me back on track. This up and down is not only rough on you but also on your family/caretakers/friends.  They will see you get better and then see you worse.

5. Be prepared to be taken care of and learn to ask for help.  YOU CAN NOT DO THIS ALL ON YOUR OWN! Its harder for some (like me) and easier for others.  Practice. Learn. Do.

6. Welcome to the dark side. Your brain will take you to very nasty, horrid, treacherous places. Find something to draw you away from it. For me I looked toward spirituality.  Meditations has done wonders for me.  Find something that will pull you back when you can’t read or write, or process tv.  You will have moments of silence, moments when its just you.  My brother once said “If you can sit in a room with just yourself and nothing else and be okay, then you are okay.” I use his words often.

7. Mood swings.  Depending on the damage done to your brain the intensity of the moods may be different.  I was impossible to deal with.  My moods were all over the place.  I cried over stupid things. I was vocal “LEAVE ME ALONE, YOU WILL NEVER UNDERSTAND.” I was demanding.  I was happy and overjoyed.  I was panicked and anxious.  I was just a mess for about 2 months. My poor mother endured it like a champion! I could not have asked for a better mother, she has been there for me whenever I needed her and gone above and beyond what most parents would do.  I love you Mom!

8. DO NOT COUNT ON INSURANCE COMPANIES!  They lie and cheat you.  I made sure exactly what they would cover and confirmed with several other employees. They lied about it.  I’m in the appeal process with my insurance company now.  Have a back up plan. If they tell you its covered, make sure you get it in writing.  If they refer you to the internet, that’s not good enough. Have them mail it to you with a name on it.  Keep track of everything. Every person you spoke to and when. They count on the fact that if you get denied for something, you won’t appeal it…APPEAL ALWAYS!

9. Set up coordinators.  You cannot handle everything yourself.  My mom is the one who handles all my bills and updates my checkbook and reconciles my account.  My stepmother has taken over the insurance company issues.  My uncle helps anyway he can, fixed my car for free because he loves me and wants to help.  It was hard to let him pay for it, but I have to accept the gift and stop beating myself up over it.  I have people I can talk to and listen to me when I need a good cry or vent and best of all have intelligent conversations over the important things in life.

10. You will be sicker than you have ever been in your life.  Yes there’s vomiting, diarrhea, herxing, cognitive problems, confusion, pain in your bones, and more.  I was talking with my Dad and I said ” I think that this (Lyme & TBDs) is like going to rehab but worse.  In rehab you detox your body from the actual drug(s) and then you move to inpatient treatment where they help you with your thoughts. And since people usually are “stuck” emotionally from when they started using, its like learning for the first time.  But with me, I’m doing both at the same time.” He agreed and so does my mom.  Keep faith. Take it day by day, minute by minute if needed. On my horrible days I repeat the following “On particularly bad days when I’m sure I can’t endure, I like to remind myself that my track record for getting through bad days so far is 100% and that’s pretty good.”

11.People will NOT understand your disease or your treatment or why its not covered by insurance.  Some people will want to know everything and some people just turn away, convinced you’re faking because “you don’t look sick.” How you choose to deal with it is your choice.  I feel people out as to how to deal with it.  People still judge me and because of so many misdiagnosis that this is just the “new one” and you’re crying wolf.  It hurts, especially when it comes from a friend.

12. YOUR ILLNESS WILL BECOME YOUR LIFE, at least until you are well enough.  This is a hard one for me.  It doesn’t mean I don’t dream about the day when I’m  in remission, or my plans for the future, but right not everything I do is centered around my diseases.  Can I go to lunch tomorrow? If my body cooperates I can.  Explain to people that you won’t know till the day and time of.  I blog about Lyme because I need to get things out.  I want to help others.  Make good out of bad, but even that is Lyme driven.  My meds, my movement, my mind, my pain…Lyme and TBDs dictates my life and so for now I accept that.  But Lyme still does not define who I/you are as a person.

13.  You will learn. Hard lessons. Knowing how much you can push your body in a given day. Learning what real friendship is. Rekindling old relationships. How to heal a family.   What pain is like on a scale other than 1 to 10.  Learning compassion. Lowering your guard. Accepting help and asking for it. Learning about the simple pleasures in life that we take for granted. Treatment is a learning process as well as the disease.  You will not be the person you were by the time treatment is done.  They say many Lyme/TBDs become very sensitive after treatment.  They are aware of their surroundings, nature, emotions, learn how to focus and have compassion.  Despite all the bad I have gone through thus far, I am a very different person already and I’m sure that I will be a different person still by the time I am in remission. For me one of the best things that I’ve gotten back so far, is the ability to REALLY love and feel loved.

14. DO NOT BE ASHAMED! Don’t apologize to other people, who don’t understand you just to make them happy.  Know that on any given day you are doing your personal best.  Don’t be ashamed for getting this disease, YOU DIDN’T DO ANYTHING TO GET IT! Its not your fault that you have this. Its not your fault that with years of misdiagnosis it changed you, made you a person you didn’t like.  This disease had done damage that even you couldn’t see or forecast.  When you are clear minded, make amends with those that you hurt in the past, explain it wasn’t intentional (unless it was.) You don’t need to apologize to everyone, but with those you know you truly hurt and/or those you want back in your life.

15. Motor mouth and education. When you were first suspected or diagnosed with Lyme/TBD, you probably researched the hell out of it. You’ve learned all new facts and are/were utterly stunned that you didn’t know this before, that insurance companies are a joke, the lack of Lyme Literate Doctors (LLMD.) You will learn so much that you just can’t keep it in at first.  You’ll want to tell everyone everything you know to get it off your chest and to educate everyone so they don’t get these diseases.  Some people will ask questions about it, want to know everything about it, how you got diagnosed and how you’re doing Some people (even the ones you want to) will call you a fake or just turn away.  Either way, education is very  important. Try a support group, they will be the only ones who really understand what you’re going through and won’t mind you spilling all new facts, in fact because others are doing the same, you might learn a thing or two.

