Little Shop of Horrors

Yep, it hit me today.  I was reminded it takes about two weeks for my body to start Herxing.  It started just a few days shy.  The whole day was ridiculous for fatigue and pain levels. 

We were invited to see Little Shop of Horrors at the Meadow's school tonight so I had to rest all day for it.  Only thing is I started to feel a big crash coming.  We were almost late because of me...  I almost stayed home.

The play was fantastic!  My brother-in-law and my sister-in-law are amazing at what they do and I love coming to their shows.  The kids were great!  I was perfectly distracted the whole night!  It was wonderful!  

I managed through the play well, even when we went out for dinner.  Now, my body is crashing.  I'm shaking so bad from the excitement!  The pain is intense enough to bring my GI tract crashing down and I feel like a voodoo doll right now.  (If you only knew how long it took me to type this.).  I know I will sleep well tonight.  Glad my schedule is clear in the morning...  This won't be pretty tomorrow.

Great day!

I wasn't going to post because it was a normal day.  But that's just it...  It was great!  I took my antibiotics this morning and went through the horrible herx but it only lasted for one hour!  The rest of the day was great!  I helped my older two with their science projects and did a few chores around the home.  I was in a manageable pain level and I'm so thankful for it.  I was able to see our friends who have moved back into town after being gone for almost 10 years.  I'm so happy to see them so close now!

I have big plans for next week but I need to sit down and schedule it all out.  Doctor appointments and a few nights out before I get any worse...  That's if I do.  If I don't then bring on the fun the week after, too!  Tomorrow we may take a day-cation with the kiddos since Sunday is his only day off.  We will see.  It's all how I feel and when I can get out of bed!  ;)

Oh!  I signed Bryan and I up for a home buying class Wednesday.  I hope they can help us out, or at least get us on the right path.  We haven't even thought about buying a home after losing our Rhino Linings business, (truck bed liners that we expanded to industrial applications,) as a sole proprietor.  When the market crashed in 2008-10, we lost everything...  Our business, including mobile rig, our own car, our home and most importantly our credit.  It's been a while so maybe we are ready now.  It would be nice to move into a home where we could stay in it forever if we wanted.  I'm done with moving and changing kids schools.

Well, I just took my pill and want to sleep before the worst hits...  I haven't slept through a herx yet but maybe I will tonight.  It would be nice to get some solid sleep.  Good night y'all!

Three days into treatments... For the second time.

I am not so sure I made the right choice to go with oral antibiotics first.  I know they make me herx so much more than the IV Rocephin...  Which is good and bad.  

Good because Herxing, like I've said before, means I am having a die off of bacteria in my body...  Or Lyme bacteria, that is.  That's right.  Kill those stinkers!!

Bad because Herxing is not good in large amounts.  It is basically your body reacting to a massive amount of toxins being released at the same time.  It is not only painful, nauseating and horrible, but if strong enough can kill someone.  I will be fine in my case, mostly because my doctors knows better to take it slow on my body.  So if oral Doxycycline is too much, then we will go with IV Rocephin.  

 Today is the worst so far, which is to be expected.  Horrible stomach pains, headache and nausea.  I hurt even more throughout my body and it stinks.  It's not even the end of the first week yet, too!  I think I forget how hard this is until I do it again...  Who wants to remember this!

Anyhow, I just thought I would let everyone know that I am managing well and even pushed my way through a few errands today with my 4 year old.  She is so sweet and we had fun.  She would see that I wasn't well and take my hand and help me along.  She asked me a few times to pick her up so she could hug me all better!  So sweet!

Well, I think I'm going to put on a movie and take a pre-bedtime nap.  Till next time!

Lyme disease treatments and MTHFR...??!!!

My appointment with Stephanie Wallace at CIDS, (Clinical Infectious Disease Consultants,) was Wednesday morning.  It went great!  I was so afraid to be put back into a PICC line right away and thankfully we decided to go with oral antibiotics.  Doxycycline again and I should be picking up my prescription Thursday morning as soon as it's ready.  

Stephanie and I talked about all of my symptoms and she questioned a lot.  I told her about my list of symptoms lately...

