Good news. Bad news. Needle blues

Yesterday I had Lyme appointment #265. Just kidding. I honestly have no idea, but it feels like way too many.

At each appointment, my doctor tests my PH levels. When I started seeing this LLMD a year and a half ago, my “PH” was as bad as it gets. Yesterday it was close to the best you can get – 7.5. (8 is the best.)

Why is this important? An alkaline body can heal and fight infection better than an acidic body. When your body is in an acidic state, nothing works right. Lyme and co had caused my body to become totally acidic, which created a vicious cycle of having a sick body that couldn’t heal properly. I’m thankful to see signs of a healthy body again.

More good news… this was the first appointment that he didn’t hear any sign of a heart murmur. Lyme was starting to negatively affect my heart. If I hadn’t gotten IV antibiotics when I did, I don’t want to think of what could have happened. I know many doctors who want you to believe that Lyme is “easy to treat,” but that’s only if you find the bite and get antibiotics right away. The truth is that Lyme kills, even if it’s a slow tortuous death – it can kill you. Lyme Carditis is a real thing and I was getting on that crazy train.

If you heard screaming and swearing coming from O’Fallon today around 8:30am, that was me. I apologize… 

Today, I felt like this Lyme life was trying to kill me. My doctor changed my IV antibiotic to one that will target the Babesia and I was excited to start it. My nurse came out to do a dressing and needle change. It gets changed out once a week, and it’s usually pretty easy and I even know how to take the needle out myself. But on occasion, there have been some issues. The port may have moved or rotated under the skin or maybe it’s from scar tissue, but sometimes my nurse can’t get a blood return. It’s been pretty problematic off and on since I had the surgery and it’s a pain when it happens.

Today, after several sticks trying to gain access to the port and two needles, there was still no blood return. This happened a few weeks ago, and I had to give the port a break and get a regular IV in my arm for about a week. But my veins went on protest today and did not cooperate. They were difficult to find, then they blew, I was screaming and crying. It was awful and painful and my poor nurse still couldn’t get access. What a morning!

My body was so done and I was close to blacking out, so we will try agin in the morning. You know it’s bad when your nurse has to call for back-up. Hopefully, with two nurses and a less swollen port site, the port and/or my veins will cooperate and I can get started on my new antibiotic! Please pray for “easy access” and no crazy reactions to the new medicine! Also, please pray for my awesome nurses. I know all these complications are frustrating for them, too!

**Insurance is still denying coverage of my antibiotics, so we are appealing their decision – sending letters and doing what we can. Will keep you posted!

Thanks, for the love and prayers!

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Love Notes

I am frequently visited by encouragement fairies. They leave notes for me and Ryan on the wall outside our bedroom door. Their little souls are so in tune with the Fathers spirit. I think they must hear Jesus in ways we can’t (or won’t) listen to. I think we tune it out as we grow older. I want to hear His voice and act on it the way my girls do. Love in action. Being loving isn’t just words to them, they live it out.

If we all had hearts like children, this world would be a better place.

Who can you be an encouragement fairy to this week?

Whatever you do, just be “a-some” and spread the love. You don’t know what a few kind words can do to someone’s soul.

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Lyme in Missouri

I recently wrote the Missouri Health department to inform them that I was CDC positive for Lyme, Babesia, and Bartonella. It’s important for each case to be reported so officials can keep track of what diseases the ticks in Missouri are carrying. This is the letter I wrote:

To Whom It May Concern, 
I thought I should make you aware that I am a CDC positive Lyme case in O’Fallon, MO. I was diagnosed January ’13 and after a year of oral abx with no success, I am now on IV abx for Lyme, Babesia, and Bartonella. I’ve never been to the Northeast and I have lived in STL for over 12 years, born and raised in Dallas, Texas. I was bit in 2003 and the tick was attached for over a week, flu-like symptoms early on and fatigue/joint pain, but I didn’t think of the bite. I started having severe and debilitating problems in 2007 and they continued to get worse over time until I was bedridden. After years of misdiagnosis of MS, Lupus, Fibromyalgia, RA, etc, I finally know what is wrong. Lyme is here. It’s an epidemic. We need to get the word out!