Posted in Babesia, Babesiosis, Being prepared, getting better, getting worse, Help, helping yourself, Its not your fault, Love, Lyme, lyme disease, Medical, Medication Overload, Meditation, spiritual, Spiritualty, supplies, supply list, Support groups, Support\, TBD, TBDs, tickborne, tickborne diseases, Treatment, Uncategorized, What to expect | Tagged , | 5 Comments

Comfortable

Posted on November 19, 2014 by lymestorm

D.C. days are always long, stressful and utterly exhausting.  It’s not that I mind the appointment, well the test dosing is usually not fun, but I’m done test dosing new IV meds, but the combination of the appointment and the drive.  This time I was in for a bit of a pick me up.  When I got to the office, there was a lady in the waiting room and she approached me and started talking to me, asking me questions and talking to me about her journey as well.  She was so nice and gave me her email address and asked for my blog information.  She is very early on in the treatment process, but it felt great to talk to someone about Lyme and its co infections and have them understand your suffering.

I also met 2 other people on my way out. A man who has been suffering for over 30 years and a woman who has had it about 18 months.  The man came all the way from Georgia! Further proof to me that after all these years suffering for him, he has finally found a doctor that is treating him SUCCESSFULLY and that I am in the best hands possible to get well. Both the man and woman and I also talked about symptoms and treatment and again it felt great to talk to people who understand the severity of the situation.

Good news from the doctor this time.  I’m back to going down every four weeks BUT as the doctor said “it looks like the we’ve gotten through the worst of the storm.” This does not mean that I will still not have horrible, terrible, no good days, but that treatment is working and I should start showing more signs of improvement.  I have a very strict routine this time.  I’m dosing for 11 days straight and then off for 2 weeks to let my body rest.  They are attacking it hard but giving me more time to recuperate.  I will NOT have to dose on Thanksgiving and for that I’m truly thankful. I have an even more rigorous schedule of meds that I have to stick to even when I’m not dosing.  Between all of them, they whack me out a lot, especially the Gabapentin, Marinol and Ativan.  Sometimes I feel like a zombie (and probably look as bad as one on the Walking Dead) but I know it for the greater good and that so far everything has worked (even when I have despised treatment and begged for it stop or be over.)

On my good days, the goal is to increase my stamina.  It’s unbelievable how even the  smallest things can knock me on my ass.  Being a Virgo, I’ve always been an all or nothing kind of person; any thing worth doing is worth doing well.  This is a learning curve for me, pacing myself.  I haven’t done very well so far but I’m trying.  I finally have the want to do things but my body keeps saying “Nope, not yet.” So I just keep going, stopping when I can or am forced to by some pain or herx or exhaustion.

Despite being worn out from the doctor on Friday (I was in bed asleep by 800pm) and resting all of the morning on Saturday,  I made myself go to a screening of the follow up to the documentary “Under Our Skin”, called “Emergence” at the library.   My local CRNP called me to tell me about it.  I was not feeling well at all.  I was using my cane and my mom for assistance and I herxed for most of the movie.  Little did I know the movie was sponsored by a Lyme Advocates group and that there was a meeting afterward.  Still herxing, I made myself stay and participate.  For the first time ever, I was in a room full of people who “got it.”  It was good for me to listen and to share what information I could.  I didn’t have to “explain” my disease.  I was with people who were suffering or people who had loved ones suffering.  These people were loving and accepting of everyone else there.  They were as angry as I was that Lyme and its co infections are so overlooked and downplayed and that nothing is being done to help people who are sick. I heard the story of an 8 year old boy who died from Lyme encephalitis and it was heart wrenching  I’ve never been one for support groups as far as me personally but I can tell you I am planning on returning to meetings when I can.  So if you’re like me and think a support group will do you no good, you might want to think twice.  This was also the first time I have been well enough to push myself to go.

After the support group, I was very emotional. My friend’s family was throwing her a surprise party and I could NOT miss that. Kara is my very best friend.  She has shown me nothing but true love over the course of our many years of friendship and despite my illness she is ALWAYS there when I need her.  I would do anything for that girl.  (I did give her a husband…I set the two of them up knowing they were perfect for each other and they now have one of the most loving and happy marriages I know.) I needed to be at that party for her, to show my support, if only for a little while.  Broke, all I could afford was a card and I knew that and me showing up, even if just for a short time, really was good enough for her.  We have had our fights and no matter what, we are always there for each other. I love you Kara!

Being at the party was uncomfortable to say the least.  I enjoyed seeing Kara’s family and some people I haven’t seen in a while. There were people who walked right by me or gave me that fake smile.  It hurt.  I had known these people for a long time.  I was in fear of the germs, being so isolated inside my house and with a severely compromised immune system, I can get sick at the drop of a hat and that is never a good thing, my body has enough to fight on its own right now.  I don’t need to be fighting anything else.

After my last blog someone brought up to me that my blogs are offensive and that I should apologize to people.  I made my peace with the people who matter to me most, I can only handle so much at one time. I also understand and accept that many people think I’m “faking” this because I have been misdiagnosed so many times and unfortunately this is often the case with Lyme patients.  I expect to much from the world, I expect even more from myself.  I also know that a lot people don’t know how to relate to me anymore.  They don’t understand my diseases and how it affects my brain and my body and how it has changed me.  I am not the person I was yesterday, let alone a year ago.  I am sorry if I have hurt anyone’s feelings.  It wasn’t intentional.  I blog to get out what’s in my head, in my heart and to help others struggling through their journey.

Someone asked me why I call it a “journey.” It’s because that’s what it is to me.  Just as a person has to go on their own personal journey to find whatever it is they are looking for, this is my journey to wellness and wholeness as person.  I look at this “experience” as just a part of my journey to find the answers I’ve been looking for and I’ve been looking for most of my life.  Lyme might have taken a lot from me, caused me to be angry and carry grudges, be cynical, jaded and cold because it affected my brain (my job did not help the situation) , but treatment is giving me a chance to start over and be the person I want to be, the best that I can be.  It’s a long road and this journey will take a lifetime. I will never be perfect.  I prefer the term “perfectly imperfect.”  Being able to feel things and not be calculated about everything helps me tremendously, but it can be overwhelming at times.  I know without a doubt, who my support group is.  It’s open to the public, hence this blog.  If any of my “old friends” want to come in, I will welcome them and forgive them.  (I know that I am not the greatest person at reaching out and asking for help, but  I’m making progress.) Lyme has given me the chance to start over and while I might end up losing everything (money is already gone,) I know this journey has changed me as person and is going to lead me to the path that I’m supposed to take to be fulfilled as a person.  It might take a while, but I’m going somewhere beautiful and serene and filled with happiness.

