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!!!

Pole Position Raceway Las Vegas Helping Family In Need!

We had another amazing company help our family out.  This time it was by giving us a much needed family night!  Pole Position Raceway invited us to come and drive a few laps around their course.  The kiddos were able to do it twice!  It was so much fun!  I was able to race once, too.  It was so awesome!  It made me happy to be doing something exciting again!

I absolutely love adventures, traveling, the great outdoors, new experiences....  Most of all I love to share it with my kids.  To see their faces light up with excitement is absolute joy to my soul.  Tuesday night was just that.  As shy as my kiddos were they were very excited to get in and try it out!  Gracie is a bit too short still but thankfully she was able to play arcade games with Ashley, James's girlfriend.  She is such a sweetheart and Gracie really likes her.

The next day I was down in bed for most of the day.  It was no surprise.  Having a day with too much excitement will put me out for a while.  Having a day with excitement AND go cart driving....  Well, Let's just say I am thankful I only raced once.  I wasn't prepared for the pain I was going to be in.  I haven't taken a pain pill in a long time....  I had to.  I have gained a new level of pain tolerance....  But not that much!  Two days later it was worse.  Last night I was completely down in bed because of my neck pain.  It still hurts but at least I can sit up now.  I have been on pain pills since and can tell that it is wearing off now.  Yea me!

Well, Yesterday was tough emotionally for me.  I barely could get up to do anything and I was asked to do two things...  ALL DAY.  So as I tried to so the first thing my neck froze.  I still had to pick up the kids from school.  I called my hubby and thankfully he took over.  I can tell you I was a mess.  I don't usually have moments of weakness like that.  I am great at keeping it together and pushing through.  All the advice was great and I knew it all too well.  I just overflowed my bucket and it all came out.  My phone was completely dead...  It wouldn't charge anymore.  So I couldn't call anyone.  Grace finally found the emergency phone so I could call Bryan....  but after that I just decided to let it all go.  I wasn't depressed or sad...  I was SO MAD!!!  I was so tired of being helpless. Sometimes a girl just needs a good cry.  After I exhausted all my strength from the drama I knew I had to pick myself back up and keep going.  Well, I couldn't get up until the next day!!!  So I worked on family history until I passed out.  (I have this new app from Ancestry.com and it's great!!!)

Oh, and my good friend Ammie came over and dropped off some very yummy treats for us.  I now have a great gluten free stash for just me.  OK, I might share....  if there is any left over!!  HA HA!  It was good to talk to her again.  Besides Church and my presidency meetings I really don't socialize much.  It was SERIOUSLY great to talk to her again.  I miss my friends.

Anyhow, they shot a video of our evening...  Check it out!

Pole Position Raceway Las Vegas Helping Family In Need!

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.

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!!!)

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.

Entry on 07/10/14 from GoFundMe - Mommy is in need of treatments

Please help our family get mommy better. Any donation helps and sharing this page does, too. We are still waiting for test results that will inform us of the proper treatment plan. 

Last night we all went swimming and it was so much fun but today is a true testament of how bad things really are. As time passes the disease continues to wreck havoc and puts mom out of commission. Having even a few hours of fun with the family makes for days of recovery. Not to mention all the daily tasks of taking care of the kids and home. Just vacuuming or doing the laundry can put mommy down for at least a day. Going to church on Sundays always make for tough Mondays. It is a challenge that is making us all stronger as a family but still no way for mommy to live.

Every day there is intense pain. Some days its hard to walk. Others mom walks around in a fog, unable to function or talk correctly. Her heart is continually feeling the effects of this disease and we have now added a cardiologist to the long list of doctors on the list. 

We are hoping for a miracle but we know that miracles do not come with out the instruments of God, (which is all of you!!) He is on our side and we know we can get this disease under control. 

We are so very thankful for all the friendships we have. It is a testament of how truly blessed we are. We know someday we will pay it forward... It has always been mom's love language to serve others. It always brings her great joy! 

Thanks again and may God bless.

Love,
the perSeverance Clan

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.

Entry on 06/28/14 from GoFundMe - Hospital visit for chest pains

I am here still in the hospital, waiting for more tests. I have had chest pains since the 13th and two days ago my back, between my shoulder blades, started to hurt tremendously. Yesterday, both were excruciating. It would fade off then come on strong. Then my shoulders and arms became numb and tingling. I couldn't take the pain anymore even with my pain meds. I called my husband home and called 911. I was taken to Centennial Hills Hospital in Las Vegas. They confirmed with my blood test and EKG that I did not have a heart attack. But my EKG did not look good. Something about a line that should be going up is going down. It suggests my Aortic Artery, the one that goes behind the heart. Or it could be something else... First they are eliminating heart issues. Lots of blood work, Echo on my heart and still waiting to do a stress test. The Doctor said I'm too young for this, even though he has seen 34 and even 26 year olds in here before with issues. So, one step at a time to figure things out. Keep the prayers coming and thanks to everyone for their support! I feel so loved!

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!