*Fatigued all day
*Active and awake 6 hours max, 9 if resting all day 
*Pain levels high, makes me ill and unable to eat
*Nighttime tremors for hours, awake and asleep (husband has to hold me for hours just to ease them a bit.)
*Insomnia
*Unable to focus
*Speech issues
*Incomplete thought processes
*Getting lost
*Memory loss
* "Sleep of the dead" trying to wake me
*Wounds healing slow
*Infections happen very easy
*Intense migraine like headaches, lasting a few minutes then fade to a horrible headache
*Always have a headache
*Loud noise and light sensitivity 
*Depression
*Pain anger
*Joint and bone pain

So after going through the list and talking about each one, she recommended a few tests to look deeper.  

The first is to get and MRI done of my head to see if there were any lesions or something that could be causing the migraines, headaches and tremors.  

Next was to run a genetic panel, MTHFR...

I only remember her explaining about methylation in the body and how it deals with Lyme.  I am reading more about it and I'm really intrigued.  I cannot wait to research more.  This article/blog goes into it so much better than I could explain.  It talks not only about Lyme, but ADD, Spina-Bifida, Autism, frequent miscarriages, bipolar, MS, and a lot more conditions that deal with methylation in the body.  Please read it!  Oh, and then come back and finish here!!!

http://suzycohen.com/articles/methylation-problems/

After going over this we then discussed to recheck my heavy metal levels and my basic blood work to be done again.  We will be able to check all this info in two weeks when I return and hope to know more about what is really going on inside me.  I may or may not be on a PICC line then.  Test results will tell as well as my progress.  The great thing is knowing she doesn't just want to treat the Lyme, she wants to help my body be its best so it can maintain the disease for longer on its own.  

I'm starting to believe she is seriously a diamond in the rough.  Not that I didn't think she was great before, she is amazing, but I have only found doctors in Arizona to be "Lyme-literate" enough to be worth my while.  I am wrong, again.  She is what I've been praying for.  As I've said before...  She really cares.  I am so thankful for her and for my Lyme community who has become my support group in educating myself.  I won't name them all, especially since I respect their privacy, I really just have to say how wonderful it is to have help and support.  

Anyhow, our home is being "shown" tomorrow and because of this I cleaned...  Too much.  I am SO sore and very much done for the day.  But I can rest tomorrow and be ready for the weekend off with the kids!  I need to do a bit of party planning though...  A 50th wedding anniversary out of town to help plan and a triple birthday party back in town all coming up next month just a week apart from each other.  Oh, boy!!  It will be fun!  Celebrating is a great distraction from all the treatments I will have coming up.  So, bring it on!!

Doctor appointments give me nightmares

Horrible nightmare...  Can't sleep.

So the last two days were fun...  If you want to call it that!  Monday I was horribly depressed.  I haven't felt that terrible emotionally since before I was treated for depression.  It was bad.  I knew to sit on the couch for a bit and just listen.  I had already said prayers, studied scriptures...  I was listening.  It was a battle in my head that was going on as to why I was released.  Why I was being replaced.  

Was I not good enough...  No that was a dumb thought...  I was sick.  If I was not good enough I'm sure the Lord would have wanted me in there longer to learn something!!  Lol!  

I had to fight off the feelings of incompetency that I have been dealing with lately.  I didn't feel better until Tuesday morning.   I had realized that being released had just acknowledged that I was sick and could no longer handle everything this way.  Once I was able to identity why I was really so sad, I was able to move on.

I'm still so incredibly sad.  I will miss the work, the calling, my friends constant contact and friendship, the kids, the blessings, the struggles, the fun.  But I am now ready to take on me.  

I'm a bit scared for tomorrow, (well, today since it's almost 2am.) Before, it was a fear of the unknown.  Now, it's I know what the crap I have to face and I don't wanna!  It's not easy.  I had a huge support system before.  Now it doesn't feel this way.  I guess this time around it will be a welcome to your new life...  Get over it and move on, but still be expected to be "normal."  I hope that is not true.

