This is not my normal type of Blog post. I feel I have to tell my story (the whole story) in order for me to continue to heal and move forward. This is the only way I can get all of the information out without having to defend myself or get questioned in between the whole story (or forget any details).....
With the 1 year anniversary of my Dad's passing approaching this Sunday, and my body doing some funky things this week, I decided it was time to face my fears..... and BOY.... I have a lot of them.... The most persistent right now and rearing it's ugly face is Somniphobia , which I will talk about a bit later.
It's only been about 9 months since we even heard the words "Lyme Disease" out of the Doctors mouth. The first reaction was... "What the Hell?" Next was a mission to educate ourselves. After that... educate those we love and then everyone else. There is a certain amount of Fear that resides in all human beings relating to 'Spilling the Beans' or publicly speaking out. It is time for me to tell my story.....
Scott joined the Air Force in 1997, and was stationed at Elmendorf AFB in 1999. He had a pilot slot and was on top of the world, yet was troubled with the necessity to sleep up to 18+ hours a day. Scott decided to have a Sleep Study performed and was diagnosed with Hypersomnia (Excessive Daytime Sleepiness with no known cause). He then was medically disqualified from his Pilot slot and thus the battle began.
I met Scott, in 2002 in Anchorage, AK. I was 22, he was 25. We are going to leave out unimportant details of the last 13 years and just focus on the medical history. When I met Scott, he was a driven, motivated, exciting man with a love for everything. He was just tired.... It wasn't so bad in the beginning. A nap on the weekends for sure, but with a day job, you must move forward and take responsibilities seriously. As time went on, Scott would come home from work and fall asleep in the recliner in the living room until I woke him up to come to bed. Excessive sleepiness is not the only issue Scott had going on but it was the most prevalent. He also had bouts of depression, brain fog, rib and joint pain, and a chronic cough. Due to his 'diagnosis', from 2002- 2013, he was on and off so many different pharmaceutical cocktails to help his 'Sleep Disorder' - I couldn't even count how many or tell you what they were. Only the fact that they weren't working.
In 2004, I started getting Migraines that would last a few days at a time and reoccur sometimes twice a week. I tried every over the counter medication I could get my hands on to relieve these pain monsters, finally finding that prescription 'Relpax' at about $50 per dosage (with insurance) was the only thing that helped. After several months of this, I realized I was going for broke with the constant need for this pain relief and there had to be a way to prevent it....... I heard about an anti-seizure drug called Topomax that was supposed to help prevent Migraines. Brought it up to my MD, and he said it was worth a try! Started weaning myself onto it that next day. By day 3, it was time to up the dose a bit. The morning I upped the dose, I had what I can tell you was one of the scariest mornings of my life. I, am one of the 0.1% of people that have the 'rare' side affects. I went to work feeling odd. That is the only way I can describe it... odd. By the time I pulled up to my office, I felt maggots crawling under my skin. I sat in the parking lot with the door open and still sitting in the drivers seat with the car still on and freaked out cause I had 'locked my keys in the car'. Of course, I hadn't. I gathered my wits and went into the office. I sat down at my desk and started feeling the whole world close in on me. Like literally, I felt like I was in some kind of clear box and I couldn't communicate anything going on in my head. In a sheer moment of clarity, I dialed up the doctor's office and exclaimed to the nurse (who happen to also be my neighbor) "I need to know if I can stop taking this medicine! It's making me CRAZY!" The nurse said: "I'm calling Scott to come get you NOW. You need to go to the ER!" I hung up quickly and threw myself on the floor, in hysterics, having a full body panic attack. Scott picked me up and brought me to the ER where they said I had to let it get out of my system. Needless to say.... that was the last time I took Topomax. In 2006, By the hands of an Angel, I misplaced my oral contraceptives (which the pharmacy wouldn't replace until the next month).... I realized mysteriously my Migraines were gone. Like.... GONE. Something about the hormones in the pills was doing something bizarre to my neuron receptors in my head. I don't pretend to understand why, but I do know that was the last time I took oral contraceptives!
In 2006, shortly after the Migraines debacle, I started having severe Heartburn coupled with massive stomach pains, which I referred to as 'Gut Rot'---- like hot, sharp rocks were tumbling around inside my stomach. and in a ridiculously short amount of time, gained around 30 pounds. Scott and I had just gotten engaged, and I was preparing for our wedding. I felt like a bloated cadaver, ready to pop at any given moment and I didn't know what to do. I went back to my MD and he performed a sonogram of my torso and some labs on my blood. The diagnosis was 'Fatty Liver'. This basically meant that my Liver wasn't processing much of anything and thus why I had gained so much weight. I immediately adapted a 'Clean Diet' -If it had a label- it didn't go in my body. This didn't really solve anything. It was this point that I developed the Somniphobia - more specifically, 'Fear of Dying in my Sleep.' I literally felt like I was dying on the inside and didn't have great answers as to what was really wrong. I would lay down to go to sleep at night and could NOT turn my brain off. I would work myself into a frenzy and lay there with extreme anxiety until I was finally so exhausted I fell asleep. As I look back on this time of my life, I can recognize so so many Lyme symptoms that I was completely unaware of- I had no idea that these things were not NORMAL.