Last spring, while walking in our neighborhood me, my husband, my two little girls and our dog had ticks on us when we got back home. I saved two of the ticks if you are interested in testing them. I want to know what bacteria/disease, if any, the ticks close to my home are carrying. 

Thank you for your time! 

Not only did I get a quick reply, but I had confirmation that little by little the tides are beginning to change. In the very least, Missouri government is acknowledging tick-borne diseases which is not what most Missouri primary care, specialist doctors, and even some veterinarians are telling their patients.

Dear Ms. LeBlanc,

Thank you for taking the time to post your concerns regarding Lyme disease to the Missouri Department of Health and Senior Services (DHSS) web site.  I am sorry to hear about the troubles you have experienced and the dramatic impact on your health. You may not be aware that laboratories’ and physicians’ reporting of tick-borne disease to Missouri public health agencies has almost doubled in the last five years.  As you have suggested, people’s lives can be radically altered due to a tick bite. 

In response, DHSS has partnered with tick-borne disease advocacy groups and local public health agencies to distribute posters, bookmarks, and radio public service announcements targeted at preventing tick bites and increasing awareness of the diseases that can result from a tick bite.  I encourage you to visit our “Ticks Carry Disease Materials Order Form” at the link below if you’d like to obtain any of our materials at no charge: 

http://health.mo.gov/living/healthcondiseases/communicable/tickscarrydisease/orderform.php

To document new cases of Lyme disease, physicians caring for patients with possible infections are asked to provide DHSS with the basic clinical, laboratory, and patient exposure assessments.  Unfortunately, documenting an old infection is more difficult as laboratory assays may not be as sensitive once the acute phase of the disease has past.  With the understanding that Lyme disease testing, diagnosis, and treatment can leave many people frustrated, our best recommendation is one of the oldest tenets governing the relationship between the patient and the care provider – if you have any concerns about your diagnosis or treatment, you should be aware that it is always acceptable for you to obtain a second opinion.

DHSS does not test ticks, but several commercial laboratories advertise on the Internet that they can perform assays for multiple pathogens for a fee.  The presence of bacteria or virus-infected ticks is not always a good predictor of human disease risk, however.  Life-threatening illness from ehrlichiosis, for example, tends to occur more often in older people whose immune systems are not as responsive as they once were.  As with many other kinds of infectious diseases, not everyone who becomes infected with a tick-borne pathogen develops symptoms.

Again, thank you for taking the time to visit the DHSS website.  We wish you the best in your recovery from your condition.

Karen F. Yates, M.Sc.
Vector-Borne Disease Program Coordinator
Office of Veterinary Public Health
Section for Disease Prevention
Missouri Department of Health and Senior Services

Tick borne disease has doubled in the state of Missouri… and that’s not including the cases that aren’t reported or misdiagnosed. It’s probably quadrupled. I know there is a long way to go in the form of research and reform where this politically charged disease is concerned, but I am hopeful that old/false information will finally stop getting perpetuated, despite the fact that there were still some things I disagreed with in this letter, based on my research.

I had an RA specialist tell me just last fall that Lyme did not exist in Missouri, nor did ticks that carry disease. Obviously, I knew this was false information and it worries me that she is probably spreading this info to her patients and possibly giving countless misdiagnosis’ of RA that is really Lyme disease. Not only did she argue about it for 20 minutes, but she belittled me and told me that I didn’t know what I was talking about because “she was the one with the medical degree.” As she left the office, she yelled back at me that she wasn’t going to continue arguing with someone who didn’t know what they were talking about and insisted there was nothing wrong with me.