In a way, I agree that this is what I will need it to be to mentally survive this again.  That's the part that scares me.  I have to stop myself everyday from thinking how this is the new norm for me.  Maybe if I had been born with it or it's been over a decade doing treatments I would have more courage and not let it get to me.  But I'm being real here.  It scares the crap out of me.  Herxing is not fun nor is it a walk in the park.

I have learned to face it each day with perseverance and knowing that I need normalcy in order to get through.  This time I will make it a better point to be a part of the lives of my friends who stuck through my first year of sickness and treatments.  They are my true friends and my rocks.  No matter what is going on in their worlds, they were there for me....  And still are!!  I don't want to talk about treatments and meds and how I feel.  I want to hear their stories, adventures, accomplishments and failures. 

I know what to expect this time around and I pray I can be stronger.  I pray I can be the mom my kids need me to be and the wife my husband needs, too.  It's the relationships in life that matter most.... 

I'm thankful for my trials for they make me a better person.  

Putting aside the bigger picture for the moment...

I was released today as the Craig Ranch Ward Primary President.  

So let's be honest here.  I should be typing how thankful I am to serve, how wonderful it was to be amongst other spiritual giants, and that I'm grateful for all I've learned.....  It is true.  But, it's not what I'm feeling right now.  

Let me put aside the bigger picture for a moment....

Although I do believe and feel these things and so much more with all my heart, a part of me is angry.  Angry that I did not have the opportunity to have this calling when I wasn't sick.  I feel so much like I've let Heavenly Father down by not being able to do my calling.  I was supposed to be in this calling at this time for a reason but I certainly did not expect to be sick again this soon after my last treatments ended.

I know, I know.....  All the responses, I can think of have been said to me. I did all I could.  I was a great president.  I can now focus on my health and 3 of my children with their needs.  I can prepare for the next stage in my life now.  It's very kind and I'm so thankful for all the kind words.  But I feel horrible.

I am so mad that I have Lyme.  I'm so mad that it is inside of me.  I'm so mad that I cannot explain exactly to others what I'm going through because I don't even understand it.  Im sure my husband already thinks I am a huge loser for not being tougher with everything.  For not trying harder to do more around the home.  For not getting up with the kids every morning.  For not going to the grocery or anywhere for that matter unless I absolutely have to.  I feel like such a failure to him already.  He deserves so much better and I'm so sad for him.  He has to take on all this and I don't even help.  At least that's how I feel. 

I felt the same in my calling.  I had to delegate so much because I know what was going to happen.  Then I felt horrible every time after doing so, thinking if I just did it Heavenly Father would provide a way and take care of the rest.  This may be true and now I will never know.  

I know I did my best for what I could do.  I know I could have done more or been better, but I think deep down we all feel that with the things we do.  I know I'm being hard on myself, but I'm just so mad at this disease.

I know I'm not going to be the same me as I was before that camping trip.  I know even after treatments that I wasn't going to be the same, maybe something pretty close and I was ok with it.  But for some reason, I got sick again...  I was told at least a year before POSSIBLY needing more treatments.  But not THIS soon.  

Today was just a bit surprising seeing as my last request was for another counselor...  But the Lord knows what he is doing and I trust in him.  I am thankful for the release of duties, but mostly for the burden that I carried as the one spiritually responsible for all who fell under primary...  It was a bigger surprise to me as president than all the "duties" I had.  I now have a greater respect for anyone in a presidential calling as to what is really placed upon them when they are called.  

I love my friends who served with me in my presidency, they were my rocks.  The Lord places certain people in our lives for a reason and I'm glad he did!!  I am so grateful for all our primary children who showed so much Christ-like love!  I am thankful for all my leaders and teachers who serve these kids with all their heart!  They are awesome examples to me and I'm grateful for all they do!

I will miss being in the primary room, and will cry every time I walk by and hear them singing.  I will pull through all this soon and will be ready for my next calling in no time.  I just need to make it through this week....

Organized crap is still just CRAP!!

