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.

 

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Death by Tick?

I am sick. Very sick. Again. I keep hiding things that I shouldn’t be.  I’m not accurately communicating even when I try my hardest.  Today has been filled with lots of tears.  My plate and cup are overflowing with guilt and stress and fear.  I am afraid of dying.  I am afraid that despite my best efforts, I may yet die from my diseases.

The Call.  I got a notification from my lab that my test results were in.  I went online and looked at them.  Much to my dismay my ammonia levels have continued to go up and this sent me into panic mode.  My white blood cell count is high, along with BUN and Creatin and a few other things.  Of course this was after hours for my doctor’s office. I tried calling my primary care who, of course, is out of town on vacation and doesn’t have an opening for 3 weeks. I was (and still remain) terrified of going back to the ER because of contamination and I don’t want to be put back in the psych ward, especially when I know what’s causing the chaos in my brain.  So I called the on call for my specialty doctor and thank the Lord that my doctor was on call.  I conferenced my mom in on the call and we talked about all my issues.  My mom was great at adding the things that I was missing and not explaining well at all.  I was to wait till the next day and my doctor would call me back with an updated plan.

After talking with my doctor again yesterday (my mom happened to be with me) the situation has been evaluated.  Changes in my meds and more lab work.  And now the waiting game.

One thing that my doctor reiterated to me was that I am NOT out of danger yet.  The ammonia is still doing things to my brain and my body. It could cause liver/kidney failure as well as damage to my lower intestines.  It could cause my organs to fail. Not to mention what its already doing to my brain (mood swings, highs/lows, confusion, poor judgement skills, not being able to communicate correctly…among other things.) My Bartonella is flaring and rebuilding itself.  I have the classic “cat scratches” again and they are spreading.  This means that the Lyme and Babesia are also growing stronger.  My joints are almost unbearable.  I have been doing lots of yoga and stretching to try to realign my body and center myself.  I’m failing.  The cards are once again stacked against me. And for the first time (despite the past suicidal thoughts and feeling like death) I am SCARED and TERRIFIED that I may not win this war and that I may die.

I keep telling myself death is not an option.  I haven’t fought this hard for this long to die.  I am still focused on one day at a time, but I still want things down the road.  I’m not finished down here, on this plane yet! My body is crying out! Its been to hell and back and its been ripped apart by the diseases and by treatment.  I’m trying to heal it.  I can’t go back to dosing until I’m stable enough to handle treatment. I can “what if” to death (no pun intended) but that’s not helping me.  So I’m giving in and accepting things…for now.  I am working on a serious adjustment of my mindset and my attitude.  I look so healthy and even though I have chronic pain, I’m not physically incapable (to the extent I was before) of doing things, this time I HAVE to make myself stop and heal and be in bed and sleep.  I have to take my meds (the ones I’m afraid of getting addicted to) because my body and brain need them for now.  My mom said that if I do get addicted then somehow we’ll get me into rehab.  But I can’t go to rehab if I’m dead.  I’m finally listening and taking my meds they way I need to.  I’m trusting that I am strong enough to face the addiction fear factor in the face and not be drug down that road.

Its all I can do.  Even if that means letting go of the reins and trusting God and my doctors.  For a control freak that’s hard.

I had therapy this morning and I cried during it (usually I can control it but not today.) After that I went to see my friends and meet their new baby for the first time.  Holding him, I felt the innocence of new life, of a new beginning and new world of exploration. He was beautiful.  I cried. I was talking to my friend and I finally talked to her about what’s been going on (I was hiding it and holding it in because she had enough with the new baby who was in the NICU for 2 weeks and she’s a first time mom and I wanted her to enjoy this time in her life.) I have missed her so much.  Life has greatly changed for both of us in the last year and due to circumstances beyond our control, distance has crept between us.  When I was leaving she said “If you need anything, let me know. Just because I have a baby doesn’t mean I can’t do things.” I told her the best thing she could do for me was to work on our relationship and make it better than it has ever been.  I mean this.  Yes, no one is perfect and we’ve all made mistakes and with my fucked up brain, I don’t always react the way I should (sometimes its overreacting and sometimes its underreacting-I can’t seem to get it right yet.)

There’s a million and one things that have been racing through my mind lately.  I can’t control if God decides my time is up.  But I’m making each day count.  I’m doing my personal best all the time.  I still make mistakes and am far from perfect, but I’m trying as hard as I can.  I have to be selfish now because of my health and that goes against my nature. I’m sorry to those that I hurt by that or by my words or by not being able to be there.  But if you truly love me and are a good person for me, I know you’ll forgive my transgressions.  I might to ask for some favors.  The biggest thing that I need now is love.  I need to be reminded that I am loved and that I CAN do this!

I need to be reminded because my memory has gone to shit and with being alone so much, the darkness will start to creep in, trying to pull be back into the pit of its stomach and that, this time, it may devour me. I know I am strong and that I am a fighter and no matter what the outcome, I will not go down without a fight!

“I have survived because the fire inside of me burned brighter than the fire around me.”

On a side note, for my fellow Lymers (I prefer this to Lymies which remind me of sailors), please listen to “Ten Million Voices” by Shaman’s Harvest.  It will remind you that you are not alone and that the only way we can make a difference is when we pull together and make our voices one.

“When it feels like your heart has been bled and there’s no more left to be said, trying not to fall / There are ten millions souls who are feeling like you and ten million more who are finding the truth / And it feels like its right where you belong / When ten million voices are one”

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Psych Ward

This is hard one for me and one I struggled with as to whether to discuss, but I promised myself I would be open and honest about my journey through my illness and treatment.  I needed some time to process all of it and get some things straightened out before I could talk about it.  I have to share this because it could spare someone else going through the torture I went through.

June 30th: I had an appointment with my therapist at 2pm.  As always, I was open and talked truthfully what was going on in my life and inside my head.  My therapist is well aware that I’ve I had suicidal thoughts (with no plan and no intentions to carry my thoughts out) throughout treatment and even in years prior because I was always sick and because of what treatment and my illnesses have done to my brain.  On this day though, I talked about them becoming more frequent than usual.  It used to be once or twice a day and had progressed to the point of all day, every day.  I kept telling her I didn’t know what was going on and why this was happening.  Even though I’d had a major set back in my treatment, I still WANTED to live.  I still had (and still do have) hopes and goal and dreams.  I wasn’t finished yet.  I hadn’t fought this hard to quit now.  I just didn’t know what was going on in my brain.

