Local Pizza Place Helps a Family in Need

What a surprise this was to our family when we learned that Peter Soltesz at Joe's New Your Pizza had offered our family dinner and a chance to get out and forget about Lyme for just a bit.  I have to say that it is tough for me to go anywhere.  I must reserve my energy before and most of the times after I am still out for the next day or two.  This evening was perfect!!!  Well, almost.   I want so badly to forget about Lyme.  It is hard to when I am not always feeling up to it...  Watch the video and see what I mean.  I really had no idea they were filming me when this happened and to see it from outside looks scary.  Going through it is not easy and to think I used to be like this a lot.  I have been on treatments here in town but it is not enough.  Getting more extensive treatments won't cure my Lyme disease but it should give me many more years in between.  Knowing I may have to do the extensive treatments at all is tough to think of, but I have to.  I won't give up and let this slowly take my life from me.

Anyhow, enjoy the video and please share it!!

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.

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!