In 2008, Scott and I moved to Idaho. With a fresh start to life, Scott started doing extensive research on what in the world could be wrong with him..... Oh you can not even imagine everything that we have tried.... the money we have spent, or the energy that we have wasted. We went through the first year in Idaho addressing my 'Digestive Issues.' I had ulcers, fissures and a hiatal hernia. We wanted to have a child and could NOT get pregnant. The MD I found in Idaho suggested that I would likely be able to conceive if I lost 20 pounds. I had no idea how I was going to do it. I felt like crap and I didn't have the energy. I asked myself "How badly do you want to have a child?" I created my own special diet (based solely on what I was eating) and lost 17 pounds in January of 2009. I started feeling a TON better and by July of 2009, we were pregnant. I had an EASY pregnancy - except for the last 3 months where I vomited around 5 times a day because of the hiatal hernia. I delivered naturally and quickly and our son Tyler was born completely healthy in March of 2010.
2012- The Shit Hits the Fan. The entire year of 2012 is almost a blur to me because it was so evil. In April, I had a root canal that I reacted badly to.... Maybe no relation, but 3 days after it, I felt like I was having a heart attack. I was sent to the ER where they released me saying I had GERD. Get real. Reality: I was having serious heart palpitations from low blood sugar, and exhaustion because I hadn't eaten anything in 3 days. It was completely unintentional (not to eat). I could barely swallow water and was apparently subconsciously not eating. I googled some things, realized I had Dysphagia caused by an Esophogeal Stricture and called my Gastroenterologist to schedule a Dilation procedure. 2 weeks later, I had the Dilation and everything seemed fine in our world. My Dad was diagnosed with Cancer in the Summer. In July 2012 I started having random hip pain. The Sciatica was debilitating enough that I started going to Physical Therapy and continued that for about a year. The PT, would give me temporary results, however the Sciatica was more than just a pinched nerve. In November, I had an Open Septo-Rhinoplasty to repair a severely deviated Septum- causing problems such as reoccurring Sinus Infections, Regular Ear Infections, and clenching my teeth in my sleep which then was leading to headaches and also cracking my molars (yeah, I currently need 6 crowns because of this). .... Horrible recovery but the outcome... amazing. I couldn't believe how well I could breathe! Then in December, due to stress and well, mostly stress and overextending myself, I had another bout of Dysphagia. Another Dilation procedure on Dec 23rd and GOSH I was looking forward to 2013!
2013- More of the same. Day by Day, Hour by Hour.... Just get through life. One moment at a time. I received a call from my Dad on October 25th- 'Saying Goodbye'..... I got on a plane a few hours later to Alaska and spent the next week with my Daddy. The Cancer was spreading. All I could hope for was a miracle and to spend some time with him. Together with my siblings, we formed a family Christmas in Alaska, knowing it likely would be Dad's last.
2014- January 6th, Scott gets laid off.
Sunday, February 16th, 2014- I received a call from my brother that Dad was in the hospital and 'wouldn't be released'. I called the hospital and had my last on Earth conversation with him. He told me that he thought this was 'It'. I told him I loved him and I was going to miss him and goodnight. We flew to Alaska that Friday morning. I got to see him one last time- rub Lavender oil on his feet, and give him a hug and hold his hand. He passed the next morning, February 22nd, 2014 at 11:11 am. The stress of my fathers passing put my symptoms into an outrage. I started having Full Body Vibrations that led to heart palpitations and anxiety. (I still, seriously, did not even realize this was happening.) I was all over the place. Couldn't concentrate, always just generally felt like garbage. Grief brought out a lot of this disease....
