Family hike and doctors appointments.

Have you ever wanted to do something so bad and then when you do it you wish you hadn't?  Ok, I know.  That's a pretty open and loaded question.

I wanted to take the kids on a hike yesterday through the old railroad tunnels in a neighboring city.  It was beautiful out!  Almost 80 degrees in February!  The hike was awesome!  I love seeing historical places and this was a close to home visit for us.  I was born and raised here so I thought the trail would be fun.  It didn't let us down.  Half way through we stopped for lunch.  It was the turn around point.  Did you catch that...?  Turn. Around. Point.  

I think I'm impervious to this new disease.  I used to over do things before and even though I enjoyed the hard work, my scoliosis and bad hip always got the best of me.  I'm stubborn at times and think I can do things that I know I really shouldn't.  

It wasn't that I pushed myself to continue the walk...  It was that I pushed my kids, too.  It was good and bad.  It reminded us of our Temple walk we did as a family a few years back.  Well, Bryan drove with the little ones while myself and the two oldest walked the half marathon.  

Our hike the other day ended up at around 9 miles.  Our littlest was a trooper and did most herself.  My husband and I switched off carrying her.  It was fun.  You could see a great view of the lake and the 5 railroad tunnels weren't too long that we needed a flashlight.

Then I decided to go further.  Which was fun...  At the beginning.  There were switchbacks.  If you are unfamiliar, they are steep ramps of doom made to lower its victims at an alarming rate without the use of machines.   Going down to the dam on them was great.  But once I got to the bottom I turned around.  I had to send my family back up it.  Oops.

We looked around for a bit, took some pictures of the kiddos in front of the dam, even with one kid mad at me because he couldn't throw a rock over the side.  (This is my favorite picture!)

We headed back to daddy who was still on the top of the parking garage with our puppy.  We were going to switch so daddy could see but had to head back because of time.  It would be dark in a few hours and we knew we would be going slow back.  

The first thing we had to hike was the switchbacks.  I barely made it to the top when my hip went out.  It was while I was carrying my youngest.   But I'm a trooper...  Or really dumb.  I didn't ask for a break. Well, I sat for a few minutes but knew I had to continue on.  So I got up and hiked uphill for another hour.  Partially carrying her.  Again, trooper or dumb.  The pain was excruciating.  I could barely put weight on it but I pushed through because I knew it was just pulled.  Nothing broken.  I had to get my family back to the car.  My husband was great.  He kept his "I told you so comments" to himself.  So I decided to keep my complaints to myself as well.  No matter what pain I was in, so was everyone else.  Just at their own levels of it.  

(Switch back pic....  I will insert it here later!!)

I have to say that even though we made it through to the end we had a really fun time on the trail.  Scott made a running joke of how if you go off the trail you will destroy the surroundings as well as getting hurt.  He went off too many times to count.  Five times of those he was injured.  Nothing big but the one that made me laugh was when he decided to throw a rock into a cactus and then pick it up to be impaled a few dozen times by its hair like needles.  It was Karma.  I laughed!  Poor kiddo.  

The trail was pretty busy but by the end we were almost the only ones.  We saw lizards, beautiful flowers, and a few big horn sheep.  One with big horns, too.  We made it back to the car just after the sunset.  It was pretty to end the hike at that time.  We picked up dinner and drove home...  Not one of them fell asleep in the car, too!  That surprised me.  

Sitting for an hour in the car was bad news for me though.  I have been walking very funny since we arrived home last night.  My right hip and both knees are in bad shape.  Especially my hip.  Last night it took me over three hours to fall asleep from the agonizing pain I was in.  Even after my detox bath I still hurt.  I almost didn't make it to the bathroom on my own but I did...  Just very slow and wobbly.

My appointment with the Infectious Disease Doctor.

Today I woke up to the kids getting up and was off to my doctors appointment.  My fatigue level was so low this morning that I really shouldn't have driven myself to the doctor.  I told my husband that he would just have to take me next time.  I came home and slept for another 4 hours.

My appointment was great as usual and we came up with a plan for the next month or so.  My MTHFR results came back negative and as from my last post about it that's good and bad.  Good because I do not have the genetic disorder and will not have to deal with that on top of everything else...  Bad because this means it is the Lyme acting up again and not a nutrient/detox issue. 

We went over the rest of my results from my blood work.  All most all levels were normal except two.  My white blood count and my iron level.  They weren't too worried about my iron level since I run low normally and have as long as I can remember.  It's never been low enough to do any harm and we are good with it being constant.  My WBC was low at 2.6. Normal range for the test was 3.4 to around 8 or 9.  (I forgot my copy so I will update the higher number later.). I will be starting steroids to try to raise these levels.  In two weeks we should see results.

For now I will skip the PICC line and Rocephin IV antibiotics and continue the doxycycline another 2 weeks.  Then assuming my white blood count is higher I will add Tindamax to the treatments to make them more effective.  After that we will see if I should go through the route of IV antibiotics.  

So for now, I'm on my couch. Helping with science projects and waiting until my hubby gets home.  Then we have our church events to go to tonight.  I planned on staying home to hide my hobble...  But looks like plans have changed.  At least I'm showered!!  Lessons learned, I guess...

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."