Why I disappeared AGAIN the last 6 months

A wise friend of mine suggested I start this back up to document my journey, again, in trying to stay on top of my disease.  For the last few years I have not been fully well.  I just assumed that there is nothing more to do in recovering so I just quit trying to get better.  I didn't stop all at once.  A few things here...  a few things there.  It wasn't until a few days after my birthday this past October 4th, 2017, that I came crashing down again.  Everything started to come back.  Every haunting, agonizing, tortuous symptom of Lyme Disease that I had before was creeping back in.  It started with higher pain levels until eventually the neurological problems started returning.  I had to up my antidepressant and use the heating blanket on its highest setting to get some kind of relief.  I took supplements, did cleanses, and kept distracted so I didn't go mad thinking about it.  I had to give up on a lot of my normal activities just to save energy for things I had to prioritize.  I stopped talking to friends, skipped going places and stopped calling people because I just couldn't and didn't want to explain, again, what was happening to me.

When I tell someone I have Chronic Lyme, or Post Treatment Lyme Disease Symptoms, I usually get a few "try my product" friends who come out of no where.  I know most is all in good intention, but scientifically there is a bigger picture into treatments than cannot be explained in one conversation.  I also hear the "I heard that someone was "cured" from Lyme Disease" quote and it makes me sigh.  It's a Disease.  There is no cure.  The only proof that it has been eradicated is in an autopsy.  At least at this point.

There are SO many conflicting places to turn to for Lyme opinions and support.  Just like treating Cancer, there is no one sure fire way to choose.  Many patients are left getting a second and third opinion after doing hours of personal research just to find a method to attempt.  Mostly just to end up switching paths or tweaking the protocol a bit to help it become more effective or less damaging to the body.

Back to my story...  in January of this year, my nerve damage in my extremities was getting bad.  I knew it was not a good sign.  If I went back into my doctor they would surely put me back on IV medications.  But in March, I started to have heart palpitations again.  It was early signs of Heart Block that suggest that there was a lot of miss firing going on in the wiring of my heart.  I DO NOT want to have a pace maker.  So I just knew I had to see the doctor.

It was March 22, the day of my two beautiful daughters birthdays, (born 7 years apart,) that I was volunteering to work in our church's temple.  It was a happy and calm day!  I was caught off guard when my heart just stopped beating.  Then it spazed out for a bit only beating in partial areas. I became very light headed and felt like I was suffocating.  It started to beat regularly before I could collapse and I just sat there and stared at the computer and waited until I felt better.  I never told anyone there or they would have panicked and called an ambulance.  I knew what was going on and if it was a real problem I would have fainted completely.  I took my health seriously again after that day.

Since then, I've had that happen 3 more times.  This last week has been uneventful as far as my heart.  Thankfully I have time to take care of my surroundings before anything gets too bad, but so far I have been OK.  If I had not started treatments 3 weeks ago...  I would be worse for sure.

As for now, I am doing a round of oral antibiotics until a PICC line can be placed.  Once again I am having trouble with insurance in getting a company to place it.  Hopefully in the next week I can start that...  I will have it for a minimum of 12 weeks.  That's not bad compared to some who are on it for longer than a year so I can handle it!  I have been herxing pretty well and have learned better probiotic and detoxifying methods to help in treatments.  I eat gluten free, dairy free and sugar free...  (well, sugar and dairy is at a very minimal if any.)

The hardest part of this all is not being the sick one.  It is watching all your friends not know what to say or do.  It is watching yourself not get included in things because I can't last the whole time or go anywhere adventurous.  It is trying to not bombard your husband with all your details because there is not much he can do to help me get better.  It only makes him worry more.  It is watching your children have to give up more things and have events canceled like Easter. (Yes, I was physically not able to give them their own Easter baskets or egg hunt in the morning OR color eggs.)  I kept 3 of the 4 kids birthdays low key because I just couldn't do any more than that.  I see my children worry about my illness and they see when I am not well.  It is them not wanting to go to school because they want to stay and be with me.  It is your 15 year old daughter having a panic attack that I could die young from this.  Unfortunately, once I get the PICC line it will be a bigger physical reminder that I am seriously sick...  besides the enormous amount of pills I take daily or the amount of pain or physical limitations I have.