June- Scott goes to a local Naturopathic Doctor to get yet another opinion. A Live Blood Cell Analysis is performed and after seeing Scott's blood, the Doc says: "Now I'm not a betting man, but if I was, I'd put ALL my money on Lyme." OMG... an answer! A real one! I can still remember the exact moment when Scott told me he had an answer. He said: "Well, we have an answer, but I don't know if that's a good thing.... Lyme Disease." We spent the next few weeks reading absolutely EVERYTHING we could get our hands on about Lyme. What a freaking MESS! No, this was NOT the answer we wanted! Through more research, we realized it was absolutely necessary for me to get tested as well. And wouldn't you know it. Spirochetes in my blood too! How could this be possible? Oh the time we wasted treated what we didn't have! It was like our lives were all of a sudden flashing before our eyes! How could we manage this? There's no cure, no real treatment that works available and little to no education or awareness about it out there! We felt lost, hopeless, and destroyed. I called my Mom in early July and asked her to come help. I didn't even know what I needed her help for, I just felt like our lives were a disaster and I wanted my Mommy. She came right away. We heard about a place called LymeStop in Coeur D'Alene, Idaho. We managed to get appointments in December for both Scott and I. A specifically memorable moment in Dr Smith's office.... We were going over my paperwork during my first appointment. There was a question on it that stated: How is this affecting your life? My answer was simply: "This is a life not worth living." I remember watching the doctor kind of shake his head sadly, because he truly understood what I meant. It was then that I started to cry uncontrollably. Not because I was sad, but because I knew in my heart that he was going to help. That his reason for being on earth is to help people affected by Lyme.
Do we feel better?
This is a loaded question. I don't know what 'normal feels' like. All I know is an absence of symptoms that I was aware of.
In a LOT of ways, the answer is YES. In other ways, we are worse. It can take up to a whole year to really feel the full affects of this treatment we received. Scott sleeps less and has a way better outlook on life. His Brain Fog and Mood has leveled. My Brain Fog and Hip Pain virtually disappeared..... until Monday. I feel like the upcoming anniversary of my Fathers passing is making me flare. My body won't work, my legs don't respond to my brain. I have such bad body vibrations, I feel like I am on the edge of passing out all the time. I can't concentrate barely at all, and the exhaustion I feel.... Can you imagine how much energy it takes to write a check? For a normal person... virtually none. For me? I feel like I just ran a marathon.
One of my fears is rejection. Ever since my husband and I were diagnosed with Chronic Lyme Disease, we have dealt with an array of 'Nay-Sayers', from old friends, to close family, as well as (of course) strangers. People who think they know more about this disease (that WE have) and think they have the right to tell us what is best for us and what we should do. This disease is enough on it's own to send someone to a Psych ward, but to then lose your support system on top of losing your mind, body, job, and seemingly everything else good in your life is unbearable. It is a constant fear that due to Lyme being so cliche, political, and in the 'unknown' category, that those in my life will decide it's too much of a hassle to care.
Do I want Sympathy? Hell, no.
Do I want to inform and educate people about Lyme? You bet your ass.
There are 80 Million Americans at risk of getting Lyme Disease. Do you think you can escape it? Only 30,000 new cases of Lyme Disease are reported to the CDC each year, however that is highly underestimated. The lack of accurate testing and unreported cases of Lyme make the number to be reasonably suggested at approx. 300,000 new cases of Lyme every year.
It took Scott over 14 years to find an answer and he was actively looking for one. What about those that aren't looking for an answer? Like....me? That didn't even realize some symptoms were symptoms at all? That just feel like crap and don't know why, or don't know where to start? Or those that are treating a 'capture all diagnosis' like Hypersomnia or Fybromyalgia? Lyme mimics so many other diseases and the symptoms come and go as they please affecting any weak spot in your body it can. Don't ignore your body, and don't think for one second it can't happen to you.
The Future for us?
It is what it is.
One Day, One Step, One Minute, One Moment, One Breath at a time.
Wednesday, February 18, 2015
Tuesday, February 17, 2015
If you've been following this Blog for anytime now, or you know me personally, you will know that I'm kind of obsessed with Freezer Meals and anything having to do with making life more efficient.
I started a local Freezer Meals Swap group earlier in 2014, and after about 5 swaps decided there had to be a way to make it more better overall for those involved. After a bit of brainstorming, it was decided to do a group swap with everyone in the same place at the same time and contributing the same efforts and dollar amount towards the meals.
I posted on the group that the first 6 people to send me $100 will be guaranteed their slot in the upcoming swap. A few friends offered to help with the shopping and the hamster wheel started turning.
I made the first list of the meals I wanted us to prepare and the amount of people that would be involved. I decided that I would change the contribution amount to $150 so that we could make more meals with the budget. Everyone agreed and so with 9 Families committed @ $150 each, I had a $1350.00 budget to work with.
I created an excel spreadsheet with each meal, ingredients and cost all listed out (yes, I love excel.... I'm a nerd). Back and forth over 2 months time tweaking how everything would be prepared *down to the size baggie we would put each part into* and even a series of changing some of the meals completely to maximize the budget and time to prep involved.
Lots and lots and lots of planning! The hardest part was the planning for exact portions to make sure each meal would always feed 6 and that our efforts were maximized during the 'BIG DAY.'
- Plan your menu & ingredients down to the seasonings. (I ran out of PEPPER!)
