To be honest…

I’ve been struggling with every aspect of my life, including how to start a new blog post.

I guess I will just dive right in. 

In December, I had a bunch of labs drawn because I was really starting to feel a shift in the opposite direction I was wanting to shift…in fact, I was backsliding pretty rapidly. So, I had my LLMD (lyme literate doctor) order a bunch of tests along with another doctor that focuses quite a bit on hormones, but also has his hands on some lyme information too. Surely, between the two of them we could figure out why my health was rapidly declining, and we did get some answers.

Let me start with the good news first…drumroll….my lyme and my most nasty co-infection bartonella are inactive! That’s huge and I did a little mini celebratory dance in my head when he told me that. Now, for the bad news. I found out that my mycoplasma pneumoniae was through the roof, my C4A was extremely high, CD57 extremely low, my thyroid still isn’t working properly, I also had a lot of deficiencies in vitamins and minerals, my heart unfortunately is still very taxed and having issues keeping up (causing a high chance of stroke or heart attack), and my hormones were all over the place.

So what does all that mean? Well, in my opinion it means ALOT. I obviously still have one or more underlying issues. My labs showed symptoms…not a diagnosis. My labs were off as a result of something far more serious being wrong. But, what was wrong? Obviously, my immune system is extremely taxed but still functioning at some level even though my CD57 was only a 12 and it’s supposed to be over 300. However, I still knew something just wasn’t right. Something had changed.

Over the months I began to lose weight pretty quickly (especially for me). Not by choice, as I’ve always loved food, but I just couldn’t keep anything in. My body would reject everything. Nothing sounded good, tasted good, and I was always nauseous. I also began to have chronic migraines around the same time that my gut started acting up and the pain in my body had easily become a 10 again on the good ol’ pain scale. So, what was going on? I was so frustrated and desperate. My LLMD didn’t have much input at this point, and I felt that I was maybe at a point that he could no longer help me. So I turned to my other doctor that had ordered some of the labs in December and it was through him that he realized I had been exposed to MOLD.

Less than two years ago we had made the decision to move and change locations to be closer to family. We sold our home but then didn’t have anywhere to go because the housing market in our hometown is incredibly sparse. So, we moved into a rental home and we were there for about 6 months while we actively searched for a home to buy. As soon as we moved into the rental home I started to experience daily headaches and got random rashes that burned. The kiddos always seemed to be sick too. Then one day my hubby started getting headaches every morning when he would wake up. I knew something was making us feel bad, but at the time I didn’t know what it was. However, before we bought the house we are living in now something told me to get it checked for mold, and thankfully it came back negative. The only possible explanation of my mold exposure and the high C4A markers would be that we had all been exposed to mold for a short amount of time at the rental house. For most, this might not be a concern but with my already compromised immune system and my inability to properly detox, it was the perfect storm.

I started treatment for mold a month ago. It’s not been easy. It’s actually made me feel pretty sick and I have had to back down on how often I take the mold binder because it’s been hard on my system. I also have increased my supplements and prescription medicines way more than I would like, but at the moment I have to do what I have to do in order to function and survive. I don’t know how long I will be on the mold protocol as I will have to be retested often. I met with my doctor this last Monday and I have a few more mold specific tests that need to be completed, and so that means that my mold journey is really just beginning. My doctor gave me medicine this week for my migraines, nausea and inflammation. I know that all of these are bandaids in the sense that they aren’t fixing the problem, but right now I need these bandaids to function and I gladly welcomed them. I’m happy to report that I have already gained two pounds back this week.

In addition, I am also focusing quite a bit on any other possible underlying reasons why I my immune system is so taxed. I’ve come to find with the help of some friends, that many people suffer from cavitations. What is a cavitation? A cavitation is a hole in the bone, often where a tooth has been removed and the bone has not filled in properly. In the last several years, the term cavitation has been used to describe various bone lesions which appear both as empty holes in the jawbones and holes filled with dead bone and bone marrow. I am completely fascinated by this theory and after doing loads of research on it when my eyes would focus and I was migraine free, it seems that many of my issues/symptoms could be caused from this. Below is an awesome website that lists many of my lingering symptoms caused by infections that go unnoticed for long periods of time.

https://naturaldentistry.us/2213/cavitations-the-silent-killer/

What are my next steps? I will be getting a CONE BEAM SCAN of my mouth/jaw to see if any of my fillings and wisdom teeth removal are causing any issues. After that, depending on what the results reveal, I will either be getting that taken care of by a biological dentist that focuses on cavitations, or I will be desperately researching again…back to square 137498. I have hope that the mold and my hidden infection will be the two missing pieces to my very complicated puzzle.

