I decided that there was no way I could keep the secret but I needed to have proof.. so I decided to head down to the basement and on a carpet remnant, I scribbled with Sharpie!

FTC Disclosure: I wasn’t paid for this post, I wasn’t provided with anything free. It’s a product I purchase on my own free will and love. All views and opinions with regard to the products or company itself are my own and were not influenced, nor reviewed, by the company prior to posting.

- Posted using BlogPress from my iPad

I’ve learned as long as I have haters, it means I’m doing my job! Haters never leave, it’s a sad life really. But I am flattered!

- Posted using BlogPress from my iPad

Two years ago, I was diagnosed with a disease called Acid Maltese Deficiency (also/better known as Pompes). It turned my world upside down in a matter of minutes. I’ve struggled through Fibromyalgia, Chronic migraines and mild to severe anxiety. I’ve learned to cope with them. I’ve learned to deal with them. As much as a migraine sucks, I know it’s a couple days and I am ready to rock and roll again. As much as the anxiety sucks, it can be controlled with medication. As much as Fibromyalgia sucks, it’s also manageable with medication, therapy and I’ve found regular exercise (in moderation). There are days I spend in bed because it’s a lot of pain. Some days there is nothing you can do but rest. In a few days and in between flairs, I am back to regular life. I spend time with family and friends and enjoy everything I can. The Acid Maltese Deficiency? Nothing will cure it, nothing with make it go away. It effects me each and every day. I get weak. I am weak. Many of the small tasks that I used to love, I can no longer do. Here’s the thing I’d give anything to go back to where I have that load laundry that you growl over having to do when I just want to go to bed.. I’d give anything to go back to being annoyed by having to mop 4 times a week because of spills and messes. I’d give anything to pick up the dog poop from the yard! I think you can understand and appreciate where this is going. All of these SIMPLE chores are 10 times harder for me. Imagine having one hand and doing these chores.. Difficult eh? I have 2 hands, but it’s the same concept.

I can’t bend into the dryer and grab clothes. I’m too weak in my lower body to really be able to bend for anything. I require the assistance of my hands and maneuver up “climbing” my legs. This makes it difficult to pick anything up since I need my hands free to climb. Even bending down to tie shoes is a chore because I have to have the ability to “climb” back up. If my upper body is weak that day, it’s not happening. I have little to no sense of balance. I struggle with every day chores. I struggle to get up my basement steps and as a result, I send everyone else to bring things up and down because it takes too much out of me to do. I get winded vacuuming. I struggle with each and every thing I do. Here’s the thing.. I hide it all. I keep it all in and I rarely let anyone see the struggle. I’ve always tried to be calm and I’ve always prided myself in being both a hard worker and a work-a-holic. Since the AMD (short for Acid Maltese Deficiency) has progressed I’ve had to give in and allow for people to help. I’ve had to slow down in doing things I love. I haven’t scrapbooked in over a year. This is something I LOVE to do, but I can’t sit that long. I struggle with the fine manipulation. I went to digital scrapbooking, which seemed to work good for a little while. That too became difficult. As my medical bills piled up, I lost the ability to be able to buy supplies. As the disease consumed me, I lost my desire to take photos, to enjoy life the way that I did. How many pictures of your kids at the same ole park can you take?

Oh but there IS a treatment! This isn’t what I would refer to as a treatment, but alas, it’s what they refer to it as. Let me explain. In April 2006, the U.S. Food and Drug Administration approved Myozyme, an enzyme replacement therapy, for the treatment of acid maltase deficiency. Since clinical trials have ended and the drug is in phase 2, it’s now called Lumizyme. This drug is given via IV in the hospital over 5 hours. It’s given every 2 weeks. Lumizyme costs are averaged around $300,000 per year. This is not including any medication that I may need to have to counter act a reaction, etc. This enzyme replacement therapy is not a cure. It’s a HOPE. There are not enough patients with AMD to get proper statistics about how well the drug is working or will work long term. This disease happens in 1 in every 50,000 births. Quoted from emedicine:

Patients with the late infantile form may survive for several years. Patients with either the juvenile or adult form of acid maltase deficiency (each of which is also known as late-onset AMD) have been known to survive into the sixth or seventh decade of life. The clinical presentation may vary considerably, and some cases may go undetected; hence, the life expectancy for these groups is not exactly known.

