Love and Relapse

It’s about 3:30 in the morning and I can’t sleep.  I’m sick.  Sicker than I’ve been in a very long time.  Life and its recent stresses have caught up to me.  I need to release, so here I am.

I hadn’t written in a while because there was nothing new.  I was living with day-to-day Lyme problems and dosing.  I was blocked, feeling like writing was redundant.  But the last 4-5 weeks changed that very quickly and put my healing body to the test.

I fell in love a few months back.  Things were great.  Then the surgery happened to him.  He needed a quadruple level cervical fusion.  Surgery went great and he was recovering well.  He was staying with me on a short-term basis.  On a Sunday night a month ago everything changed.  He wasn’t breathing right and I was unable to drive.  He needed emergency care.  As a former EMT (emergency medical technician) and former 911 dispatcher, I knew he couldn’t wait and so I called 911 and had an ambulance dispatched to my house.  I had my mom come drive me to the emergency room to check on him.  He seemed to be doing well, so I left to come home (because I was medicated and needed to take care of my own body.) I figured he’d call when he was ready to come home.   When I didn’t hear from him by the following morning I figured that they must have admitted him to the hospital.  So I called to find out.  I was told he was in ICU and “stable” and that was all I knew.  So I quickly dressed myself and headed up to the hospital to check things out for myself.  When I arrived at the hospital I found my “stable” boyfriend on a ventilator in a medically induced coma.

For 8 days he remained in the coma.  I went to the hospital every single day.  I sat and prayed with him, read Annabelle Lee by Edgar Allen Poe (my favorite poem) and read Tuesdays With Morrie by Mitch Albom (my favorite book) to him.  Never knowing if he’d known I was there.  There were periods when he would seem slightly agitated and I’d hold his hand or stroke his face and he would calm down.  I watched the swelling go down after the emergency surgery to clean out an abscess from a staph infection (MRSA) and prayed and waited on bated breath for him to be taken out of the coma with the breathing tube removed and to wake up. 8 days.  8 long days, I waited.  The stress from the situation and the time at the hospital (some days I was there for over 8 hours) taking its toll on my already weakened body.

Finally the day came and he woke up.  I was the first thing he remembers after waking up.  I never wanted him to be alone through any of it.  I stayed with him as much as possible.  In the following days, the time spent at the hospital was longer and longer.  Not good for my body but I pushed through it. Finally his parents arrived and I could get some reprieve so he wouldn’t be alone in the hospital.  I still wasn’t sleeping and resting enough.

Four days after he came out of the coma, he was discharged from the hospital.  They had placed a PICC line in his arm and he would have to be given IV antibiotics at home for 6 weeks, 3 times a day.  With his parents being out-of-state, they were not a viable option and so I stepped up and took on the roll of care giver.  Currently he’s staying with me and every 8 hours we do his IV antibiotic injections.

Last Friday he ended up being admitted to the hospital again because he felt his throat closing.  They admitted him to monitor him and to do some testing.  Turned out to be scar tissue from the multiple surgeries.

Needless to say, I have been there through it all.  Even on a normal person it would be taxing, but add in Lyme, my co infections and dosing and its been almost insurmountable to me.  It’s finally caught up to me, resulting in a full-blown flare up of my diseases.  I have been more exhausted than I’ve ever been in my life.  The last week has been misery.  My body aches and hurts in ways I didn’t know it could.  I have been barely functional. Yet until yesterday, I couldn’t admit to myself the truth of the matter and that in fact, I am relapsing and flaring.

Together with my mom we formulated a plan.  She is off for Labor Day so she’ll have an extra day off of work.  I am on strict bed rest.  I am going to be medicated the way I should be and sleep as much as I can.  My boyfriend is still here and obviously I still have to do his injections every 8 hours since I’m the only one trained to do it, but other than that I am to do nothing.  My mom is helping out anyway she can and my boyfriend (still on the mend himself) is also willing to help as much as he can without overdoing it.  I just have to let them help which is still a struggle for me.  I know that to get better I have to rest, sleep and ask for help.  I’m dependent upon others again, something I despise but I am still working on accepting help.

It’s a really hard blow to take a step back and to realize that I am still susceptible to this disease, that I am not superwoman, that I’m still sicker than I often realize.  I choose to utilize the power of positive thinking but even using that does not make me invincible.  I’m trying my best to balance.

Not only am I still sick and now relapsing but I’m learning how to have someone living (even on a temporary basis) with me for the first time in nearly 8 years (minus the 9 months my mom spent living with me when I first started treatment and had the port in my chest, but even then I was too sick to care or to take care of myself.) I’m surrounded by both eustress and distress and its taking its toll on me.  So now is my time to get better and heal.  My boyfriend is doing much better though he also has a long way to go.

Today is a dosing day and I’m already nauseous, so it should be extra fun.  I’m getting ready to take all my meds following this entry and try to go back to bed and to sleep.  I hope the pain relents at least for a while.  Medication here I come!

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Phoenix Rising

The last several months I haven’t been myself.  Too tired, too depressed, too suicidal to do anything. My days were taken minute by minute in a battle to survive the damage that my brain and body have endured. I found pleasure in nothing.  I lost my way.  My spark was nearly gone. I heard my mom pleas to not give up or give in or quit and lose my life.  I watched her tears and felt almost nothing except dead inside. I kept going and the only reasoning I can come up with is my undying will to win against my diseases and to not leave my mom.

After I was pulled off of my dosing schedule things continued to get worse.  At the advice of my LLMD, I had a HIDA scan done on my gallbladder and was encouraged to see a surgeon about possibly removing my gallbladder. The gallbladder can hold a “pocket of infection” which makes treatment more difficult and/or near impossible.  I wasn’t hopeful since this had been brought up last year at about the same time and the surgeon I saw then turned out to be a complete moron, claiming to be Lyme literate but not knowing its Lyme NOT LYMES. Still I jumped through the hoops.  I saw a new surgeon who was some what Lyme literate and believed it needed to come out.  After an ultrasound showing gallstones, there was no question it needed to come out and surgery was scheduled.  Even with the possibility of this helping my emotional state still continued to tank.  I was so depressed that I couldn’t even be hopeful surgery would help. I was proved wrong.

In the three weeks since surgery (2 weeks since my phone consult with my doctor who added new meds) I have seen major improvements.  I’ve even begun to laugh again something I didn’t think I’d ever do. At my follow up appointment with the surgeon he said that my gallbladder was “severely infected” and had been for a very long time.  Of course I was happy to have vindication but pissed off that maybe the last year of setbacks could have been avoided had I’d have seen an LLMD (surgeon) last year.

My treating LLMD made severe changes in my meds (especially my psych meds) and it seems to be helping.  I’m adjusting to the meds and even though I’m sleeping a lot because of them, I’m finally starting to see a little light at end of the tunnel.  That maybe, just maybe, I am a phoenix on the verge of rising from the ashes of who I was before treatment, what treatment has done to me and the pit I’ve been trapped inside.

I’m dosing now and its going better than it has in months (I’m only on day 3 of 14) but I’m choosing to cling to hope with all that I have.  I was actually granted a little reprieve this morning and was able to go to the grocery store.  It didn’t last long before the tremors and shaking started again but hey, I’ve got to start somewhere. My stamina is in the toilet.  Once my brain is back on track, I can get the rest of myself there too.  I’m hopeful that body will continue to cooperate with treatment and that remission is closer than I think. I’m trying to reach out and expand my support group and to feel apart of the world again.