I really feel like I need to print this quote (taken directly from the Missouri department of health website - Missouri Government Health Services) and glue it on her office door, along with the letter I received from the Missouri GOVERNMENT acknowledging the existence of Lyme and tick-borne infections here. 

“At least six different human tick-borne diseases have been reported in Missouri: Rocky Mountain spotted fever, ehrlichiosis, tularemia, Q-fever, Lyme or a lyme-like disease and the southern tick-associated rash illness. Tick-borne diseases are a type of emerging disease, many of them first recognized in the last 30 years. Human case numbers per year for tick-borne diseases are generally on the rise. This upward trend is due to better recognition and disease reporting, but is also a reflection of changes in the environment that fosters increased exposure and transmission to humans.”

I find it is such a shame that Lyme sufferers not only have to battle their symptoms, their doctors and their insurance companies, but they also have to become advocates for themselves in every way imaginable. I can’t think of an instance besides the AIDS epidemic where a disease was more controversial and those in power treated it with such disgrace. There are too many morally corrupt people pulling the CDC and IDSA’s strings. Patients shouldn’t have to deal with all of this on top of their debilitating disease. It is more than an obstruction of justice, it is a travesty.

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A Call and a Promise

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This is a call to all of those who have suffered with Lyme or other tick-borne diseases who are now in remission or symptom free. I urge you to please, please go back to your old Lyme groups, forums, blog chat rooms and websites and let us know about your health success and where your life is now. We need positive stories!! You were once in the pit, throw some light down here for those still suffering. As much as you may hate it, come back to us every now and then. I’m not asking you to relive your pain or your struggle, but you don’t know what it does to those of us still suffering to hear that it’s possible to have even part of our lives back. You know better than anyone how dark it is down here. We need hope and you can give the best kind we will ever hear – that remission from this disease is possible!! You might be surprised at how good it will make you feel, too. Share your story! We need to SEE the hope.

Now, to my fellow sufferers, who are currently still in the throes of disease. I know how bad it hurts to be forgotten. Let’s make a promise to each other to come back when we are well and give hope where it is needed most. Don’t forget your bad days. This disease doesn’t stop when you are symptom free… others are still suffering, and lives are continuing to be destroyed. Our voices are still needed to fight for those who cannot fight for themselves. I am making this promise to myself. I hope you will do the same!

#promisetogivehope

 

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Endure

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I don’t think I knew the meaning of the word “endure” before Lyme and company decided to join me on my journey. I am sure I thought I understood, but nothing teaches you quite like experience. I wish I could tell experience it can go now. I’ve endured, I’ve learned and I’m done. You don’t have to go home, but you can’t stay here. Thanks for everything. I’ll show you to the door, but please leave me alone now.

I feel I’ve endured and experienced enough pain for a lifetime. I am looking forward to a new season of life. I’m getting really sick of this one…

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Denial

I have avoided writing this almost as much as I avoid taking fish oil supplements or doing my B-12 shots. Writing about something makes it real. I guess you could say I’ve been hiding in a fog of denial. I’m in denial that this is my life right now. Denial that I have something implanted in my body for an unknown period of time and my life revolves around an IV pole. Denial that this disease threatens more than my own health, but also the health and well-being of my family.

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6 day supply of my IV antibiotic – Primaxin

I’m only 34… (ok, 35 next week and I am in denial of that as well!) But my quality of life is much closer to that of a 95 year-old. I tell myself that this is not forever and it is only a season, but each month that passes makes it harder to believe. With this disease, I don’t know what my future will look like and no one is making any promises. I know people who have been struggling for 20 years or more with little to no improvement – even with the best doctors and treatments.

Then I hear the hopeful stories like Olympian Angeli VanLaanen who was misdiagnosed for 14 years and after 3 years of treatment for Lyme, she was back contending in the Olympic half-pipe skiing in Socchi this year. Her story is pretty inspiring. I encourage you to watch her short documentary about her journey – LymeLight. Her story gives me hope and even though it is hard to ignore the thousands of stories out there of lives that have been destroyed by this awful disease, I continue to pray that this aggressive treatment will move me into remission.

