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.

Frustration and Lyme

I just took my daughter to school and I am back in bed.  I am loosing my spoons.  The last two weeks have been one crazy roller coaster ride.  Even though I am off my IV antibiotics this oral Doxycycline is the pits.  It seems to be doing the job of killing the bacteria because I am herxing worse.  I take it twice a day and for some reason I feel toxic 24/7. 

I am so frustrated lately.  Today is one of those bucket is overflowing, but not of grateful things.  I want my old life back.  I want my old self back. 

 

I attended a funeral Monday night and I couldn't help think that I am still alive and should be thankful for that.  My Lyme was caught, diagnosed and treated before it could do further damage.  I should be grateful...  I am, its just hard to keep up the positive- I can overcome this- attitude when I feel like this nonstop.

This past Sunday my beautiful primary children at church had a presentation where they shared what they have been taught all year.  I skipped my treatments the night before and morning of so I wouldn't be so fatigue.  It helped a bit and I pushed through the day.  I was actually quite proud of myself! 

...............

(I just paused to think of something and fell asleep!)

I just woke up at 1pm.  I never took the boys to school.  Couldn't wake up to do it.  My whole body hurts and my limbs have been numb for almost an hour.  My chest is in pain and feels like its being crushed.  I thankfully can walk today but hurt all over.  I can barely eat and feel so sick.  My head is going to explode and my ears hurt so bad.

I was warned that the cooler weather would bring symptoms back for my rheumatoid arthritis...  Yea.

Emotionally I am struggling.  I have to admit, it is hard to be strong...  I do it for the kids and for myself.  I have a lot of responsibilities and I can't give up.  Some days are good but most are bad.  Today is very rough and when emotionally you don't feel strong enough it makes it a million times harder. 

I am so frustrated!!  I don't know how I am ever going to overcome this if I can't see a doctor out side of Vegas.  A friend of mine's daughter has Lyme and sees the same doctor as me.  They are a few steps ahead and are also looking out of state.  Band-aid approaches are not the answer.  Lyme is taking our quality of life away.  I have little family life, very little socialization with friends, (if any @ church,) and really no life of my own at all.  I use all my "spoons" to my responsibilities and leave none for me.  Its driving me crazy!

I am completely sure that on Mother's day this year I lost a friend already from texting while on heavy pain meds...  They should put a warning on prescription bottles!!  And who knows how many others think I have abandoned them or gave up on our friendships...  This is not the case.  My mind is degrading and my body wins most of the time and I shut down.

I just keep praying, and crying out to the Lord to help me find the answers I need or to help me raise enough money to get treated properly.  If I didn't know I had Lyme disease I would be in the hospital right now...  But its pointless.  They can't do anything for it that I'm not already doing or they don't know how to treat it. 

I feel useless, pointless, a huge burden to my family and feel like if it weren't for my kids I would have given up a long time ago. 

This is a hard battle.  So very hard.  To have to be strong emotionally every day.  Just to get my kids off to school every morning makes me drained for hours.

I was a very busy body and loved to work outside on my yard.  I used to be a very active stay home mom and played so much with my kids.  Now I curl my daughter's hair and I have to nap for 3 hours.  Today I took a shower AND took my daughter to school...  That drained me and I ended up not taking the boys to school because I passed out until 1pm. 

I want so bad to go on a road trip with my family to forget it all.  I want to hike, swim, window shop, have girls nights out, play a sport, play with my kids, attend more than just Sunday church meetings, to have a real date night with my hubby, to be able to do house work with out it knocking me down for hours.  I am so frustrated.

I will keep on going, hoping for a funding miracle...  A cure would be nice but we all know how that is.  I have to say that I am thankful that so far I have been able to give advice to at least 4 others about Lyme disease.  It is great to know that I can still help others.  It gives me another purpose for all of this.  I was diagnosed with Celiac's disease 15 years ago...  I vowed to help others with it.  I was diagnosed a few years ago with clinical depression...  I vowed to help others but have not been as vocal.  Now that I have Lyme and know it could be the cause of my clinical depression...  I am not going to be quiet any more.  I am an extreme introvert and am happy to be at home in my own little world.  So all of this Lyme awareness is a new venture for me.  To be out in the public I have only one desire, (ok, two, besides wanting better treatment,) is to help others.  The more we can help each other the better.  It is how I can be an instrument in the Lords hands through this ravishing disease.  

6 weeks in...

Today makes it 6 weeks.  I should be happy.  But I feel horrible...  again.  The last two weeks were so much better!  Then BAM!  Back to how I felt before treatments...  NO, it's even worse.  I'm not even on the Tindamax right now.  This is ridiculous.

Monday I met with the Doctor's PA, Stephanie.  She is great.  I really love her.  We went over test results.  Only one thing changed from the previous week...  My white blood cells are dropping.  I can only be on the Rocephin another week and will have to give my body a break.  I will infuse next Monday and will just maintain my PICC line at home for a week.  Then we can see if I have any flare ups and can decide what path to take next.

I have been trying to put together something for my fundraiser but my brain is not cooperating.  I cannot function and the pain is unreal.  I am trying to focus on breathing while listening to soothing music.  I am not sleeping well again.  My appetite is shot.  I really want to give up or crawl in a hole and give in.  I know I won't...  Just having a moment of weakness.

My kids have been home from school sick.  All of them.  We are having problems in this house and for some reason our family has never been sicker than the 2 years we have lived here.  I think it is either in the air ducts or we have another rodent issue.  It's embarrassing to me to think maybe some of this could have been prevented if I was just well enough to do something about it... or maybe not.  My house is a disaster, the children run wild, (when they're not sick,) and nothing is in order.  It's too much for me right now.