- Know your exact budget, and try to leave around $100 left over for 'incidentals'
- Retrieve monetary contributions from every swap attendee *before* you plan to shop.
- Nail down a time (make that a whole day) that works for everyone.
- Have no more than 2 people shop for ingredients. Find your most price saavy person and ask if they will be a shopper. If you are the main planner, you should be the other shopper. Weeks in advance, start watching sales.
- *If* your menu and ingredients are set in stone, shop for dry/canned items as early as possible..especially if you find them on sale! Keep swap receipts completely separate from other purchases.
- Block at least 30 mins- 1 hour of time for every meal preparing- The more people you have helping prep, the faster this can go.
- Plan an activity for your husband and children to do for the entire day. The last thing you need is kids and men getting in the way of your creative freezer meal prepping genius.
The Day Before the BIG DAY:
|(Just my garage fridge)..... you need lots of storage|
- Frozen items and fresh products should be purchased the day before the swap.
- Borrow as many crockpots (the day before) as you can possibly find. I personally own 2 large Crocks but borrowing from the other swappers and cooking everything at my house was easiest. At one point in time, I had 6 large crockpots cooking 35 pounds of Pork, and another round, I had all 6 cooking 40 pounds of chicken..
- The night before the swap (not day), cook all the meat. Crock what you can (that's mostly everything) and assess what you can cook and store to be ready for assembly the next day. One thing you don't want to do is have an entire person dedicated to cooking meat all day long. Let the crockpot do it for you. Also keep in mind what is frozen solid and can't be crock-potted. For example. We had 75 pounds of Ground Turkey that was FROZEN SOLID. It had to be left out over night and cooked throughout the prep day.....THIS was lesson #1 :)
- Ask the swappers to bring their BIG coolers to your house to store everything. They will also likely use those coolers to bring home their meals.
- If there is anything that can easily be prepped the night before- Do it. We sliced ham, diced green peppers, and assembled the Broccoli Cheese Soup and the Potato Soup on Friday night.
- Start early
- Have a organized plan (I didn't)
- Start with anything that needs 'prepped' before assembly and work forward.
- Deal with the meat that was cooked overnight as soon as possible.
This was our schedule:
|The sheer amount of groceries was UNREAL.|
7am- I picked up Moe so we could go pick up Bountiful Baskets and do the last minute shopping at Winco (Remember that $100 reserves in the budget? That was a VERY good thing.)
|Amanda and I getting things started.|
|Angela slicing Onions.|
|This will be the biggest Cinnamon Roll on Earth ;)|
|Group effort rolling this baby up!|
|Mariah mixing up casserole in what else but a 5 gallon bucket :)|
|Me & Moe rolling out some dough :)|
|Angela stuffing pizza bread.|
|Stuffing Jalapeno Bread.|
|Jamie labeling bags.|
11:15pm- We wrapped up the evening, took some pictures and patted ourselves on the back :)
Each of the 9 of us took home the following:
- (2) Hawaiian Chicken
- (2) Chicken Broccoli Quinoa Casserole
- (2) Chicken Spinach Burrito Mix
- (1) Philly Steak Sandwiches
- (1) Beef Fajitas
- (1) Bag with 15 single portions of BBQ Pulled Pork
- (1) Bag with 13 single portions of Sloppy Joes
- (1) Sweet & Sour Meatballs
- (1) Plain Meatballs
- (2) Potato Soup Base
- (5) Marinara Sauce with Meat
- (3) Broccoli Cheese Veggie Soup
- (1) Tray of 22 individually wrapped mini Ham & Cheese Croissant Sandwiches
- (4) Pre-Cooked/Pre-Seasoned Taco Meat
- (2) Trays Brown Sugar Giant Cinnamon Rolls
- (2) Pepperoni Pizza Garbage Bread
- (1) Jalapeno Popper Garbage Bread
324 Meals of 6 servings or more each. Plus there was leftover shredded cheese, precooked chicken, and sliced ham that was evenly distributed between everyone.
Average cost of $3.74 per meal.
The total amount of food made was 2016 portions at an average cost of .60c each.
This was a MASSIVE undertaking. I highly suggest doing something like this no more than once every couple months. The process going forward for myself is to get together with just a few other people and do a mini swap/prep every weekend or every other weekend. That way there is constant replenishment of the choices in the freezer. Even though we literally just finished up this swap, we are already planning a mini prep for this coming weekend of 4 types of meals with just 4 people.
To purchase the 'Plan' from this swap to include the shopping list and recipes, please e-mail me at firstname.lastname@example.org and in the subject line write: "Freezer Prep Plan."
I hope to hear your stories, lessons learned, and ideas from successful Freezer Meal Swap parties!
Till next time,