One thing I can tell you for sure is that your support system is critical.  Some will come and go and this will be one of the hardest things to deal with.  I was raised to believe that family is the most import support group you can have but through the trials and tribulations of treatment I have learned that your friends can be better.  I’m lucky enough to have 3 people I can rely on no matter what.  I have others that do what they can and I understand and still appreciate everything  they do.  But I have learned with few exception that my family is NOT there for me.  Even the ones who watched me suffer at my worst (physically – they haven’t been there for the mental worst) have abandoned me.  The newest rumor in the family is that I’ve faked this entire thing (my diseases, treatment, being disabled.) That cut so deep I didn’t know whether to sit down and cry or explode in rage.  I chose the first.  Being so sick for so long and literally fighting for one’s life should bring people together, to teach us how precious life is and how much we take for granted but sadly I cannot say that applies to my family and I know I’m not alone in this.  That is one of the major reasons I write and publish for the world to see, because I want someone who is struggling to know its not just them.  Families, friends, people in general aren’t what they used to be.  When your first diagnosed (if you’re lucky enough to have people believe you and haven’t had who knows how many misdiagnoses) people will rally behind you but then the chronic part sets in and people don’t know how to deal with that.  You’ll change because you have no choice but to change, you have a life altering illness.  People will get back to their lives and slowly but surely you will feel forgotten or alone.  Most of us spend so much time alone anyway because we can’t participate they way we used to, we’ve changed.

Despite all that the last months have put me through, the fact that I’m still not in remission or close to where I want to be, I hold true to the fact that deep inside getting sick was one of the best things to happen to me. I needed the change.  I think its made me a better person.  I’m not the people pleaser I used to be (I’ll always have some degree of it though) but its taught me that I need to take care of me or I can’t help anyone else.  Its changed my perspective on too many things to list.   I believe God is keeping me here for a reason and that one day, I don’t know when, all of this will have prepared me for exactly where/what I need to be.  We all have our crosses to bear in life, this just happens to be mine.  So I’m working on being a phoenix rising.

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Surviving the Setbacks

I have been too tired, too exhausted to post anything for such a long time.  Treatment had not been going well and after talking to my doctor, I had an emergency appointment with my doctor at the beginning of last month.  Dosing was suspended for one month (its supposed to start again on Monday, so we’ll see how that goes) due to so many complications.  I figured in the month of no dosing my body would have a chance to heal again and get back to where I was before the blow I received in December.  This past month has not been at all what I had hoped for.

Instead I have barely been able to get out of bed, barely able to take care of myself and needed more assistance than I have in a very long time.  Both my mind and body have been under assault from my diseases; particularly the Bartonella and the Lyme.  It looks like I may finally be getting some answers as to why.

Even though dosing was suspended, I was put on a 10 day course of Xifaxin to help get things back in order again.  Sadly, this did not help.  Following my 10 days on Xifaxin I did a 5 day intensive cleanse on Purium hoping that this would help things improve the way it did in the fall.  It did help, but only minimally.  Something was very wrong and I didn’t know what.  Blood work and a HIDA scan (gallbladder scan) were ordered to see what else could possibly going on inside my very sick self.  After recieving the results of my HIDA scan it was recommended to follow up with a surgeon to discuss the possible removal of my gallbladder believing that there is a pocket of infection inside of my gallbladder that is affecting my liver function (I see the surgeon on the 15th of this month.) The gallbladder is often one of the first internal organs affected by Lyme and can easily develop a pocket(s) of infection making treatment extremely difficult.  My ejection fraction looks ok, but my LLMD and treating physician still wants me to speak with a surgeon.  I’m anxious about the surgeon to see how open minded he is and how much he know about Lyme and whether he is willing to talk with my LLMD.  Its trial and error because the office staff never know what “Lyme Literate” is and you have to try to spell it out for them only to get nowhere.

Blood results show that despite my cleanse my ammonia levels still remain elevated, especially considering the time I’ve had OFF of dosing which always makes ammonia levels go up (they are supposed to come down after dosing but never seem to do so anymore without some type of help.) My B12 levels are in the toilet, being only a 1/3 of the low end of the spectrum and my cortisol levels are also low.  I’ve been placed on medications to help get my cortisol levels back up to normal (side note – when I was working prior to retirement, as a 911 dispatcher my levels were always abnormally high!) I’m on B12 supplements (sublingual for now, but may have to go to injections if things don’t improve enough) My white blood cell count is also high proving that my infections are still raging inside my body. I’ll be on my new meds for a while and the blood work gets repeated in 6 weeks to see how much progress I’ve made (I’m hoping for leaps and bounds! Better to aim high.)

I had no idea the damage that both low cortisol levels and B12 levels could cause.  According to the Mayo Clinic, here are some of the side affects of both.

Low Cortisol levels:

  • Extreme fatigue
  • Weight loss and decreased appetite
  • Darkening of your skin (hyperpigmentation)
  • Low blood pressure, even fainting
  • Salt craving
  • Low blood sugar (hypoglycemia)
  • Nausea, diarrhea or vomiting
  • Abdominal pain
  • Muscle or joint pains
  • Irritability
  • Depression
  • Body hair loss or sexual dysfunction in women
  • Pain in your lower back, abdomen or legs
  • Severe vomiting and diarrhea, leading to dehydration
  • Low blood pressure
  • Loss of consciousness
  • High potassium (hyperkalemia) and low sodium (hyponatremia)
  • Darkening areas of skin (hyperpigmentation)
  • Severe fatigue
  • Unintentional weight loss
  • Gastrointestinal problems, such as nausea, vomiting and abdominal pain
  • Lightheadedness or fainting
  • Salt cravingsMuscle or joint pains

Low B12 Levels:

  • Fatigue
  • Shortness of breath
  • Dizziness
  • Pale or yellowish skin
  • Irregular heartbeats
  • Weight loss
  • Numbness or tingling in your hands and feet
  • Muscle weakness
  • Personality changes
  • Unsteady movements
  • Mental confusion or forgetfulness

With the combined list there are not many things that I haven’t been through recently or continue to go through.  My shaky legs are driving me insane making it almost impossible for me to drive except for very short period of time and even then I have to be weary because at any given moment my legs and/or feet can begin to shake, making for very difficult let alone dangerous driving conditions, hence why I have opted out of driving lately.

I have tried to get out with friends a few times, thinking that maybe my depression was getting the better of me.  Every time, despite having a good or bad time, I end up paying for my excursions for days on end.  I went to a Washington Capitals game this past Wednesday (so nice to go to DC for fun and not for a doctor’s appointment!) I had a blast but spend 2 full days in bed barely able to move from bed to even go to the bathroom or to try to eat.  I have to accept that for now, this is the way life is.   I can’t wait for the day I hit remission, whenever that day comes and unlike most people, I wish I could go back to work.  I hear that it “it must be great to be home and watch tv all day and do nothing.” THAT IS NOT GREAT AT ALL! I miss having a purpose in life other than surviving from one day to the next.  I want to be a participant in life again.  I used to say that I missed my old life, but in truth, I don’t remember what its like not to be sick anymore. I miss being a part of something bigger than myself, something bigger than my health issues and being a contributing member of society.

Doubt and fear dictate so much of my life now.  I’m scared of the day to day trials and tribulations. I fear the unknown and the future.  I ran into some people that I knew today and the entire time my heart was racing with anxiety.  I wonder what people think.  Can they see the change in me? Do they think I’m faking it?  (I think all Lymies are pretty used to this question.) Honestly part of me still cares, though I don’t know why.  I’m trying my best and doing the best that I can and none of them have to walk in my shoes or have.  All I’m trying to do is to do my best and hopefully make a difference for someone else, so they don’t have to go through all I’ve been through.  I’m just trying to kick ass, get well and survive the setbacks.

 

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Trapped Inside My Own Head

For the last couple of months I have been confined to a terrible, horrible place…my own mind.  I haven’t written. I haven’t danced. I’ve hardly left the house.  I haven’t been participating in life around me.  I haven’t done much of anything except medicate to keep from going completely insane. I’m sick. I’m bored.  Yet I’m so internally busy I don’t have much time for anything else except thinking.  Thinking is a dangerous and slippery slope for me to try to navigate. My brain has always naturally gone to the darkness.  It rejoices there and takes comfort.  But I, as a complete person, do not.  I am constantly reminding myself that, the darkness is not me and I will not be defined by it.  I am fighting to retain my courage and to fight against the darkness in me.

