A New Development, My Fear, & Summer Updates

You would think with school letting out that I would have more time to write and stamp but actually its been the opposite.  I continue to go to my neurologist monthly and my migraines are becoming less frequent but I still have a daily headache and the blackout dizzy spells are almost a daily occurrence.   Last month I was put on two more medications for the dizzy spells (making my current number of daily medications to 14) and was told that I still can't drive.  It's been seven months since I've driven and yes there are days that it makes me crazy!  I hate having to rely on others to take me where I need to go but this is just another part of me accepting my current situation.  I am still learning to live with my limitations and accept that there is nothing I can do.  It's a daily battle.

A New Development

I had started this post last week but saved it and never got a chance to finish it due to being in a tremendous amount of pain that left me bedridden for days.  Then something happened a few days ago that could change my entire situation and I had to tell you about it.

We don't watch the news in our house but Louie checks a news app on his phone all the time and came across THIS article.  When I read the article I burst into tears.  It's me!  I was down all week, in an insane amount of pain, my right arm completely numb, feeling absolutely defeated when I read this.  Louie told me to figure out if this doctor is accepting new patients, if they're on our insurance, and see if I can get in anytime soon.

Not only is this doctor accepting new patients, but he also is covered on my insurance, AND they are getting me in this coming Monday to get new MRI's and figure out what our next step is.  Y'all this is the Lord!!!  Even typing this I still can't believe it!  This doctor is a spine specialist and specializes in schwannomas and neurofibromas!  I truly believe that God is answering prayers right here!

My Fear

Going to this doctor also means that I could possibly have surgery which scares me more than anyone really knows.  I know that God has this but this is testing my faith like nothing I've ever been through before.  IF I do have the surgery and something goes wrong it could be permanent paralysis or even death.  I have a hard time coming out of anesthesia and the last time I went under I almost slipped into a coma.  I'm only 37.  I know if it's my time it's my time but I'm not ready for it to be my time!  There is so much that I still want to do in this life but I also know that when God's ready for me I'm going whether I want to go or not.

I know that I'm getting ahead of myself but the more I read the more I hear surgery and that fear is  bubbling at the surface.  To sum it all up:

I am excited that we might finally get some answers and 

I'm scared what those answers may be.  

The boys aren't sure how to feel about everything.  Dylan is a compartmentalizer just like his momma so he acts like everything is fine.  Any time anything is brought up about my tumors and the "what if's" Dylan usually retreats to his room and Eric sits with me and cries.  It breaks my heart but I have to be real with my boys.  I have always been 100% honest with them and this situation is no exception.

Summer So Far

Other than that are enjoying the summer so far.  Eric had to go to summer school for a few weeks but now he's all done and we are all enjoying the laid back life.  They are both gaming fools and have been great helping me out when I need it.  

I don't know if I mentioned it on here but Dylan fractured his wrist in two places the last week of school during Field Day and thank goodness he was only in a cast for four weeks and got it off last week.

I have been spending all the time I can with family, laughing, enjoying the moment, and taking tons of pictures.  I am soaking it all up.  

Time spent online has been as minimal as possible so if you don't see me commenting or posting on Facebook or Instagram that much you know why.  I'm either at home in pain or I'm out living my life to the fullest.

We went to see Incredibles 2 last weekend and it was awesome!!  I have also been reading some great books so far this summer and have quite a few reviews coming to the Only By Grace Reviews blog that I'm really excited about.

I'll keep everyone posted on me as much as I can and love each and every one of you that has been loving on me, supporting me, calling, texting, messaging, and praying for me.  You know who you are and I am BEYOND thankful for you.

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Random Ramblings

Eric (my oldest) will be thirteen at the end of March, but if you were to put your ear up to our front door recently you would think that some selfish, uncaring yelling beast were inside.  What hurts is that this transformation practically happened overnight.  I went into the hospital in November with two sweet little boys and now that I am up and around more, and more aware of my surroundings, I see things so much clearer, and one thing I see is that I have lost one of my sweet, innocent little boys.

I hate it.  I hate it SO much!!!

Everyone keeps asking me how I'm doing.  How do I answer?  I'm not good at all.  Right now, my biggest issue with this illness is all the life that I feel like I am missing.  I lose days due to being in bed, curled up into a ball, crying and praying that the pain will stop.  Then there are days like today where I can tolerate the pain better but I still can't fully function.  It's frustrating when your mind is screaming at you to do something but your body won't cooperate.  I try to focus on the positive, but there are times that I can't focus on anything and instead just wallow in my sorrows.

I had a total meltdown yesterday afternoon.  I cried in the shower for almost 30 minutes, just sitting there letting the water wash over me, praying for God's grace to rescue me from this darkness that envelops me.  I don't know how how I'm ever going to make it through!