One of the most devastating aspects of this diseases is the fact that researchers are just now scratching the surface of understanding Lyme and co-infections like Babesia, Bartonella, Masters Disease, etc. I discovered last year that it can be passed from mother to child, congenitally.

My little C has had health issues off and on since she was a baby. Despite her bursts of exuberant energy, she has days of bad fatigue and she misses school often. I actually had to go get her from school the afternoon that I started this post because she couldn’t make it through the day, and now she has missed three days this week. She slept for almost two days straight. 

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She goes through extremes of severe insomnia, frequent night awakenings and fatigue. When she was a toddler we had to stay by the bathtub because she would pass out during her baths and we couldn’t wake her.
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What her lymph nodes look like when she gets run down.

She has chronic infections, headaches, insomnia, joint pain and her lymph nodes are always very swollen – sometimes it looks like a golf ball under the skin on her neck. Her pediatrician has told me many times that it is like her body is always fighting some kind of infection and now we know she was right. Since she was about 3, she has complained of pain and stiffness in her neck, so I started taking her to the chiropractor this year to get her some relief from the pain. It helps quite a bit, but it’s just a band-aid.

I have always hoped that everything was just growing pains or the result of her love of cartwheels and dancing. After I was diagnosed with Lyme, the constant fear about her health lingered in the back of my mind. I kept praying that I was just being an overly concerned mother and there was nothing to worry about.

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She is a natural at dance and gymnastics!

This year I decided to have her tested for Lyme and co-infections and we got the results over a month ago. I just couldn’t write about it yet. I couldn’t even talk about it. I tried desperately not to think about it. The 6 bands (23, 31, 34, 39 and 83/93) on her Western Blot test that are specific for Lyme were positive. I’m not sure if I passed it to her in the womb or if she was exposed from a bite, but according to her symptoms and how they have progressed, it was probably passed to her from me in the womb or from breast milk. One of the top specialists on childhood Lyme has done extensive research on children with Lyme and she has every single symptom for congenital Lyme Disease.

The problem with treatment is that once the bacteria is in your blood, tissue and joints for so long – starting aggressive antibiotic treatment means the bacteria can become more active and cause symptoms to be worse, not to mention the herxing that can make things miserable. But the longer treatment is delayed, the harder it can be to treat. It’s a double-edged sword. As a mama, it breaks my heart to know that either way she will have suffering. It’s a horrible thought.

I know I didn’t cause it, but it hurts knowing that if I had known more about Lyme and if I had knowledge of Tick-Borne diseases when I got bit, maybe the outcome for both of us would have been very different. She is currently on oral antibiotics and her body is fighting. She has had some really bad days, but I’m praying that this is the worst it will get since we are being proactive with her health while she’s young. I hope that if we pulse treatment now, she will not have the Late/Advanced Stage Lyme symptoms later in life.

Right now, all we can do is take it a day at a time. Please pray for our family. This week I could hardly take care of myself, let alone my sick baby girl, so figuring out how this is going to work right now is the hardest part. I’ve been literally clinging to scripture to get me through these hardest of days. This one has been my life line lately.

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“God is within her, she will not fall. God will help her at break of day.”  Psalm 46:5

I’ve been encouraged lately from a woman in my online Lyme support group. She writes with hope about her journey with Lyme and I have always related to her posts. Her daughter also has Lyme.  Although this journey has been pretty excruciating, I’m thankful for those who make me feel less alone in this battle. I encourage you to read her blog here:  Finding God After Midnight and please pray for her and her family, as well.

