Where I Am Now

Its just under one month shy of when my world completely changed. January 2014 was a time I will never forget.  I had gotten the flu, my great aunt was in the hospital dying, I was still misdiagnosed with multiple sclerosis (injecting myself daily) and I had never been more sick in my life.  Little did I know things would only get worse.

I left work on January 2nd, 2014 to rush to my great aunt’s side, she died the following morning.  I had taken off of work for a week to deal with funeral planning and the funeral itself with some time to grieve.  She had been like a grandmother to me.  She was also the last of 12 children, the end of an era.  Following the funeral, I began to crash hard.

When I left work on the 2nd, I had every expectation of returning to work, doing a job I very much loved.  I went out of work on the Family Medical Leave Act (FMLA) because my own health had declined so much and so rapidly.  I was dying but I didn’t know it.

So began my fight against time, I had 12 weeks to figure out what was wrong with me and to fix it.  Doctor after doctor.  Diagnosis after diagnosis.  I was running out of time both at work and in life. 

Forward to March of 2014, I found a provider who believed I had Lyme (which I thought I’d had for years) and co infections (which I never heard of.) A month later the answer to my prayers came with a confirmed Lyme diagnosis with 3 co infections (Babesia, Bartonella and Mycoplasma.) With no medical intervention I would have been dead in 10-12 months. 

Since then its been a long, hard and windy road.  I have fought the best I know how to,  by perseverance.  This morning a very close friend told me that I was her hero.  I was completely shocked, amazed and humbled by those words.  And so here I sit reflecting on the last nearly 3 years.  I am a completely different person than I was the day I walked out of work for the last time.  Life changes in a moment.  We never know when our last goodbye will come.  We never know when we will be forever changed and we often never know when we will change someone else’s life. 

My diseases have taken so much from me…family, friends, the ability to work, the ability to take care of myself (for a long time.) I could go on and on about what I have lost and what I miss about my “old” life but I choose to see what this disease has given me and allowed me to become which is worth so much more than I have lost.  I have forged friendships that are unbreakable.  I have gotten back so much of the humanity that I had lost.  I’ve learned to be humble and kind and caring.  This year I think I’ve said “Merry Christmas” to more people than I have in the last 5 years combined.  I want to be the light in this dark world.  I want to shine. 

  Hero is a strong word and even though I still can’t let myself say it about myself, I feel honored to have impacted someone’s life so much.  That was my mission from day one when I started writing…I wanted to help someone, inspire someone, change someone for the good and today I feel as though that finally happened.

Three years have changed me and changed my life completely.  I feel more connected to the world around me, more at peace than I ever have, more comfortable in who I am as a person.  I’m less jaded, softer, kinder, more tolerant (though I still struggle with patience.)

Its been a long three years with more ups and downs than I could have ever anticipated.  Treatment was only supposed to be 18 months but the set backs I’ve had have caused treatment to only continue.  But I think I can finally see some light at the end of tunnel.  Dosing remains difficult for me at time but my highs are higher than they have been in years, the lows not nearly as low as they once were.  I continue to fight and even when I am considered to be in “remission” I know this is a battle I will continue to fight for the rest of my life.  I try not to think about the forever part of it because its overwhelming.  I live one day at at time.  I measure that day on how I feel.  Some days are still captured by the disease, days where I am stuck in bed and feel useless.  But I have days where I feel like I am fairly “normal” again.  Its all about the spoons.  Some days I have more spoons than others.  I’m still pretty bad with borrowing spoons from one day to get through the current day to do the things I want to do.  Some times it leaves me near crippled but I just try to smile through it all.  I want to be the light and not the darkness anymore and the only way I can figure to do that is to smile as much as I can.  Please don’t misunderstand, there are still days where I lay in bed with the blankets pulled up over my head just counting the minutes as they pass, when I’m too sick to do anything and I let the feeling wash over me, I bathe in it and then when I am able to I pick myself back up and move on.  I’ve learned to let go of the resentments and what ifs and the poor pity mes (with rare exception.) Its the only choice I have in all this, my attitude as to how I handle this. 

I’ve talked to a few people over the last couple of days and told them the “hero” story.  My mom put it best, I think.  She told me that if she was in the same situation she would have gotten through it because she had to but she knows she wouldn’t have handled it as well as I have, reaching out to people, having a positive outlook and not only surviving but conquering.  Hearing my mom say that was a real eye opener to me.  Not just as a compliment but as a testament to how much I’ve changed.  I know the “old” me wouldn’t have been as positive. 

