Monthly Archives: January 2014

Three days

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Three days of rain

Collar bone….constant pain. TMJ is flaring because of all the pains that go on on a daily basis…. the collar bone is the one that makes me grit my teeth the most.

Yesterday it was all about getting my joints to pop. They just had that feeling that if I could get them to pop I would get relief. Not just a pop though, a good pop. Not tiny pops…I finally got good some good pops and got a few hours of sleep.

I am so tired of having no energy or motivation to move because moving hurts.

It goes against everything I have worked for to keep complaining. I have been holding it in.

Then today it just continued. None of my tried and true methods was working. Not even my emergency measures are working.

This is one of those times that I could just curl up in a miserable ball and say fine I will just stay in bed. I won’t do anything. I will watch tv mindlessly.

Instead I am getting ready to go get the kid from school, We are going to do our friday thing and get frozen yogurt. I let her add whatever toppings she wants…no matter how much sugar it is. There are no rules for frozen yogurt.  We are then dropping her off for a sleep over and my husband and I are going on a date.

It may be there. The arthritis and fibro may not be happy with the weather..But I am going to enjoy my life, even if that means I need to keep reminding myself to stop clinching my teeth. Even if that means more pain. EVEN IF.

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When was the last time you….

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Stopped to smell the roses. Wait, no I am serious.

As parents we have a unique chance to always enjoy the little things. We just have to remember what it is like to be a child, when everything is new and wonderful.

Does it really take that much out of our day to

……Stop and smile as you watch a butterfly flit around.

…….splash in a puddle or two after the rain.

…….wore something just because it made you happy.

I find that when the pain is the worst or the most annoying that if I focus in on what my daughter is involved in, the pain isn’t as bad. It may mean that I have to get down on her level. Let’s worry about getting back up when it comes time.  Sometimes with chronic pain and parenthood we are so focused on doing that we forget to just ….be. That it’s okay to slow down. Sometimes just acknowledging that I am in a lot of pain and to slow down is enough to lessen it.

One of the joys in my life right now, is that I am an auntie and a family friend to enough other kids that I have my pick of age ranges. I can immerse myself in the infant stage or just chill with some eight year olds. If I am feeling really adventurous I even have a teenager or two I could annoy. I regularly get to enjoy my friends five year old as I help out by taking her to Tae Kwon Do. I am so immersed in the life of a parent of an eight year old that I forget what five was like.  Sometimes it is not that thrilling. I completely forgot how at five my daughter was slow as molasses on doing ….well….anything. I forget how determined to do it themselves they are at one.  I forget how exciting and perplexing a bird is to a nine month old.

Its amazing to me how much even just five minutes focusing on them can help sort us out. The pain is a bit more manageable, the stress is still there its just less. Does it always work? Nope. If I am really honest with myself though, its because I have not been slowing down enough. It is because I am trying to do everything all at once. There is so much guilt associated with being a parent who is in chronic pain that we tend to push our limits, all the time. It doesn’t help us. This is something I work at remembering every day.

When was the last time you……..

Sat in the grass and examined it for bugs?

pulled a part a flower to see what is inside?

stopped to blow on a dandelion?

took delight in watching the birds fly around?

As I think about the last five years dealing with chronic pain and parenthood. There were times that it was so easy to ignore everything around me and focus on the pain. It has been a slow  journey to find myself again. The things that stand out in my mind are when I was basically hyper focusing on my child/family instead of my issues. Unplanned moments that just stick out in my mind.  Will my daughter look back and see a parent in pain or a parent involved?

I hope and strive for a parent involved.

Battling depression is hard work

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Depression is so tricky and tempting. Once it has it’s grip, it does not like to let go.

It is this soft voice that says ” it is so much easier to just stick with what we know.”

It lulls us into thinking it is okay to always want to escape reality…into our dreams…into books…into anything so that we don’t have to confront the feelings and deal with them.