Love and hope,
DeAnne

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Loss

It feels like loss
the empty hollow place
Where life once was
An overwhelming absence
Life is passing without me
I get glimpses of freedom from this prison
A reprieve
I catch moments of health
How it should be
But it is all too quickly ripped away
And I creep back into this
black
sick
disease
That permeates my brain with thick fog
hovers over and inside my body like suffocating smoke
binding my trembling bones together with weights
that get heavier as time goes on
It washes my swollen face with a grey paleness
and chokes my hopes and dreams in its clinched fists
Under a blanket of fatigue
I am buried beneath
I can’t move
I can’t breathe
So
I stand still in the shadow of disease
Waiting
Waiting
Waiting
It feels like loss
Because it is
Loss of myself
of time
of belonging
Loss of who I once was
And who I still want to be
I wearily make it to my room as I
Watch the world go by in
Beautiful hues
Of green and blue
While I’m stuck in black and white
I pull the covers over my head
My body burns like fire
The pain relentlessly pursues
I close my eyes and breathe deep
I long for health and to live again
But my body goes back to sleep

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Hey Jealousy…

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Jealousy can be a strange thing. It creeps up on me in the middle of the day, while I’m doing laundry or making coffee. I’m minding my own business and boom. Freaking Facebook! Why haven’t I learned my lesson? I know social media has many positives, but it also can be so damaging when we play the comparison game.

I have written a few posts over on my personal blog about my struggle with wanting another baby and how I let that dream go because of this disease. I tried for years after my second little girl to have another baby, to no avail. I got really sick around that same time. After being sick for a few years, I finally found out that I had three Tick-Borne Diseases and I have struggled with it ever since. My body is broken. It hasn’t been working in so many different ways and Lyme was the cause for my sudden infertility. I had to say goodbye to wanting another baby – not only to focus on my health, but because I was tired of living with the weight of unfulfilled expectation. I chose to be thankful for my girls and learn to be content without the big family I had always pictured.

Is it just me or does it seem like everyone and their sister is having babies lately? It’s awesome and I love it. I get my baby fixes from my sweet friends who let me drop in and hold their precious ones and get a whiff of newborn baby smell. :) I love seeing friends become a new mama for the first time or after years of trying for another child. It’s beautiful and I’m sincerely happy for them.

Then it happened. Several Lyme friends and acquaintances posted their joyful news of being pregnant. People I have struggled alongside. I am thrilled for their health, remission from Lyme and their babies to be. I truly am. I’m also human. (Here comes the jealousy part.) One of my friends is pregnant with her third. She prayed and wished and dreamed of having one more chance to be pregnant. Even in the throes of disease, she voiced her desire for another baby and she is pregnant.

When I saw one of the posts, I put my phone down and cried frustrated tears. I hate to admit it, but it’s the truth and for some reason, being vulnerable is the only way I know to write. I can say “I let go” as much as I want, but when it comes down to it – I’m a momma who wasn’t ready to say goodbye to having babies. Seeing this mama get her wish made me so happy, but so sad at the same time. I had prayed the same prayer. I wanted another one. I begged God to take this disease away and give me a baby. I finally surrendered my will, but my human nature wants to question and wonder if God truly has my best. It’s silly when you think about it. Sinful, human, jealous me – questioning my amazing, omnipotent, all-knowing God. I wrestled with him for a few days. I had fits of tears and fits of anger – just me and God… duking it out. It was a soul-searching, exhausting battle. And when all was said and done, I came to the end of myself.

Last week, I was looking up a specific verse and accidentally stumbled onto this one. I’m sure I’ve read it at some point in my life, but it had a new meaning for me.

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The words glared out at me like new, shiny objects I had never seen before. I studied the verse, memorized it and let it sink in. I stared at it forever and read it out loud after writing it down. It’s sitting on my desk, so I can see it every day and be reminded (in my own handwriting) that in the midst of my human suffering, worries, doubts, fears and yes – even jealousy – He is there for me. Even though it can feel like it with this disease, I am not alone and this is not the end. When this season of suffering is over (whether that be on this earth or in the one to come) He has promised me that He will:

Restore. (Heal, renew, redeem)

Confirm. (Validate, support, justify)

Strengthen. (Build up, sustain, empower)

Establish. (Create, provide, stabilize)

Those words are for me. That’s all I need to know. I don’t need to hold onto jealousy or doubt. I have a promise from my Father… I’m clinging to his purpose for me and no matter what that means or doesn’t mean…I will trust Him.