I do, however, still have plan Z. I’ve been doing about 10 months worth of stem cell research. It will be my last resort as I will have exhausted every single possible treatment out there and funds, but I know that God will find a way if I am supposed to go down that path.

If you are reading this…thank you. As always, I appreciate your support and love as it keeps me going a lot of days.

It’s a good thing I am stubborn because I will never give up my search for answers. 

stubborn

Advertisements

I could not take care of my daughter…

Sometimes, I don’t recognize myself anymore as a mother, wife, friend, daughter, etc.

This has been one of the hardest sentences that I’ve ever had to write and I write it with an immense amount of guilt, sorrow, and a heavy heart…

“I was unable to take care of my daughter on my own for almost two weeks.” 

There. I said it.

As a mother, that has and was one of the hardest things for me to admit. As a mother, I didn’t want to have to need help. As a mother, I wanted to be able to solely provide for my baby girl when she needed me the most. And as a mother, I fear I failed her.

My 3 year old daughter got her tonsils and adenoids taken out about two weeks ago…she needed care 24/7 for that first week to week and a half, and I was unable to take care of her on my own after a few days. Being unable to provide for my family, not only is one of the biggest blows to my ego but it makes me question everything I’ve done thus far in life as a chronically ill mother.

Could I have done more? Could I have dug deeper? No, I honestly don’t think so, but that doesn’t take away from the fact that I don’t get to be the mom that I always thought I would be. It doesn’t take away the fact that my life is a constant uphill battle, and that although, my body doesn’t want to work, I HAVE to be there for my kids. I WANT to be there for them.

I feel I’ve been robbed. I wonder how many more times I will be robbed? I wonder how many moments I will miss because I’m too sick to experience them with my children? I wonder how many moments they will be robbed of when their mother is not able to be present?

It’s been a really long time since I’ve written a blog and actually published it. I have many that I’ve written over the months for my own sanity, but I haven’t felt that they were ready to be published yet.

But I know a lot of you would like an update and some of you need an update. Maybe some of you are even asking yourself, “why isn’t she better, yet?”

I know that most of you do not know that a lot of my infections have come back. Most of you do not know that I am pretty sick again. Most of you do not know that my lab results were anything but promising. Most of you do not know that the fatigue and the pain have set in and my pain level seems to be back at about an 8 or 9. And, I’ve also had some alarming heart results come back. The passing out has begun again, and I’ve been told I could have a heart attack or stroke at any moment. What would you do?

I decided to put everything on hold until after Christmas. Then it was after Amelia’s surgery. Yesterday, it dawned on me that admitting I am getting sicker and not treating are just delaying the inevitable and that there will never be a GOOD time to start treatment again. It’s never going to be easy, affordable, or long lasting. It took me months to accept this, and I’m still processing it all.

So, now I’ve come to a fork in the road.

When you are unable to take care of your daughter 24/7 and need help, you know it’s not good. But, I’ve exhausted all efforts and I am not finding relief. I’m not bouncing back.

What else is there left to try? How many more diagnosis am I going to receive before I die? How many of them will be incurable and cost a fortune to treat just in hopes of remission?

People tell me this too shall pass, hang in there it will get better, have faith, pray harder, ask for a miracle, never give up, keep fighting and all of these are great things to say, but unfortunately I’m losing hope.

I’ve prayed till I’m blue in the face. I’ve asked God to work a miracle on me even when I felt unworthy of it…someone always has it worse, right? I’ve researched everything I can and I am a walking book of terms and definitions, but the knowledge and the prayers are not proving to be effective enough.

No, I’m not giving up. Yes, I’m angry with God. No, I have not lost my faith. Yes, there are days when I am ready to die. No, I am not suicidal. Yes, heaven sounds wonderful. No, I’m not ready to stop being angry. Yes, eventually I will let it go.