Augh!  Today, (Saturday,) I woke up to a disaster.  I watched it grow all week, too...  This morning it had reached an all time low.  My home has not been under my full care for the last year and a half...  AND IT SHOWS!!  I mean, there is stuff everywhere.  Every surface, including floors had something on almost every square inch of it.  I am over my head with it all.  Now, I know a lot don't mind living like this...  I can't imagine living through the depression and holding onto everything, or experiencing a loss, or having a mental disorder with attachment issues, or whatever else there may be.  I just can't keep on top of my families hoarding issues.  My kids come home with the weirdest things in their backpacks, they keep everything broken, they pull stuff from the recycle bins, they have craft stuff galore, toys that are never played with, and paper treasures of all sorts.  It's really ridiculous!!  My husband, bless his heart, has kept a lot in our garage and its a maze to walk in there each time.  Now, granted, I just throw it in there if it's his...  (He builds stuff and has a lot of laser tag, electronic, misc tools, chemicals, just stuff that he is really creative with...  It's just everywhere!). 

Pinterest has brought me great ideas.  If I had a dream fulfilled it would be to have a minimalist lifestyle.  I have decided to get rid of SO much!  I am so excited!  I know it will be hard on my family, but they will have to realize that the stress of taking hours to clean a room is that way because of the stuff they have.  If they want it to be easy than why have it all?  Imaginations are better explored, family time for fun is more abundant and stress is reduced!!

I wonder sometimes if it's all worth it....  To have so much, "crap" in our life that is weighing us down.  I don't mean to get rid of it all.  Just most of it!!  Especially when I run into it because it's misplaced or in my case last night at 1:30am, sticking out because it has no home.  Grrr... Stinkin suitcase wheel.  I have a matching cut on the other shin from two weeks ago.  It seriously was very painful.  I don't ever want to feel the pain of a broken bone!!  This was bad enough!  Don't worry, I cleaned up all the blood for you...  You're welcome!

I look forward to easier home life, especially for me since everyday I feel like the maid.

On another note....  My kids could use a little bit more responsibilities and better examples from mom and dad.  Chore charts need to be redone, assigned out again, and followed through with parents supervision.  

This is a year for our family.  A year to get rid of the crap.  A year to put our energy to what matters most.  

I am not sure who said it, but:

"Don’t ever get so busy chasing the wrong things that you miss enjoying the right things." 

Sinus Surgery and Lyme battles

First four weeks of the new year down and I have done well so far!  I have shredded three kitchen trash bags full of paper, sorted out my whole room, and started donating more of our unused things.  Considering I was down for almost two weeks of that to recover from surgery, I'm pretty much on a good track!

My surgery went well.  The results came back unexpected but noting that would never resemble cancer so for that I'm grateful!  It did show Cholesterol Granulomas and they will more than likely come back.  They are usually in the spaces of the inner ear so for mine to be in the maxillary sinus I was a "rare case study" to look up.  I'm not looking forward to that again and hope it won't be for many years to come if at all.  That was NOT fun.  I was on pain pills for a solid 5 days.  I took myself off of them and only used them if I couldn't deal any more with the pain.  I have refilled my Rx but haven't used any more yet.  I almost did today, but I braved it out because I had places to be.

My calling at church is going well...  I don't feel I do enough and tomorrow plan to reorganize my next 6  months to prepare for the worst and hope for the best.  I need to restart myself...  Reading scripture s every day and studying them.  My prayers need to increase and so does my temple attendance.  I need all the help I can in my calling and I don't mean just spiritual.  If it weren't for my amazing presidency, I would be lost.  They are my rocks.  I can count on each one and they go above and beyond without asking.  I used to be upset at myself for not thinking of the things they do, but I have to remember my brain is not what it was since last October.  Neither are my cognitive skills, my reaction times and my ability to jump back and answer quickly to questions.  

I am anxious for summer and warmer weather.  My body aches consistently and my headaches are nonstop.  My fatigue levels are high and my sanity is low.   It is so difficult to explain the mindset of chronic pain.  It can be so "dark" when you are at a higher pain level but knowing that it will pass is really what gets me through.  I know for sure it's when I do my most praying.