Everything happens for a reason (or so they say.) I think I was meant to have my diseases to understand people and myself better.  I think that it was God’s way of teaching me a lesson, albeit it very hard way.  All I can do now it hope that I’ve learned the right lesson, that I’ve made my God proud and that I make those around me proud and to give a little light to the rest of the world.

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Psych Ward : Part 2

I’ve made a very difficult decision today.  I am going to post my “journal” from my time in the psych ward last year when my ammonia levels where exuberantly high.  No one had ever seen them before today when I shared them with my boyfriend who agreed that I needed to post them.  Some are  phrases or snip its. Others are full thoughts.  I am publishing them so that if someone is struggling or has been down the same path can find something to relate to or something that will resonate with them.  I am publishing them completely unfiltered.  They are as follows:

 

June/July 2015:

“Its just like jail – stainless frigid toilets / in a room / single wide bed, white worn sheets, cream colored walls stained and marked from bad tempers / I eat for the first time all day/ 1 mg of Ativan / Turkey sandwich with Hellman’s mayo / Doctored the way I used to make it for Matt / staff is pleasant / trying to stay calm / Pranyama breathing in Shabasanah / some water / cameras are necessary but make me feel self consciousAnd freak me out / sky blue shirt and pants big enough for two of me/ brought Halestorm lyrics – I AM THE FIRE! ( and the chorus to “Amen”) / must survive somehow/ no plan scares me / I need black and white / No charcoal /  blood shot eyes / Haven’t slept all day and bad nights sleep/ THEY TOOK MY BOBBY PINS – SERIOUSLY! / I’m not crazy / Telling the truth gets you nowhere / People mistake my meaning / Need to eat my Oven Baked Lays before counselor who decides my fate comes in / How do I do yoga and/or meditate while being “monitored” / Dear fellow Lymies this is horrible – I hope you never end up where I am / just notice – plum all behind me / I’m so tired/ thank God they gave me paper to write on and a penice to write with after they took my pen / I put Carl here – is this payback? / Oh well he’s dead – stupid addict / Chair in the corner – grey back and seat on black poles with same grey rubber feet / Is that AC or a speaker with white noise? / Floors seem dirty/ Dart tan with streaks / This whole place feels like filth surrrounding me except for the blinding white light overhead / That son of a bitch keeps me awake / How can it be beneficial to leave someone in my condition alone with their thoughts /

I was a dispatcher for 13 years and in public safett for 16 years. Do they think if I was serious I would tell anyone? Do they think I don’t know a 1000 ways to kill yourself even in THIS room? / Come on! / I’m a smart girl / Yes I think about suicide and even dream of it but its not a viable option! I love my mom and grandma too much! / I might be a horrible non practicing Roman Catholic BUT I still believe for me suicide is a mortal sin – my one way ticket to HELL / I believe in planes of existence but that is one plane I do NOT want to be on / waste of time, resources and space / I can hear crazy outside the door and just down the hall / My back hurts so bad / NO RELIEF EVER / Thoughts are racing / Violation / No matter what boundaries I set and enforce, I keep getting violated / Its a pattern I  can’t breaks/ Going to try to sleep  / Hope the white light’s screaming I can learn to drown out…

I am NOT a pysch patient. I am a sick individual with Lyme, Bartonella and Babesia that is messing with my brain.  I just need a little help to get back on track. This is complete and total bullshit! I’m wasting a bed on someone who really needs it.  Mom is not going to work tomorrow to be available for me.  I told her if she hasn’t heard from me by noon tomorrow to call down and get me out.  I told her to bring Amber and bust me out of here. The longer I’m alone with my thoughts and without intervention or distraction, the worse it is going to get.  I love the movie “Girl Interrupted” but I am not Winona Ryder or an of the girls in that movie! I don’t want to be Jack Nickolson in “One Flew Over the Cuckoo’s Nest” (another one of my faves.) I don’t want to make friends with the crazies and them be smothered to death.