Life is full of choices. I’ve tried my damnedest to choose wisely. To take the higher road. To be positive and encouraging. To be there for others that are suffering. I will continue to share what I know and I will continue to help those even though at this current moment, I can’t even seem to help myself or my own family. But, you bet your ass I can help direct someone and inform them all there is to know about Lyme Disease, and right now, my children and helping others are the reason I wake up each morning and why I haven’t given up.

I’ve decided I am going to use the resources I have here already to begin treatment again. This makes me extremely nervous because as I begin to kill my active infections I will have what is called “die off” and they become extremely toxic and hard on my body and I will become even sicker before I will get better. I will be “herxing” and “detoxing” A LOT. I am afraid there will be days that I won’t be able to move or get out of bed, but I can feel my body rapidly declining and I can tell that I am getting worse again. I am having to deal with several active infections, along with pneumonia and various other issues and before I decline further, I need to stop the infections from growing and spreading and harming my immune system even more.

So, I have a plan in place. I will be quite sick, sicker than even now for months until I start feeling better again. And, for those of you that aren’t familiar it will be a lot like chemotherapy if I were to have cancer.

So, I am willing to get extremely sick…won’t be able to move sick, in order to gain what I have lost. I am willing to do anything at this point because for a good year after treatment things were getting better, and now I cannot afford to let them get any worse. I would appreciate prayers, encouragement, and love for our family as this is going to be an extremely trying time for all involved. Thank you from the bottom of my heart.

Just in case FB ever shuts down…

Ironically, a graphic design major is questioning the use of technology. I know, crazy, right? But, I honestly can’t remember the last time that I printed off an actual photograph! I do regularly back up though…just in case you technology nerds were thinking of suggesting that. I’m equally “nerded” but depend heavily on the good ol’ internet and all of it’s fancy app’s.

So, just in case FB crashes one day and all of my posts about my kiddos and this circus I’m involved in disappears, I at least want to have this crazy post saved somewhere near and dear to me.

And side note, I did start a baby book for Parker. Hence the word “start” and Amelia, well, she’s writing her own book.

Thursday Morning Wake Up Calls

3:58 am Wake up call and daily snuggles, check. Which also includes one elbow to the boob, a knee in the gut, and someone pulled out a handful of my hair. Still not sure who the culprit was?

4:10 am Breakfast requested, rolled over and pretended it was all a bad dream.

4:15 am Begin countdown for how long I can convince them to go back to sleep before tears begin. They lasted three minutes, in case you were wondering. 3 minutes!

4:20 am Both have conveniently had to poop and need help with their “business” downstairs.

4:23 am Mom is officially up.

4:24 am Mom begins fixing breakfast while lecturing them about how important sleep is…for EVERYONE.

4:30 am First fight begins, Peppa Pig vs Paw Patrol, this shit it serious.

4:37 am The kids are quiet for a few minutes, in someone’s defense they are finally eating their effing breakfast.

4:45 am The kids suddenly realize it’s super dark outside, “why are we awake?” Good question, very good question.

4:48 am Amelia insisted I paint her fingernails and when I refused because I’m pretty sure my eyes weren’t functioning yet, we listened to a meltdown for a good five minutes about her nails.

4:58 am I was challenged to a drawing match on the magnadoodle. I take drawing games very seriously. Challenge accepted.

5:10 am Both kids are mad at me for my mad drawing skills….ahhhhhh silence.

5:11 am Parker says, “I’m tired.” I bite my tongue. He’s got to be kidding me.

5:21 am Amelia says, “I think it’s time for our second breakfast.” Are you serious, are you freaking serious?

5:22 am Amelia’s second breakfast was a bowl of croutons. Mom of the year award, right here.

5:31 am Parker falls asleep on the couch. YES, at least one kid is smart.

5:40 am Parker is awake. WTH

5:42 am Amelia is working hardcore on whooping my butt at a new drawing match. Challenge accepted, but I know I must now use my right hand to draw…lesson learned.

5:47 am I’m going to close my eyes for just one second.

6:02 am I wake up to Ollie being wrapped up in a baby blanket and being forced into a baby crib. Ollie scratched Parker, there is no blood, but there could be later…this is SERIOUS. Bandaid, ASAP. Crisis averted.