Kara also put together a fundraiser for me through work.  I appreciate her doing this for me and I appreciate each and every person that donated! I want to wright personal thank you notes, but at this time my handwriting is horrible and I can only do a couple at a time.  I also need to get all the names so I can personalize them.  I’m hoping to get this done soon.  I’ve recruited help but with schedules it takes time. Again, THANK YOU TO ALL THAT DONATED!  The money is being put to good use towards treatment and to keeping me in my house with electricity.

If anyone reading this is interested in donating you can visit:                http://www.gofundme.com/LadyLymestorm

Posted in Comfort, Emergence, Exhaustion, fighting back, germs, Herx, I will get better!, Immune problems, Immune system, IV infusion, Journey, LBC, LLMD, Lyme, lyme disease, No Stamina, Pacing yourself, spiritual, steps, TBD, ticks, Uncategorized, Under Our Skin, Zombie | Tagged | Leave a comment

System Failures and Money Matters

Posted on November 7, 2014 by lymestorm

I am battling several diseases all of which are capable of taking my life.  At my time of diagnosis (April 2014) I was told that I would have died within 12 months time had I not received medical intervention.  That didn’t seem real at the time, I guess because I was digesting so much other information that was thrown at me and my primary thoughts were focused on how to get better and how to stay alive.  Sometime in August that fact hit me like a ton of bricks. I had survived a near fatal car accident when I was 5 years old.  I fought then, just like I am fighting now.  Only this time, almost everything that can go wrong has.  Money doesn’t make the world go ’round but it sure as hell helps.  Especially when you  are fighting for your life.  The sad thing is that I have learned that not only did I count on people that have “disappeared” as friends but in my darkest hour(s) of need, with few exception, I have had even less support in raising funds to help keep myself alive. With all my connections as a 911 dispatcher and former volunteer firefighter, I honestly hoped for help when I needed it and there has been almost none.
Let me preface the rest of this with the fact that for as long as I can remember, I have always been “obsessed” with money.  I never wanted to be broke! I worked hard to build my savings, I was more frugal than anyone I have ever met.  Having enough money to cover 6 months of bills was not enough for me, so I kept hoarding money for that “rainy day.” Thank God I did! I was in another really bad accident several years ago and when I got my settlement for that most of it was deposited into my savings account, while the rest was spent on essentials and house repairs.

When I started my battle with Lyme, Babesia, Bartonella and Mycoplasma, I was scared in so many ways.  Scared of the pain, the length of treatment and all that I knew was to come. I have always worked well when I can calculate a plan.  I crossed all my “t”s and dotted all my “i”s even before I actually began treatment.  I was lucky enough to have a job that I could medically retire from and from what I was told would only be a 3-4 month process.  I am now 7 months in, with an attorney involved, and still won’t know anything until most likely the end of January (this means that I have received NOTHING from my state retirement.) I also applied for State and Federal disability and other than food stamps, have received NOTHING from either one of them as well.  My last day of work was January 2nd of this year, which means I have stretched my savings as far as I can.  After this month I will have $43 left to my name.  I have no idea where the money is coming for my house bills nor my treatment.

Prior to beginning treatment, I spent an extensive amount of time on the phone with my insurance company speaking to multiple people to make sure that the information I was receiving was indeed correct.  I was counting on reimbursement from them.  I knew that because the doctor I was seeing was out of network, I would receive 80% of the “allowed” amount back after all my deductibles and insurance co-pays were met.  So I knew I wouldn’t be getting everything we (my mom and I) spent back but that I would be getting a large part of it back.  Out of $20,000 dollars submitted in claims, I was promised that I was going to be getting a minimum of $12,000 back.  That is until my claim was “accidentally deleted.” (Side note: claims are supposed to take 2 weeks for payment and I am in the 4th month of my claim.) After the claim was re-entered I went from $12,000 to a total of $538.66. How does that happen?! I have spent hours on the phone, over the course of the last few months, trying to get things straightened out to no avail. The latest being that I need to file an appeal process (which is usually denied anyway.) Basically, I was point blank lied to by my insurance company and they are now trying to get out of paying me what is due to me.  I have enlisted help because I mentally can not handle it anymore.

I have always paid my premiums.  I even opted for a PPO (the more expensive insurance) so that I would be allowed the freedom to seek treatment from the best doctors I could find, not just the ones I was told I had to see. My insurance company paid for treatment after treatment for each misdiagnosis I received without question.  When I was misdiagnosed with Multiple Sclerosis, my insurance company was spending $50,000 a year for just ONE medication.  There was no second guessing, no pre approval required, they just doled out the money for it.  What sickens me is that for what they were willing to spend on just that one medication which I would have been on for the rest of my life, had it truly been MS, my ENTIRE treatment with my port in place (IV) would be covered, yet they refused to pay for it or even give me what I am owed! How much sense does that make? I have tried bringing that up to my insurance company but it makes no difference.

All the promises that I was made, are wrong.  I accepted treatment based on the information that I was given, not just by insurance company but by the State and Federal governments as well.  I have cut every corner, financially that I possibly could.

I started a GoFundMe account to help with my situation.  I have never asked for charity in any form in my life, but if there was a reason to do it, now is the time.  It makes me cry to see how little it has brought it, especially when I see $10,000 being raised for a dog in 4 days or $15,ooo being raised for a trip to Europe in just 10 days.  I am not a resentful person and I try to celebrate other people’s successes but I can’t help feeling angered and hurt.