I guess I scared her.  She was concerned, very concerned.  She told me that she didn’t have enough to have me committed but if she could, she would have.  Instead, she suggested I get into see a psychiatrist as soon as possible to have my medications checked, maybe something needed to be adjusted or added. If I couldn’t get into see one quickly, she wanted me to go to the emergency room and be evaluated there.  This is when I started panicking and my anxiety kicked into high gear.  Ok, this MUST be more serious than I thought.

After therapy I called my mom and told her what was going on.  She came home and we called my insurance company and all the psychiatrists we could find (I had to see a female because of things in my past, I couldn’t go through what happened with the state psychiatrist and handle that trauma again.) Finally we decided that the emergency room was the quickest option.  I didn’t want to go to either of the 2 hospitals in the county I live in because I knew too many people who worked at both and in the past neither of them had done anything to help me.  We called the closest Baltimore hospital.  They were pretty much waiting on me to get there.  I thought “ok, this might not be so bad.  They’ll call for a psychiatric consult, I’ll get my medications checked and I’ll be able to go home comforted.”  THAT IS NOT AT ALL HOW IT PLAYED OUT!

Instead, I had to deal with a snooty P.A. who really didn’t want to hear anything I had to say.  Being that I had talked with my treatment doctor the day before (I had been incredibly sick over the weekend and my doctor had ordered blood work based on my symptoms.) I asked the P.A. to run the same tests my doctor had ordered.  I had gone for the blood work the morning of the 30th as well, not even a full 5 hours before going to the ER. The P.A. did NOT run them. I became irate.  (Keep in mind that when I got taken back to triage, they frisked me and had a security guard sitting across from me, watching me.  This only caused my anxieties to escalate.) When nothing was going according to plan and it appeared that I was not going to get the help I needed, I wanted to leave.  The P.A. told me that I could either voluntarily commit myself or she would, but either way I wasn’t leaving.

I had been in public safety for 15 years.  I knew what it took to have someone committed and couldn’t fathom how she was “going to do it.” But I’ve learned never to trust the health care system.  And so instead of waiting to see what they came up with, I opted to voluntarily commit myself so that in the future, if I applied for a job I would never have to check that box that says something to the extent of “Have you ever been involuntarily committed to a psychiatric ward?” That right there should tell them that I was thinking about the future.

I did freak when I found out I couldn’t have my music, that was my coping tool.  I had my mom write out the lyrics to “I Am The Fire” and the chorus to “Amen” by Halestorm. That, I could take with me. And that I could read when panic and anxiety were in overload.

They moved me over to “Crisis Intervention” where I would be evaluated by a social worker/therapist with a Master’s degree to determine whether I would be admitted to the pysch ward.  They put me in a room with just a bed.  This seemed like a bad idea to me, for anyone who was experiencing a “crisis,” to leave them in a room by themselves with nothing but their thoughts and a video monitor.  When I had to use the bathroom, it was literally like a jail/prison bathroom that you would see on Lock Up or some other prison show.  It was new all time low for me.  I finally asked for paper and a pencil to write.  I wanted to remember all of this, so I wrote to document my entire experience.  I found this to be a contradiction to the “no sharp objects” rule but I wasn’t arguing.  I was exhausted and fully expected to be released (my mom was in the waiting room.) Again, I was wrong.  That’s what happens when you’re truthful.  I wanted help, I didn’t want to have these thoughts, but they didn’t warrant a stay in a psych ward.  Yet that’s exactly where I ended up.

Five hours later I was moved upstairs to the actual psych ward.  230am.  I didn’t get any of my meds that I took regularly, including my anticoagulants and heart meds.  I asked and was told no.  This I thought was down right neglect and extremely poor patient care.  I was moved to a room with a roommate.  I have never in my life felt more alone and out of control.  I silently cried, tossing and turning till I finally found sleep.

July 1st: 6am I was woken up to have blood work done.  In less that 24 hours I had 3 sets of blood work done in the same vein, my only good one.  I was so bruised and it really looked like I had a track mark.  Being that I’m sensitive to even Band Aids, I had blisters on my arm from all the removing of tape and then it being put back on.  I went back to sleep for an hour and then was woken up for breakfast.  Based on the “Daily Routine” I was to see a psychiatrist between 9-11 am.  I was still convinced once I saw the psychiatrist they would agree that this had been a colossal mistake and I’d be discharged.  I saw a medical doctor who still denied me my regular meds.  Finally I was going back to see the psychiatrist…a MALE, the one thing I knew I couldn’t handle.  They sent a female social worker back with me.  I get back there and it’s another fucking P.A.  I needed an M.D./PhD!!! I was furious!!!

After looking at my med list the P.A. decided to discharge me because the hospital could NOT handle my medications. He didn’t at all care about my mental state but simply that they couldn’t handle my meds.  A HOSPITAL COULD NOT HANDLE MY MEDICATIONS???!!! I figured the supplements, but the meds?? I was sent back to my room while they set up a discharge plan.  I didn’t see a real psychiatrist until after I was told I was going to be discharged (and yes, it was a male-he never even looked at my med list, so this whole “visit” was for nothing.)

Funny too, that they set me up to see an N.P. at one of the offices my mom had called the day before.  Even funnier, they called me last week to say the hospital had finally sent over my records and the N.P. wasn’t comfortable taking me on as a patient due to my med list and health history. What a joke?!

Wondering what it was like in there? Well watch every movie made about psych patients (start with “One Flew Over the Cuckoo’s Nest” and then move onto “Girl Interrupted.”) That’s pretty much what it was like.  There was a guy in there who looked like Zac Galafinakis but acted like Dustin Hoffman in  “Rain Man.” My roommate latched on to me.  I guess I gave her comfort.  She had a meltdown when I told her I was being discharged.  Prior to that though, she told me that everyone was talking about me and how pretty I was and I didn’t belong there and how mysterious I was. (This actually made me laugh.)  So I was crazy enough to be forced into commitment by the “normal” people but I wasn’t crazy enough for the “crazies.” Talk about feeling out-of-place in the world.