Prior to beginning my new dosing cycle at the beginning of December, I was feeling pretty good (all things considered.) I was trying to stay busy and keep myself occupied with friends and family and activities.  I felt fulfilled and was happier than I had been in a very long time.  I was still having really bad days but they were far and few between.  I was trying to regain “life” from within and to participate in the world around me.  I was planning for the future and I was hopeful again.  I knew that things would not stay that way forever, my dosing was changing and I would again, be even sicker because they were hitting me hard in my new dosing plan.  I thought this would be physical.  I’ve had a lot of practice with physical pain, that I can handle.  What I was not prepared for is how hard dosing would be on me mentally.

The best way I can describe my journey is to compare it to a bonfire.  When you first light a fire the flames burn wild and in a fit of chaos, the heat is intense.  Once lit, the fire settles into a dancing flame and the heat becomes steady and you become accustomed to it.  And then…you stoke the fire and it becomes wild, chaotic and unruly again. My fire was lit when treatment began.  Throughout treatment, the fire has been stoked many times and I’ve adjusted (it’s never been easy but this has been mentally more grueling and prolonged than any other period (minus “24 hours in hell.”)) This time, my body is stronger but treatment has been aimed at my brain, the last stronghold for my diseases.  Not only is the fire being stoked but the hot poker has been jammed straight into the deepest parts of my brain and held there to “burn away” the sickness while new fuel is added to the fire.  This is wreaking havoc in places I didn’t even know existed within me. My brain is ablaze and I’m trying to put it out.

Every fear, insecurity, every negative thought has crept into the “Lymelight” at some point or another recently.  It’s a constant barrage of bad that I am fighting every second of every day.  With winter now in full force, the dreary days are only adding fuel to the fire.  I accept that on dosing days, I have to medicate to stay in bed or on the couch to let the dosing meds do their job and to conserve my energy for my body to fight the diseases.  The ups and downs of the weather are not being kind to my body but they are just as devastating to my mental condition.  I can’t get outside the way I used to and while I know that spring is only a couple of months away, that seems like an eternity right now.   I take comfort in the earth and outdoors. It makes me feel connected to a higher power and to the world around me. Stuck in the 4 walls surrounding me leaves me feeling alone and isolated and disconnected.  I don’t have enough I can physically or mentally do that will keep me busy and distracted.  I’ve been praying for snow so that I can get outside and do something.  I know this sounds completely asinine because the precipitation will cause me more physical pain and add to that the shoveling that goes with it, really overdoing it on my body, but it’s being outside and taking in the beauty and feeling alive again.  All in all, it’s a bad situation that just can’t be changed right now.  So I’m doing all that I have to just to make it through each day.

I’ve never been one who likes to medicate for any reason. Even with a migraine, I’d prefer to wait it out or sleep it off before I take anything.  I hate pills, which is ironic considering the amount that I have to take every day (even more when I’m dosing.) I have a long family history of addiction and I am terrified of becoming an addict.  I have wrestled with the idea of giving into what I know I need to do because it goes against everything I want to do.  After talking with my therapist repeatedly, I gave in to taking meds that do help.  I still don’t take them as much as I know I should or as much as is prescribed but I’m trying.  Baby steps until I can get there.  I just hate feeling dependent on a pill to keep me calm and get me through the day.  I don’t want to be zombie.

Relationships in my life are suffering from dosing as well.  I’m withdrawing from people because I can’t be around them.  Everyone gets on my nerves.  I get on my own nerves.  When I’m barely functioning, I can’t handle any outside forces coming at me.  Even now writing this, I’m irritating myself.  I’m trying to get out what’s trapped inside of me because keeping it bottled up doesn’t help and I’m hoping that someone who reads this who is going through the same thing knows that they are not alone.  Someone else is suffering with you.  Be strong and keep putting one foot (sometimes just metaphorically) in front of the other.  We will get there someday.

This is probably one of my shortest writings but its taken me hours to try to focus enough to get out some of my thoughts.  I wish I could be more positive now.  I wish that things were different, that I wasn’t so mentally and emotionally destroyed and drained.  I know that this is only another part of my journey and that I will come through it, hopefully stronger, in the end.

 

 

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Support

Lyme disease (not to mention its coinfections) cannot be fought alone.  The old saying that “It takes a village to raise a child” is 100% applicable to tickborne illnesses.  Because in a way the road to health and remission requires a complete overhaul of one’s self, sense of self and everything that you ever knew.  It will leave you more broken than you can remember being, more broken than you thought you could be.  You will be a child again, the severity dependent upon, the severity of which the disease has hijacked your life.  For those on the severe end of the scale, the 20-30% of the sickest patients (like myself) you will wonder how you will survive, how you can possibly endure it, let alone reach a state of remission.

When I began this treatment journey (I was on it before I even had a name for what was wrong with me) I thought I could do it all on my own.  It was my health, my life and I was strong enough to win my way to an “old me.” Then things went from bad to worse.  I still had my family and my friends and I valued every moment with them, every thought, every prayer they sent me, every visit I received.  I was blessed.

What I was not prepared for, what no one told me, is that they wouldn’t be around forever.  That I was going to change in every aspect of myself.  I had been reduced to a child, barely capable taking care of herself in even the most menial of ways.  I was going to have to grow up all over again, grow up in an expedited fashion and along the way I would see the ghosts of myself, my friends and family and this is what I would be left with.

People love you when you are “less than.” When you are a doormat. When you can be controlled. When you are sick. When you are helpless.  It is a rare soul that will love you when you are all of those and none of those at the same time.  That is what unconditional love is.

Most people don’t handle the sickness of others well.  They don’t know how to relate or simple can’t handle what sickness does to a person.  It doesn’t matter the type of sickness, most people just need to “wait it out” and then maybe, if too much time hasn’t passed and you’re still the same “you” they may return.  But major sickness changes a person.  It changes them in a way that cannot be undone, it is a bell that cannot be unrung.  So where do the sick find their support?

One must have a strong sense of survival first and foremost.  This will sustain you in your darkest of hours and when you are alone in every sense of the word.  Survival is built into our DNA.  Even when we try to escape it because we think we can no longer endure, we some how are compelled, at times kicking and screaming, to go on.  But survival does not guarantee life and/or quality of life.

I have been at the end of my rope, holding on with one hand, begging for the courage to let go.  There were times I cursed my brother (who passed away 3 years ago very suddenly) for being gone.  I know that my brother was a tortured soul, that he struggled for almost all of his life and that he, not at his own hand, left this world. At the time I rationalized that it was God’s will, that his work here was finished.  I, again, believe in that.  But there were many, many times when I was angry at both him and God for taking him and leaving me here to suffer in sickness for so many years (most without the true identity of my illness.) I wanted him back, not just to be back but so that I could go.  My mother was the only thing that kept my survival alive.  I could not leave her. I could not let her lose two children.  That would have destroyed her.  Yet as much as she was my reason for not letting go, I was angry at the fact that I was holding on for her and her alone.  I did not think I could handle treatment and having an incurable disease for the rest of my life, a disease that is still hotly debated as “non existent.” I was losing every thing I once loved and stopped caring about the rest.  Looking back I count my blessings because without my mother and my strong sense of survival, I would not be typing this today.  I would not be among one of the lucky ones.

There is a very real epidemic within the Lyme community that is even darker than the disease and treatment itself and that is the high suicide rate.  Many are never properly diagnosed until they are dead and the sphirochetes are found in the brain. Many cannot survive treatment because of what it does to the mind, let alone the body.  That is why it is so important that if someone you know is diagnosed (even if they’ve been diagnosised with numerous other things – which is most common) that you believe them. You support them in anyway you can, because you may lose them if you don’t.  Not every one is strong enough to hang on, even with their best efforts or even with the best of support systems. They will be sick.  But they may look normal and at times even act normal, but don’t think for one second that they aren’t struggling in more ways than you can ever know, more than they could ever explain even if they chose to try.