Little do the people around us know or realize that just getting out of bed was a fifteen minute mental battle. The pro’s and con’s of getting out of bed, of deciding to confront the day instead of burrowing back under the covers. We have spent energy on this mental battle before we even get out of bed.

Medication helps, sometimes, but it is not going to do the work for you.  It is not going to force you to get out of bed. It is not going to force you to be social. It is not going to force you to laugh. It helps clear the fog so that you CAN do those things.  In the end though you still have to actually do it. You have to be the louder voice, not the depression. Sometimes I have forced myself to go. Sometimes just being there is enough, I start to enjoy myself. Other times, not so much. I got back and collapsed into bed, but I did it. It is easier and easier to keep doing things, to keep pushing the comfort zone. It is also okay to still allow yourself some moping time, some resting time, some take a deep breath we are doing it time.

For years I battled it with the help of psychologist. It was helpful. It was easier. It however got the point that I needed to step out and do, not talk. I stopped going to her and put into action some of the things that I needed to do. It helped. It worked. Then it was back. Medications change and It is harder to battle it. The cycle changes but it is always cycling. It is a battle that in order to stay on top of you can’t stop thinking about it.

I am back to figuring out what I need to do for therapy again. Do I pull out the depression CBT handbook? Do I go back to a different therapist as mine retired?

Then I go back to feeling frustrated because here we are , back at this. I do well on my own for a while. Sometimes I do well for months, sometimes years. Then I begin to get tolerant to the medication, or the therapy, or even more fun, both.  It is there in the quiet moments. In the in between functioning moments, like sitting in carline to pick up the kid. The quiet moments before falling asleep at night. It is a nightly battle to say, no I AM good enough. I AM making progress. Baby steps are still progress.

I try to remember that the depression is always there. It may be laying quietly and not doing much, it is not gone. It is how it lulls you into thinking its gone. Then it rears up and the cloud is back. It is even possibly raining again.  I think part of the reason I am so aware of it is because I also have fibromyalgia. The fatigue and muscle aches and other physical manifestations of Depression are also present with Fibromyalgia. So even when I am dealing with a very low level of depression, I have the more physical stuff all the time.

It is a tiring ongoing battle but it is worth it. It is worth keeping on top of. If we don’t we loose all ground that have been making progress. I find thinking about it as not completely gone helps me stay on medications and be mindful of where I am at mentally speaking.

The quiet grief

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It is so subtle.

It is just a little niggle in the back of your heart.

People talk about a ticking biological clock but, who thinks it is still ticking after you have had a baby? It didn’t even occur to me that is what I was feeling.

After all the years of infertility, after the miscarriages you would think I would recognize it.

People talk about aching ovaries, but they don’t tell you it is your heart that aches.

My biological clock is screaming tick tick tick tick. It has me thinking about what a second child would look like. Would this baby be such a complete blend of both my husband and I as our daughter is? Would this baby have blue eyes I could get lost in like my husband and daughter do? What kind of bond would my daughter have with her newest sibling?

My brain tells me that it is not responsible to get pregnant any time soon. Financially or even medically,probably both,  it would be a disaster.

I have said I am done having kids for awhile. I mean it. I know in my brain that we are done.

Then a friend is pregnant, or someone has a baby.

I thought I had worked through this and was on my way to I don’t know….. worrying or grieving about something else. When all of a sudden my biological clock says HELLO, I want a baby!  It just adds a little melancholy to otherwise sweet moments snuggling others babies.

It is only made worse when people ask when are you having another one. When someone complains about how chaotic it is having more than one kid. When someone asks how many kids I wanted. Just a little nudge, just a small twist. Its like a barb that is lodged in your heart and words can just nudge it just a bit, make you wince.

It is not something I bring up often because I am truly and completely happy for my friends with new babies. I am completely thrilled with hearing all the details of pregnancy and breastfeeding and all the cute little newborn things. I don’t want anyone to think they can’t tell me that stuff. I was at that place once, when we were dealing with infertility. I don’t want that strain on my friendships.

It really is this quiet grief, a grief of what can not be.

