Problem solved... Sort of.

After infusing today I stopped by the front office to ask about my prescription refill for Tindamax or if I was going to need something else.  The lady's response was...  Dr. Shah said you don't need it anymore.  

I didn't know what to say. 

All I could think of was that I am still herxing....  Which means it is still killing the Lyme.  Taking me off slows the treatment.  So I guess I'm on a break until Monday when I can meet with Stephanie.

Tomorrow morning is my last day to take the remaining pills I have and then I wait...

Week 5 done.  Starting week 6 tomorrow...  I bet anything they stop my treatments Monday and say that is all he can provide for me...  Because of the CDC.

I wish I had the $7,000 per week to go to Envita...  Or some place like there. 

My immune system is still shot, I'm still herxing, and still have a lot of Lyme symptoms.

Grrrrr...  I'm going to take a nap.  My head and joints are not liking my today.

Spoons

For the longest time I had a problem explaining how this disease affects my daily life.  It's easy to explain symptoms and the science of the disease.   It's right there on the surface to see or can be researched online.  But how I live with it is another story.

I found this video and it helped me to understand my own disease.  It explains the spoon theory.

https://www.youtube.com/watch?v=jn5IBsm49Rk

Here is a link to the written story straight from Christine Miserandino's blog @ www.butyoudontlooksick.com

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Yesterday I borrowed spoons from today and possibly tomorrow.  If I don't rest and do VERY light duty tasks every day then I am completely spent by late afternoon.  Yesterday I was not on my Tindamax so I thought I would take advantage of a day of less herxing.  Boy, was that a mistake.

Although I do not regret the time spent with my husband and children...  I am regretting that I didn't take it easy yesterday.  My Dr warned me about this.  Just because I have a "good" day I still have to take it easy.  Recovery will take me a year or more to be close to where I once used to be.

Words cannot express how HORRIBLE I feel right now.  I don't know what it feels like to be hit by a bus, but I imagine this would be it.  (Now, I didn't say crushed or mangled...  Just hit.)  EVERYWHERE HURTS. Everywhere...

I am going to take a detox bath and try to take a nap.  I also have to get going on my fundraiser....  My insurance is only covering 10 days a month of Tindamax.  I just purchased 5 days, (10 pills,) for $82.27.  Not too bad, but I hope I am not on these pills for long.  I have not been doing much for fundraising lately.  

OH, here is another link to Christine's site about some of the things I deal with every day.  She has Lupus but Lupus, Fibromyalgia, Rheumatoid Arthritis....  It's all about the same as Lyme all wrapped up into one. 

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/30_things/

Have a great day everyone and keep on keeping on!!!  LYME WARRIOR!  (Although I feel more physically defeated today...  The show must go on!!!)

Never ending herxing

I really am horrible at detoxing.  All these little buggers we are trying to kill are dying off and releasing all of their toxins at once.  It's too much for my body to handle. 

If I had been at Envita I would have been on a great detox regimen.  I need to figure this out before I go crazy from the herxing.

I hold it together for my kids and my family.  At this point I'm so tired of missing out.  All my responsibilities are still in need of my attention.  It takes 10 times longer to do anything but I try.

Just wish I could think straight...

Missing companion

My partner in infusion crime is in the ICU!  I am so sad...  I only see him every morning for the last few weeks and have had little conversation but I am terribly sad. 

Its hard not to cry in a room full of nurses, staff, patients and, doctors walking around.  I'm holding it in for now.  I really hope he pulls through and will be OK.

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!

Herxing

I hurt.  I hurt, hurt, hurt.  My body is finally herxing to the max and I am taking it one breath at a time.

Sounds are hard to bare.  Lights are too bright.  Air conditioner hurts my ears but I'm overheated and need the cool air.

I ache...  Everywhere.  My knees, ankles elbows, shoulders, hips....  Hurt SO much.

My fingers ache.  My back and neck are stiff and my muscles are knotted everywhere. 

My head is pounding and I cannot type this fast enough to document so I can sleep. 

I will do a video but wanted to journal my experience.