The rise and fall of Jessica L*****.  Look at how much I had accomplished and how far I’ve fallen. But I AM THE FIRE! I AM A PHOENIX! I’m going to rise from the ashes of this and burn brighter than ever before.  I am going to be the me I was destined to be.  This fight is NOT over.  I might now be able to see the light at the end of tunnel just yet and I need to help out of this pit that’s trying to devour me, but some day my story will change others.  I’m gonna fight for health “CARE” not just management.  I want someone to say “because of you I didn’t quit!” I want my life to mean something. So while the next room speaks ebonics, I am learning.  I am learning a lesson to add to my collection, one I will learn and grow from.  I am miserable and alone and still trying to distract myself by writing and dying for a cigarette and wanting to scream “SHUT THE FUCK UP!” I’m hanging in, surviving, fighting. Now if they would give me my night meds so I could sleep.

Nurse just came back finally.  I’m going upstairs and they will give me my meds.  Should be in the next 2 hours.  Two fucking hours!!!! I’m mentally, physically and emotionally exhausted and I still have another eval to go through before sleep and meds.  Of courseI have no idea how long two hours actually is because I have no watch, no clock, no way to tell time at all.  I can see how sane people lose it in psych wards and jails.  I feel like my basic human rights are being violated. Worse yet, for doing the right thing, admitting I need help and being truthful.  No wonder this country is falling apart.  We punish the good and reward the bad.

Crazy Carol and George should be here, not me.  But they just refuse to see their problems AND get to fuck up 2 innocent little girls.  This world is really fucked up!

It was 250 am when I finally made it to the unit.  Sarah was the charge nurse who took  care of getting me into my room and set up.  I knew I knew her – Fire Week ’01 with Jamie.  Her and her twin sister went (can tampons get lost in you? when do goldfish breathe?) Yup that’s them. I did get some meds (no mobic, metoprolol or Xrelto.)

The ward was quiet and cold.  When I got to my room I knew I had a roommate but didn’t see her (Cierra) till this morning. I slept terrible.  Between my night/normal meds, broken sleep, and just being here, I am so exhausted.

They woke us up at 6 am for more bloodwork. Went back to sleep.  Woken for breakfast.  Terrible.  Had a small turkey? patty for protien and tried to eat a cheese omelet (awful!) but couldn’t even finish 1/4 of it.  So I stuck with it and chocked down a banana, with sips of ginger ale. Breakfast gave me an idea of what I’m dealing with in here.  My roommate is the only one younger than I am – she’s 24, pregnant (6 weeks and considering and abortion) and has a 4 year old at home.  Sweet girl and sweet heart but lack of proper education and product of her surroundings.  Not judging, just stating.

I skipped group.  Anxiety is too high and I’m too tired.  Staff couldn’t find my clothes, even made me sift through the washer to check there.  Finally found.

I don’t like that they have men and women interacting together.  Another reason I skipped group.  It makes me uncomfortable.

This is like some great film about crazy except I’m in it and its caught up with the times.  I WANT TO GO HOME! This has not been helpful thus far and waste of time. Its putting more stress on me than I can handle.

Just got a note to call Mom.  Can’t do so until after group is over.  She has to get me out.  Not getting meds for pain even though I was seen by medical already this morning.  This is messing with my body and my head.  Waiting to see psych and therapist.  I’m so afraid of getting sick physically.

I was right – bad idea! ALWAYS go with your gut Jessica! ALWAYS!

Still tired.  Going to lay down before psych comes.  Supposed to be before 11.  I have no idea what time it is but guessing sometime around 10.

 

As you can tell, the ammonia levels were doing a number on my brain. I was discharged around noon the day after I was admitted. It was an extremely traumatic experience for me and it took me over a year to be ready to share with the world.  I hope my experience helps someone else.

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Shakes and Emotions

I finished dosing Friday and it took me longer to recover than usual. I missed most of a beautiful weekend because my body would not cooperate.  My fatigue was dictating my life again.  I wanted to stay awake and take in some sunshine and enjoy the nice weather.  Today, I am finally awake and my body is screaming at me.  There’s been a major change in the barometric pressure, a gloomy day with rain in the forecast.  I didn’t have to check the forecast though to know rain is coming, my entire spine burns and aches and is sending shooting pains randomly up and down.  It’s all a part of my disease. 