It seems in my blog reading I keep clicking on others, others about rainbow babies, and infertility and new babies. Not to say I am not happy for them, Not to say I don’t get the warm fuzzy feelings that are meant to be conveyed. Its like that small smile of happiness that doesn’t quite chase the sadness from your eyes.

I debated even publishing this. I thought well I wrote it, I got it out, so maybe now it won’t be so heavy on me. Then I thought about my readers, others who struggle with multiple chronic illnesses at a young age that know they can’t or shouldn’t have more babies.  It is a personal look deep down but so much of what we deal with is super personal. So here it is.

Recovery

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This is the wrap up installment of Prepare, Pace and now recovery. Sometimes this is a bit easier to accomplish because the pain is normally there. What we need to remember is that when the pain subsides….we still need to rest.

Our bodies go through so much during an activity, pain is even more draining, so resting is essential.

Allowing yourself to rest can be just as hard as the actual pacing. I find I get restless. I know I need to be resting but I can’t sit still.

Hydration is a good key to getting on your way to recovery. The less your body has to work to function the better so keep up eating healthy snacks and drinking water. It will be one less thing your body has to worry about.  I have found sometimes crunchy snacks will help eat up some of the restless feelings. Carrots, almonds, celery and even apples or pears.

Make sure you are taking your medications! Set your phone alarm if you have to, it is worse to let your medications run out! Your body has to work even harder then.  I tend to set my alarm 15 minutes before the four or six hour mark and medicate then.  If you are using OTC pain killers like I do, alternate between Tylenol and ibuprofen. You would be surprised how much of a difference that can make, not to mention it is a tad easier on your stomach. At least it is for mine.  If you are taking Tylenol remember to take a multi B vitamin supplement in the morning. It also doesn’t hurt to throw a few tums in there. If you can find the ones with extra calcium so much the better. The key is to protect your body as much as possible so it can rest.

Recovery is kinda misleading. A lot of us will not recover completely. We get to a status quo, that is what I am talking about. A normal pain level, even that sounds wrong but you know what I mean.

The days after a large activity or a really busy day, go to bed when the kids go to bed. Sometimes that is way easier said than done. There are other times though that I am in bed before the kid is.  Allow yourself the maximum time to be in bed.

Guest post: American Recall Center

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I was recently contacted by Dr. Mario Trucillo  about a website he recently launched. I found it pretty easy to navigate and clear cut information. Below is a write up he did to introduce you to his site. I will link the site below that. I found this particularly interesting as I was on a birth control for over six months before anyone mentioned to me that it had been recalled. This is an important step in being in charge of your medical care. Doctors, hospitals and even pharmacist are only human. 

 

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Today, more and more people are living healthy and happy lives with the aid of prescription drugs and even artificial joints that keep them active. Even so, every once in a while, you might have a question. Am I taking the right prescription? Should my knee throb like this? With more and more doctors and other health professionals taking on more and more patients and with a wide variety of available treatments, it may seem overwhelming at times just to get an answer to your concerns. Yet you know it’s important to use prescriptions correctly or to stay up to date on safety alerts for medical devices. What do you do?

 

The answer: contact The American Recall Center because the information you need is now directly at your fingertips. This ARC website gives you access to all the data you need before, between, and after checkups. Do you need info on a prescribed drug? Do you want to know about a hip replacement recall? Are you worried about whether you should eat certain foods? Go right to the website; the info is there in plain language and terminology that even the most non-medical of users can easily understand. It’s all there and it arms you with all the facts.

 

The American Recall Center not only supplies the medical data you need. It offers an exclusive feature in its Patient Safety Alerts. This is a customized-to-you notification system that puts updates in your inbox about the medications that directly affect you. All you have to do is select the drugs or medical device categories that concern you. When the FDA issues a safety update on anything in your categories, you’ll receive an email. With Patient Safety Alerts, you will never slip through a crack in any FDA update. Best of all, it means that the American Recall Center and you are keeping your health a top priority.