Anyhow, It's taking me too long to type this.  I need to go lay down if I'm going to keep this broth down.  I feel like I'm about to pass a kidney stone again...  Lovely.

Spiritual promptings

Three entries in one day! 

As I am lying here at almost 11pm, I can't help but feel a bit down from how hard today was to bare.  I had to skip my presidency meeting.  It really was an emotional time for me.  I am so excited to get back to something normal again.  Even when I discontinue the IV meds I will still have to take it one day at a time to bring my activity back to what it used to be. 

I still have to have my sinus polyps removed and that's another week to two weeks rest.  I cannot have the surgery until my immune system is stable and I am a lot stronger.  I may wait until after my birthday in October so I can have a break.  My ENT said to me back in January to keep looking into why I'm sick but to not wait longer than 3 months before I have them removed...  Well, that wasn't possible.  So hopefully they haven't grown.  We are about 90% sure they will be benign.  Either way, a biopsy will be performed before the surgery... Both requiring me to go under anesthesia in the hospital.  My immune system must be be strong enough for the recovery.  Also, all areas of the head, especially the nose/sinus region are major bleeders.  That's why I must be better, especially with a low white, red and platelet count. 

So, back to me having an emotionally hard time today.  It was the hardest missing our meeting.  It is SO frustrating not being able to go.  I want to be there very badly.  I know I have an amazing group of sisters in the primary with me and are running the show while I am gone.  They are amazing.  I am truly thankful to each one...  I am inspired, blessed, and feel the love each one has for their calling.  I am nothing as a president without them. 

As I lay in my bed, wishing I was there at the chapel instead of here in pain...  I said a little sobby heart-felt prayer.  Nothing big or formal, just a plead to Heavenly Father.  I really needed cheering up.  All I asked for was that my great friend stop by after the meeting to say hi.

After I pleaded this I was swept up in mommy duties, (which was basically me telling my younger two to stop being loud and playing on my bed since it was making things worse for me,) and never thought to call her to ask to come see me.

My husband was picking up the older two from their church activities and they always beat daddy to the door, knocking on the window.  I hear a knock and tell my younger two to let in their brother and sister.  My daughter yells out, "Mom!  It's your meeting!"  I'm thinking she is crazy and I ask her who is it.  She repeats her original response and I then say it must  e someone from the meeting or from church.  Thankfully it was because one of my two opened the door.  (Yikes!)

It was a prayer answered!  There from my bed I could hear my friends voice!  I couldn't believe it!  I yelled out for her to come into the bedroom.  During our conversation she told me that she had drove toward here but didn't have anything to bring me so she kept going past.  She aslo expanded that something made her turn around and stop by anyway....  (can you see the tears in my eyes right now!)

I am thankful for so many blessings in our lives.  More importantly I am blessed that I have so many friends who act upon the small promptings of the spirit.  We all are truly instrumental is Gods work and are one way God answers our prayers.  This prayer was small but big to me.  Very big. 
I pray that I may always live my life that I may be in tune to the promptings of the spirit so I may help answer the prayers of His children.  He truly does hear us!

Entry on 06/30/14 from GoFundMe - Lyme's sad news...

Its 2am. I'm all cleared to go in a few hours. Yesterday, (Sunday,) I learned something very important. I think this will be my last post for a while until I know more of what's wrong with me. I'm tired of scaring my kids, of being in need, of being weak. I learned something very sad and I need to process it for a bit. I have a follow up appt later this week and will decide, by myself, what to do then. I just need a break from all this. It sucks... Sorry for everything. Thank you for all your love. It has meant a lot.

GoFundMe account established 06/12/14 - the LYME LIFE

It's amazing how fast things can come tumbling down when you hear "You have Lyme Disease."

Some of the first comments I heard from others were, "I knew someone who died because of Lyme Disease." Can you imagine my reactions?

I have heard of it before but never quite understood how horrible this disease can be if left untreated. The symptoms mimic other diseases. So if by chance you test for Lyme, you are one of the lucky few who will get a diagnosis.

Rheumatoid Arthritis, Multiple Sclerosis, Fibromyalgia, Lupus, ALS or Lou Gehrig's Disease, Chronic Fatigue maybe even Alzheimer's and Autism... Just to pull out the more common misdiagnosis's.

I am one of the lucky few with a diagnosis. But not lucky as much as you'd think. You see, I discovered it after my 4 week-ish window of oral, no-biggie antibiotics CURE. 

Testing and treatment for Chronic Lyme Disease, (and oh, don't forget about it's co-infections,) can be over time added up in the  tens of thousands, (for some around half a million). Not to mention the expenses of travel, lodge, food.... And don't forget to include care of my 4 young children while I am away. A good baby sitter isn't cheap these days!

We have a wonderful family who has done so much for us and many friends near and far who have gone above and beyond to help. We are so thankful and are deeply grateful for all you have done.

As far as my care, our family has hope to go to Envita to help us in our journey to get my health back up to as close to normal as it can be. They are located in Scottsdale, AZ.  Check out their site if you like.  You can learn more about Lyme Disease as well as Chronic Lyme Disease and maybe even help someone who you may think is suffering with an unknown diagnosis.

http://www.envita.com/conditions-we-treat/lymedisease

Although I have a lot of support it will be difficult and the costs will add up. 

Everything from our GoFundMe site will go towards labs, treatment, travel and any other expenses occurring from the care that will be needed to help our family.  This is a life long battle we will have to face until they find a cure.  You can go to my site and donate here:

http://www.gofundme.com/a8w6xg

I want to send a heartfelt thanks to everyone in advance. Our journey has just begun and you play a huge role in my speedy recovery... No matter how you can help it will be appreciated!

We love you and may God bless us all!