I was severely dehydrated upon admission yet I never received fluids to help with that. I was probably suffering some amount of malnutrition being that I hadn’t eaten almost anything in 5 day, that wasn’t even looked into.  My experience was a total and complete and non funny joke!

That being said, if you are suicidal and you do need immediate help, do something! Call the suicide prevention hotline, go to the ER, call a doctor! Just because you are not going to like some of the things that go with it, putting up with those are worth it to save your life.

For us with Lyme or any other tick borne diseases, please read this part! When I finally got back the results of my blood work from my doctor the following Monday, I found out that ammonia levels were extremely high and toxic! (My white blood cell count was also extremely high – indicating some type of infection. Again, that was not addressed in the hospital either.) There was a medical reason for the way I was feeling.  High ammonia levels can cause confusion, delusions, poor judgement, mood swings and that’s just to name a few symptoms in the brain.  It can also cause liver and/or kidney failure and cause problems in the lower intestines.  My symptoms were explained by a simple blood test that I had fought to have done in the hospital.  Had they done it in the ER, I would have never ended up in the psych ward.  (I also found out that I had C Diff which completely shocked me since my symptoms in the department had greatly improved.)

The last couple weeks have been hard.  I still look “good” and “okay.” But if unchecked I could have died; whether from the ammonia or my own hand. That’s pretty scary.  It just proves that no matter what you still have to know your body and no matter how sick you are, you still have to fight for your health and advocate for yourself.  I had my mom to help in the ER but I was completely alone and on my own in that psych ward.

What’s still hard for me is that no one seems to understand how sick I really am.  I keep explaining it and with very, very little exception I am still advocating for myself.  While I know that “NO.” is a complete sentence, it makes it harder on me mentally when people are constantly second guessing you, or think you’re dramatizing the situation, or that “you have to be better by now.” This is a lifelong fight.  I will one day get into remission, but that doesn’t mean I’m cured.  My illnesses effect every aspect of my life even when I don’t want them too.  I push through the pain every day.  I don’t quit.  I have been physically overdoing it lately because my mind needed it, to be distracted and “feel normal.”  I’ve been going to a friend’s farm and trying to help out and talking to him and his wife and their wonderful children (his son has Lyme as well.) It takes my mind off things and I have grown very, very fond of his wife and reconnecting with an old classmate as adults has been great too.

My mom had surgery and I’m not taking my Ativan and Marinol like I’m supposed to because of taking care of her the BEST I PERSONALLY CAN. I’m still catching flack for not doing enough for her (from other people.) I’m physically exhausted.  I’m not sleeping.  I’m detoxing as well as I should be, but I am trying.  I’m not out of danger with the ammonia yet.  Its frustrating and I’ve had more than a few good cries by myself, I just wish people would take time to TRY to understand me and if they don’t believe me to look up the information themselves.  I’ll even provide the test results to them.  This is what I need and want from people who are supposed to and say they do love me.  I don’t want drama.  I don’t want a guilt trip. I don’t want pity.  I want to be shown some compassion and to be understood and listened to.  I know no one will full grasp the things I’m going through unless it happens to them (and I don’t wish that/this on anyone.)

This was as tough as I thought it would be to write.  I read my notes/journal from the hospital.  I’ve shed some tears.  I’m angry today.  I’m hurt.  I’m just not my normal self, although over the last couple of weeks, normal seems to be a distant memory.  I will get back to good. I’ll get back to my routines and nurturing myself the way I should.  Hopefully, it will start tonight with a good night’s sleep (I’m taking my meds I have prescribed to get that.)

As much as I’m tired of hearing other people saying it, I just have to remind myself “This too shall pass…”

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Deprived, Depraved, Depressed, Disheartened

Deprived, Depraved, Depressed, Disheartened.

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Deprived, Depraved, Depressed, Disheartened

I haven’t been sleeping well again. And I haven’t been taking care of myself.  I’m falling into old patterns and trying to stop them.  I’m putting the needs/wants of others before my own health. I’m trying to establish and ENFORCE boundaries, which leaves me completely exhausted  The Babesia, on and off treatment, is severely affecting me and my peace and joy and relationships.

Sleep deprivation is one of the worst things you can do for your body.  Sleep is when your body rests and rejuvenates itself.  My body isn’t doing that.  Even when I do manage to sleep, it’s not restful sleep.  Its full of nightmares and night terrors.  These leave me waking up with a sense of guilt and “bad seed” inside of me. It’s a horrible feeling.  I work so hard during my awake time to focus on being a better person, to heal, to be the me that was trapped inside for too long.  I get to a point where I am there, in my moment of blissful joy and thankfulness and then sleep comes (or doesn’t.) Then I fall into the “pit.” It’s a nasty dark place that feeds on my insecurities, my body issues (yes, I am thin and muscular but due to the culture we live in and my previous binging/purging I still view myself very differently than the world does), my fears, my OCD, my anxiety and its so easy to get lost there.  My tears only fuel the hunger.

I get so tired of people saying it must be great to be disabled and/or retired.  I am 31 years old.  Being disabled/retired at that age was not by my choice! I learn new things everyday (even just on Instagram) that were obvious signs of my disease that so many doctors missed and I get so angry because the “health care” system failed me and I am paying the consequences…not them and there’s not a fucking thing I can do about it! Being disabled is NOT fun! Ok, yes I don’t have to go to a specific “job” but my “job” how now has become learning to deal with a life threatening (actually 3) disease, finding money to support treatment and taking care of myself (which at the current moment I’m not doing so good at.) Yes I may post pictures on Instagram or Facebook.  Its celebrating the good days that I have, when I can leave the house or even just get out of bed.  I know that I will “pay” for things and that recuperation from an outing, requires a clear day after an outing.

I am trying to walk a tight rope, find a balance of what I can and can’t do.  It’s a learning process.  Yes, I cry (a lot) and still mourn things, but I’m trying to heal my brain-make new connections and be resourceful.  I try to find new ways to do things I used to.  It’s what works for ME that matters.