 

 

 

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Get Me Off Of This Roller-Coaster!

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One of the worst things about Lyme – I know I say that a lot, because sometimes every thing feels like the worst thing – but, really this seems to be one of the most horrible parts of the disease. I never know what a day will bring. I have no idea from one week to the next how my health will be. Making plans is stressful because, even if I’m having a pretty good week, next week may not be that way.

This summer, I started anti-malaria drugs in addition to my antibiotics and had some great results. I felt better than I had in years. Everyday seemed like a gift. I was able to be fully present in my life again. That felt amazing. I was getting glimpses of the woman I used to be and I was so excited that I had finally found a combo of drugs that was making a difference. For the first time since starting my treatment journey, I was having successful results!

Then a few weeks ago, I woke up with a migraine reminiscent of the ones I used to have when I couldn’t move or walk because of the intense pain. This was also the day I was scheduled to leave on a girls retreat road trip four hours out-of-town. I didn’t think I would make it. But the difference between the me before antibiotics/antimalarials and the difference of me two years ago when I had no diagnosis or treatment was that I went anyway. I rested and “medicated” and by the late afternoon, I was feeling better. I had a fantastic weekend with friends and I was able to keep up, for the most part.

Two years ago, I wouldn’t have been able to get out of bed, no matter how much I wanted to, or how hard I pushed myself. It just would not have happened. What I wish I could explain to others is the distinction between just being tired and being fatigued from disease. It is a vast difference. It is not even the tired you have when you have the flu. It is beyond anything I can explain. The only way I know how to explain it is you are completely incapacitated, can’t lift your head off the pillow. There is a heaviness that sits on your bones keeping you immobile and lethargic. I simply physically could not do the things I loved to do, nor could I generate any energy to do them.

Now, though I have more energy, I still have days where I can’t do as much as I would like. This is where the frustration comes in. It’s emotionally draining and I will break down in tears because “yesterday” was pain-free and wonderful but “today” feels like I’m fighting for my life again. It seems like a cruel joke to have glimpses of health, just to have them ripped away over and over and over.

It’s the nature of the disease. Sometimes it’s herxing* or it might be the bacteria moving into different areas of the body and causing different symptoms. Either way, it’s an awful roller-coaster ride and I want to jump off. This week has been slow and I’m exhausted. I’ve had some excruciating joint pain that had me writhing in pain. This was after days of not having any pain. While I’m thankful for the new-found combo of meds that are helping, this back and forth is getting old. Will I ever fully recover? When will I see remission? LLMD’s say that it’s an underlying rule that you must take one month of long-term antibiotics for every year you were infected with the Tick-Borne Disease before you will start seeing long-term results. My problem is that I don’t even know how many years this bacteria has been in my body. It could have been 30 years and that is a fear that looms in the background of my daily life.

Regardless of the crazy roller-coaster, it has been amazing to be able to participate in life again. I went shopping and had lunch with a friend last week and the very next day was able to get up and get going for another busy day. Getting up in the morning and getting ready for the day without having to take breaks or naps in between, hasn’t happened in YEARS. It may seem like a minor thing to most people to be able to get up and get ready for the day, but these are huge baby steps for me. I see my life peeking through the haze and I am so eager to reach out and  grasp it with both hands. I am ready to live a life without pain and debilitating fatigue. In the meantime, I wait for the roller coaster to come to a complete stop, so that I can enjoy the good days, without fear of the future.

