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!!!
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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.
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.
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!
Tonight my dilemma is pain pills or sleep pills. Oils aren't working... Heating pad is nice but doesn't do it. Music/ ambience is not zoning me out enough. Augh. It's times like this i become maddened by the pain. Especially in the silence of the night. I have had too many sleepless nights from this.
Most of the nights this happens I wait out the lonely hours hoping to eventually fall asleep... However some nights I never do. I try really hard to keep my sleeping schedule on track. Lack of sleep is a Lymie's worst nightmare. By that I mean healing and restoring. Your body actually accomplishes a lot when you sleep. It heals, regenerates, recharges and de-stresses the body. To someone with Lyme disease it can be difficult to deal with the typical symptoms if sleep is not regulated and the body cannot get what it so desperately needs.
I have always been big on sleep. My husband and kids know that this momma needs her sleep. I am not very functional with only a few hours of it. I have always been this way. I absolutely love naps, resting and enjoying quiet time to recharge for a bit. Before I enjoyed them because I was a busy body who always had things to do so it was a rarity to take a break. I would get up and work my butt off till bed time and look forward to the Sabbath when I really could rest! I've always had a difficult time making time for myself because I was so busy. Lately my naps, resting and quiet time have been a way of replenishing spoons or reserving them for a big event like going to church.
This is now frustrating to me because I have days where I feel like I can own the day and do all that I need to do. Mostly there are now days where I lie in bed or on the couch thinking of what I should be doing. There are even days where nothing will happen... Not even waking up. If you watched our families first Just Perfect video, my not waking up is just a part of what my hubby talks about. I would be so "gone" or out of it that he would come and shock on me to make sure I was still breathing.
Through all of this I have learned to delegate. Biggest lesson of my life... Delegate the care of my kids, my home, my chores, my calling, my responsibilities... The list goes on. I have learned how to let go of things. Time management is a huge lesson as well. If I'm feeling well, I am trying to do only what I cannot delegate. If I'm sick or unwell I have a list of things to do that I can accomplish in bed. Then there is my let it go list. It goes a bit like this:
If it's not important to our eternal progression... LET IT GO!!!
That includes, chores, callings, homework on some nights, errands, "fancy" dinners, getting dressed today, children's entertainment, my entertainment, outings, date nights, visits to the grocery store... (btw, I haven't been in one for over a month at least!) you name it.... I drop it. It's just not worth the stress on my family or myself.
Simple life... Makes me think I'm living in the wrong city! Las Vegas may be known for its easy life but I can assure you it's not easy at all. And can be super stressful in my opinion! Then again... I have been wanting a change of scenery for almost 15 years now! Maybe even longer!
Anyhow! I need to distract myself from this. It's insane!
So as I lay here listening to my puppy hiccup... It's so cute! I am reminded of a book a friend purchased for me to help with all this... I think I shall read it tonight! It's going to be a looooooooong night. Good night ya'll.
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.
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.
Three posts.... Three posts are missing. My phone shows them as saving, (seems to be frozen that way,) and nothing online. Argh! I will see if I can recover and get them posted. Sorry guys!!
Our family had a wonderful opportunity to have a night out at an amazing pizza place! The owner was so kind to offer us a meal for the whole family! It was delish!
I almost made it through the evening without any issues. I was sitting at the table with my husband and kids when all of a sudden I started to go numb. My whole body lost sensation and I started to black out. My whole body was weak. I felt a huge amount of pressure in my upper back and it was scary. I don't remember to much else... just that my husband was sitting next to me holding me up. It happened earlier today and must be a new symptom but I'm glad I had my hubby to help out.
In spite of my embarrassing moment we had SO much fun!! The kids were very excited! We don't get to go out at all these days.
Thanks to our new friend, James, for all his help for our family! We have met such kind and generous people!
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.
Our family is very blessed to be a part of this amazing new company. To be their first video of many! We recorded a lot and we had a lot of fun! The company Just Perfect did a wonderful job putting this together. I am so thankful for their support and all they have done for our family. Thank you a million times over! We hope it will bring others to your site and will help many more individuals or families in need get a bit of help and hope as you have given us... THANKS!!