Because this condition is SO rare, there is very little that they know, very little hope they can give. When the big picture is laid out, it’s not difficult for me to see.. This disease will kill me. As much as that hurts me to say or even write, it’s the truth and I have come to terms with it. I have no other choice. My problem lies in the fact that I am not able to get Social Security benefits (it’s been a long 2+ year battle that ended in a hearing with a judge that felt since I was able to work at one time I could now regardless). We struggle to make ends meet. We live paycheck to paycheck. My medical bills are through the roof and there is no relief in site. I can’t work and bring in an income to help my family. I blog. It doesn’t pay much, but it brings in a little income so I can provide SMALL treats like McDonald’s dinner or an inexpensive toy for the kids. I won’t get rich blogging. As my ability to sit and my ability to do things declines, so will my blog income and my ability to provide those small “treats” to my kids.

At this point, I am completely torn and heartbroken. I’ve tried to do all I can for Social Security. My husband’s insurance sucks. We pay the better of $600/month premium and we have a $3000 deductible, we have ridiculous co-pays on office visits and perscriptions. We pay $500/month at the pharmacy for my medication. We are home owners and tax payers. We try to do what we can and I donate everything I can to families in need. We live with the bare minimums. It works, we don’t have a choice. We’ve never taken a family vacation. We WON’T ever take a family vacation. My kids will never know what it’s like to be able to have an allowance. They will never have memories of a healthy mother. They are 10 & 7 and do more chores around the house and help me with more things then most kids twice their age will ever deal with. My children will watch me suffer from this disease until I die.

The stress, the burden, the guilt, the broken heart, the shattered dreams. They are far more then anything I can explain, anything I can write in words or anything I could ever imagine in my worst nightmares. My heart hurts so much I have spent the afternoon in tears. I’ve stopped writing and came back to this post 10 times. I end this post with tears. I long for a day MY KIDS can have a worry free day and can live a normal life. I long for the day my husband doesn’t work a 60+ hour work week JUST so I can have medication.

And for those that say have faith.. How can I POSSIBLY have faith when it lets me down more then it picks me up. I can’t HOPE anymore, I can’t PRETEND anymore, I can’t PRAY anymore.. it’s a reality!

This New Year’s Eve as you head out, please remember to stay safe. There are many programs available to help you get home safe and sound. Having one night of fun is not with a drunk driving ticket, accident or life. I’ve lost FIVE lifelong friends to drunk drivers. It’s very sad for the families and friends. There are a list of Sober Ride Programs as well as AAA offering Tipsy Tow. You do NOT have to be a AAA Member to use Tipsy Tow! My state and city is not personally on these lists, but I’ve made a quick phone call to my local police station and learned that my city has a policy in place that allows anyone over the age of 21 to get a cab ride from ANY bar in the city limits to their home for FREE. This policy is in place ANY TIME, not just New Years Eve, which makes me sad that at least 2-4 times a year I wake up to an accident in my neighborhood that was caused by a drunk driver. Thankfully they happen when there is very few cars on the road and no one has ever been severely injured, but buildings, mailboxes, homes and cars have been destroyed. I personally called last week to report an accident across the street with a drunk driver that hit a building and totaled the car. Paramedics ended up coming and taking the driver for treatment. As much as I am against drunk driving, I couldn’t not report it or wait for someone else to see it and call. Someone’s life was in danger and as much as drunk driving pisses me off, I am glad the driver got treatment. It still bothers me, but it also ensured this driver wasn’t going to take off from the scene (many many times this has happened in my area) and will be held accountable for their actions.

It’s not worth it people. Before you head out, know your options for a ride home and stay safe! Happy New Year!

This year has been an amazing year for me here at OneScrappyMom. I’m grateful for all my readers, contest entrants and companies. You all make blogging worthwhile and so rewarding. I can’t express how much it means to have the success that I have had with my blog and it’s honestly thanks to each and every one of you!

Personally, off the blog, there has been a lot of blessings in my life this year. For every hurdle, there has been a wonderful reward.

Merry Christmas Friends, Family, PR and Readers!! Have an amazing day and I hope 2012 is a success year for everyone!

GIVEAWAY: ONE lucky reader will win a $100 American Express Gift Card from Ragu!