The longer I am in treatment the more isolating it is.  Those that were there in the beginning see the physical improvements.  They sometimes see the mental ones too, but that just creates a false sense of reality to them.  My family has abandoned me with few exception.  My friends fall into the same category.  I know that treatment is hard on me.  But I also realize that it has made me unbearable at times.  I try but I am still learning.  I’m trying to stay centered and focus on my core beliefs as that is all I’m capable of at this very moment in my life.

I’m dosing again (this is my first week of two.) Physically, it hasn’t been rough but each day that passes I can feel it wreaking havoc on my brain.  I’m emotionally and mentally herxing.  I’ve been crying at just about everything, even the things that are supposed to make me happy. Everyone, everything, my self included, is getting on my last nerve.  I want…I want…  I want to be better.

After my last phone consult with my doctor, I got good news that remission may be closer than I once thought. My system is so stable from Purium that they are hitting my disease hard, as hard as they can to knock this stuff out of me and to get me to remission.  But even that is not sustaining me now.  I can see the light at the end of the tunnel IF I step out of myself.  I’m living day to day, minute by minute sometimes.  Waiting for the day to be over because that is one day I am closer to my goal.  The days pass, but too slowly for comfort. I am more alone than I think I have ever been. I spend the vast majority of my days completely alone with barely any phone contact.  I’m doing what I’m supposed to, resting in bed (or on the couch) allowing my body to fight against the disease with as much energy as I can give it.

I have a few people left, but its so much for them, I feel that I can’t put it all on just a few.  I’m fighting the urge to hold it all in.  I know if I do I’ll explode or go to my darkest place again and I don’t want to go there, moreover I can’t.  I’ve said it before and I’ll say it again “DON’T LET THE BASTARDS WIN!!!” I’m fighting with all I’ve got.  I still pray that “all I’ve got” is still enough.

What I want people to know from this is that mental illness (in all shapes, forms and sizes) is VERY REAL! Like anyone else fighting mental illness, I have no control over what is happening inside my brain.  My brain is literally being used as food for my disease.  There is war raging inside the confines of my skull: disease versus treatment.  Which one will win? Treatment will because it has to win.  I don’t have another option. I can’t make the Great Escape.

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What Is Wrong With Me?

What is wrong with me? That’s a question I get from just about everyone and one that I ask myself maybe too often.  I know my diseases.  I know them well.  After all, we’ve spent half of my life together (even before I knew their official names.) I’ve spent almost as much time getting to know them as I have getting to know myself (before, during and after all the “renovations and upgrades.”) But lately, I find myself asking myself that question more than I should, more than I used to.

I am always seeking ways to become a better human being, of getting better, of living a better life, of improving myself, of being a better member of a society that I once withdrew from. I have utilized every resource I know how to, every one I can find.  I believe there is no “one size fits all” when it comes to self-improvement on any front.  The only one who can decide what works for you is you.  NO ONE ELSE CAN MAKE THESE DECISIONS FOR YOU! Even when it comes to one’s own health, doctors can give you advice/medicine/treatment plans but ultimately you are at the helm driving you own journey, through action or inaction. You can choose to comply, to follow, to lead or even to do nothing.  I have learned to take full accountability for all my actions – past, present and future. The past at times rears its ugly head and I am forced to face that, despite learning to “compartmentalized” every once in a while one of those compartments is triggered open and I must adapt to handling it over again. It rarely ever works putting them back they same way twice.  Perhaps because I continue to change and therefore my tactics for dealing, coping and healing must also evolve and change as well.

Many people still know me as someone I despise now (because they haven’t seen me), someone who was so sick but not knowing why, someone who I no longer am.  Truthfully, it hurts to know that who I was I cannot change.  I can and have, changed who I am now.  That’s all one can ever really do. (Make amends where you can and should.)  I know that the way others feels about me is their problem and not mine.  I live as authentic and true to myself and my creator and to my values as I can.  I am far from perfect! What troubles my soul is how to move on from what once controlled me and how to take back the control that I had lost.  Its been a very, very slow process but I’m working on it.  Those who still know me from the past would probably find it impossible that I would ever change.  In a way, I can’t blame them for not wanting to see the change.  That doesn’t make it any less painful.

My goal lately is happiness and joy.  Happiness is an emotion and therefore subject to change (let’s be honest NO ONE is happy every single moment of their life!) But joy is sustainable with work.  Joy keeps us going when happiness is overrun by other emotions, especially the negative ones.  Joy needs to come from within, again “one size fits all” doesn’t work in this situation either.  We are all unique individuals with individuals needs/wants/desires.

Every day is a struggle.  I am no exception in this way.  Every day I wake, not knowing what my disease will bless or curse me with.  Will it change in an hour? A week? A month? A year? I am chronically ill, that is not going to change until a cure is found, which with the way my diseases are viewed politically, is not going to come any time in the very near future.  So I must adapt.  But I must not lose my inner voice.

The question of “what is wrong with me?” keeps coming into play over and over again for several reasons.

I am on a lighter dosing cycle (last month, this month and next month) than I have been on since I started treatment.  I am feeling so much better over all, though with the weather in the area I am in fluctuating as much as it has over the last month or so (constant swings of highs and low due to weather fronts with or without precipitation) make it hard for me to adjust and to stabilize.  Despite the weather, I have pushed myself too hard, especially during my dosing periods.  This I can promise is coming to an end.  With me feeling overall better, I got a false sense of “being well.”  Yes, I pushed damning the consequences because while I could I “needed” to feel “normal.” What really is normal? For me it meant putting my illnesses on the back burner.  NOT my best idea. And I’m paying the price for it.  I was forgetting my pills (its still a lot even with the lighter dosing.) So I asked “what is wrong with you?” “Do you want to be sick?” “Do you not want to stay feeling better?” Who am I pushing myself for? Because if I am not well than I cannot be well enough to push myself even a little. “What is wrong with me?!”

With all the overdoing and pushing and filling my days when I should be resting or taking it easy, I ask myself again “What is wrong with me?”

Food is my one saving grace.  Purium continues to make me feel better, have more energy, recover faster than I would without it. I’ve cheated on my no Gluten or “clean eating” a few more times than I probably should have, but despite that, my stomach is still doing amazing! This is one thing I don’t question myself on. It was the best “chance” that I have ever taken for my health.  It proves to me that “food matters” and that I need to “eat well to be well.”  I’m back to cooking and clean eating.

But food alone cannot completely rid me of the brain issues that are going on (I will say that it does help though.)  My anxiety is building the closer I get to November 18th, when I’ll talk with my doctor and get my new dosing plan that will start in December.  I’m anxious about being horribly sick agin, worried that even with the best laid plans and all this “healing” time that I will be back to herxing and being confined to bed.  I know that some of this is unavoidable because of treatment.  The whole point to treatment is to kill the organisms that hijacked by body for so long.  It is only natural that when something dies, there is decay.  Imagine this in your body.  Where do the dead things go? What about what comes from the decay? You end up feeling the dying in a way that no one can imagine until they experience it (if you don’t believe me, ask a cancer patient or survivor what chemotherapy is/was like.)

Instead of enjoying the “free” and “healing” time I have left, my anxiety kicks up and reminds me that every day is one less day of healing.  This is a total shift of what my normal mentality is…”enjoy each day; make it count; celebrate what you have.” I’m not depressed, just anxious.  This is probably in part because I know what the worst can be (treatment has literally almost killed me over half a dozen times, including ones almost at my own hands.) Sometimes the known is scarier than the unknown.  With the known, you know what’s coming, how bad it can be, how you’re going to feel, the control you will lose, even at times the inability to move.  So why am I focusing on this?! What is wrong with me?!

My only answer that I can come up with is that my diseases are flaring.  I know this because I know my diseases and because I can see them trying their hardest to win control of my body again,because I have new rashes.  I may not be able to control the thoughts that come into my mind nor my emotions but I can control what I do about them.  And so, as always, I fight…as I always have and always will.