The men in my house don't understand what I'm going through emotionally.  They don't understand the tears or the sudden tantrums.  They want to fix it but there's nothing to fix.  It is what it is and there's nothing any of us can do about it.  We all just have to ride the waves and enjoy the good days and press on through the bad ones.  With a combination of Eric and me, and what we're both going through right now, I am seeing more bad days than good.  Having a teenager in the house is bad enough but then you add a sick and emotionally distraught mom, a diabetic preteen, and a husband who can't fix any of it and you've got a recipe for disaster.

On the days that I can handle it, I get lost in a book.  Thank you Jesus for good books!

Books have been my escape my entire life and today is no different than when I was a little girl.  A good book soothes my soul and, after the book I have just finished, reminds me that life could be a lot worse!

Keeping up with my book reviews has been what has kept me sane lately though I am learning to adjust how I read.  I don't comprehend things the way I used to and so on my bad days, if I feel up to reading, I have to take notes.  Otherwise, I truly can't remember what I read.  It's so frustrating and I can't read as quickly as I used to, but I am still thankful that I have the eyes to see the words on the page.  Not everyone has that choice.  My doctor says it's important to keep my brain active and so I fight the frustration and continue to read and write.

I also can't lose weight.  No matter what I do I can't lose and am actually gaining.  I've hit 225lbs.  It's the highest I've ever been in my life.  I am so ashamed.  I don't want anyone to see me like this!  At my next appointment I think I'm going to have them test my thyroid.  I've been watching my portions and what I'm eating, been up and mobile more than I have in months, and I'm steadily gaining.  It's hard not to beat myself up.  I feel ugly and gross.  I feel trapped in a body that I can't stand.  It's yet another thing I feel like I have absolutely no control over.

Right now, every aspect of my life is hard.  I don't write this to get sympathy but to let everyone know where I'm at right now.  I told myself I would be real and honest in this journey and I intend to stick by my words.  The photo above was taken a few weeks ago when we were on our way to see some friends.  I was actually trying to smile and no matter how many pictures I took I kept getting the same face.  I try to hide how I'm feeling the majority of the time but the eyes don't lie.  I wear my emotions on my face and I hate that.  I'd rather hide.

As far as videos, I have made a few but I am embarrassed to post them.  Watching myself makes me cringe!  Louie told me to get over it and post them but right now I just can't.  Maybe one day I will but right now I'm too raw.  It's too hard.

My next neurologist appointment is February 12th and I actually get to see the neurologist himself for the first time since my hospital stay.  He's had his own family issues and has been out of the office so I've been seeing the nurse practitioner up until now.  Hopefully we can get a game plan and I'll have more to report then.

Sorry for all the random rambling today!  I'd originally wanted to vent about me having a bratty teenager and then everything else just came out.  It feels good to write and get everything out there.

I only have one thing to ask today: please pray for my sanity.

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A Year Like No Other

Normally I would end 2017 with a post highlighting everything that happened this year but this year something happened that has turned my world upside down.  I'm sure many of you have been wondering where I've been and I've started post after post, only to delete it later.  Words do not feel like they are enough to convey how I am feeling at this moment in my life, but I am going to try my best to share my heart.

All year long, Louie, my wonderful, yet pessimistic husband, would tell me that he knew something dark was on the horizon.  I told him that meant that we needed to enjoy the "hill" time before we were plunged into the "valley."

2017 started off pretty great...  

Our "hill" time wasn't anything special.  We lived day by day, enduring daily trails, but nothing major.  Louie and me are still happily married and celebrated four years of marriage in April.  We also celebrated Dylan's first full year being type 1 diabetic in August, which was awesome.  His A1C's are getting better every doctor's visit and he's growing which is such a blessing.  We watched Eric, our oldest, play 7th grade football this past season, and as Eric continues playing the trumpet, Dylan started beginner orchestra playing the viola.  Working part time has allowed me to be home with my boys when they need me and for me to participate in all of their school activities.  Life was hectic, and pretty stressful at times, but I was happy.  Very happy.

Then everything changed...

I have struggled with migraines for years.  They started when I was in junior high and have been a nuisance ever since.  I have a headache every single day but my migraines normally hit every few months.  I noticed my migraines started to become more frequent as the year progressed and every one that hit seemed to feel worse than the next.  By November, I was only getting a few days rest before another bad one hit.  

November 15th I called in sick to work, and literally couldn't even get myself out of bed the pain was so severe.  I started feeling numbness throughout my left side, but I figured it was due to being in bed the whole day.  That night Louie asked me if I wanted to go to the hospital and I told him no.  After all the hospital stays I've had the past few yeas I am done with hospitals!