6:05 am Parker and Amelia are arguing over the words “fat” and “big” and all I can think about is how I would love to take a big, fat nap after this.

6:07 am, Parker thinks it’s time to start getting dressed for school, I mean we technically do have less than 2 hours now before we are supposed to be there.

6:15 am Amelia gets mad at Ollie for attacking her. I try so hard not to laugh. No one is hurt, but now she is reminded about her nails when she was looking for a “wheeeeeeeely bad scratch.” And cue, the fingernail polish argument…but, this mama doesn’t have time for flawless nails so I put an end to it before she could get to her ugly, silent cry. Another crisis adverted.

6:18 am I check the clock…what the hell, has time just stopped moving?

6:19 am Amelia yelled at me for flushing the toilet. My bad. Really? Does anyone else have children that pooh this much? Like seriously. Twice already, today?

6:25 am Only one hour and thirty minutes left until take off. You can do this. Pep talk was successful.

6:30 am Dora it is. No arguments. Thank you Jesus.

6:37 am Parker is snoring and sound asleep. I threaten Amelia with her beloved fingernail polish to be quiet or she walks the plank. She doesn’t even know what that means, but it worked.

6:40 am Try to avoid eye contact with her for several minutes. Maybe she will fall asleep?

7:18 am Parker woke up and said, “he had the best nap ever!”

7:20 am Everyone has their clothes on and shoes and we are now fast approaching the coats. We still have 20 minutes to spare. Will this ever end?

7:22 am Mom gets a great idea. Go to the gas station and get gas at a snails pace. Sorry to anyone behind me that was in a hurry.

7:32 am I say in my most excited voice possible, “Let’s drive around for a bit!” Groans and moans come from the backseat. I ignore and engage in “kill time now mode” at a snails pace.

7:45 am Approaching school, Amelia yawns, “ahhhhhhh, I’m gonna need a nap today!”

7:50 am Amelia is playing hopscotch while Parker stands at the beginning of a line that he’s created staring off into space. I go over to him, “why aren’t you playing, buddy?” “I’m just too tired, mama.” Me too buddy. Me too.

7:55 am The kids are getting in line. Amelia demands huggies and kissies, while Parker casually waves goodbye.

8:00 am I drive home and reflect upon the last four hours of this joyous experience and think, maybe I should have given them a shot of whisky…no, maybe I needed a shot of whisky?

Good luck teachers. I applaud all of you, always.

Now I’m going to go take a big, fat nap.

img_5932

Smile through the pain…

Life. 

I choose to live and I choose to fight, 

Everyday to do what is right. 

I fight hard not to throw my hands up in the air and just scream,

But I’ve got to be strong and calm for my family. 

I smile through the tears and the pain, because I don’t want to make anyone close to me suffer again. 

I lie through my teeth with the “I’m okay” and “I’m doing fine” because it’s easier to lie then to see them question WHY? 

I may not look sick,

I may smile through the tears,

But if I could I would fast forward through these years, 

I would without hesitation,

It’s not because I lack motivation,

But to put it simply…

I am tired. 

Tired, weak, and running on an empty tank.

I can’t even remember a time when I felt alive, to be frank. 

Maybe five years ago? 

No, more like 15, but who’s counting? 

I don’t really know. 

If only you could really see ME,

See my insides, my taxed organs, my toxic blood pumping through my hardened heart. 

I’ve made progress and I know that’s a start, but I didn’t know how hard survival was going to be. 

Nothing could have prepared me. 

So tonight, I am removing my mask so you can really see. 

Can you see me now? 

Can you hear me? 

God, can you hear me crying, how? 

Why? 

This can’t be it. 

My journey can’t be like this on repeat.

Isn’t it ironic…

don’t you think?

ironic |īˈränik|

adjective

using or characterized by irony: his mouth curved into an ironic smile.

• happening in the opposite way to what is expected, and typically causing wry amusement because of this: [ with clause ] : it was ironic that now that everybody had plenty of money for food, they couldn’t obtain it because everything was rationed.

I think Alanis Morisette paved the way for my life to be filled with irony. Jagged Little Pill was a staple in my teens. I would play her CD over and over until my dad swore his ears were bleeding and he was 100% convinced she wasn’t singing, he called it, if I remember right, “screaming.”

