Saturday, October 25, 2014

One year anniversary

One year ago today, on October 25, 2013, my life changed forever......

In a recent interview for the company Just Perfect, I had to create a script or list for our families first video.  I thought since I don't have much energy to make a one year anniversary post, I thought adding pictures to the interview would be suffice.  (Yes, I added a bit!)
Thanks for being a dedicated follower of my blog.  A bigger thanks to everyone who has helped, donated, called, shared, prayed, checked in, babysat, cleaned, bought groceries, cooked meals, donated food, gave us a night out, said words of encouragement and loved our family during this last year.  

I know I could NOT have made it with out you.  I love you ALL!!!

~~~~~~~~~~

Hi my name is Melissa Severance.
I was born and raised in Las Vegas, NV.
I went to high school as the first freshman class to start at the new Las Vegas High School.

After High School I worked my way up from an entry level position at a large bank to almost becoming manager of an entire operations department at only 23.  I worked with the company doing Six Sigma and Kaizan and I loved every minute of it.  I had found my passion. 

I then met my husband, married and soon after had my daughter and decided that staying home with her was my new passion.  We now have 4 beautiful, amazing, and silly children.


Our family was always busy and we owned our own company having our young ones working by our side.  We now own another company, and hope that it may grow, too someday.  For now daddy works at a family fun center.  We all, that’s right ALL of us, help daddy at work doing random things in trade for some fun time on the trampolines or playing laser tag.   We love to travel, hike, camp, go to the beach and absolutely love going to the lake with our friends on their boat.  

Before Lyme

Trying new things
Hiking in new places (Mammoth Cave)

Getting dirty with the kids

In the fun

Conquering with the kids 

Teaching new traditions

Adventuring to new places

Marshmallow roasting 101

Softball with friends

Midlife crisis convertible (wish!)

Spinning sail boats

Selfies with my kids

Favorite place with my favorite person

Super Summer Theater with my girl

Dress up days

Silly is a must

Animal lover

Playing tag

Photo bombing 

Look-a-like days

Pushing too much

Being blown away

Memories in motion

Dancing in the rain

13 mile walks to the temple

Brick House....  do I need to explain??!!



How did you find out you had Lyme disease? 


By accident!  I had been very sick for months.  I was in a store one day and received a call that my test results came back positive for Lyme.  I had a doctor that finally took interest in my well being and was about to send me to the Mayo Clinic in Scottsdale, AZ until these surprising results came in.


THE DAY IT ALL CHANGED

Ready to camp!

What was I doing???

The beautiful evening

Our family tent

Walking the line

A day with friends
One in a million...  or a hundred or so.


What is Lyme disease?

Lyme disease is a spirochete bacteria, which means it is spiral or cork screw, and goes by the name borrella burgderfori.  It most commonly is transmitted by the black-legged deer tick.  A majority of the victims, including humans, are animals, dogs, rodents, reptiles and birds…  The list goes on.  It is found in all 50 states and on every continent except Antarctica. 

Additionally, studies have revealed that Lyme disease can also be passed through the placenta of a pregnant woman to her unborn fetus, therefore allowing Lyme to be a gestational disease.  DNA of the bacteria has been found in breast milk, as well as suspected in cases of sexual transmission, but research on these two potential means of transmission is still pending.

When someone is bitten by the tick it is usually in its nymph form which is about the size of a poppy seed.  Transmission takes 12 or more hours as once the tick is done feeding it puts back anything it doesn’t need.  In this process is where the bacteria are transferred.  %50 of people will later see the bulls-eye rash that accompanies a bite.

When detected in its early stage, Lyme disease is treatable with an appropriate course of antibiotic therapy. Some develop flu-like symptoms a week or so after becoming infected. If undetected and untreated, the bacteria replicates and the disease progresses into its late stages, becoming chronic.  However, many people have no symptoms but can develop Lyme symptoms months, years or decades later.   

The spirochete bacterium screws itself into the body’s cells meanwhile releasing toxins that the body naturally fights off.  When it cannot reach the bacteria it continues to attack the cells surrounding the toxins causing it to become an autoimmune disease.  The body begins to attack itself.

Treatment for Chronic Lyme disease is prolonged and complex.  Patients often require years of intensive conventional and alternative therapies to fight the infection, recover immune function, and gain strength.

Lyme is not the only thing that can be transferred.  Many other co-infections such as Babesia and Bartonella come along with the tick bite and can be worse than Lyme itself. There are also secondary infections that with a normal immune system could be fought off without the host even knowing of its existence.  Any one of these alone can have debilitating symptoms and a combination can only make matters worse and harder to treat. 

The Lyme spirochete bacteria is hard to detect and hard to kill. Lyme disease is growing at epidemic proportions in the United States.  The medical community is divided over the diagnosis and treatment guidelines. Health insurance often doesn't cover the treatment for Chronic Lyme disease.

It is called the great imitator; looking like many other health problems (Fibromyalgia, Arthritis, Chronic Fatigue Syndrome, Bells Palsy, ALS, ADD, MS and Lupus).  

Common Symptoms include: fatigue, neck stiffness or pain, jaw discomfort, muscle pain, joint aches like arthritis- typically in the knees, swollen glands, memory loss, cognitive confusion, vision problems, digestive issues, headaches and fainting, heart problems and even death….  I’m starting to sound like those medicine commercials!!