MANDATORY ENTRY: To enter, please tell me – What do you do in your house when you need a quick meal?

EXTRA ENTRIES:

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Make sure you leave 1 comment for each entry to get credit!! Contest ends Friday, December, 16, 2011.

Disclosure: This post was created in connection with my appointment as an Ambassador in the Ragu Moms the Word on Dinner Program. Ragu will be sending the winner an AmEx Gift Card. Visit www.facebook.com/ragusauce to join the conversation! Be sure to check out my Ragu/Unilever Brand Immersion Day to learn more about Ragu & Mom’s The Word On Dinner! Offer valid in the US Only!

To my friends and family, Thank you so much for your support this year on everything with the blog and also offline. I have a unique family dynamic, but I wouldn’t change it for the world. I am thankfully for each and everyone of you.

Here’s my top 10 thankfully things for today:

1. I am thankful for my supportive amazing husband, children and my family.
2. I am thankful the treatment for my Pompe’s is helping stall progression.
3. I am thankful for my loving pup, who despite how crappy I can be still wants to sit on my lap everyday.
4. I am thankful we have a house to call home.
5. I am thankful for the food we have to eat, each and every day.
6. I am thankful for God and all the blessings he has given me today and everyday.
7. I am thankful the relationships that have grown this year and the ones that have failed (because they weren’t ment to be)
8. I am thankful for my MomDot family. They have unconditional support & love & I appreciate it all.
9. I am thankful for the military past and present that allow me to have my freedom everyday.
10. I am thankful for the Thanksgiving feast that I will enjoy today.

The average family buys a 16 pound turkey to feed their family and guests. The average cost of the 16 pound turkey is about $21.57. This is up $3.91 from last years cost of the same 16 pound turkey! Note: Before heading out to make your turkey purchase, check out the discounts and sales at your local grocers. Most of the other holiday items including the stuffing, milk, sweet potatoes, rolls, cranberry sauce, pies, veggies and miscellaneous things have also gone up in cost. In 2010 the average family spent $43.47 to feed 10 people. In 2011 the average family will spend $49.20 to feed 10 people. If your like me, you purchased some of your holiday items ahead of time. I purchased on sales and used coupon codes to save on the things that I could get and save, like the frozen vegetables, rolls, cranberry sauce and potatoes. I would say that the cost ($49.20) is probably pretty close to feed my family. I make a lot of things from scratch, including the pies (watch for the apple pie recipe next week!), so even though I am feeding a family of 6, I think my cost was a little more.

How does your meal compare to the average cost? Are you above the amount, within the range or did you save some? What are your Thanksgiving Day tips for saving or budgeting?

Average meal costs can be found on econedlink

Those of you that read frequently may be able to spot my daugher, those of you that can’t, she’s in the last row, playing the blue drum, with the blue blanket and the yellow hat in the white Aaron Rodgers jersey. Also a HUGE thank you to all the other band parents. Our hard work and dedication to getting them to practices and lessons has paid off. I am not sure which of those parents worked on the float, I didn’t this year, but thank you to them as well, and also the parent that took the time to pull the float for us! And of course Miss Strnad the band teacher. You took many children in a matter of a few weeks that never played an instrument and put them together for a wonderful show!

M, mom and dad are so very proud of you! We love you so much! You did wonderful! Happy Holidays!!

Something that I have done more the last couple years is shopping online for holiday gifts. I really love gift giving and I really love seeing the excitement on faces when people open a gift that is amazing and perfect for them. However, I seem to find less and less things in the store that I think are the perfect gifts. I also don’t know if it’s just me or if it’s everyone, but the lines have gotten longer and longer, the shoppers have gotten ruder and ruder and the stores have less and less of a diverse selection. I also love online shopping this time of year and honestly, most retailers, like Taylor Gifts have some wonderful deals going on for the holiday season.

Many sites are offering free shipping, low flat shipping or free gift wrapping. The other option for me is gift cards. I give a LOT of gift cards. They seem to be a hit every year and I don’t have to pick a gift. I can allow the receiver to pick a gift that they want or need and they are happy! Do you find gift giving to be harder? Do you do gifts in the traditional manner? Are you a gift card person? Online shopper? How do you get your holiday list complete?

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