Seriously though, what do dad’s know?  I will admit…Alanis was raw and loud both through her singing and her lyrics, and she actually was the first “ah-ha moment” I have of truly understanding the importance of life being “unfair” even if I didn’t know what Chardonnay was. There were days where I would play the song Ironic over and over on repeat until I believed that I sounded just as good if not better than Alanis herself.

I would sit there and think of that terrified father that had never been on a plane before and his poor children and their future. How scary would it be knowing that you wouldn’t get to say goodbye and that he had never been on a plane before and that the choice he made sealed his fate? How ironic. Or, how about the old man who won the lottery, but then he died the next day? How ironic…don’t you think? I’ve realized as I get older and wiser over the years that life is all about choices and their unpredictable consequences.

Alanis actually put into words very easily how shitty the world’s timing can be and for that I will forever be thankful. Thankful to my parents for letting me purchase my very first CD that had a couple of curse words in it, and thankful to Alanis for opening my eyes to a world of expectations, but yet so many disappointments.

ironic-quotes

I personally think that Webster’s definition of ironic sucks, and that they somehow make it into something that is amusing…but irony isn’t always funny or entertaining. In fact, I’m pretty sure that if I could kick irony’s ass, I would.

So however you want to word it…ironic, cynical, negative, I’m feeling it. Nothing could have prepared me for the irony that I have experienced these past few months. Not even Alanis herself.

As most of you know, I already am fearful that I have passed down my lyme disease to my children through pregnancy and breastfeeding. As some of you know, it’s now being proven that lyme disease is not just carried in ticks, but that they are finding it in any blood sucking insect such as spiders, mosquitoes, fleas, mites, etc. and that a few months ago my 3 year old daughter displayed the classic bullseye rash on her leg and became instantly symptomatic within the first 24 hours of her bite. The thing is, this wasn’t a tick bite. She actually had four mosquito bites with one that had the bullseye rash around it.

It’s pretty much my worst nightmare. 

bullseye-rash-from-lyme-disease.jpg

The second I saw it, I thought I was going to throw up. I couldn’t think, I couldn’t breathe, and I couldn’t remember a damn thing that I had so passionately researched over the years about how to handle a circumstance like this one. To sum it up nicely, I FREAKED out.

How ironic is it that I’m terrified that my kiddos already have Lyme disease, and then an everyday, annoying blood-sucking insect turned that nightmare into a reality?

In case you were wondering, Amelia is doing much better now and is displaying no signs of infection, which I am so grateful for.

But, to add salt to the wound, our wonderful Ollie cat got sick. It started out as a respiroatory issue basically since we’ve had him but the vet kept insisting it was just a cold…six antibiotocs later and we switched vets. Our cat, that I so carefully picked out, and all I wanted was a cat that was healthy and had not been exposed to any outside garbage, ended up having Mycoplasma pneumonia. To some, that may mean very little, to other’s that will be the icing on my ironic cake. Mycoplasma is actually a tick born co-infection, although, it is is suspected that he got it from his mother since her entire litter ended up getting sick by…drum roll…a flea bite. Interesting, isn’t it? Maybe a little too ironic?

Ollie appears to be better after being on doxy (an antibiotic often given to humans to fight Lyme). In fact, he was probably treated better and more accurately than my own daughter. Ironic, right? Animals today are tested yearly for Lyme disease, they are also given the right antibiotics and for the right amount of time to be on them. How ironic was it that I had to fight for my daughter to get antibiotics and then I had to fight even more to get a longer amount of it, but our house cat got everything he needed to cure him without the vet batting an eye or even running one test? Something is seriously wrong with this picture.

So, at one point in time two of my “kiddos” were on medicines for infections caused by bugs. Can I just quickly say this? I freaking HATE bugs. I don’t care how beneficial some are…I really don’t. They could all be dead to me tomorrow and I would be okay with that. Mother Nature might not be and people that love flowers, fruit, and millions of other things maybe upset, but at this point…I honestly don’t care. There used to be a balance…and now it’s just BUGS.

bug-e1405601568854

A million other things have happened in the past few months that I don’t even think I have enough strength or stamina to write about. As you can see, I’ve been working on this one now for several weeks.