I want to do so many things for so many people, because that’s just my nature.  I KNOW I can’t.  It’s painful for me to say NO, its painful for me to leave situations that aren’t healthy for me; its painful to leave relationships.  These things may or may not affect “normal” people but when your brain is sick and messed up and you have parasites/spirochetes/bacteria feeding off of your brain it makes everything worse.  I look better than I did and year ago and physically I am doing much better overall.  That doesn’t mean I still don’t have days where my body is just as bad.  It was raining a couple of weeks ago and its was killing my body.  I went from using a cane for the “just in case” my knees go out, to depending on it, to holding onto walls everywhere I went, to crutches.  But very few see this because they are not here with me.  So when you see me out and I have on make up (to hide the bags under eyes from not sleeping) and I’ve put drops in my eyes to clear up the redness and stop the burning and I’ve put on “real clothes” and done my hair, yes, its easy to say “you look so healthy” or “you don’t look sick” or “you must be better by now” but don’t for one second think that I’m not smiling through the pain and faking being well.  Every girl (every person) wants to feel like they look good occasionally, you just have no idea what it took that person (especially a sick one) to look that way.  Looks can be very deceiving!

My OCD is holding at its current state.  It’s not getting better, those some days it does get worse.  My anxiety is through the roof! I hate taking pills! I take so many as it is. Addiction comes at me from just about every angle in the gene pool (that doesn’t mean everyone in my family is an addict but each generation has had one and carries the gene.)  Know one knows how hard it is for me to “medicate” when I need to.  Yup, I might pop a pill but you have no idea how hard that decision was, even though it was probably a decision I should have made much sooner.  I know that I need my medications that I take daily and my dosing meds.  I avoid Ativan and Marinol as much as possible because I don’t want to become addicted (this thought never leaves my mind.) I try as much holistic stuff as I can.  I practice yoga (even if it’s just the simple stuff) as much as I can, I try to stretch everyday (body permitting), I meditate, I pray.  Music remains my saving grace.  If you see my out, unless someone is talking to me, I have my ear buds on and something playing.  Its become the only way I can go to the grocery store (most stores in general.) I have upped my therapy sessions to twice a week.  Not because I want to, but because I NEED to.  I’ve picked up a book on learning to play piano again to work on my hand eye coordination. I’ve started writing all my hundreds of quotes from my phone or Pintrest or anywhere else I have them.  Its going to take me a long time, but for those who don’t know, I had to learn how to write all over again.  Its something I had to learn all over again.   I’m trying to stay as busy as I can to keep my anxieties at bay. I’ve even started relearning French which is surprisingly coming back easier than I thought it would.

So yes, I am attacking these disease with everything I have and I’m doing everything I can to heal and “fix” my brain.  My therapist suggested that I start taking the Ativan and Marinol (Marinol is for pain control) more often to try to get things under control.  Even if it’s just for a short while, I NEED it.  I can’t keep going like I have been.  My stress level is beyond what I can handle.  My anxieties and OCD as well.  I’m trying to enforce too many boundaries (I know I should start small and build up, but I need protection from the things that continue to hurt or hinder me.) I start dosing on Monday. I made myself a promise to commit to taking my meds around the clock like I’m supposed to (by my therapist’s recommendation and my doctor’s orders.)  It does suck because I can’t drive “high” and have to plan when I can take my meds around times that I need to drive (aka therapy.) But I’m going to take better care of myself.  It was easy when I could physically do things, but now that I can, it’s actually harder to restrain myself. (Side note: I hate being high! I hate not feeling like I’m in control of myself. I hate not being able to get in a car whenever I want, especially in the event of an emergency. Most people wouldn’t mind it and would welcome it, but not me.  I want to better and in control of my emotions and mental state without the assistance of medications.)

I am terminating several friendships. It scares the living hell out of me because my “circle” keeps getting smaller.  But theses friendships, even though I enjoy them are not healthy for me.  It really breaks a large part of my heart.  It makes me cry, often…ok all the time.  I have true love for these people but they cause me pain, with little or no regard for me (especially knowing how sick I am.) I feel like I have no other choice.  They know how sick I am and that this is not a short journey I’m on.  May be they can’t handle that.  May be their just assholes (although I really don’t believe that.) I just wished for honesty, trust and respect and since I’m not getting that and I can’t hold onto something that’s not being reciprocated, I have to let go, wish them the best and hope for the best for me.

I told my mom a couple of days ago (I was having a lot of brain and speech issues) that I thought my body was ready to start dosing.  I think it can feel things starting to get out of control.  I despise dosing and no matter how mentally prepared I think I am for it, something is always new or different or unexpected.  But for the 1st time I AM READY! Monday can’t come soon enough! I know I will pretty much be bedridden and helpless for 3-7 days but may be that’s exactly what I need and my body needs.  I have put my brain and body to the ultimate test and despite all its been through it still keeps going and fighting with me.  I have learned that my soul, body and mind are one.  I feel the connections for the first time in my life.  Together we will beat this.  We will win the Babesia and Bartonella war and we will beat Lyme into remission! We are one and unstoppable!

I want to address a meme that’s been going around on social media, comparing various diseases to cancer.  We compare things to what we know. Unfortunately, pretty much everyone knows someone (or has had cancer.) I know my battle and my journey.  I don’t know cancer and hopefully I never will.  I think cancer has become the disease in which everything is compared.  But I ask you this…next time you see someone who is sick (or you know is sick) don’t judge them! You don’t know there disease and what they’ve been through! You didn’t go through it with them.  Everyone, sick or not, has their own journey.  Don’t judge or compare it to yours because you have no idea what its taken them to get where they are and what they’ve been through.

Let me leave you with these few quotes:

“And if I could tell you one thing, it would be, you are never as broken as you think you are. Sure you have a couple of scars and a couple of bad memories, but then again…all great heroes do.”

“Do what you feel in your heart to be right – for you’ll be criticized anyway.” Eleanor Roosevelt

“I learned the hard way that I cannot always count on others to to respect my feelings, even if I respect theirs.  Being a good person doesn’t guarantee that others will be good people too. You only have control over yourself and how you choose to be as a person.  As for others, you can only choose to accept them or walk away.”