If I had cancer, I feel like I would be in a completely different situation.  Everyone wants to help when they hear cancer.  But the truth is that Lyme disease alone (not to mention my other illnesses) infects more people every year than BREAST CANCER, AIDS, the SWINE FLU and the AVIAN FLU COMBINED!  People still think that Lyme is curable when it isn’t. Even doctors aren’t educated enough to recognize it early enough.  Insurance companies see to it that they don’t pay for Lyme treatment and punish the few doctors that are willing to treat it.  It sickens me and breaks my heart.

I have been lucky enough to have help so far from my family (primarily my mom) in getting the treatment I have so far. But the money is gone and I don’t know if I am going to be able to receive my next round of treatment.  Stopping treatment at this point would be a disaster! The Babesia, which is the most deadly is not gone yet and stopping treatment would give it free run again and it could come back stronger than before and kill me in a matter of months.  Living with that fear is something I wouldn’t wish on anyone else.

I am supposed to be stress free during treatment because stress is detrimental to my progress.  It causes me to herx, takes me days to recover from and suppresses my immune system which needs all the help it can get.  Fighting with the government and insurance companies and dealing with lawyers…BAD! BAD! BAD! Despite all of the setbacks I was finally starting to see improvements.  I was having good days more frequently.  That is all changing.  Even with all the medications I have to help with stress, anxiety and OCD, its not cutting it anymore.  The idea of delaying and/or stopping treatment is overwhelming.  I DO NOT WANT TO DIE!! I have already started having more and more days and nights where the thought of suicide is creeping into my mind not because I want to die or give up, but I do not want to die slowly, on the same path I was before treatment.  I don’t want these diseases to take me, especially slowly, while not only do I suffer but my family does as well, in particular my mom who would see it on a daily basis.

I need help and am reaching out in every way I know possible.  I’m trying to survive right now, one day at a time.  If you are planning on going through extensive treatment, do everything you can to start getting income as fast as you can. Start begging if you have to, early on. No one likes being a beggar but if it choice between life and death, you do what you have to.  Keep pushing and pestering.  I wish I would have been more humble in the beginning and realized that but this has been a learning experience for me.  I’m trying to save anyone I can, from being in my shoes.  YOU ARE THE MOST IMPORTANT PERSON TO YOURSELF AND YOU HAVE TO FIGHT! Even when you don’t think you can, you have to muster the energy to SAVE YOUR OWN LIFE! Lyme alone, left untreated can and mostly likely will kill you, so fight! I hate putting things so bluntly but given the consequences of the situation, you need to know, in no uncertain terms. This is not a time for beating around the bush.  Do your homework, learn as much as you can (I know how difficult that can be) and be prepared.  This is unlike anything you will have to go through in your life.  With more and more people becoming infected every year, the financial resources are becoming less and less available.  Most charities that used to help with treatment costs are “no longer accepting applications” because they are tapped out.

If you are reading this and can spare even $5.00 please help me in my fight at http://www.gofundme.com/LadyLymestorm.  If you can’t make a donation, you can always help by sharing my information.

 

Posted in Anxiety, Babesia, Babesiosis, bartonella, begging for help, chronic pain, desperate, desperate times, emotional, fighting back, finances, financial help, Freaks, healing, helping yourself, hope, illness, Life is unfair, Lyme, money, money matters, Mycoplasma, OCD, suicidal thoughts, Uncategorized | Tagged | 1 Comment

24 Hours in Hell

Posted on October 19, 2014 by lymestorm

What happened in the last 24 hours I hope to never in my life experience again. My mom found me on the cold tile floor of my bathroom curled up as tightly as I could be crying in pain and herxing. My skin burned from the fever and the tears felt like ice as they streamed down my face. Explosion felt like the only way out.

Let’s rewind. This was my off week from dosing. I was well prepared for a week of relief. Monday was a rainy day which always makes me ache more, but despite that I felt pretty good. I spent the day in bed watching movies and relaxing. For once it was my choice to be in bed, a pleasure I have not enjoyed in such a long time. I had made lunch plans with friends for Wednesday and Friday. I had reached out and so had some friends I haven’t heard from in a long time. I was excited to get out of the house, to catch up on the “real” world and generally get to enjoy myself. And then the Devil seeped in.

Monday evening I started feeling pain again and generally feeling bad. I thought everything was “normal” for me. Things continued to get worse. I developed pain in my kidneys. I have been lucky enough to be 31 years old and never have a kidney infection, bladder infection or a urinary tract infection, but I knew something was going on, something more than usual. I was so debilitated with the pain, that I actually asked my mom to stay home with me on Tuesday because I knew I was incapable of taking care of myself. My mom ended up having to stay home with me on Wednesday as well. The kidney pain continued to intensify. Then after emptying my bladder I felt a burning sensation and searing pain. I made an appointment with my primary care provider. My urine came back negative for any signs of infection, but my CNRP wanted a culture of my urine. She put me on a preventive antibiotic that would treat an infection (being proactive) and gave me some pain medication to help with the pain (which was believed to unrelated to my disease.) I was to go for an ultrasound of my liver, kidneys and spleen, which I had done Friday and am still awaiting the results on. My mom returned to work on Thursday on the condition of having people come check on me. The pain meds did seem to help some. I called my best friend Kara, who came over in the morning. (Side note here – Kara has been one of my biggest strongholds and supporters for me. She is an absolutely amazing friend and I am blessed to have her in my life.) My Uncle came in the afternoon on Thursday to check on me and fix the hole that still remained in my ceiling because a friend let me down again. Friday my Aunt took me for my test and afterwards she treated me to breakfast and I actually ate. I hardly eat these days due to the fact that my liver and spleen still remained enlarged and press in on my stomach and due to the disease I develop lumps in my abdomen that range from the size of a gumball to the size of a baseball. I started to feel a little better. I enjoyed a talk with my Aunt and was up most of the day. Even though I felt horrible, I was bound and determined to get some joy out of the week.