Sometimes that fight involves distraction (anything I enjoy that will take my mind off of things.) Sometimes it involves rewarding myself for all I’ve been through and all that I know I still have to go through but will handle with the utmost kindness I can bestow upon myself.  I am my harshest critic.  I could spend days, months, years (and at times I have) dwelling on the past or every flaw I have (from looks to personality) but I am trying not only to be a better person to others but to myself as well.  But I am trying to refocus where I am and go back to the tools that I know that work.  Prayer, meditation, relaxing, being in nature, re-grounding myself, nurturing relationships.  I think I needed all the “what is wrong with me?” to re-center and to come back to place that I strayed too far from for a while.  I got cocky about how much I could handle and now I’ve been humbled again.  So its time to put my energy (my spoons) back to where they are needed and that is on self healing and preservation.  After all, I’m no good to anyone else when I don’t take care of myself and I know too many people are counting on me.

 

Posted in Antibiotics, Anxiety, Babesia, Babesiosis, bartonella, being ok, Being prepared, Blessed, chronic illness, chronic pain, Coinfections, Comfort, eat well to be well, emotional, emotions, Exhaustion, faking, faking being ok, Fighter, fighting back, finding your way, food, food matters, Freaks, getting better, go your own way, growing, growing stronger, healing, healing yourself, helping yourself, Herx, herxing, holistic, homeopathic, hope, I will get better!, I will win, illness, Immune problems, Immune system, Its not your fault, Journey, letting go, LLMD, Lyme, lyme disease, Medical, Medication Overload, Meditation, Mycoplasma, nature, obsessive compulsive disorder, OCD, oral medication, oral meds, Pacing yourself, pretending, psychic, psychic abilities, Purium, reflection, religion, right brain, sick, sick individual, spiritual, spoon theory, spoons, staying sane, steps, Support groups, Support\, Survival, TBD, TBDs, Team Lymestorm, Ten Millions Voices, thankful, the spoon theory, tickborne, tickborne diseases, ticks, Treatment, Uncategorized, unconventional, What to expect, yoga | Tagged , , , | 2 Comments

Unconventional Road to Health

I am intense.  I always have been.  I can be laid back but always in an intense kind of way.  After all I am a Virgo.  There are certain traits about myself that I just love and this happens to be one of them.  I never half ass anything.  But learning how to deal with being so all in, so passionate is a tricky trait to learn to manage.  I believe in doing anything with all you have, that you should be driven by passion, to live by it.  Its part of my “live authentic” way of life, to live as who you are and who you are meant to be, with conviction.

With all my new “abilities”, the time I have on my hands (whether I’m dosing or not), return of my right brain (and making connections with my left brain), treatment, “eat well to be well” and finding myself, I am probably more intense than I have ever been.  I am more open minded, kinder, less judgmental but just as intense, if not more so, than ever.  There is a saying that “the more enlightened one becomes the more isolated they also become.” I have not reached “full” enlightenment but I am feeling the effects of the more isolated part.  Being sick, alone and in retirement will do that to you too.  When you change and those around you don’t, when they don’t understand what you’ve evolved into and don’t want to, that’s a hard pill to swallow but you learn that that’s when its time for you to change those around you. Surround yourself with positive people.

I am unconventional (and pretty much always have been whether I voiced it or not) in most things I do.  Only now its really kicked into high gear.  I’m not afraid to try new things, things out of the mainstream and more attuned with my own welfare.  Yes, I see a Reiki (regularly), yes I meditate and pray and practice yoga, yes I’ve been on vitamins and supplements for years (even before I had to be), yes I am more spiritual than religious, yes I believe in the power of food and its ability to allow your body to help heal itself.  I know that Western medicine has done many wonders and in the event of a trauma there is no better place to be than the United States, but I think most of this country is unaware of the benefits of Eastern medicine because we are taught that it is antiquated or just “old” or “weird” or even because in the West we now have a “pill for every ill” (which by the way usually has umpteen side effects and/or interactions.)  I also recognize that without Western medicine I would not be alive to even be writing this.  But my continued existence would not be possible without thinking outside of the box, without researching my own health and taking certain parts of it into my own hands.

Lyme and my co infections have been an uphill and challenging battle which (for the most part) I have been able to take in stride. I started this blog to document my personal journey in the hopes that it would help others and thanks to many, many different types of feedback (messages, emails, texts, conversations, etc.) I know that I have already accomplished that, even if I were to stop today.  But I won’t because my journey isn’t over.  Even when I reach remission, my journey will never really be over until they find a cure.  That’s not to say that there won’t come a time when I feel that my words, my experiences won’t be helpful to at least one other person. Some have called it arrogance, to think that I can change anything or because I’m comfortable in my own skin…FINALLY.  I call it confidence and hopefulness.  I wish I would have found someone to talk to or a blog to read prior to my own experience to help me deal with what lay ahead of me.  Maybe then I wouldn’t have reached such dark and dangerous places.

In the words of Lzzy Hale ” They all say I lost my mind but I’m just trying to find a better way. Cause somewhere in the sea of fools the real truth is they’re scared because your brave. You’ll be ok, if you be yourself for no one else, they’ll hate you ’cause your beautiful. So blaze the trail that no one can, cause they’ll never understand… (that we live in a bad girls’ world).” Lzzy and Halestorm nail it yet again!

Maybe, as my mom says, I’m ahead of my time.  I’m not sure and maybe I never will be.  I do what works for me.  I have harnessed the power of the internet for personal gain when it comes to my health.  Eating clean and well, vitamins, being holistic and most recently a product called Purium have been key to my success. My doctors are doing their job and I am doing mine in this fight for my life and my health.  I’m fortunate enough to be smart enough and daring enough to try new things that have helped.  I’m not saying that every single thing I’ve done has worked or worked as well as I’d hoped it had but I’ve tried it.

Let me talk about Purium for a minute.  Since the very beginning of treatment, one of my biggest issues has been the stabilization of my gut. Because my gut was so unstable (in conjunction with the severity of my diseases) I had to have a Power line implanted in my chest and kept in for 9 months to get me better.  Even during that time “we” could never really get my stomach stabilized.  90% of your immune system lives in your gut. With the antibiotics only doing more damage in that aspect, how could I ever really get to remission without my gut being in order?  I have tried everything (both Eastern and Western medicine had to offer) including a multitude of cleanses and detoxes.  I finally decided, after thorough research, to give Purium a try.  In 10 days, this cleanse and detox did for me what 18 months of everything else couldn’t.  It left me feeling better and more stable (mentally and physically) than any other single thing (or in some cases combinations of things) had.  *I did consult my doctor prior to starting and it was endorsed as well as encouraged.* Yes, I lost weight (although minimal because I didn’t need to lose much or have much to lose) but I lost it in “problem” areas. But I walked away feeling amazing and achieved so much success I literally couldn’t believe it.  I only wish I had tried it earlier because it left me wondering how much farther along I would be in treatment by now.  My OCD and anxiety has greatly lessened as well.

I believe in Purium so much, I am now selling the product.  I’m putting it on my blog so that if anyone is in the same situation I was in, or you just want to get healthy, know there is product out there that CAN help you.  If it helped me, I have no doubt it can help anyone, that’s how strongly I believe in this product. For my fellow lymies, consult with your doctor (whether you are doing Eastern, Western, Holistic or a combination.) But there is hope for you. I encourage you to visit puriumcorp.com.  If you have any questions, I will gladly answer what I can and find answers to what I don’t already know.

****I am not using my blog as a venue to promote my own personal business as it has always been used as a tool to help others in need of help.  I am sharing my experiences in hopes that this is a tool that someone may be able to utilize to help themselves.****

 

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Dreams Come True – Halestorm

I have 3 major dreams in life right now…to meet be in remission, to be a wife/mother and to meet the band Halestorm. (Of course I still wish and pray for a cure, but since Lyme is not even accepted by the state as a reason for disability and insurance companies don’t recognize Chronic Lyme and Neuroborreliosis I don’t see a cure insight for the immediate (or even 5 year) future.)  I MET HALESTORM!!! They were all beyond amazing, not just as performers but as musicians and mostly as people.  They took the time to meet all the fans that were outside after the show.  Despite being in horrible pain (I think the adrenaline of knowing that I was possibly going to meet the people that save my life from my own hand last October (see “24 hours in Hell”) helped with the pain a bit) I waited for 3 hours after the show to meet the band and I couldn’t have asked for better experience.  Lzzy was everything I thought she’d be and more (so were the guys) but it was Lzzy’s voice in my head during those 24 hours that I heard. It was her voice, her lyrics, that my guardian angel put on repeat in my head to save me.  I told her she saved my life, in fact they all did and I shared with them all the reasoning behind how and why they did.  I even got to meet Lzzy and Arejay’s dad and stepmom – I thanked them for raising such fantastic kids who change lives every day and who save them; for giving them the tools to be who they are and do what they do.