Find your motivation each day

Every single day I pull myself out of bed, pain stricken, exhausted, but yet hopeful.  Another day down!  Time will pass...  It's inevitable.  What we do with that time is what matters most.  It can help build or regress.  Each day I only have a limited amount of energy or strength to get through my day.  Finding my motivation is not always easy.  Knowing I am doing this to get better should be easy.  With Lyme treatment you have to get worse before you get better.  So each day I wake up knowing I'm going in to infuse meds that will make me feel horrible later in the day.  It's tough. 

So my motivation is my kids.  They keep me going.  They are my world!  Lately  Heavenly Father has blessed me with a friend to visit with during infusions.  He is older and a very remarkable man.  His spirit is strong and I am thankful to see him every day.  I love to hear him speak of his experiences and his knowledge is something I aspire to.  I would love to read his biography or to sit by his side and listen to his past.

I have always been fascinated with history and it's surprising I know little information about it.  I mostly interest myself in experiences that individuals go through and what it was like for them to live at the time. 

I have a hard time thinking straight with Lyme and memory loss is a big factor for me.  I have to work harder to keep on track and it's very frustrating.

I am thankful for a Heavenly Father who knows my needs...  Even as small as placing me with this gentleman who I look forward to seeing every morning.

On another note!  My doctor appointment went well.  I am finishing up my 4th week tomorrow.  We now are basing my treatment on symptoms.  I have reached the minimum treatments so from here out it will determine on how I feel if we continue.  My red and white blood cells are still low as well as my platelets.  My immune system is still very low, too.  I will always need to be on high volumes of supplements to assist it.  I will get sick easy...  Take longer to recover.  Knowing is half the battle, though!

Oh!  And my rash is dramatically better!  Since it is an allergic reaction I was told to use hydrocortisone ointment instead.  It worked!  All though the neosporin was removing the infection each bandage change it was not solving the root problem.

Either way, I'm happy now!

PICC line problems

AUGH!!!!!!  My skin irritation is spreading towards the wings of my PICC line.  I have used up a tube of Neosporin in two weeks and a box and a half of gauze pads.  I used so much ointment that it is slowly releasing the clear bandaid and the smaller clipped wing.  WHICH is causing the tube in my arm to pull in and out. 

OUCH!!!!!!!!!!!!!!!!

Good thing I am seeing the Dr in the morning.

Low immune system problems

Low immune systems come with many complications.  Fighting off a virus that your body naturally can handle, healing wounds and total body health are just not being taken care of efficiently. 

Earlier in the year I had an infection in my belly button.  It wouldn't go away no matter what I did.  Finally I was on a bit of antibiotics and it eventually went away.

I had mentioned earlier in another post that I had contracted two other secondary infections and because of a low immune system my body could not fight them off.  Many people have various infections and they never know they have them because your immune system keeps them at bay.

Last week I developed blisters under my clear bandaid cover.  We placed another cover a week later and kept it off the site.  Another week past and it has only grown.  Nothing covering it.  My nurse clipped a wing to place another covering over my PICC line, this time with sensitive tape.  I am not getting blisters under the cover, thank goodness, but the original site is growing. 

I keep cleaning it, using ointment, changing gauze...  The infection is spreading and it hurts so bad.

Thankfully I meet with my doctor on Monday.  This is annoying!

I'm thankful it has not spread to my PICC line.  I'm thankful that I have means to maintain it until my immune system is back up.  Lyme will always attack it.  I will be alright as long as I stay out of the hospital, keep fighting, and have high spirits about this battle... As well as many priesthood blessings!

Oops...

Learning that multi-vitamins can make Rocephin less effective...  after almost 3 weeks of treatments...  I'm a little set back by this knowledge.  Today I started agin the right way.  And this is how I feel now.  Let's kick some Lyme butt!

They clipped my wing...

It was done...  Blisters were getting worse and we had to do it.  My wing has been clipped.   :)  Now, my skin can heal at last!  Woohoo!

2 week appointment with my Physician's Assistant

I have the best P.A. EVER!  I have to share my doctor appointment with you because it really makes a difference in a Lyme patient's treatment to have support, understanding and love.