Yesterday morning my mom and I had a conversation. I was extremely upset that I could not go to my cousin’s open house. I wanted to be a part of the family, to tell Jake how proud I was of him, how much I loved and missed him and I wanted to personally thank some people for donating money towards my treatment. My emotions kicked in and I got to a point where I literally could not stand up straight or even speak clearly. I couldn’t get out what was trapped in my head. I could hear the wrong words coming out of my mouth and had no control to stop them or correct them. I figured the best thing to do was take my Ativan, crawl in bed and sleep till I could find clarity. I laid down in bed. The room was spinning, I felt like I could vomit. I tried to put one foot on the floor (advice for a hangover) to try to help with no avail. Finally I passed out. I woke up drenched from “night” sweats to take my mid days meds and went right back to sleep. I slept for several hours and was woken up from the death screaming inside me.

I am the suffer in silence type. Leave me to myself and I will deal with it alone. I’ve been that was as long as I can remember. I started vomiting but the only thing I had consumed at all that day was my smoothie at 9am and after that came up, it was just bile and saliva.

I am the Queen of Vomiting. I can vomit pretty much on command. I binged and purged in high school on and off as needed to control my weight. I did serious damage. What 18 year old has a Hiatal Hernia and bleeding stomach ulcer?! I used my skills throughout my early 20s and my drinking days. I hated being drunk, I didn’t like not being in control and I hung out with very heavy drinkers. It was never that I couldn’t stand up and say no, I just got tired of it and I became the master of wasting alcohol. I would nurse one or 2 drinks most nights. (I’m not saying that I’m a saint and have never been drunk, but I can count on 1 hand the number of times that’s happened.) Shots and more drinks always ended up in front of me. So I would take my drink to the bathroom and pour half of it down the toilet, or drop it in a trash can when no one was paying attention. But the shots I couldn’t get out of. So I downed them like a pro (I guess its the Irish in me) and then proceeded to the bathroom to throw them up. Addiction hits too close to home for me and I didn’t ever want to go down that road. I also have an allergy to sulfa and with most alcohol containing sulfites I was always having a mild reaction. I know I have done severe damage to my insides from all of the vomiting. Its my go to. I over ate and I could get rid of it. When I was nauseated I didn’t fight it like most people, I just got rid of it. My system became so used to it that I lost control of it. IT HAS NOT BEEN INTENTIONAL FOR YEARS.

So when I got sick yesterday, vomiting came easily. I thought once I vomit I’ll feel better. I was wrong. It triggered my herxing. My stomach started contracting involuntarily. My back and kidney pain went from a 5 to an 11 on the pain scale. I started burping uncontrollably. Full body herx followed. My mom heard me crying, walked into the bathroom and found me.

The full body herx didn’t last long and I was able to move to the bed. My mom used every tool in her arsenal (massage, pressure points, pain relief cream from my bursitis, calming techniques) and still no relief. We checked possible side effects and reactions on every medicine I was on. All I could do was wait it out. For hours symptoms came in waves of severity. My mom laid in bed with me and tried to comfort me. What I went through was the worst physical pain I have ever endured. When I was stable enough, my mom went to bed with the promise from me that if things got worse to make her aware. I was up till 5 am. There were times I should have gotten her, when I was having severe chest pain, when I nearly passed out going to the bathroom. I broke my promise. I just knew there was nothing she could do. (I had passed out earlier in the day.)

After finally obtaining 4 hours of sleep I was doing a little better. Today my stomach is still in knots and I’m fighting to keep any food or beverage inside of me. I took a detox bath. I know I’m dehydrated. I should do a bag of lactated ringers. I did one yesterday but it didn’t help.

My theory on this…my body can simply NOT handle and process all of the toxins inside my body. My body is telling me its had enough and I’m pushing it to keep going because I have to. The only way out of this is to keep fighting. If I back off, I’m still going to be sick and things will still continue as the are. I have to be stronger than this. I have to find my focus again and keep going. I have to persevere. I have to win.

If you’re reading this please remember that you are ALWAYS stronger than you think you are. It is our instinct to survive but it is your decision to win and to conquer. As my mind raced last night and my body in unbearable pain, I thought of suicide and that its NOT an option for me. I am blessed with a strong will. Some people are not and for them my heart bleeds. I completely understand and comprehend why Lyme (tick borne infections as well) has such a high suicide rate. This disease can take you places you never imagined possible.

I wanted everyone to see me last night. I wanted non believers and insurance companies and the CDC and the NIH and all my fair weather friends to see me. The disease was visible. I wanted to dare them to tell me that what I feel is not real. I wanted them to stand there and watch my mom’s face when she couldn’t help her own child. I wanted them to see my test results. I wanted to scream! I wanted to stand in front Congress and tell them my story as just example, and force them to help the over half million people infected! I wanted them to see the thousands lost to this disease and to see the death inside of me.

I know that I woke up today alive and in better condition. This entry has taken hours. My brain is still not right, I’m still sick and my hands tremor as I type. I had to get all of this out. I hope someone out there will read this and think of me in their darkest moments and know that they will be ok one day. One day at a time and when you need it one minute at a time.

I’m not one to ask for charity but if you can please visit http//www.gofundme.com/LadyLymestorm
and share my campaign.

Posted in Blessed, Congress, Hell, I will win, Lyme, lyme disease, Misery, suicidal thoughts, Suicide, Survival, Team Lymestorm | Tagged | 2 Comments