“Life is short, don’t waste time worrying about what other people think of you.  You need to know how to be alone and not be defined by another person.” Oscar Wilde

And my new personal favorite…

“I was born to be stubborn, to be a little bit bitchy, to push people, to push myself. I was taught to never take life for granted, to live a little, to love with everything I had, to never give up, to believe in myself, but most of all, to fight for myself.”

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Babesia – Its Back

Babesia – Its Back.

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Babesia – Its Back

Its late for me to be writing.  I am swimming in the thoughts that have been brewing all day.  Even though my brain is ALWAYS worse at night than first thing in the morning, I’m getting it out (my iPad and iPhone are taking forever and my OCD says that I can’t go to sleep until they are done.)

I was pretty upset after my last consultation with my doctor.  Finding out that my Babesia has resurfaced and that I was in many ways, regressing was a real blow for me.  I had it in my mind that I was going to be in remission by September (October at the very latest.) Finding out that I was going back to the hardest protocol of my treatment was a kick in the teeth (even if it wasn’t through a PowerLine/PICC line in my chest.) I spent last summer being sicker than I ever had and it looked like this summer wouldn’t be much different (there’s definitely a lot less crap to kill off.)  But I pulled the old Scarlett O’Hara “I’ll think about it another day.” For the past 2 weeks I’ve tried to keep that mentality as much as possible.  I was able to make it down to my Dad’s house (had the best visit I’ve probably ever had!) I took some time to do what I love…garden (with all protective equipment in place-long pants, high socks, light colored clothing, scarf to cover my head, DEET, etc.) and promptly washed all clothing in HOT water when I was done.  I did more physical activity than I have in so long, that I can’t remember.  I went to the zoo with my mom, my Aunt Linda and my cousin Kim.  I was sore as hell that next day, in fact it took me about 3 days to recover from the zoo and my dad’s, but I did it! I even managed to go to New York City! I went with 2 friends who despite all my “annoyances” from being the sick girl, handled me very well. (I will admit my brain was severely off in NYC, I was having a lot more trouble with word retrieval and memory and completing thoughts) I think they may have only wanted to strangle me a handful of times.  We got back last night (and I got 2 of my tattoos touched up in Staten Island on the way home at Bullseye Tattoos.) My body was done by the time we got home. (p.s. My official Halestorm Fan Club stuff arrived and I was uber excited!!!!)

I did take all my meds (daily and as needed for pain.) But I wasn’t so great at making sure I was resting enough or sleeping as much as I needed too.  That coupled with standing and walking and excitement…I crashed last night.

Today is my 1st day back at dosing.  It was the first time, in a long time, that I actually just sat in bed and cried in pain.  I also blacked out/passed out at one point in time and for most of the day, both of my legs kept giving out on me (one or the other or both.)  So along with feeling absolutely horrible from dosing, everything that I would think about another day, decided to set up camp.

I think I’ve done well at being positive (as I can be) through treatment and trying to look on the bright side. (Its probably why I get so irritated when people tell me to “cheer up” or “it could be worse.” Yes I know things can always be worse, I don’t need it reiterated.) Yes, I have my dark moments, suicidal, lost, wanting to quit. But I keep on fighting not just because I have to, but because I want to.  I have never looked at myself as old, an old soul maybe but never old.  All I have ever wanted in my life was to be married and have children.  I’ll be 32 soon and I thought I’d be done having children by now.  I know God has his plan for me and all of this is for some reason.  But with the delay in getting to remission and maintenance meds, its hitting me like a ton of bricks.  We went to NYC and one of my friends kept telling me to keep my ovaries quiet.  It doesn’t help that everyone I know is having babies.  I celebrate for most of them (except the dumb asses who should NOT be procreating, at least at this point in their lives if ever.) I know that sounds harsh but some people have no parental instincts and you know the ones I’m talking about.  Yes, they love their children but they will never discipline their children or they’ll be the obnoxious little brats that everyone gets away from as fast as possible.

Anyway…back off my tangent.  Its been tough for me to handle. I’m really not well enough to be dating, let alone having a child.  I could be irresponsible and just go get “knocked up” and not care about infecting my child or anyone else in the process.  But that’s just not me. I want to fall in love.  I want to have child conceived in love.  I want to be married.  But even with all that being said, I want my “family” to be as healthy as possible.  Just because I am sick (and there is a high likelihood of my “family” being infected in this area anyway) I do NOT want my family to be sick.  I want to give my child the best chance at being healthy.  I don’t want to transmit my disease via sex with a partner or through the umbilical cord.  I am as holistic as I can be.  I eat incredibly healthy.  I want the best for my child(ren) and give them the best footing to launch from in their lives.  Having a child, for me, is not just “what I’m supposed to do” its something I WANT TO DO. Yes, I know people are having babies later and later in life, but for me its just a reminder of what this disease has taken from me.  Maybe things would have worked out with that ex, if I wasn’t sick.  Who knows?! I can “what if” and “maybe” things to death (I have an extremely over-analytical mind.) Believe it or not, as much as I hear my ovaries screaming at me and my biological clock ticking, I’m extremely lucky to not to have to take care of my children during the worst part of treatment (including now.) I know that I will have flare ups throughout the rest of my life and there will be no ability (even if I wanted to) to hide my diseases from my children.  Every family has issues, there is no such thing as normal, I’m extremely blessed that even though I have a chronic disease, that its not worse, that I will have periods of remission.  I might not be able to just have a normal pregnancy, I’ll have to be on a specific protocol while I am pregnant, I can still get pregnant with almost a zero transmission rate to my baby.

While baby thoughts have been flooding my brain. I think of the children that have suffered and it makes me want to break down in tears (they’re welling up in my eyes now.) I want the government to address and fix a disease that they unleashed upon the American people and then refuse to give us adequate treatment.

I am grateful for this disease as an overall whole.  Its been hell but its made me a better person and has taught me to continue to evolve and strive to be better not just physically but, emotionally, spiritually and a better human being. I’m learning to define and enforce my boundaries.  Sometimes I feel like a terrible grandchild for not seeing/calling my Grandmother more.  I love her so much and I want to be able to share that with her.  Sadly, she has some age related brain issues and I never know what side I’m going to get. I love her any way she is.  I know that the day may come sooner rather than later that she may not remember me, so time is precious.  But sometimes I just can’t handle her.  Even though it eats me up inside with guilt, I need to take care of me and I know that’s what she would want for me. So I call when I can handle whatever she has in store for me and if it gets to a point where its damaging to me (I finally understand teenage angst) I simply and politely end the conversation/visit.  Its hard.  But if I sacrifice my well being for hers, then I can’t be there as often because the stress makes me sick for days.  I’m working on striking balances and with the help of a counselor, I’m finally sticking to boundaries. I’m trying to remember that its quality NOT quantity that matters.