I am going back to see my Infectious Disease doctor on Wednesday and then we will decide where to go with this round of treatments.  My guess is we won't go to a IV at first and will try oral antibiotics with blood work and a bit more testing to make sure I don't have any other secondary infections.  I really am hoping to go against the PICC line....  Having to go in EVERY day by myself for 20 minutes, (yes, it could be worse!,) is really annoying especially when the drive is 20-25 minutes one way.  I will deal with whatever comes and cannot wait until I am back on track.

This time I did not last long in between treatments because my immune system dropped.  We have had employment issues, a death in the family, a pending move based on our landlords status with the home, and my heart and health issues.  All of this plus the stress from the holidays and life in general with 4 children has allowed Lyme to take over again.

This time it's different.  I know what it is and how to work the "Spoon Theory" into my daily life.  I know how to rest and save energy for upcoming days and I know how to plan for recovery days.  I also have learned to delegate and always have a back up plan for everything in case I am "out" for the day unexpectedly.

I have lots to do for my fundraising, since I have not lifted a finger since before the holidays.  I am going to update my GoFundMe page and eliminate Envita.  It will never happen.  I believe they are too expensive anyway.  I just really liked what they had to offer.  So it made me think.  I can offer some of that in my own home with a few minor adjustments.  The plan for now is to purchase a RIFE machine and hopefully an ozone sauna.  Once we buy our own home I can look into an infrared sauna and a few other essentials.

I am excited for February and what I have planned in store.   It may not seem like a lot to you, but to me it is.  Here is to month 2!!!

2015 Day 1

Woke up today amongst friends and family.  It was our 3rd time attending the overnight New Years Party at our dear friends home.  We are so thankful to have such wonderful friends!  Our children get along so well and it's always good to catch up.  This time our gathering was more of a distraction from life.  Whatever you call it we enjoyed our friends company.  My kiddos especially love having a sleepover with their cousins so it makes it even better for them.  

During the night we wrote on wish paper and lit them away.  It was fun and a special memory I know we will all remember.  Especially once I upload the pics!  My sweet children wished away.  My youngest for her to always be happy and no one is mad.  My youngest son, to play the Xbox 360.  The other one wasn't interested in taking part, like daddy.  And my oldest wish just broke my heart.  She wished for a cure for Lyme disease.  Poor kiddo.  She is sweet and needs wishes of her own.  Not worries for her mothers health.  She has seen me become sick since she was 10. She has known of all the doctors visits I have been to to find out what's wrong with me.  Hospital visits, road trips to doctors in other states, days spent collapsed on the couch or in bed from fighting exhaustion too long.  She sees me take my pile of daily pills and knows I'm still not better from the things I just can't do anymore.  She feels the stress from it and I wish I could lessen it for her.  I try so hard not to complain anymore and tough out my fatigue and pain....  She just knows me too well.  Such a bright kid.  If she were younger it may have been easier for her, to never know anything different, or to hide it from her better.  (It also doesn't help when you find out that her school had her doing a plague project on Lyme disease.) 

As the first day of the new year drew near to an end we arrived home and I walked into our mess.  This last year has shown in my home.  New pets, new toys, new clothes, new stuff and nothing has left.  My New Years resolutions are to be a minimalist.  Live with less.  Get rid of 70% of our things and use only what we NEED to survive.  Well, there will be a bit more than that kept but I can not imagine next year if this doesn't stop now.  It's ridiculous!!!  I never imagined my home so full of things that I am responsible for taking care of.  I am considering a yard sale but I don't know where to put all the stuff in the meantime before I sell it.  My garage is my hubby's domain and it is x10 worse than inside!  I can barely get to my washer, dryer and deep freezer...  It's insane!  

Well, I am ready to go and once I awake I'm starting with laundry and taking down Christmas.  I need to go through that, too.  Christmas bins full of weird crap that I don't use...  For why?  Silly girl!  I am going to stop at these two until my surgery recovery is over.  Then it's on to one room at a time.  I'm so excited I can't even sleep!!  Maybe I will reward myself with a fresh coat of paint in the master bedroom's accent wall.  That is if we don't move soon! Sheesh, I hope not.  At least it will be easier to pack!