I went into my clinic to infuse my Rocephin as I do every morning at 8am.  After I waited to see my P.A. for the weekly Monday appointment.  Normally she is accompanied by two other interns taking notes on how she reviews and advises patients in their care.  Today she settled in front of me on her rolling stool and paused for a moment just staring at me.  She has the most sincere and loving eyes.  She turned around to the other two ladies and asked them to check on the other patients so they weren't hovering around.  It was an awkward conversation and the ladies looked shocked a bit.  Mind you the infusion room is open to every patient and I meet with the doctors there.  

She asked how I was feeling and I replied that I was doing well.  She just kept concernedly staring at me and said that we should start with test results.  Liver good.  Kidneys good.  (She said more but I am summarizing.) White blood count at 2.8, still low.  Red blood count just above the lower end of the scale.  Platelets low... We will monitor these.  Hemoglobin good...  all else good.  My CD 57, (immune system/ killer T cell count) was not taken for some reason so we will have to do it again on Friday.  It was low last week so we will assume that it has remained the same.  My B12 and folate are low and we need to bring it up to help with my body's natural detoxifying process.  

Since I am still having Lyme symptoms my P.A. suggests that we start Tindamax.  I will be using this medication to attack the cystic formations that the Lyme spirochete forms when there is antibiotics trying to attack it.  My initial 2 weeks have past and now we must start to get the bulk of it.  I have yet to address a chelation treatment that will help rid my body of heavy metals...  Since I will not be treated at Envita I will have to address this myself.  I also will have to address detoxifying myself from all the toxins that will be released when killing the spirochetes.

Stephanie, my P.A. (I will have to look up her last name, she goes by Stephanie!) asked if I have researched about herxheimer reactions.  I explained that I had researched it because I wanted to be prepared.  She then asked if I am ready to start or if I needed another week to get things in order.  I told her of my amazing support group...  Family and friends ready with meals, house cleaning, rides for kids and babysitting.  She asked again of I was ready for it or if I wanted to wait another week.  Me, personally, was I ready.  I told her yes.  Yes, that I wanted to attack this head on.  She stared at me and I just felt that whole-hearted concern...  I started to tear up.

As she was sending the prescription for Tindamax to my pharmacy she asked me if I had any questions.  I wanted to know how long before I started to herx.  She said that it would take a few days.  I was having a harder time keeping back the tears.  She looked up, sunk her shoulders down and stared at me again...  She was so concerned for me.  She arose and went across the room to the tissue box.  I thanked her and started to talk again...  I just stared at her and said I want to get better but I  am not ready emotionally for the path I have to take to get better.  She sat and listened to me.  

As little dialect that was exchanged...  It was more of a sweet moment that occurred the whole visit.  She told me that even though I had a huge support system to help me through the next few weeks, she would be there for me if I needed her.  If I had any questions...  Anything.  Her face, I cannot explain her countenance...  It was as of she crossed the medical professional barrier between Dr and patient and was there for me.  She has seen others go through this and all though she has never been through it, she has talked to and treated those that have.

Before I left she told me to go do something fun today.

That's advice I will be taking seriously...  Doctors orders!

2 week update into Lyme treatments

2 weeks down.  The easy part is over.  Today my nurses drew blood for another Lyme Disease panel.  I hope to get the results on Monday to see how everything is coming along.  My test results from last week showed my C diff is normal and my electrolytes are good, but my white blood count keeps dropping.  I just started another medicine that will help my intestines to hopefully digest better.  I have been on it for a day and a half and hope it improves soon.  I will find out Monday what direction my treatment will go.

As I am sitting here doing my infusion...  I received the comment that I look like I am hiding from someone with my hat on.  I responded with "From the world, I guess."  I feel so run down and have little care about how I look right now.  There are always other women in here with amazing hair, clothes, and lots of perky energy...  I'm over here looking like death, (in my opinion!)  This place treats a variety of infections so Lyme patients are less common.  Which means a lot of people at 8am on their way to work afterwards.

The first week I felt the exhaustion from the meds, (mind you on top of all my Lyme symptoms,) and my intestines stopped digesting everything.  I have had constant diarrhea since day 3.  Some days I can't even leave my house because of it.  Fun, huh? 