I hate saying I’m sick (with the exception of “Sick Individual” because of the Halestorm song.) I hate living on last minute plans, but I have to live on them because I never know how I’ll feel until that time comes.  I hate all the side effects. I hate everyone looking at you different when they find out or feeling so left out or tossed aside or having to educate everyone about my disease and “How are you feeling?” (“Like shit just like the last time you asked me.”) I do try to use phrases like “Today isn’t one of my better days.” “I’m better than yesterday/last week/etc.” “I’m sore, but having a good mental day.” I keep it as nondescript as possible because no one is ever going to understand it until they have been through it. I find that doing it that way usually doesn’t make people as awkward to come up with a statement/question AND it keeps me from having to answer tons of tons of questions.  I like the comparison of famous people.  When you’re famous, in this day and time, you accept that your public life is open forum (although I don’t personally think its fair to be judged on your every move just because you are using your talent.) I feel like because I have put information, my journey, out there for public knowledge of my own experiences and therefore whether I always like it or not, people have a right to ask me about my life (my health HAS effected every aspect of my life.) I am the loudmouth who is impatiently waiting for the day she is well enough to advocate. I can’t shy away in a corner or down play what I actually go through, because someone, somewhere out there is going through treatment and wondering if they are alone in all of this or if they’re crazy.  I do feel its my responsibility to talk about this because I don’t want ANYONE (whether I love you, hate you or never met you) to have to go through this! All it takes is one person to start talking.  And then you find out some one else is talking too! And its all those lone voices, that will stand strong and firm and make a change.

If you’re reading this and are suffering too (or know someone who is,) know that someone is praying for you in many ways.

Also, please say a prayer for my friend Davy.  He was just diagnosed with a major health issue.  He still has to find out the plan, but he’s fighting too, just like us.  He is actually a true gentleman.  One of the nicest guys, I’ve had the pleasure of meeting.

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Sick Individual

I should be dead.  I SHOULD BE DEAD! But I’m still hear and still kicking and screaming and fighting with every single thing I have!

I know in previous blogs I’ve expressed my affinity for the band Halestorm and I’ve quoted Lzzy Hale on more than a few occasions. I’ve failed to go into the importance of their music and music, in general. Without both, I know for certain, I would have given up my fight a long time ago.

It was April 3rd, 2014…The day I got my diagnosis that took me well over a decade to get.  Lyme Borreliosis Complex and Bartonella (with suspected Babesia – later confirmed with the addition of extremely high Mycoplasma levels.) I was told that without medical intervention that I would be DEAD in a 10-12 month time period.

The worst part is that I was so thrilled to know what was finally wrong with me that I didn’t even acknowledge the fact that I was that sick and that close to dying! It was my doctor and my mom who seemed more concerned with that.  But it set in later.  And its been on my mind a lot lately.  I feel like I’m living past my expiration date and it feels fucking fantastic!

I have been to Hell and back so many times, I think I’ve earned dual residency there.  Its been an insane roller coaster in every way.  I’ve been tested and pushed beyond my limits. I’ve been suicidal.  I’ve been near death. I’ve gained my faith in God and found my spirituality.  I’ve gained the ability to love and to be loved.  I’ve lost most of the bitterness and coldness.

Without my mom, I could have never done this! She took care of me and shouldered most of the financial burden. She was every thing that I could ask for and then some.  She earned her wings – some of what I put her through mentally I wouldn’t wish on my worst enemy!  Thank you to all those who donated any money or time or well wishes.  It all helped!!

But there’s been a secret to my recovery that I haven’t talked about much – its the music!

Everyone needs something to get them through treatment.  You HAVE to want to live and you HAVE to have something to live for! We all need hope and what gives that to us will come in all shapes and forms.  I had my mom and my family and friends and the hopes of  marriage and babies and love! But when you’re down there in the trenches and you have that moment of “aloneness”, you NEED something.  Compare it to the men and woman in the armed forces being in combat – they might carry a picture of a loved one, or a scripture, or a lucky item-anything! Fighting for your heath is similiar, in that “moment” we need the same thing.  For me, it was and still remains, MUSIC.

Over the last several months (well really since my mom went back to work in September) I’ve had so much alone time.  Everyone thinks “wow that would be so great!” Well its not.  Its not great to STILL be fighting for your retirement.  Its not great to be sick.  Its not great when you can’t drive, when you can’t walk up/down a flight of stairs, when you can’t even get out of bed. NONE of it is great except for the fact that I don’t have to work through treatment, that’s something I can’t even begin to imagine!

With all the “aloneness” that I have, MUSIC has been my saving grace! When I sat with a loaded gun in my hand and came up with ways to kill myself (after I gave my gun to a friend to hold onto for safe keeping), when I was right on the edge of breaking and no one was around, I could hear lyrics. I think my guardian angel knew how to reach me.

I can remember one day when I was breaking and I called my mom.  She couldn’t be here at the very moment I needed her.  She told me to pray The Rosary.  I did because I promised her I would.  I could feel it start to calm me as I prayed.  About 1/2 the way through The Rosary, I wanted my music.  Being the Virgo that I am, I couldn’t NOT finish what I had started.  I don’t think I have ever prayed that hard and fast in my life. As soon as I was done, on went the music and I came back to planet Earth and back to the fight I charged.

There were days where I would just put my ear buds in turn up as loud as it would go. “She turns up the music to drown out here life.” I have a very eclectic taste in music.  I would go from Halestorm to Bach to Tool to Nelly to Tim McGraw (ok, you get the point.) But mostly over the course of the last year, its been Halestorm (and anything with Lzzy Hale) with a little Ed Sheeran and a lot of Five Finger Death Punch. There were days that all I did was listen to music (those are the days that went by the fastest for me.)