Tears and Courage

Posted on October 6, 2014 by lymestorm

I’m so tired of people NOT thinking I’m sick because I “don’t look sick.” I wish that people could see exactly what is going on inside of me. I’m hate when some one finds out you have Lyme and they say “Oh I know someone who had that.” The co infections almost no one has heard of so they assume that they mustn’t be “that bad.” What I want is to scream at these people “I’M FIGHTING FOR MY LIFE AND YOU MORONS CAN’T PULL YOUR HEADS OUT OF YOUR ASSES AND SEE THAT!”
So I’m going to take a moment and explain exactly what Babesia, Bartonell, Mycoplasma, Lyme and a Chronic Multisystemic Inflammatory illness like for me at this moment.
Lets start with Lyme since most people naively assume its curable. Lyme is ONLY curable in Stages 1 and 2. Due to the lack of Lyme Literate Doctors and refusal of the CDC to change their guidelines, most patients end up in Stage 3 or Chronic Lyme for which there is NO CURE! Doctors rely on their scientific tests for Lyme when its actually a clinical diagnosis. Symptoms are vague at first and a large part of patients with Lyme are misdiagnosed because they are too far advanced and their immune systems are so compromised and worn out that their systems can’t/aren’t producing enough antibodies to test positive on a blood test (which are flawed and have a high rate of inaccuracy according to the makers of the test.) Lyme is an epidemic. Lyme is more prevalent than AIDS was at its highest rate and the Lyme numbers only continue to climb. AIDS has claimed more lives than Lyme but the suicide rate of Lyme patients is growing out of control. Thousands are dying either at their own hand because they can not take the pain and the lack of treatment or from complications of the disease, yet people continue to see Lyme as a minor blip in life. LYME DISEASE KILLS! And if people don’t wake up and start learning about it and demand changes, they are going to start losing their loved ones at a rapid rate. Lyme starts out with vague flu like symptoms, joint problems and fatigue. (There are over 300 known symptoms for Lyme.) In my case, I did get a rash (typical bulls eye.) I went to the doctor and got 3 weeks of Doxycycline. What I didn’t know at the time is that Doxycycline wasn’t prescribed long enough. To be curable it must be taken for a minimum of 4-6 weeks. System fail #1. That was 5 years ago. 2.5 years ago I was tested for Lyme by my neurologist, at my request. He told me I tested negative for Lyme on the Western Blot test but never bothered to tell me that I had tested positive on 3 bands, just not the 5 required by the CDC. Failure #2. I got sicker and sicker. I has pain every day, I was always catching something (a cold, the flu, etc.) I started to have tremors and a whole slew of “unexplainable symptoms.” I started having seizure, both grand mal and non epileptic form. I had night sweats and nightmares. Intermittent fevers. Heart palpitations and chest pain. These are just to name a few. Lyme was attacking my brain.
Let’s step over to Babesia. It is a sister disease to Malaria. Everyone knows, untreated Malaria kills. Per my doctor, I would have been dead within 12 months of my diagnosis. DEAD! It doesn’t get any worse than that. Babesia is a parasite. Millions of them living in my body. Feeding on my red blood cells and causing them to explode, thus the parasites find more red blood cells and multiply until they explode again. They cycle continues. Living things do not want to die. They want to live and with treatment to kill them, they are fighting. My blood pressure is so low now that if it goes any lower I’ll be on medication for that as well. Babesia is eating my insides. Its a parasite that will kill its host to survive.
Add in Bartonella, another organism that is willing to sacrifice its host for its own personal gain. This one however likes the brain. It settles in there and impairs cognitive function and blood flow. Without adequate blood flow you can incur irreversible brain damage (I won’t know how much damage is done till I am in remission.) Keep in mind that that the Lyme, Babesia and Bartonella are all hiding inside my body hoping to not be found and to again survive.
Last but not least, Mycoplasma. This can be found in humans very commonly but at a low level because a healthy immune system can fight it. But when your immune system is compromised it grows out of control and you feel like you have walking pneumonia at all times. I can’t eat or drink from the same glass/plate/utensil/etc., because it is passed through saliva. Imagine not be able to kiss someone for years! Im scared to even attempt a relationship because how to you explain all this to another person and not have them run for then hills?!
I’m in treatment and the purpose of treatment is to kill as much of this “crap” as I can. Hopefully I should be left with just remnants of Lyme, which is considered in remission. Where do these dead things go? They die inside of me. I have stuff to help “rinse” it out, but just as with any other creature, death causes release of toxins and my body has to try to process them out. My liver and spleen are enlarged because they can’t keep up with the death rate. All of it goes through those 2 organs.
I titled my blog Lymestorm because it is a mega storm inside of my body. (Think Superstorm Sandy on steroids.) It was also inspired by the band Halestorm. Lzzy Hale has given me lyrics to make me realize I am strong enough to beat this even on days like today. This morning I sat in bed and tears just poured down my face, from pain, from exhaustion, from everything. I looked at my bathroom door where I have a quote from Lzzy Hale and even through the tears I could feel her words…
“Every challenge you face is a chance to prove you are extraodinary. Thrive in the fact and in the darkness. Nothing is impossible, so don’t let this world break you. Be yourself and be proud to be misunderstood. Stand out in all your colors. The ones who live to bring you down are weak, they are afraid to be themselves and live their own life. They are content to blend in. As freaks, we take the hard road. We are leaders, creators, artists and inventors. Its never easy…but we take the risk because we are worth it! Support each other and together we will blaze our legacy in this side of the earth! Today, make a promise to never again let anyone or anything make you feel like you are nothing. Because you my little freak, are the heart to my soul. Be proud to be a freak…Write your name in gasoline and SET THAT SHIT ON FIRE!”
So watch out, because while so many have turned their backs on me and left me to rot and die during my greatest time of need, when I am in “remission” and better, I’m coming back to blaze my own trail! I’m going to fight for those who can’t, I’m going to cause changes and I’m going to do it with a healed heart and soul, with the love of God, my family, and my “TRUE” friends!