You can say I’m Halestorm obsessed (yup, I have their band logo tattooed on my leg.)  I was rocking my Lzztomania shirt (Lzztomania – the need to listen to Lzzy Hale and Halestorm music ALL THE TIME!!!) You can say I’m crazy, but when you are in that moment when you want to give up because you just can’t bear the pain in any sense of the word (for any reason-mine was from treatment and what it was doing to not only my body but my brain as well) you need to hold on to something.  When nothing else worked, Halestorm got through to me.  So it became a dream of mine to meet them and personally thank them for not letting me quit, for continuing to fight and to beat these spirochetes/bacteria/parasites that are still living inside me and I’m still fighting will all I have.

What happened last night will sustain me for the longest time.  I know I still have hard times ahead, that I may indeed get to the point again when I am low and despondent, but I will hear them again in my head, I will look at my signed ticket, at the pictures with them, and I WILL NEVER GIVE UP!

This week was the best week I’ve had in years.  My birthday was Tuesday and it was the best birthday I can remember having.  I spent the day in bed (by choice for once) watching Disney movies. (I’m not exactly sure why-maybe reliving my childhood, but I loved it.) I went for a kick ass massage, took a nap, showered and went to dinner with my mom and closest friends to celebrate not only my life but life in general.  Totally relaxing, no stress and no drama day.  It was just what the doctor ordered:)

Wednesday was tattoo day.  I got my Tropicana rose (it was the first rosebush my mom had and my dad planted) and my dragonfly (a representation of my brother and because it is the symbol of rebirth/transformation which is what my journey has done (and still continues to do) for me.  It couldn’t have come out better! It was beyond anything I could have hoped for. Steve Skelly at Rayzor Tattoos in Steelton, PA did the tattoo.  Not only is he an amazing artist but an incredible person. I can’t wait to finish my half sleeve with him and see what an amazing piece of art he will create based on what I’ve chosen (all have symbolic meaning.)

Thursday I finally got my brown to blonde ombre that I’ve been wanting for almost a year.  Love my stylist! And that too came out awesome.  Friday was day of rest and relaxation.

But Saturday was the big day. Lymestorm was ready for Halestorm.  Finally seeing Halestorm again after waiting months (the original date was rescheduled.) I tried to stay in bed and take it easy, to store up my spoons/energy.  I knew it would be intense and that my body was going to put up a fight, after all I was making it do things that it did not want to do.  I was full energy until I just couldn’t go anymore.  My knees were swollen and purple and screaming.  My back was throbbing and locking up, despite trying to stretch often and as much as I could.  Everything but my heart and brain were fighting against me. I started to herx, full blown shaking and jerking for a while.  Still I pushed.  When I found out that I could possibly meet them, I didn’t care what I had to do, I was going to go until I collapsed.  This might be a once in a lifetime chance to thank them, which was always my driving force. Adrenaline helped.  But meeting them…it brought even more peace to my soul.

I can say there’s been celebrities that I thought “It would be cool to meet them” but there has never been a drive to find a way to make it happen, never that real, deep desire to meet them…except Halestorm.  I have been thinking and trying intensely for almost a year (Oct 18th-19th is a day I’ll never forget) to figure out a way to meet them and thank them.  Never in a million years, did I expect that I’d actually get a chance to meet them at the show (I couldn’t get my hands on VIP Meet and Greet passes, so I figured I’d see the show and then go home on a high from seeing them live again.) I’m still paying for standing all that time, for going too hard, for overdoing it, but I wouldn’t take it back for the world, I got to have a dream come true and sometimes we have to pay the price (I’m not at all complaining because it was completely worth what I’m feeling right now.) I’m still in a lot of pain but I think doing some yoga stretches while I waited helped me from being worse than I already am.

Lzzy, Arejay, Joe, Josh – if you end up reading this I want to again thank you for making one of my biggest dreams come true! I know I thanked you last night, but I will never really be able to convey exactly what you all mean to me. You all not only saved my life, but have forever changed it! Keep being you and keep doing what you’re doing! Thank you for loving your fans so much!

To all my fellow Lymies and coinfected…keep your head up, stay strong and most importantly (as my mom would say) DON’T LET THE BASTARDS WIN! LIFE WILL GET BETTER!  We have to go through hell, but there are brighter times a head and don’t forget to dream! I’m living proof that dreams do come true.  If you haven’t read it/seen it I highly recommend “The Secret” by Rhonda Byrne (the documentary is available on Netflix.) I believe it in wholeheartedly.

Posted in Amen, Babesia, Babesiosis, bartonella, being ok, Blessed, chronic illness, chronic pain, Coinfections, Comfort, dreams come true, emotional, emotions, Fighter, fighting back, Freaks, friends, getting better, go your own way, growing, growing stronger, Halestorm, healing, healing yourself, healng yourself, helping yourself, Herx, herxing, I am the fire, I will get better!, I will win, illness, Immune problems, Immune system, Its not your fault, Journey, LBC, let go and let god, Love, Lyme, lyme disease, Lzzy Hale, lzzyhale, Medical, reflection, spiritual, Spiritualty, spoon theory, spoons, TBD, TBDs, Team Lymestorm, Ten Millions Voices, thankful, the spoon theory, tickborne, tickborne diseases, ticks, Treatment, trying new stuff, Uncategorized, yoga | 1 Comment

Birthdays, Dosing, Healing & Psychic Abilities

In a couple of weeks, I’ll be a year older…I’ll start my personal new year.  Just as many people do during the coming of the “official” new year, every year (usually starts about a month before my actual birthday) I become even more reflective of my life.  I think not only about the past year but the past years, where I am, where I want to be, who I am and who I want to become and what I want for my life from this point forward.  I tend to become even more emotional and sensitive to everything. This is has been especially wonderful this year and last (insert sarcasm) because of the state of my emotions and my emotional herxing. Despite that I still, think it’s a blessing.

I started a new program yesterday, Purium, after getting approval from my doctors. (Never heard of it? Don’t know what it is?)  Purium is a transformation process that involves using foods to heal, detoxify and cleanse your body.  It helps to cleanse, re-set your metabolism, detox, break addictions to processed foods, boost energy, improve digestion, sleep more soundly, think more clearly, lose weight (although this is not my intended goal) and helps with a plethora of other medical issues.  I’m starting with the 10 day jump-start.   My program is being altered slightly because of my dosing protocol. (You can’t have it on days when you are consuming antibiotics because you don’t want to cleanse your system of the drugs you need to fight your disease.) I’m doing it to help improve my general state of health and with the hope that it will expedite my recovery and time to remission.

I’ve been clean eating for several years now.  It was a slow process for me.  I started slowly in the beginning – eating organic when I could. I cut out chemicals from my home (particularly in cleaning products) by making my own first and then by utilizing Norwex. I have witnessed, first hand the effects of food on the body.  My slogan “EAT WELL TO BE WELL!”  I know for a fact (and with doctor confirmation) that my choice to clean eat and be aware of what I was putting in my body, kept me from becoming physically more sick than I was and it saved my life.  Purium is completely organic and is used by many medical professionals in conjunction with standardized Western medical practices.