*Jarisch-Herxheimer Reaction: It resembles bacterial sepsis and can occur after initiation of antibacterials, such as penicillin or tetracycline, for the treatment of louse-borne relapsing fever and in tick-borne relapsing fever. An association has been found between the release of heat-stable proteins from spirochetes and the reaction. Typically, the death of these bacteria and the associated release of endotoxins or lipoproteins occurs faster than the body can remove the substances. It usually manifests within a few hours of the first dose of antibiotic as feverchillsrigorhypotensionheadachetachycardiahyperventilationvasodilation with flushingmyalgia (muscle pain), exacerbation of skin lesions and anxiety. The intensity of the reaction indicates the severity of inflammation

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A Bad Day

The birds tell me it is morning, but I cannot force my eyes open. I can already tell it is going to be a day my girls are going to have to fend for themselves for most of the morning. I cringe with every movement. Joints crack as my bones bend. My ears are ringing and the pressure in my head feels like it may burst at any second. I hear the faint sounds of little feet on hard wood floors in the kitchen and then the pantry door opens. It is my youngest. This summer she has been the first one awake most days. She is always the first one who is hungry. I want so badly to jump out of bed, run into the kitchen, smother her face with kisses and make her a huge breakfast of pancakes and eggs. I imagine me and my girls eating breakfast together, planning our day and having a fun, “normal” morning…the ones where mommies get up, get ready for the day and actually get out of the house. I know this is not going to happen. Not today. I still cannot open my eyes. I fall back to a passed-out, sick, exhausted sleep.

I don’t know how much time has passed, but I hear her voice near my face. She is asking me if she can have something – food, markers, a game. It happens a few times during the morning. They have been good today. They let me sleep. They know it is important for me to rest, but I don’t want to be resting. I want to be with them. I want to participate in my own life. I miss it more than I can express. I feel the familiar twinge of guilt mingled with bitterness. Then as quickly as that feeling comes over me, an optimistic thought follows and I pray scripture under my breath. I will not let this disease make me a bitter, depressed person.

I attempt to sit up and my head swims. I would give anything to feel rested after 8 hours of sleep. Instead, I feel drugged, dizzy and my body begs me to stay under the covers. I pull my ridiculously tangled hair up in a bun and slowly make my way to the kitchen… each step feeling heavier than the last.

I wrap my arms around my girls who are helping themselves to a mid-morning snack. I cut them up some fruit and sit with them for a minute. I thank them for entertaining themselves so that I could rest. I promise to take them for ice cream later as a treat, hoping my body cooperates for the outing. It might have to be tomorrow, but I am going to push myself to at least get a shower.

First things first – meds, coffee, shot. Sometimes the order changes because coffee likes to come first. The coffee starts its dripping, as I desperately try to clear the fog from my brain. I have no appetite, but it is necessary to get something in my stomach before I take my pills. I pull out my box o’ meds and drink my water, as I take a bite of toast. I get out my B12 shots and warm up the syringe. I give myself a shot, take a few more sips of coffee and kiss my girls on their foreheads. I have to lie down for another hour before my shower attempt, but I’m determined to get out of the house today.

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Treatment: it’s a 24 hour job…

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After one errand, I come home exhausted and ready to crash, but there are still at least 6 hours till bedtime. The thought of preparing dinner is too overwhelming, so I lie down on the floor near the girls and watch them play Barbies. My muscles begin twitching, a sign that some herxing will be coming soon. I brace myself for what might come in the next few hours – focusing on drinking water and detoxing as best I can. My girls start fighting and my head cannot handle the jolting noise. Their argument results in me being short and heated with them. I instantly regret my words. It is not their fault. I am frustrated with my body. I am so sensitive to noise. We make peace and I turn my attention to dinner, pushing past the herx as best I can.

Night finally comes, bringing a worsening of pain, burning joints and contracting muscles. Sleep does not come easily. As my body reaches through the pain grasping for needed sleep, I pray that tomorrow will be a better day. I have too many things I want to do, need to do… must do. I say it out loud. “Please. Tomorrow. Be better.” Because this…this is not living and I want to live again.

 

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