Posted in Babesia, bartonella, Coinfections, Educate, Fighter, fighting back, Freaks, Halestorm, Lyme, Lzzy Hale, Mycoplasma, ticks, Treatment, Uncategorized | Tagged | 5 Comments

Return of the Right Brain

Posted on September 13, 2014 by lymestorm

Its been a while since my last blog. I was trying to go for at least once a week. The last 2 weeks have been both horrific and terrific.
I had 9 days without having to dose and that was beyond fantastic! I could tell I was getting some physical energy back. I actually got to enjoy a few of those days feeling better than I expected. Then the disease reminded me it was still there… they were all still there.
I know I have said how this illness (and treatment) are changing me. I’m starting to get blood flow back to the right frontal lobe of my brain (this part of the brain controls feelings and emotions; often women are ruled mostly by their right brain.) The left side is getting more blood flow as well (this part controls logic and planning; often men are ruled by their left brain) but for someone who has spent years as a left brainer the reintroduction to the ride side is turning me into an emotional roller coaster.
I started as a 911 dispatcher when I was 18 years old. I was a trained firefighter and emergency medical technician and volunteered at my local fire house. From the age of 16, both my hobby and my career were dependent upon the idea of compartmentalizing and shutting off emotions to be able to function at my highest level, people’s lives depending on me. I had to find way to rationalize all the “trauma” you hear and/or see at either my job or while volunteering. But I loved both, I craved the adrenaline rush like a drug. I had to give up volunteering due to joint problems. That was a major blow since I eventually wanted to join a career department. So exercise (usually dancing either at home or out at bar) had to replace my dopamine. I also turned to work, the thrill of a “hot” or “in progress” call. I learned to appreciate dispatching a working fire, living vicariously. A vehicle chase tested my skills to the max. Was this patient in cardiac arrest going to make it because of the instructions I gave? Would the suicidal subject not go through with it because I was there to talk them down? At the same time, both work and volunteering took away my innocence without me even knowing. I was working as much overtime as could for years, thus dulling my right brain even more quickly. Top it off with an extensive amount of trauma (physical, emotional and mental) over the course of my years and I was left brain conditioned.
When I started the unknowing journey of treatment at age 30, I figured I was pretty set in my ways. I had a major head injury at age 5 that was nearly fatal and damaged my right temporal lobe. After reading so much information, that so many survivors of trauma to their frontal lobes, experienced major personality changes and often were “angry” or “aggressive.” I assumed I fit into that category. I never guessed that I didn’t. I figured that my primary emotion over anything was anger and I just needed to work through it and around it. So it started with therapy on and off for several years, for the anger problems. That was the beginning of the parade of doctors. Where they failed, I spent hours upon hours researching, trying to figure out what was wrong with me.
Diagnosis found. Ok, left brain, tried to rationalize the how and why. I approached treatment the same way. I prepared myself for pain and misery…just not the return of the right brain.
This month continues to be just as difficult as the last on the emotional front and just like I know I shouldn’t, I continue to push myself to evolve with it. Last month there were a lot more crying days, but I’m slowly catching up. I continue to discover parts of me that I thought were dead. I continue to struggle with my faith. I look for answers in everything, only to end up with more questions. Now I have come to the “letting go” stage.
Letting go has always been hard for me. I have carried so many things inside of me for so long that I didn’t know what it was like not to have them. Just like anything we experience, letting go is an essential part of life. We lose relationships for whatever reason (good or bad) and we let go of things that either once hurt us or once enriched our lives. But when your brain isn’t working at any where near full capacity this is a daunting task.
Recently I let go of something I had been holding onto with hope. I wrote a letter to a friend of mine asking questions I needed answers too. Knowing it probably wasn’t the best timing for me, but the not knowing was just eating me up inside. (Keep in mind I’m confined to my house with little or no time to myself and a brain that is like that of a manic depressive on rapid fire, especially when it comes to emotions.) I didn’t get the answers I had hoped for but just setting the record straight, that was such a huge weight lifted off of me. I had my emotions over the issue but then I let go. After years of not knowing, getting the answers I needed (not the ones that wanted) I found myself just able to let go. The wounds are still fresh but I hurt so much less than before they were even cut. I started with the most pressing and one of the biggest issues for me to let go of. Go big or go home, right? I found the whole thing to be cathartic. I love to write letters. It gives you a chance to get things out that you might not have the courage to say aloud or you might not say it the way its supposed to come out. Besides, I think letter writing is a lost art. Maybe I’ll make that my next goal, ha!
I still have some other big things I’m working on letting go of but since the first one, things seem to be going much easier in a way. I am letting go of past judgements on myself, forgiving myself. I’m still letting go of possessions and for once this seems harder than usual (probably because I don’t when I’m going to have money again, so I keep thinking of ways to repurpose, reuse or recondition things.)
Stress still remains an untameable beast to me. The fact that money is so short right now and with all my disability and retirement still out their waiting to come to fruition, I have no idea where I’m going to get money to pay my bills, its caused my anxiety to go all out of whack. For right now I’m letting the meds work when I need them to and counting on my mom to get me through all of this. I’m trying to ground myself spirituality and open my arms to God and the Universe to give me all that I need. I’ll keep you posted on how that’s going, but so far so good. I guess I’ve found my own true need to “Let go and let God.”
I don’t know what the next “stage” is for me. May be it will in turn be similiar to AA or NA, you just keep working all the steps as you go through life. I know I’ve still got many more steps to acquire though I just don’t know what they are yet.

Posted in Babesia, bartonella, emotional, hope, left brain, let go and let god, letting go, Lyme, lyme disease, right brain, steps, Uncategorized | Tagged | 1 Comment