And just in case you live under a rock, didn’t have me as an art teacher, or didn’t grow up in the 90’s; here is one of the best songs ever written. (In my humble opinion, of course)

“Ironic”

An old man turned ninety-eight

He won the lottery and died the next day

It’s a black fly in your Chardonnay

It’s a death row pardon two minutes too late

And isn’t it ironic… don’t you think

It’s like rain on your wedding day

It’s a free ride when you’ve already paid

It’s the good advice that you just didn’t take

Who would’ve thought… it figures

Mr. Play It Safe was afraid to fly

He packed his suitcase and kissed his kids goodbye

He waited his whole damn life to take that flight

And as the plane crashed down he thought

“Well isn’t this nice…”

And isn’t it ironic… don’t you think

It’s like rain on your wedding day

It’s a free ride when you’ve already paid

It’s the good advice that you just didn’t take

Who would’ve thought… it figures

Well life has a funny way of sneaking up on you

When you think everything’s okay and everything’s going right

And life has a funny way of helping you out when

You think everything’s gone wrong and everything blows up

In your face

A traffic jam when you’re already late

A no-smoking sign on your cigarette break

It’s like ten thousand spoons when all you need is a knife

It’s meeting the man of my dreams

And then meeting his beautiful wife

And isn’t it ironic…don’t you think

A little too ironic…and, yeah, I really do think…

It’s like rain on your wedding day

It’s a free ride when you’ve already paid

It’s the good advice that you just didn’t take

Who would’ve thought… it figures

Life has a funny way of sneaking up on you

Life has a funny, funny way of helping you out

Helping you out…

51w6nuyonfl

Dear younger me…

I’ve heard this song played on the radio several times the past few weeks and each time I hear it, it really hits close to home. I find myself thinking about it most of the day afterwards. Almost obsessing about it. What if we all could go back in time and write a letter to our younger selves? What would you say? Would you even listen? Could you have prevented heartache and pain? Would you still be the person you are today? How often do we hear, “you can’t change the past?” How often do we wish we could? 


I will admit, I’m stubborn. I’ve never liked being told what to do and if you are/were really bossy with me I will/would typically do the complete opposite. Therefore, I wonder…would I have even taken this letter to my younger self even seriously? But, what if for some reason I did take it seriously and I could have changed where I currently am today? Chances are knowing myself and knowing how I’ve always been defiant and gone against the grain, I would have simply ignored it…but I can’t help and wonder if some of my heartache and pain could have been avoided? 

Life is hard. It doesn’t matter if you are sick, healthy, poor, or wealthy it’s a really challenging world we live in. 

If I could have written a letter to my younger self it would have gone something a little like this. 

Dear Younger Me,

Please don’t worry about your physical appearance so much. Clothes are just that, clothes. Please hear me loud and clear, you are not fat. You are beautiful and you don’t need to hide behind the makeup and your fake smile because you feel exposed and weak without it. Also, please don’t worry about getting straight A’s because when you interview for a job, no one cares if you had a 4.0 in college or high school. You have no idea what hard is yet, and so enjoy your childhood and college years as much as possible because the “real” world is nothing like you are expecting. It’s okay if you mess up and make mistakes, people will choose to forgive you or they won’t, but the world will keep spinning either way. Most importantly when you make those mistakes, you need to forgive yourself and learn to let go. You are going to be faced with many challenges as you grow older. Relationships, friendships, motherhood, adulthood, financial strains, and the buggiest of them all…your health. Please don’t take any of these things for granted. You will be forced to make decisions in your life that will affect all those around you both negatively and positively, but there is no reason to harbor guilt from these decisions. They needed to be made. You are much stronger than you think you are. You are going to learn a lot about the cruelty of this world and how unfair it can be earlier than most. Please handle this with grace. Do not harbor resentment or anger towards anyone or anything, because that will only hurt you in the end. You are going to get very sick and it’s going to seem like you are drowning when this happens, but be still and calm, and know that you are not alone. You will need to set a good example for your children, family, friends, and strangers that pass your way. Be humble. Always be humble. And be prepared for anything because it will not turn out how you think it will, but that’s okay. You are going to learn and grow from the circumstances handed to you, and you are going to help others. Don’t ever stop learning. Don’t ever stop believing. Don’t ever stop loving. Don’t ever stop dreaming. And, most importantly, don’t ever give up. 