November 16th I was worse than the day before.  As the day went on, I felt like someone was sitting on my chest and I couldn't breathe.  Louie came home early from work and looked up all my symptoms.  We thought I might be having a heart attack but couldn't be sure.  Again he asked me if I wanted to go to the hospital.  Again I told him no.  (Can you tell I'm stubborn or what?)  Louie left me to rest and within a few minutes I am crying for him, telling him to call 9-1-1.  This shooting pain started radiating from my chest all down my left side and fear seized me.  I think I'm having a heart attack!

The paramedics were here in two minutes and had me hooked up to the EKG in a matter of seconds.  It showed that I wasn't having a heart attack but my blood pressure was through the roof, the pain was still shooting through me, and I couldn't breathe so they took me to the emergency room.

They ran all the necessary tests, and everything came back normal but Louie and me both knew this was not normal.  All of the medical issues I've had in the past were nothing in comparison to what I was experiencing.  The ER was very busy that night and I think the doctor was trying to get another bed free but Louie requested that he run an MRI on me.  You could tell the doctor was very put out by this request since they would have to call in the MRI team (it was after midnight and the MRI techs do not do overnights) and it would be several hours before they could do the test, but Louie insisted and the doctor left in a huff.  I didn't see anyone for hours.  I just laid there in the hospital room wondering what was wrong with me.

November 17th I ended up getting two MRI's in the wee hours of the morning and the MRI's did show something, so they chose to admit to the hospital so they could do further testing.  The look on the doctor's face was one of sadness when he told us that it looked like the beginning stages of MS.

  

I waited almost 24 hours to get into a room and was immediately ordered to have another MRI done.  I was put on pain medication to help with the radiating pain, my atypical migraine, and extreme dizziness and nausea.  

I was in the hospital for almost two weeks, and even celebrated Thanksgiving 2017 there.  That part was so hard for me, but I got to eat a delicious pumpkin cheesecake from the hospital cafe, and get some cuddles from my family.

The rest of the time was insanely lonely.  I slept as much as I could because when I was asleep I didn't have to think.  The doctor's told me that they atypical migraines were due to four lesions on my brain.  It was also why I was having stroke-like symptoms, even though I never had a stroke.  I now sometimes say things backwards and I will completely forget what I am saying or what was said to me.  From what one of the tests said, my brain like it is right now, is one step up from a dementia patient.  Not something a 36-year-old wife and mother wants to hear.   

There was also something in the third MRI that rocked us all to the core: they found multiple tumors all along my spine.  They are called schwannoma's (or neurofibromatosis) and they referred me to a neurologist, who refused to see me for days, and then didn't really give us any information other than this was going to be a long road ahead with most likely surgery and possible chemo and/or radiation depending on if the tumors are cancerous or not.  To know that tumors are growing in my body is bad enough, but then they say surgery!  My body does not do well with anesthesia at all.  The last time I went under they almost couldn't get me out!  Plus, where the surgery would be: at the base of my skull.  One false move and I could be paralyzed.  Such scary thoughts!

How 2017 ended...

It's been over a month, and I still have trouble walking by myself, and am in constant pain.  On my decent days, I can sit up and write, like I'm doing right now, but other days I disappear into Netflix/Hulu binges and try to forget everything that is happening to me.  If I am able to venture out I'm usually in a wheelchair or using a walker, due to the extreme dizziness caused by the tumors.  I feel like I'm in a nightmare that I can't wake up from.  

My family has been absolutely amazing and I have realized through all of this who my true friends are, which has been almost as painful as the tumors.  To realize that people who you thought would always be there for you, and haven't been there at all, really hurts my heart.  But I can't focus on that.  I have enough that I am struggling with to put my focus on those toxic relationships.  So, I am focusing on those that truly care about me and about the next step.  I have also been trying to stay off of social media for this very reason.

I saw a neurologist PA and all they're wanting to do at the moment is treat the migraines, even though the tumors are causing me tremendous pain, so we are currently seeking a second opinion.  Truth be told, I am petrified about 2018 and what it's going to bring.  Usually I look to the new year as a new beginning, a fresh start, but this year I don't feel that way.  For the first time in my life I am scared of the future.

Louie wants me to document my journey, so I will be posting on here regularly, and plan on starting to vlog on my YouTube page as well, which I will link up here.  He doesn't want me to bottle everything up inside, which is my tendency.  So, that's my only New Years Resolution: to document my journey: the good, the bad, and the ugly; and trust me, when you see me with no makeup you'll see the ugly. ;) 

Have a safe and Happy New Year!

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