Food Matters

Posted on August 29, 2014 by lymestorm

Somewhere in all this “treatment” talk, I need to bring up the issue of food as medicine. Throughout the decades the idea of what “food” is right for you has changed in many ways. We count calories, carbs, fat, trans fats, sodium and sugars just to name a few. Women starve themselves or binge and purge to be too thin (most recently with the emergence of “The Thigh Gap.”) Men and women both put in endless hours at the gym to have the “perfect body.” We shame ourselves for our eating habits but do nothing to change them. Many Americans, children included, are overweight or obese. Yet these same people are severely malnurished. Our healthcare costs continue to rise exponentially with doctors prescribing drug after drug. The only ones who win this way are healthcare companies, Big Pharma and our nations leaders. Healthcare does not imply that any one cares about your health.
I have spoken about being your own doctor and finding a doctor who work will WITH you. These have been 2 key elements in being at the place I am now.
Prior to my correct diagnois of Lyme Borrelliosis Complex and co infections, I was diagnosed with Relapse-Remitting Multiple Sclerosis, that quickly was re-diagnosed as Primary Progressive Multiple Sclerosis. For anyone that has suffered this misdiagnois or knows some who has that disease, you know how serious that can be. So how does this occur? Like LBC, MS is based on a combination of tests and physical findings. In my case, my neurologist was NOT a Lyme literate doctor. In the course of 4 years seeing him, he never bothered to tell me that I had tested positive for 3 bands on the Western Blot test (because according to the CDC I didn’t meet their criteria.) Despite a negative MRI of the brain and spine, a negative spinal tap and other negative tests for MS, I was diagnosed with RRMS. The only “MS” test that was positive, an evoked potential test showing one eye wa delayed retrieving images from a screen to be processed in my brain. I was started on Copaxone which required daily injections. Copaxone is designed to surpress the immune system. It basically told the Lyme and co-infections the assistance to run wild. This is where I discovered the importance of food.
After 5 and half months on the Copaxone, I wasn’t getting any better, I was only getting worse. Never convinced from the beginning that I truely has MS, I reached for my iPad and began searching for homeopathic or natural treatment for MS. I came across a video of a doctor who had MS and just years before, was completely wheelchair bound. She talked about food being nature’s remedy, giving the body what it needs to heal itself. From the time the doctor started the food treatment herself, it was 18 months and she was riding a bike. Pretty damn impressive!
I continued to search and search. I came across all kinds of “diets” and then I found my Holy Grail. Paleolithic. I hate to call it a diet because in America we all know diets are temporary, their just the newest fad.
I’m a picky eater. I denyed it for the longest time. I would taste foods but very rarely could I say something was “good.” I loved my Lucky Charms (They’re Magically Delicious!) I wanted my sweets. The only good for you food I ever craved was Brussell Sprouts. I did go a full month eating nothing but potates (mostly mashed.) I wasn’t a fruit eater, except for bananas. There were only a handful of veggies that I would eat. I was a meat and potatoes girl. (And Maryland Blue Crabs!)
I knew I had to change. I was at my wits end. Doctors failed. Medicine failed. So, I figured “What the hell?” and prayed that it would work. I chose to go full Paleo straight off.
What is Paleo? Well thanks to Pintrest and the internet, I found out. The best summation I’ve seen thus far is from Pintrest: “…only eat real food. Avoid sugar, grains, corn – gluten. Don’t count calories. Eat healthy fat. Eliminate toxins from your body, food and environment. Sleep in a pitch black room. Break the rules now and then, its good for you!” If you think about its what we were doing 60 years ago and its the basic principals of what we’ve known for years.
I will warn you that Paleo is hard for at least the first week and that, depending on meal plans, can be rather expensive. I almost never cooked. I lived alone so what was the purpose? I could just grab a burger somewhere, of pop in a TV dinner, or have some cereal. Now I had to actually think about my food. I learned to cook. I was using ingredients that I had never heard of. Coconut Oil became one of my best friends. I bid a fond farewell to my beloved “Lucky Charms” which I still wave to at the grocery store. Sugar and carb cravings are hard to handle. They are like a drug.
After the first 2 weeks on Paleo, I saw such a drastic change in how I looked and felt. It helped that my mom stared going partially Paleo with me. Even partially doing it my Mom both lost weight and felt better as well. I felt like I was on my way to healing and I even came off the Copaxone. Then I started the “cycle.” Staying Paleo with an very occassional treat, I would get sick, very sick for about 10 days, then I would start to feel better for the 20 days and this continued.
By the time I got my LBC diagnois I was just continuing down hill. I attribute this to the fact that when I was sick, I was too sick to cook and began to cheat more and more until I felt better. During treatment I would have to be Gluten free. My doctors knew about Paleo and were very impressed that I had put myself on it voluntarily. I went right back on it, hardcore. I continued to improve throughout April, May and most of June (during my treatment prep I was on new medications.) July was a horrible month. Because I was so sick I barely ate. My mom would let me “cheat” more and more. In her defense, I will say that I do not blame her. Her child was sick and she wanted to comfort me any way she could. Donuts and Twizzlers were my things. I volutarily and willingly ate them.
When July’s treatment was done, I promised myself and my mother, that I was going back to strict Paleo. I’ve been back on Paleo again for 3 weeks and this month of treatment is not nearly as bad as last month. I’ve come to a point, I think, where I miss the idea of what things taste like rather than the actual taste. My taste buds are completely different now, my mom has said the same.
I am not an expert on Paleo. There are plenty of books out there on the subject and good information available. Check out several diets. I chose Paleo as a way of life for myself. I stay fuller longer, I enjoy what I eat, I crave healthy foods and its helping my body to heal. I plan on passing this on to my children. Going in all at once is hard. Slowly incorporate whatever meal plan/lifestyle you choose. It will make the transition easier. But if you’re sick and you have a reason driving you to do it, as in my case, all in is the way to go. You’ll see your changes much faster and that’s what you probably need. I still swear that the reason I was able to suffer so long without becoming more disabled is due to the fact that I changed from the “American Diet” to Paleo along with detoxifying my house. I let what little immune system I had left fight LBC and not to worry about having to fight daily toxins.
I started going organic years about 5 years ago (mostly on meat.) Then I detoxified my home-no chemicals and nothing not found in nature. The only thing left was to detoxify by body and food was the way to go. Even before I knew I had LBC, I was being put on a path to detoxify my entire life.
FOOD MATTERS! I know organic, while best for you, is expensive. Look to the internet and/or Pintrest for way to go Paleo on a budget. You’re either going to spend money on pills or food. The choice is yours. Just look at the food you are putting into your body. You are what you eat and you are what you eat eats.

Some Recommendations if you are interested…

Against All Grain by Danielle Walker (Paleo cookbook)
Food Matters (documentary) Netflix
Farmageddon (documentary Netflix
Chemerical (documentary) Netflix
Utilize Pintrest its a great was to learn and find recipies that are “normal”

Posted in Babesia, Babesiosis, caveman diet, chronic pain, food, food matters, getting better, growing stronger, healing, healng yourself, helping yourself, homeopathic, hope, I will get better!, Lyme, lyme disease, paleo, paleolithic, sick, Uncategorized | Tagged | 2 Comments