Love always,

Current Me 


My inspiration came from this particular song by Mercy Me.

Dear younger me
Where do I start

If I could tell you everything that I have learned so far

Then you could be

One step ahead

Of all the painful memories still running thru my head

I wonder how much different things would be

Dear younger me,

Dear younger me

I cannot decide

Do I give some speech about how to get the most out of your life

Or do I go deep

And try to change

The choices that you’ll make cuz they’re choices that made me

Even though I love this crazy life

Sometimes I wish it was a smoother ride

Dear younger me, dear younger me

If I knew then what I know now

Condemnation would’ve had no power

My joy my pain would’ve never been my worth

If I knew then what I know now

Would’ve not been hard to figure out

What I would’ve changed if I had heard

What have I become? 

I’m not sure how to act or what to say in this post. I am grateful, but also embarrassed. If you know me at all, you know that I don’t really get embarrassed. So, this post is incredibly hard for me to write but I also want everyone to know what’s going on.

I have been working extremely hard at getting healthy and aiming relentlessly at achieving remission. Unfortunately, I haven’t reached that point yet. I’m sad and disappointed that I set goals and haven’t met any of them in the timeframe that I had hoped. Maybe they were unrealistic, maybe not? 

So, a few months ago we came to a fork in the road. Where do I go from here? We decided as a family that my only option at this point was to apply for long-term disability. This was a painful decision, but it was even harder to apply for it. Literally. They make it pretty difficult and word things in ways that I didn’t always understand. Luckily, I had my mom to help with this daunting task. 

On Monday, I received a letter that I had been approved. It was one of the most bittersweet moments in my life to date. I was full of so many emotions! I didn’t know what to think or what to do. Do I frame the letter? Or do I hide it? Was I happy or was I ashamed? Do I celebrate or crawl in a hole and cry? Should I be proud that I am able to provide for my family financially, or do I get upset because it’s not enough to really provide for my family? 

I’m not really sure how I should feel to be completely honest. I think I am still processing it. Never could I have ever predicted that I would need disability starting at the age of 30 and that it would progress into long-term disability at the age of just 32. 


How did I get here? 

I ask myself that question everyday. I struggle with the realization that I may never teach again. Realistically speaking, if I can’t stand for long periods of time I would be a worthless teacher. So then that means I should explore other options, right? Well, it’s too bad that lights, sounds, and my tremors prevent me from doing any of the things that I love. 

I haven’t admitted this to anyone, but I can no longer draw or paint like I once could. To have a steady hand is impossible for me. It’s like I drank gallons of coffee but without the coffee. Art is a huge part of my life. My outlet. My therapy. My happy place. My specialty. Without it, I feel like yet another piece of me has been stolen. Pretty soon I fear that I may become just a shell of who I once was. Everything that defines me is slowly being eliminated by this awful disease. I rarely wear makeup anymore, but when I do I now have to usually apply eyeliner several times before it doesn’t look like an old woman riding on a bus did it. It’s just so sad and unfortunate. I don’t want to feel sorry for myself, but I also don’t want to lose myself. 


Who is Christina Wise? 

I used to know her. Her carefree spirit and her wild ideas. Her ability to make people laugh, and her ability to comfort those around her when in need. Her ability to talk about anything and not get embarrassed or ashamed by it. Her ability to provide for her family physically, mentally, and financially. Her ability to teach, inspire, and motivate. Her ability to love so hard that it hurts. Her ability to be sympathetic to all those around her. Her ability to socialize and light up a room with her smile. Her ability to make her husband’s knees weak and his stomach get butterflies. Her ability to think she can save everyone and everything. Her compassion and her drive. Her ability to share in a good laugh or a good cry. Her awesome taste in music and art. Her passion for all things creative. And most importantly, her free spirit. 

Now, the Christina Wise that I know is angry, bitter, and sick. She’s no longer a free spirit, but more like a caged bird that is slowly wasting away. All I seem to be good at now is helping others that have been diagnosed with Lyme or think they have Lyme. I do find joy, fulfillment, and happiness when I’m helping people so I’m not complaining, but I just wish I was more. What defines me now? Who am I? I always said I will NOT become my illness but I look in the mirror and all I can see is the face of someone that is constantly suffering looking back at me. 

I am…all things Lyme.