The second week I felt even more exhaustion.  It would start around 11am and my brain would just shut off.  Every day there was a new excruciating pain somewhere in my body.  The diarrhea was causing the nausea and my sense of taste is shot from the antibiotics, and still is.)  I spent most of my afternoons asleep in bed, on the couch, or going to the bathroom.  It would lessen around 4pm to 8pm at night.    Later in the second week I gradually started feeling the effects by 10am and lasting just as long.  ONE day was pain free and I was SO excited!  I spent much needed time with my oldest and watched movies with the kids.  It was a great day!  I yawned a lot and kept the bathroom occupied but it was great!

Today is day two of my third week.  Yesterday I came home and only made it to the couch.  When I was in the middle of my IV drip with Rocephin I instantly felt the effects.  I finished up, hogged the ladies room and made it home in time to crash on the couch.  I stayed there...  For a while, hat on, and everything.

Today is a little better as far as exhaustion but not for my poor bum!  (Sorry!  That's my life right now...  My relationships consist of being friends with the couch, bed and toilet!)

I have been able to keep up with very little compared to what this busy body is used to.  I have been very blessed to receive help from family and friends with meals, babysitting, and house cleaning.  My husband has filled in where he can but our children come first.   During the last year I have spent more time cuddling kids and talking to them then keeping them on task of chores, service and school work.  Their eating habbits have worsened and whining has increased.  I know they have gotten away with a lot this last year.  I also know that I will get better and slowly get our family back on track as well.

When a family member is sick it weighs on the rest of the household, too.  Especially when the sickness lasts for months.  Spouses feel strained and exhausted taking on extra responsibilities.  Watching their loved one go through the course of the illness is emotionally hard as well.  The children are not able to fully understand why this is happening.  For Lyme Disease patients you have to get worse before you get better...  It makes it even harder for children to witness it.  My kids now approach others with conversation starters like, "my mom is sick" or "my mommy is not here because she is sick."  They are walking stress balls and we try to bring some laughter into it all with positive outlooks and attitude. 

My kids keep me fighting this head on.  I cannot let them think I am helpless or a victim...  Mostly because I'm not.  I'm a fighter, a warrior in their eyes and this too shall pass.  We look ahead and in the now enjoy catching up on movies and TV series we have missed.  I have had a lot of time to ponder... Spiritually it has been humbling for me.  I have goals to redirect my life.  Continuing to help others, teach my children the gospel and to serve as an instrument in the Lord's kingdom.  I feel the HUGE need to purge my home and live with less.  (This was my goal last year when school started and after getting sick since October it has stopped.)  I want to be out doors every day...  My backyard was my sanctuary and now it is trashed, unloved and dead.  I will have a lot of work getting it up again but I can't wait to start.  I am one for being outdoors so its ironic that I contracted Lyme!  I plan to build a playset/ club house outside for my kids and I to "hangout" and to plant grass again.  I wish I could make the WHOLE yard grass...  We will see!  I hope to paint walls to liven up the place and to establish our school corner again.  I plan to help others as we have been helped...  Before I did it out of love.  Now I know I will serve with more empathy...  More understanding.  Accepting help is hard when you are so self-reliant and always serving others.  Being in the accepting position is humbling.  I have learned so much.  (I am in tears now thinking of having my life back...  Being functional again!)  I am impatient but know that I will have to gradually work my way back.  I miss Zumba and fun date nights...  I miss playing with my kids and jumping for hours on the trampoline without being tired.  I miss camping and road trips with family and friends.  Most importantly I miss being able to remember what I read and to function mentally enough to take care of things.  I'm the primary president in my ward and I am VERY excited to get back.  We have amazing kids and they have such sweet spirits.  My counselors, secretary, teachers, music leaders, scout and activity days leaders are awesome and I couldn't do this without them.  I am surrounded by love and am truly am thankful. 

My son is wanting to spend time with me and has been patiently waiting... Well, sort of.  But he needs me, so I better stop now!  Thanks for being patient with me!  Love you all!