I used to be musically inclined but my fear of failing at if forced me to quit before I ever really got off the ground with it. I sing ALL…THE…TIME! I think that’s some cruel joke, because even though I know I can’t sing, everyone around mes get the joy of hearing me.  If I can’t find the words (especially with all my brain damage and healing) bet your ass I will find a song! I gave everyone in my family songs for Christmas.  Some had songs that I knew they’d enjoy, but most had songs that I thought they’d enjoy AND they had some kind of meaning to me.  If I listen to them, I can say “well this is how I secretly feel but couldn’t say” or I could tell you the story about why that song means something to me or “every time I hear this song it makes me think of you” etc. I saved copies on my playlists.  Since then I’ll play them and think to myself “I wonder if “we’re” listening to this at the same time” or “I wonder if they like it” or “I wonder how it makes them feel.”

I’ve talked about my darker moments. How when no one or nothing else could reach me, music did.  It was like a golden hand, illuminating the darkness. I think the right song can do wonders for your soul.  It can change your mood.  It can be an expression of yourself.  I have music for every new emotion I’m learning and experiencing.  Music is my tool in learning my emotions and how to handle them.

THIS IS A TRUE STORY!  A couple weeks ago, I was going through a very rough period mentally and emotionally.  I was very down and despondent. It was not a good time for me at all.  I woke up one morning and I had this song stuck in my head that I didn’t know.  I remembered hearing it my dream.  I rolled over to look at the clock (my phone) and saw that Halestorm had released a new song off their album that I pre-ordered and that it had been downloaded.  I immediately went in and listened to the song and sang along with it-first time hearing it. It was the song from my dream! No kidding! I called my mom because I was so freaking amazed.  The song is called “I am the fire” and its become my personal anthem.  Divine intervention!

Halestorm’s new album – A-MAZ-ING! Sometime I swear Lzzy Hale is inside my head.  Halestorm had been releasing new songs on iTunes (pre-orders) and each song was just what I needed at the moment.  I highly recommend this album – especially to my fellow Lymies (must check out “Sick Individual” / “I Am the Fire” / “The Reckoning” / “Unapologetic”/ “Amen”)

The following is from “Sick Individual”:

 “Well you think that you know what I am, but you don’t / Cuz I say what you can’t and I do what you won’t/ I like I loud, wear it proud, like a crown upon my head / I’ll always be this way till the day that I’m dead…Cuz I’m a sick individual and I’m doing this thing called whatever the fuck I wa wa want / I’m unusual, ain’t taking no shit!/ Gonna drink this sip sip till its gone gone gone / I’m living it up NOT giving a what / I’m living it up not giving a what / Sick individual and I’m doing this thing called whatever the fuck I want!”

Living again. Getting your second shot at life. Living past your expiration date. Going through treatment. These things readjust your perspectives.  They make you better.  They make you a better person.  You’ve learned how to fight and survive and face your fears and so you get to live life in a way that few can.  You’ll still hear “well you didn’t have it that bad, especially compared to “such and such” disease.” Truth is unless you’ve been through both you’ll never know.  Just like no one will ever know your full story.  I speak for what I’ve been through.  I know what its like to feel like you’re dying, to want to die; to be sick for years on end and suffer misdiagnosis after misdiagnosis; to be judge without mercy; to have had so many complications…I speak about my own journey.  Unfortunately, because tick borne diseases are not talked about and so often misdiagnosed and is the “HIV/AIDS” of today, most people are not going to understand.

This is why we fight! For education! For health insurance to cover to cover our treatment! TO SAVE OTHERS!

So find whatever it is you NEED to survive! For me its the music! For you…the possibilities are endless…

One of my biggest dreams (after the above mentioned, being a wife and mother) is to meet the band Halestorm and personally thank them for all that they don’t know they’ve done for me.  The music saved me! I have a quote from Lzzy Hale on my bedroom door that I read every single day! I’m doing everything I know how to do to make this dream a reality (within my financial means.) I am asking a favor…if anyone has any suggestions or can help me with this dream, I would be eternally grateful! Lzzy, Arejay, Josh, Joe – keep rockin out and keep putting out music!

 

 

Posted in Antibiotics, Babesia, Babesiosis, bartonella, chronic pain, fighting back, getting better, growing stronger, Halestorm, healing, helping yourself, hope, I will get better!, illness, Lyme, lyme disease, lzzyhale, Medical, sick individual, spiritual, suicidal thoughts, TBD, TBDs, Team Lymestorm, tickborne, tickborne diseases, Treatment, Uncategorized | Tagged , | Leave a comment

Rollercoaster of Emotions

I have been avoiding blogging for as long as possible.  I considered never blogging again. But my journey is not over.  I still have so far to go and so much to say to help others.  Prolonging sharing will only make it more difficult for me, so here it goes…

Instability.  Balanced.  High. Low.  Hopeful.  Disappointed.  Up. Down.  There have been almost no plateaus.  Its been a constant rollercoaster of emotions and events in the last 2 months.  My mind has been a chaotic mess. I feel lost.  I feel raw, exposed, vulnerable, emotional; these are all new and uncharted territories for me.  Its like every nerve in my body is exposed and anything can trigger pain and/or emotions.

My second round of dosing was extremely tough on me.  After transitioning to oral antibiotics in January, I got a false sense of relief and when I went back to dosing again, I was in no way mentally prepared for it.  By the second week of dosing, my body had joined forces with my mind in that they both were protesting against me, begging for me to quit.  It took me longer to recover from dosing than usual.  I got a long break afterwards because I had to wait to get into the doctor on a day that they could see me and then get me an appointment to have my central line taken out.  It ended up that my line had to be taken out early (mid February) because it was possibly infected.  I was so glad to have it out.  I have just a very small scar that I will wear proudly as badge of honor.  (Let me tell you how excited I was to take A REAL SHOWER! Not just bathing, but an actual shower! I stayed in there and just let the water beat on me until the hot water ran out.  It was spectacular!)