End of 2014

I'm so glad to get this year over with!  I had hoped to be well in starting the new year but my Lyme seems to be relapsing already.  Since being in the hospital my health has crashed.  I constantly have headaches and borderline migraines every day.  I wake up with them and try to go to bed with them.  My bodies pain level has spiked and I am on edge dealing with the emotional response to it.  I hurt everywhere.  The cold weather does not help and thankfully it's cloudy outside or I would be in my dark room and not on the couch with the kids.  Today I lost my sense of taste.  I have no idea why.  Which stinks because I plan to feast tonight with friends.  

Last night I held a presidency meeting and I could not focus nor complete a thought to plan the next step of action.  I had horrible thought block.  I sat down afterward and tried to gather my self and could not.  I barely fed the kids and then put them to bed.  I decided it was time to take my pills that help me sleep and unfortunately it did not work.  I was up for maybe 3 more hours in a drugged up state.  I threw those pills away.  I live in this internal hell and at night all I want to do is sleep.  My body just spasms and twitches uncontrollably and I cannot relax.  My mind is clear but my body is wild.  

I have had a reoccurring dream where I am having a full blown seizure.  I always wake up completely exhausted from the dream and emotionally drained.  I think I am scared that my condition will come to this without treatment.  I am current working with my insurance company to cover my past procedure.  

I have to go to the store today.  I may send my husband.  It's Las Vegas and its 40 outside.  Plus when I venture out I must tough it out, put on my "stick it to Lyme" attitude and once I'm home I can crash for a few hours.  Sometimes it's just not worth it.  Preserving energy sounds better every second.

My blood sugar has been running low for 2 weeks now.  As low as 56.  I eat properly, having glucose when it drops and eating proper carbs and protein to carry it on.  Sometimes it will only raise it to 80.  I haven't been over 100 in a while.  Even on a big meal.  

None of it makes sense.  My hospital visit showed the same test results.  One of my heart valves is only operating at 50%.  Everything else looks great.  Perfect even.  I was once again told how strange it was for some one my size.  (Let's just say I'm under 130lbs.). 

I plan to declutter my home in January and February.  In case we have to move it will be easier to pack.  If we stay then I can plan to paint and maybe set the home up how I really want it.  There is stuff everywhere.  I see so much coming in and nothing leaving.  It's driving me mad!  My bedroom is packed in and I'm about ready to absolve my office.  I never use it.  I will be happier with less.  Much less.

It will have to wait until the end of January for me to recover from my surgery.  I was told 7-10 days to recover from sinus polyp surgery...  Thankfully my mom is taking it off.  My hubby is taking care of me the first day and my mom for the rest, while he is at work.  I'm not looking forward to it but will be glad when it's over.  Then I can start on my back.  I may or may not have surgery to help the scoliosis.  It has always caused pain but in the recent years, and 4 babies later, I have had increased pain in my hips, right shoulder blade and back in general.  I lose feeling in my right arm a lot and often have a hard time walking from the hip problems scoliosis has brought.  My discs are nearly squished in certain places and with age will only get worse.  I will see the doctor soon to discuss it.  In the mean time I will visit my Infectious Disease doctor again about my recent drop in quality of health.

I feel discouraged almost daily but don't give up.  I'm just always in pain so I have a constant reminder of my situation that I cannot escape from.  I have grown stronger and more tolerable to pain.  I breath steady and deeply on a regular basis as a form of pain control.  Resting more and asking kids to be quiet or play in their rooms.  Poor kids, they don't go places besides school and church.  They know I'm not well and they understand but it's still not fair to them.  I know they will be fine it's just hard for them to hear of how much their friends at school and church are seeing and adventuring so much.  We couldn't take them to our neighboring mountains for a quick hike since all 5 tires, (yes the spare, too) are past the worn tread mark.  They are all cracked and rotted.  We seriously live on tithing blessings and its a miracle we have lasted this long!

Moving, I shudder to think of it!  Not while I'm sick.  Not while I can barely keep up with laundry, dishes and regular household chores.  If so then I want a low maintenance home.  No big landscapes, mostly patio covered backyard and in a culdesac.  This place is good but not easy for me to upkeep.  We will know more in a couple of months...  I hope.

Until then, I think I will just nap.  It sounds perfect about now....