I’m still attacking my Lyme and Babesia and Bartonella on all fronts.  Purium is just another tool which I am utilizing.  My doctor has modified my dosing protocol to allow my body time to heal from the abuse its been through over the last 18 months of treatment (and wear and tear from my diseases in the decade prior to that.) This is an intense time of healing for me and it is my number one focus.  To be better, to heal.   After only one day, (I’m into day 2 now) I can already feel a difference and that’s from someone who already knew and researched and practiced the healing power of food.

Expanding on my repertoire of alternative tools, I saw a reiki last week.  Again, I had researched, but I still wasn’t exactly sure what to expect.  Those of us who are sick with this terrible disease and its coinfections, know that each person responds differently to each type of treatment in which we seek and/or utilize…its the nature of this nasty beast.  For me, the reiki was an AMAZING experience.  Not only did I have traditional reiki performed but an aura cleansing and chakra balancing.  (For those that are unaware, reiki has to do with energy movement and circulation.  It’s not massage, but does involve some hands on touching (best example I can compare it to, would be having a priest “lay hands” on you.) I limped into the reiki’s office with a cane and walked out as close to pain-free as I can imagine.  It wasn’t just a physical change I felt, but my body felt aligned with my heart and soul.  This is a practice I will definitely be continuing and recommend others to at least try it.  Keep an open mind and you might be really surprised by what you walk away with from the experience. (I also do regular yoga, meditation, dance, listen to music, go to the river, pray, just to name a few.)

I have talked about my “sensitivities” but haven’t gone into great detail.  After much research, reading and talking to others, I have realized and accepted that I have become a light worker as a result of my diseases and treatment.  (This is NOT uncommon, but is not commonly talked about.)

They say that everyone is born with psychic ability, it’s just a matter of cultivation.  I remember as a child seeing what I now know to be auras.  I’ve always been attuned with nature and animals but even more so now.  I spent years suppressing this “gift” and so eventually it went dormant.  It has been awakened by treatment and has only continued to grow stronger, more powerful and more prevalent in my life.  Let me explain…

My entire life, I can always remember dreaming things before they would happen or just having a feeling of “knowing” certain things.  I, like most, just wrote it off.  But something happened in late March of 2012 that opened a door that can now not be shut.  Out of the blue, I was dreaming about my Uncle John, who passed away at 31 (I was only 8 at the time and due to a severe head injury as a child, I have no memories of him at all.)  When I started dreaming about him, I was an adult in my dreams yet we were in only settings that I would have known him from as a child.  We started remodeling a house together.  My dreams about him started becoming more and more frequent, with no known reasoning.  It so happened that about 3 weeks after my first dream with my Uncle John, I went to have my tarot cards read by a psychic medium.   Without any mention of my Uncle, she picked up on him right away, telling me that he was using me to get through to my mom, to tell her that everything was going to be ok.  The psychic medium also mentioned that his job in Heaven was to help those who passed away either very suddenly or very tragically. She also told me that I was surrounded by no less than 7 angels and/or spirits at any given time.  Here’s where it really got weird…

A month later, almost to the day, my brother passed away both very suddenly and unexpectedly.  I knew this was coming though I had no reason to “know.” As hard and traumatic as the experience of losing a sibling was (it remains one of the hardest things I’ve ever been through and I still carry him with me every day), I found comfort with my Uncle John.  My brother also died at the same age (31) that my Uncle John did.  Some how, I didn’t know how, I was connecting with my Uncle John.

I thought this was divine intervention and a one time thing.  Oh boy, was I wrong. Once I started treatment, things kicked into high gear with the most increase in both frequency and new abilities coming to the surface in the last 18 months.  I started seeing dead relatives (some I’d met and some I never had.) I see them, not as apparitions but as clear as I can see any living being.  I then began to hear them.  I started to be able to touch certain objects and see things through the eyes of the people they belonged (or had belonged to.) Three weeks ago, I had another ‘first’…I literally watched my Great Aunt Jane walk into my body.  At first I was completely paralyzed, frozen.  There was fear, comfort, the feeling of not being able to breathe, a heaviness on my chest and warmth in my heart.  I’ve had it happen now with several others and each time, it still gives me the same feelings.  It’s an unbelievable experience but it’s still so new that is still scares me at first.

Ok, so I know you’re thinking, this woman has lost her mind or she’s just way over-medicated.  I thought that at first too.  But I have been able to give others undeniable proof that what is happening is very, very real (also I’m not on the mind altering meds I was before.)  I’ve written down things that I’ve been “told” and shared with my mom who has told me there is “no way for you to know that.” She and/or others have seen objects moving or even been around me and seen the dead.  So there is no denying that what is happening to me is very real.  I even spoke to a priest about this and he called it a gift that God has blessed me with.  I don’t talk about it often because of the looks I get, or the second guessing or being told I’m losing my mind.  But after talking with another Lyme patient the other day, who said they have gone through similar things (more thinking about someone and then them being in contact or seeing them) I felt it was important to share my own experiences hoping it would help someone else. (By the way, I go to a Christian counseling center and my therapist does NOT think I’m crazy, she actually very much believes in this stuff.)

The unrest in my family upsets me terribly.  What I need from them is not tangible things or things I need them to do for me.  I need and want the emotional support which I feel is just not there.  We all judge, whether we mean to or not.  What is important is, if and when we do judge to make amends and apologize for any harm or negative feelings we have inflicted on someone else.  I may not always agree with people, but I am willing to keep an open mind.  I will hear anyone out on just about anything.  I ask for the same in return, even if it comes down to “agreeing to disagree.”

My life is so very different from it was.  I want to feel understood or at least feel like there is an attempt to know and see me for the person I am now. My thoughts might go against what is common, but that does not mean they are wrong.  If I wouldn’t have gone against the grain and fought so hard for myself, then I would be six feet under and people would be mourning me.  Instead, I have been given a second chance and I desperately want people to see this and to try to understand me (even if they really can’t, that’s ok.) We all want to feel accepted, to not live in isolation from everything else.  I want the same things.  I want to be seen as an individual, who though at times may be not be in complete control of her emotions (including how they come out), is a unique person.  I was told that “the more enlightened we become, the more isolated we also become.” I am living this now.  IT IS NOT BY CHOICE! I can’t help what I know, what I’ve learned, what I’ve lived through.  Is it wrong to want people and friends and family to want to live the happiest, healthiest lives they can live? If so then I am dead wrong.  I’m not saying that what works for me, will nor does, work for everyone else.  Its been a learning process for me too.  Unfortunately, right now my world revolves around my health.  That includes food, alternative medicines, Western medicine, out of the box thinking, emotional learning.  I am alone so much because of my diseases.  I didn’t ask for them, but even so, I look at them as a catalyst for me finally becoming someone who really loves herself (yes, I still have my insecurities, imperfections and flaws – I know this, so no one needs to reiterate it to me.) What I need, want and crave is acceptance despite those all of those things.  I have lost so many “friends” because I no longer serve the purpose I once did or because my life has changed so dramatically and my focus has been shifted from just surviving life to celebrating it.  Some have walked away on their own. Some I have been forced to walk away from because they are not healthy for me.  It still hurts no matter what the reasoning.

This year I am much better physically and am choosing to celebrate my birthday with those that love and care for me.  Who have been and continue to remain at my side.  The numbers might have dwindled significantly, but those close to me, I see as irreplaceable. I start dosing again tomorrow and will finish up just days prior to my birthday.  I’m celebrating all week, maybe to make up for the years I missed because I was so sick and so unable to really love myself.  Overcompensation? Maybe.  But this is my life and for the first time in my life, I’m celebrating me, the love I have gained (for myself and others), my accomplishments and my ability to change for the better. This is going to be the year that I get even better and hopefully obtain remission!

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Stuck In Between

I’m stuck. Some days its more like being trapped.  The last few months have been pretty much a living nightmare.  I’ve had so many set backs with treatment.  My body is worn out and my brain is a mess most of the time.  I can deal with pain, chronic pain, severe pain (maybe that’s why tattoos have never been a painful experience but more of a relaxation and release.) It’s the mental and emotional aspect that is proving to be the most difficult and taxing part of treatment and recovery.