What has Lyme disease done to you? 

It has taken me away from my family and friends.  I have multiple symptoms and have been hospitalized from some of them.  At times I am in such severe pain that even the best pain pills aren’t working anymore.  I am nauseous and bed ridden for many days on end.  I miss school award ceremonies, church activities, birthdays and my children have missed out on SO much from mom being sick.  Even the triple birthday party that we throw at the end of March every year for our kids that share birthdays within 3 days apart had to be canceled.   We have tried to travel with the kids but it proves to be too strenuous for me so we just stay home.  Even going to the park is difficult for too long.


 My husband had to quit traveling to care for me and the kids when I couldn’t.  The past year has been financially hard mostly because Bryan could not work as much as was needed to pay the bills.  Everything is behind or in shut off status.  Our car is almost paid for and we are struggling to keep it.  We have support from friends and family and have been very grateful…  It has kept us a float thus far.  Keeping our heads above water…  That is what we have been doing for the past year.



I make voice notes all the time so I can remember things...  This one is about what else in our lives has been effected.



LYME CHANGED ALL THAT

In bed all the time
Otter pops for breakfast, lunch, and dinner
Too tired to swim

LOTS of blood work

Lots of tests run

Visitors made it better

Bunny loves

Too sick to get up

Other diagnosis...  put on the back burner

Sundays were exhausting

Laying in bed...  again

Family still loves me...  even my leg...  that they were hugging

Comforting me when sick

Watching others 
kids miss me being active

starting to become part of the couch

watching others freedom

Still loves me

Family visiting me in bed

Noise cancelling headphones...  that is all.
Started "band-aid" treatments
New adventures?
 
Picking up kids at school

ALL BECAUSE OF WHAT YOU CARRY

What have you had to change in your life? 

All I can think of is: WHO moved our cheese?  Oh, it was Lyme.  I already have Celiac Disease which is another autoimmune disease so starting the forever gluten free diet was easy…  I’m already doing it.  I also have to eliminate diary.  I love cheese so this was hard.  While on antibiotics I have to eliminate sugar as well so as to not feed the bad bacteria.  I have to detox every day and take multiple supplements as well as more prescriptions to aid with the symptoms of the antibiotics. 


I no longer have the energy to do the things I once used to do.  I was a busy body always trying to make our home a better place for my children, playing with them and helping others as much as I could.  Now I am the one who needs the help.  What used to take me 30 minutes now takes hours…  Sometimes days if I have memory or concentration issues.  I cannot do anything strenuous or I will pay for it for days afterward.




THE SPOON THEORY

Click on the link below for a perfect example of what I deal with now because of Lyme.





Why are treatments SO important?

I've had many ask why treatments are so important.  Besides to avoid having all the symptoms of Lyme and to prevent my body from further damage from this auto-immune disease....  Well...  I don't want to die from it.  Plain and simple.  When someone says they have cancer they have a choice to make based on the stage it is on.  The same goes for Lyme.  

I am in the beginning stages of Chronic Lyme... Which is a final and irreversible stage.  Doctors say this because of the Cardiac and CNS damage that has already been done.  Some of it can and will repair itself on its own.  Most of it won't.  Getting treatments will push the bacteria back, help my immune system recover and will stop further damage to my body.  The reason for the high cost is weighed in on costs in different scenarios.

1. Living nearer to a doctor is my first pick.  This means moving out of state.  I will need a doctor that specializes in Lyme and the recovery of the whole body if I want to keep on top of this.  The doctors here are great but they are not able to treat the whole disease.  This is not something we can do right now.  It would be the cheapest and most effective way but not quite feasible.

2. Going to Envita one trip for 8 weeks, (every 5 to 10 years or more) Staying with family and friends, high cost but not every year.

3. Traveling every week to a doctor out of state.  Staying with family and friends.  Cost of travel every time I need to see the doctor.  Annually it may vary but during treatments it could be for months.  Oh, and don't forget out of state doctor costs.

4. Treat it on my own as most have to do in my current situation.  Use Infectious Disease doctors and natural medicines and treatments to try to attack the bacteria during flares.  This includes whatever is not covered by insurance, hospital visits and having the quality of life not return to a full life-style.  Living in between the flares.  For me I seem to not be out of a "flare" yet from treatments.  (Still have to follow up with the doctor in town.)


When Lyme is addressed early a tick bite is $400.  If we wait until early Lyme disease, the cost increases over 4-fold to $1,700.   By the time, we are dealing with late Lyme the cost is through the roof at over $21,000 and has been commonly reported to cost patients in the hundreds of thousands. 
If no treatment is reached then the patient eventually withers away to nothing from the diseases it mimics and eventually passes away.  

MY FUTURE WITH OUT TREATMENTS

Bad days more than good

Get to meet the next cute EMT or Firefighter!

Where everybody knows your name....

Keep me alive

New goals

New stats

New toys

New friends

Certificate of death.....


DUE TO:  Lyme disease

DUE TO:  Lyme disease

DUE TO:  Lyme disease


(Am I subtle or what??!!)



Web site for funds?


I have a web site where you can donate to help us in our journey to better my life style in managing this disease.


MY GoFundMe SITE



No comments:

Post a Comment