Going back to the doctor 2 weeks ago, I found out that my gallbladder may have to come out. Let me explain this because if you end up in the situation I’m in you might need to know this because I haven’t yet found a surgeon who is Lyme literate and is willing to listen to the reasoning behind my possible gallbladder removal.  According to my doctor (and what research I’ve done on the internet) Lyme is often know to form a “pocket of infection” inside your gallbladder.  It can cause too much or too little bile (which is produced in the liver but stored in you gallbladder which releases it into your system to aid in food digestion) to be released.  I was sent for a HIDA scan.  It ruled out any acute (or immediate) problems but showed that after I consumed a fatty substance (given during the test) that my gallbladder is releasing 83% of the bile in my gallbladder (normal is around 35%.) This is called an ejection fracture.  I have had 2 solid bowel movements since June of last year.  My doctor believes that the over releasing of bile may be a reason for my bowel problems.  I, personally have not ruled out the possibility of C-Difficile.  I had a major bout with it 2 years ago (once you’ve had it once your chances of having it again go way up) and with antibiotics being a known cause of C-Diff, it is a possibility. It could also be the 2 together causing the problem. Now I’m in the process of trying to find a local surgeon and a local gastroenterologist to work WITH me to figure out what is going on.  Keep in mind I’m dosing again now. Even though I was more mentally prepared this time, it’s still been difficult both mentally and physically.

I’m going to attempt to explain what is going on inside my brain, something I’ve tried to explain to my “friends” but only a select few seem to get.  Right now my brain is healing.  Because there was SO much damage done from all of my diseases, what normally takes a long time is taking much longer in me. Physically I’ve made great strides already, but the brain is always slower to heal.  I’ve talked about my left brain connecting to my right brain and being emotional before but that was just the BIG stuff, stuff I could process logically.  I’ve moved more into the “finer” details of emotions. Before treatment all I knew was anger and I knew it well.  I had my walls built up and knew how to defend myself and now I’m just a child (metaphorically speaking) experiencing everything for the first time and not knowing how to protect its self.  I have mood swings.  I over or under react. I still search for words often.  Texting is hard because I cannot convey what I actually mean.  Face to face conversations are best for me because it easier for people to “see” how “sick” I am, to read my facial expressions, to ask for clarification and for me to read other people to make sure they actually understand me.  Just because I put on make up and get dressed or do my hair, these are “chores” for me.  So when people can see me and see how I struggle they tend to understand a bit more how difficult life is.  They can see how easily I cry or get upset or happy.  Face to face helps me tremendously and it helps others understand better, to see my struggle. It also helps me in acclimating back into society, being around people again, when I’ve been so isolated for so long.

Yes, I still have the intelligence of an adult but I am fragile.  Lightweight and breakable with just the slightest bit of a wrong touch.  I need to be treated as such.  Those needs are not being met by most of the people who are left in my life and in the last week some of those I considered to be closest to me, smashed me on the floor and left me.  I have been through a lot in my life, I have survived, just as I will this.  Only this time, I will be stronger because I am continuing to learn about the toxic people and how they show their true colors. I’m walking away and not trying to mend fences I once would have. I have set my boundaries and I’m sticking to them.  In all of this, there are 2 things that remain constant – changing and learning.

Yet another reason I have not blogged is because I knew I could not write a post without including one of the hardest moments of my life – losing my precious Carter.   He was more than any dog I’ve ever had, he was truly a child to me, a partner, a companion, a teacher and the one thing I could always count on.  I thought I’d be an absolute basket case but I’ve handled it much better than I thought.  I knew it was his time to go and he was ready too.  I stayed with him till the very end.  Yes, I cried and I still have my moments – its to be expected – but in the moment I felt such peace in my soul because I knew that he was free of the body that contained his soul and he could now move on to be with my brother and to be without limitations.

With those closest to me knowing what he was to me, the bond that we had, my closest  “friends” (with 2 exceptions) never bothered to check up on me after the day he passed.  They didn’t bother to ask how I was doing. (Keep in mind I started dosing 3 days after and had a sinus infection on top of all that.)

What is my point in this? It’s not to call anyone out.  It’s to let people in treatment know that you will lose some of the people you hold dearest, they will become toxic for you or they will get “tired” of you being sick or that they will constantly doubt you.  What you need to know is that it doesn’t make them bad people (all of them anyway.) Some are weak or jealous or self involved or will never understand.  It doesn’t mean that you have to cut them completely, you just need to keep your distance until you are better equipped to deal with them.  Being sick will change the dynamic of your relationships. I was always the fixer and I was always everyone’s personal counselor or cheerleader.  But when I need it I have only a select few that have stood by me through it all, through being sick and the mood swings and the soul-searching and all of the rest of it. What I’m learning is that its okay.  I’m evolving and so are my relationships.  My priorities are completely different from they were and different from most “normal people.”  Even sick, even confined to bed, my heart is more alive than it has ever been.  I might be on an emotional rollercoaster but my morals and principles and soul and heart are still strong.  I am still basically who I was, the person I hid from the world, but now I’m free to be that person all the time.  I have no time for negative bullshit and drama and jealousy and intentional hurt.  I am granting myself permission to walk away when I need to.  I have begun working with a therapist again. I am praying and meditating. I am learning to “be” in silence and in all the “noise.” I am learning to accept my limitations but not be discouraged by them.  I recently read “The Spoon Theory” (I’ll attach the link below) and am learning to use my “spoons” wisely.

I want to send out a special thanks to 2 of my dearest friends.  Amber, I love you beyond words! You get me, even as messed up as I can be! Thank you for you continued love and support, especially over the last couple weeks/months.  Stacy, our talk was so incredibly uplifting for me! I enjoyed every minute with you. It was so wonderful to see you again.  You’re the friend who I have that I know loves me without a word spoken from either one of us! I love you more than words can describe! Also I love both of your “boys.” They melted my heart!

 

This is the link to The Spoon Theory.  It is a great article for those with a chronic illness and those who know and/or love someone with a chronic illness

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Posted in Babesia, Babesiosis, bartonella, chronic illness, disappointed, emotional, fighting back, friends, getting better, growing stronger, healing, hope, I will get better!, Lyme, lyme disease, poisonpeople, sick, spiritual, spoon theory, spoons, TBD, TBDs, the spoon theory, tickborne, tickborne diseases, ticks, Uncategorized | Tagged | 1 Comment

Pretending

Pretending.

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