Treatment has changed me in ways I couldn’t even conceive before. Living with an analytical brain for as long as I can remember, I really only knew 2 emotions: anger and non anger. When I say anger, I mean that deep-rooted kind of anger that makes you mean and nasty and lash out without any control of it.  I could be sad (which I was a lot), I had moments of happiness and love but nothing compared to what I am able to experience now.  Frankly, my emotions are overwhelming most of the time.

It’s so challenging.  I’ve become someone completely different.  Someone I always hoped I could be (still working out the kinks, but being a Virgo I’ll always be seeking the unachievable perfection which doesn’t exist-put I’ll keep trying and changing and evolving.) I experience everything like a baby, taking in all the new things around me.  Problem being that no one wants to see me for who I am, only what I was.  That person is dead and gone and I’m glad.  Only in reflection am I able to see my mistakes and the flaws and how I must have made people feel.  That leaves me with a sense of guilt. I couldn’t change it then because I was too sick and I didn’t even know that was the reason.  I spent years in and out of therapy trying to change and be this person I’ve become.  I don’t think of it as a waste because I did gain a lot from it, but it could only get me so far because I was sick and I didn’t have blood flow going to the right side of my brain (where my emotions lay near death, so much so that I thought they were dead.)

It just started raining outside.  I can hear the raindrops and the rumble of thunder. “I like storms.  They let me know that even the sky screams sometimes.” The barometric pressure doesn’t help my body, but the rain (hearing or watching it) soothes my soul.  I have become very spiritual throughout this process of healing.  I have talked to a priest,  been to church and want to continue to go when my body allows me, but nature…that is what makes me feel closest to God.  I can “see” the beauty of God’s creation and it gives me this great comfort inside my heart and soul and it takes away the chaos in my mind.

I have a place that no one knows exactly where it is or goes to.  I walk down to the river.  Depending on my mood, I go left to hear the water gushing over the rocks and moving quickly or I go right where the water is calm and silent.  I usually go left.  I walk up the sandy “beach”, and sit on the rocks. Sometimes I walk through the water to the middle of the river to sit and feel the cool water running over my legs and feet, washing away the rest of the world. (This I usually do when I need to feel grounded and “cleansed.”) Sometimes I sit on the riverside and watch the water rush over the rocks.  The sound is amazing.  It reminds me that water, though we can walk/swim in it, is a powerful force.  It cuts through rock.  It lets nothing stand in its way as it will always find a way through.  I try to remember this in my darkest of moments.  But when I go right, the serenity of the calm waters creates serenity within me.

At the river I’m able to absorb everything.  The trees, the animals, the birds, the insects, the cars passing far off in the distance…everything.  Its puts my life in perspective. It forces me to step back from my daily hell and be thankful for that day, that moment, that second.  To breath in the air, God’s breath and just be grounded and centered and at peace with myself. That’s what I need most.  I do yoga and meditate and pray at home but it’s never the same as when I’m out in nature.  There I feel like I belong to the world, to something bigger than myself, bigger than the 4 walls that I’m trapped in most of the time. I can sit and pray on whatever part of the river I’m at and tear of joy, sorrow, happiness, relief will just roll down my face. Maybe its my soul raining and pouring back into the river, into nature, into God. I don’t know. Sometimes I just turn on the music on my phone and drift away into the beauty of my surroundings.  Maybe nature has a lot to do with my want to move to Ireland. There I have NEVER felt closer to God! I crave that feeling like a drug.

It’s when I’m away from the river, from nature that the problems arise. With few exceptions, I am alone (realistically I’m alone most of the time.)  I have been blessed enough to have a mother who will standby me through anything, even when I don’t want her around.  I have a few close friends I can count on. But even with that being said, I feel so alone in my thoughts.  No one has walked in my shoes and no one I know has as much time to think as I do (and even if they did I can pretty much bet, most of them wouldn’t.) I still am overly analytical (I think that’s a trait I’ve had my whole life and I’m working on quieting it down.) I’m just not afraid to face who I am, flaws and all and I think most people either don’t have time or don’t want to.  I’ve made peace with my demons, tried to make amends where I can and now I try to focus on being the best person I can be and to live an authentic life in which I am true to myself and my creator.

I am no longer the peace keeper, willing to eat her feelings.  I won’t be a doormat to anyone. I want real people and real love and support in my life.  I’m just so done with drama and craziness and dysfunction and fake people.  What’s the point?! I get one life and I’m lucky enough to be getting a second chance to make whatever time I have left here the best both it and I can be.

I’m still not out of the “danger” zone yet.  My body and brain are still fighting tremendously hard to not just survive but to live.  There are days I wonder if my body will give out on me.  The Lyme has done permanent damage to my heart and brain. That I can’t change.  But I am as holistic and organic and chemical free as I can be to give my body every opportunity to heal itself and to keep it strong so I can keep fighting to get into remission with my chronic Lyme and get rid of these damn co infections.

I still want to be a part of the world.  I still want to have friends and family that love me.  I want to have my own family as soon as I can. Unfortunately, my change in personality and priorities has not gone over well with some family and a lot of “friends.” If someone is not healthy for me, then I just don’t allow them to be an active part of my life.  It’s not that I hate them, or are angry at them, I just can’t have toxic relationships in my life in at this point and I don’t want to either.  I want happiness just as bad as anyone else and its taken me a long time to realize it, but I deserve it just as much as anyone else too.  I’ll admit it does still hurt when that situation happens, maybe even more so now because I can feel more deeply and because they don’t accept the best version of me to date.  But no one said life was ever going to be easy or fair.

So stuck, I remain…for now, between what I want, what I need and my personal reality.  I know my number one priority needs to be my health.  If I’m dead, I won’t have any of the things I want from life.  Being sick and confined to the house or bed or couch is additionally hard.  I thought I’d be in remission by now, but now I have no idea when that will happen.  I was at a point last week, where I was ready to quit treatment. No death wish but how can you keep pushing yourself and putting yourself through hell with no light at the end of the tunnel.  I can do anything, survive anything, as long as I know “this too shall pass” or I have a time period to look forward to being better.  I’m going back to the doctor next week.  I’m incredibly anxious.  I want them to be able to give me hope, that I will be in remission within the next 6 months or a year (and to tell me that at most I only have one round left of Babesia treatment, the Lyme and Bartonella are much easier to deal with) but I’m terrified of them saying “we just don’t know” or “its all a waiting game to see how things go.”

These disease have taken over a decade from my life.  They have stolen so much from me and even though I’m coming through it a better person as a whole, I want my life back, not the one I had, but the one I want to create.  I want to live and not just exist.  I’m seizing every good day I have.  I’m doing my personal best every single day, even if it isn’t enough for anyone else, it the best I can do for me.

 

Posted in alone, Antibiotics, Anxiety, Babesia, Babesiosis, bartonella, being ok, Being prepared, Blessed, chronic illness, chronic pain, Coinfections, Comfort, Death, desperate times, disappointed, Disheartened, Dying, emotional, emotions, Exhausted, Exhaustion, faking, faking being ok, Fighter, fighting back, finding your way, food, food matters, Freaks, friends, getting better, getting worse, go your own way, growing, growing stronger, healing, healng yourself, Hell, helping yourself, holistic, homeopathic, hope, I will get better!, I will win, illness, Immune problems, Immune system, Its not your fault, Journey, LBC, left brain, let go and let god, Life is unfair, LLMD, loneliness, Love, Lyme, lyme disease, Medical, Meditation, Misery, Mycoplasma, nature, obsessive compulsive disorder, OCD, oral medication, oral meds, poisonpeople, pretending, rain, rainstorms, Real People, reflection, religion, right brain, rivers, sick, sick individual, Sleep Deprivation, spiritual, Spiritualty, spoons, staying sane, steps, suicidal thoughts, Suicide, Support groups, Support\, Survival, TBD, TBDs, Team Lymestorm, Ten Millions Voices, thankful, thunderstorms, tickborne, tickborne diseases, ticks, Treatment, True love, Uncategorized, what life's about, withdrawl, yoga | 6 Comments