My shaking is getting worse.  I pretty much shake or tremor at all times now. I can usually get some reprieve when I lay down, but I don’t want to spend my life in bed or on the couch.   The shaking started back in February and despite medicines to help control it (actually to make it stop) it continues.  The meds have helped the violent shaking mostly and now it is almost continuous tremors.  It makes life so hard (as if it wasn’t hard enough with all my “side effects” from treatment and the diseases themselves.) I’ve begun to wonder if this is permanent damage done to my nerves by the diseases and treatment and if this is the way things will always be. I try to stay positive and believe that with further treatment and eradication of at least my co-infections the shaking and tremors will stop.  Its like being stuck in a continuous herx.  

But life goes on.  I’m sitting here now and my legs are wiggling like they have worms in them.  If I focus hard enough I can get them to tone down to a minor tremor but they never stop and I can only hold them down so long (which isn’t very long at all.)  It makes even the smallest of tasks unbelievably difficult. Driving is a nightmare.  I can only drive when the shaking is minimal and hope that while I’m out things don’t go from bad to worse.  Thank the good Lord for cruise control.  Brushing my teeth – well lets hope that I don’t jab my gums or have a spasm and jam the toothbrush down my throat or gums. Standing to wash the dishes, lets hope I don’t drop a dish or my legs shake so badly I can’t even finish.  Thankfully, I rarely have to wash dishes anymore because my boyfriend has taken over that task to help me out. Chores around the house? I can only do them on good days.  It seems like I’m finally being forced to learn how to let someone help me.  My boyfriend has taken on a lot of things because I just can’t do them or can only do them on certain days and/or time.  

I have been very emotional lately.  I cry when I’m alone and no one can hear me or see the tears roll down my face.  I try to bury my head in the pillow to muffle the sounds.  I also try to get it out in the morning, after my boyfriend has gotten out of bed and is downstairs making coffee and doing his thing.  Sometimes its hard to hide, but I am master at hiding and masking things.  Despite my best efforts I haven’t always been able to keep it in and it it’s getting harder and harder to hide, especially now that I have someone living with me. I used to be able to cry alone because I lived alone or if I was out I would force myself to just hold it in until I got home.  Little things that would have never bothered me are setting me off now.  Jokes that I’m used to and have been dealing with for years send me either to fury or to sadness.  I’ve always tried to maintain my sense of humor throughout all of this.  Laugh at myself. Laugh at the ignorance. Laugh at all of it because if I stop and take it all too seriously it takes me to a dark place that I don’t want to go again. I’ve been there too many times. 

The further into treatment I get the more I discover the depths and all-encompassing effects of my diseases.  I look back at how bad I was physically and I have come so far in a way.  In another way the symptoms haven’t really ever gone away they have just changed and now I’m more emotional (good and bad, but mostly bad) and life continues to be a struggle.  I “look” better than I used to but I don’t “feel” better, just different.  Treatment continues to target specific areas at specific times and that alone is enough to drive anyone insane.  While Lyme is always being treated it’s a constant and ever-changing of this and that (Bartonella or Babesia or limbic system or side effects and so on.)  This monstrous disease and its coinfections feel like they are devouring me alive.  I’m taking pill after pill and still seem to be drowning in sea that is Lyme.  I keep going because I have to and I believe that even though I may be left with irreparable damage to certain parts of my body and brain, I can and hope to get better than where I am today.  I’ve been struggling a lot with that hope lately and being so emotionally overwhelmed most of the time lately is definitely not helping.  I just look at my crosses (I have 2 tattooed on me) and another tattoo with “Serenity” “Courage” and “Wisdom” and remind myself to practice what I preach.

I’ve also been thinking lately a lot about my fellow “Lymies” knowing how they are suffering and hoping that they can hold on and fight the fight as well.   I recently learned of a Facebook/Instagram friend who died from complications of Lyme. It was heartbreaking as I have been following her for quite sometime.  I gained strength from her even in her most weakened state.  Sadly, I know that “Lyme” will most likely not be listed as a cause of death because as we all have heard “people don’t die from Lyme.”  We’ve heard that line so many times and yet we all know that thousands are dying from this disease.  Today I will count my blessings as I remember this. I will remember her fighting spirit, mourn for her, feel compassion for her family including her children, and I will persevere.  I hope that her death may not be in vain.  Maybe, just maybe and hopefully, the right “person” or ” people” will hear of her passing and it will cause some change, some uproar, someone to start something.  We can’t keep losing one another to this.   Reach out to each other, we are our best resources.

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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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