I have seen a bigger change, a change for the better.  We slow down and talk more about what really matters.  We hug, cuddle and spend time together.  We help each other more willingly and serve when another is in need.  We love more unconditionally and forgive more freely.  There grades may not be the best right now, but all there tests show that they are learning a ton!  We may not have the healthiest meals or even anything besides toast or cereal, but we mostly eat together.  Our testimony of the gospel of Jesus Christ is stronger.  We know that Christ can and will heal us.  He will never leave us alone.  He may not take the physical pains away but he can heal our heart and spirit.  We all know He lives and loves us all.  He knows our name.  He has given us everything we need as long as we use it.  I am so thankful to be born at this time when the True Gospel of Christ is here on this earth again.  I am SO thankful to live so close to a temple of God that I may do his works and serve Him weekly.  I am so grateful to be sealed to this amazing family for all time and eternity.  I am truly blessed and am a better person because they are in my lives.  They are my rock and keep me going.  If you are going through a difficult time, I ask you to pray and search the scriptures.  Answers may not come all at once or sometimes not at all.  Do your research and ask for guidance.  He will show you the way.

Major Dilemma

Tonight my dilemma is pain pills or sleep pills.  Oils aren't working...  Heating pad is nice but doesn't do it.  Music/ ambience is not zoning me out enough.   Augh.  It's times like this i become maddened by the pain.  Especially in the silence of the night.  I have had too many sleepless nights from this.  

Most of the nights this happens I wait out the lonely hours hoping to eventually fall asleep...  However some nights I never do.  I try really hard to keep my sleeping schedule on track.  Lack of sleep is a Lymie's worst nightmare.  By that I mean healing and restoring.  Your body actually accomplishes a lot when you sleep.  It heals, regenerates, recharges and de-stresses the body.  To someone with Lyme disease it can be difficult to deal with the typical symptoms if sleep is not regulated and the body cannot get what it so desperately needs.  

I have always been big on sleep.  My husband and kids know that this momma needs her sleep.  I am not very functional with only a few hours of it.  I have always been this way.  I absolutely love naps, resting and enjoying quiet time to recharge for a bit.  Before I enjoyed them because I was a busy body who always had things to do so it was a rarity to take a break.  I would get up and work my butt off till bed time and look forward to the Sabbath when I really could rest!  I've always had a difficult time making time for myself because I was so busy.  Lately my naps, resting and quiet time have been a way of replenishing spoons or reserving them for a big event like going to church.  

This is now frustrating to me because I have days where I feel like I can own the day and do all that I need to do.  Mostly there are now days where I lie in bed or on the couch thinking of what I should be doing.  There are even days where nothing will happen...  Not even waking up.  If you watched our families first Just Perfect video, my not waking up is just a part of what my hubby talks about.  I would be so "gone" or out of it that he would come and shock on me to make sure I was still breathing.

Through all of this I have learned to delegate.  Biggest lesson of my life...  Delegate the care of my kids, my home, my chores, my calling, my responsibilities...  The list goes on.   I have learned how to let go of things.  Time management is a huge lesson as well.  If I'm feeling well, I am trying to do only what I cannot delegate.  If I'm sick or unwell I have a list of things to do that I can accomplish in bed.  Then there is my let it go list.  It goes a bit like this:

If it's not important to our eternal progression...  LET IT GO!!!

That includes, chores, callings, homework on some nights, errands, "fancy" dinners, getting dressed today, children's entertainment, my entertainment, outings, date nights, visits to the grocery store... (btw, I haven't been in one for over a month at least!) you name it....  I drop it.  It's just not worth the stress on my family or myself.  

Simple life...  Makes me think I'm living in the wrong city!  Las Vegas may be known for its easy life but I can assure you it's not easy at all.  And can be super stressful in my opinion!  Then again...  I have been wanting a change of scenery for almost 15 years now!  Maybe even longer!

Anyhow!  I need to distract myself from this.  It's insane! 

So as I lay here listening to my puppy hiccup...  It's so cute!  I am reminded of a book a friend purchased for me to help with all this...  I think I shall read it tonight!  It's going to be a looooooooong night.  Good night ya'll.