Surprise Food Drop to a Melissa & her Family

This was a complete surprise and I have to say I was thankful I was dressed decently when they arrived!!  Haha!!  I was supposed to be going to the Temple with my husband to support dear friends of ours and I couldn't go.  I didn't change out of my clothes and to fight the depression from not being able to go I went to work on my home.  I really over did it and think it may be part of why last Sunday was such a hard day for me.  I crashed for almost a day and a half after all the cleaning I did!  

Back to the food story...!  When they came to the door I had no idea what was in the boxes.  Then the second batch had food showing and a lot of non-food items as well...  Let's just say I was humbled.  Humbled at all the love and outpouring support our family received that day.  From people we had never met.

Every day we open our pantry and are reminded of the support and blessings that we have in our lives.  We are now able to save quite a bit of money to place towards treatments.  I will be placing a percentage of our "grocery" budget to my fund.  It is an awesome feeling to know that we may reach our goal soon.

I really hope in 2015 to be able to take the 8 weeks to go to Arizona and receive treatments that I very much need.  I am still working on a post about why I am fundraising.  I haven't had too many active or clear-minded days recently, so please be patient with me.  Juggling my kids, family, church calling, my health, (which is trying hard to be up and about more than 6 to 8 hours a day,) a fundraiser, and trying to help with homework...  (which is a BIG task with 3 kids and one in home preschool,) oh, and a husband who is starting to travel again....  I AM OVERWHELMED!

Needless to say I am impressed with the timing of the food delivery and the tough day I had on Saturday.  Thank you again to Ashley Chau, Calvin Tran, Christine, Lucas, and Dan Warren for their generous offerings to our family!  We also, thank the Just Perfect team for all they are doing for us!  Thank you from the bottom of our hearts!!!!

Take a look at the video and please share it with your friends!  Thanks in advance to everyone for sharing.

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.  

Huge smiles in our home tonight!

Have I ever said how blessed our family is?  A dear friend of mine, who lives out of state, sent our daughter (&kids) some fun stuff for their lunches.

I had earlier in the week posted this about my 6th grader at school.  I don't normally rant, but I was so upset!

(Copied from Facebook)

I am too exhausted to take care of my own "crap" and now my daughter tells me her "friends" at school make fun of her for what she brings to eat at lunch...  Not as "fun" as their food.  She said we are all making sacrifices in our family right now...They also told her that she is selfish for not selling all of her toys to give her mom the money so she won't die from Lyme disease.  Emma was a wreck when she got home, she just broke down.  I had to tell her I'm not dying because I am fighting and I won't ever give up. I'm so sick of what is going on at school.  I'm going to end up having to put all my kids through counseling, I swear....  Ugh!

Rant over.

To have help given to you is one thing...  To put smiles on my children's faces and to ease their burdens...  There are no words to express how grateful we are! 

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!

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!