 

Go check out his site:

http://www.recallcenter.com/

What eating has to do with Fibro

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First and foremost…. before changing your diet…consult your doctor. It may seem like a silly thing or something you would shrug off. It can be a big thing. SO, talk to your doctor first!

I know a lot of people probably expect this to be about night shades and to stay away from them. I really don’t have any problems with them. Some people do.  It is something to look into for each person individually.

Fibromyalgia made me even more sensitive to additives, preservatives and such than I already was. I was diagnosed with artificial coloring allergies when I was five. Am I great at avoiding these? Nope, not even close. There are some things I won’t give up.  My snickers and Mountain Dew are non-negotiable for me. They are also not things I indulge in everyday. Honest. I don’t drink Mountain Dew every day.

When I am flaring or thinking I am starting a flare, I turn to more and more fresh fruit and veggies as snack. The one thing I have found to be true no matter what is that most people with Fibromyalgia have a distinct lack of magnesium. So break out the almonds, cashews, pumpkin seeds and pine nuts for snacking in between meals. In the meals I tend to stick to dark leafy greens, Plain no fat yogurt sliced bananas and I might even top it with some flaxseed and honey, or my other stand by….lentils.  Fish and brown rice is a good meal as well that is rich in magnesium. Sometimes that is enough. Sometimes I end up mixing some Natural calm which is an easily absorbed form of Magnesium.

The other thing that is essential for anyone but even more for fibro people is hydration. Drink water. Drink more water. When you think you have drank enough water….drink another glass.  Constantly throughout the day. I often joke that the first thought on my mind when I wake up is coffee. I actually take my pills with about six oz of water.  I try to stick to the rule of anything I drink that is not water, I drink twice as much water afterwords. If I have a 12 oz soda, I drink 24 oz of water.  Not to get too gross but pay attention to your urine. It is a good indicator of where you stand hydration wise. The darker it is, the more water you need to drink. I am really a stickler for just plain water. Occasionally I will use Mio or something similar. I know some people don’t like the taste. Truthfully I didn’t either. I just told myself there was no other choice. For months I would gulp 8oz down as fast as possible. Now I wouldn’t say it was a love affair but water is good.

The best way for you and your DOCTOR to tailor your diet to help you is to keep a food journal.  Keep one for at least six weeks minimum. It needs to list any and all symptoms along with the foods and drinks you are having.  This was how I found I have  a pretty severe intolerance to corn. You will start to see some consistencies in what you eat and symptoms you have. Don’t discount symptoms that start two to three days after eating a food either. You are looking for patterns here. It is not always an immediate response. Explore what happens when you cut out gluten, or lactose..Or both. I can handle lactose and gluten . I tend to do better when I don’t drink real milk which is okay for us since my daughter is lactose intolerant. It can be hard when others don’t have the same dietary restrictions. Ideally also incorporating anti inflammatory diet aspects in during your food journal time is a worth while investigation.

Do I cheat on this? ABSOLUTELY. There are days that sugar and caffeine and sweets are what keep me going. Is it good? Nope. Is it necessary? I guess that is specific to each person. For me it is.  Are there days that I stop at whole foods or our other market for a nutrient rich smoothie…. Absolutely. You do what you can when you can.

Start small. Start with the food journal. Discuss things with your doctor. A tip is to ask to be scheduled for a longer visit so you don’t feel rushed.

The only other tip I can think of is… this ..and this kinda rocked my world a bit… Morning is not always the most ideal time to take a multivitamin. For me, most of the time ten or eleven thirty is a good time to take it . There are mornings I wake up and know that it needs to be in my morning meds. I could get on my soap box about multivitamins. I will only say….quality counts. Also finding one that is a MultiVITAMIN and a MultiMINERAL is superb…It is always a good investment in my opinion. ALWAYS.

So that is all well and good. Then we look at what doesn’t help, often its the things us mothers use to survive.

Sugar is a big for me.  A really big. I have this little thing called yeast. It likes to grow out of control. It corrupts my brain into believing we NEED IT.  A good substitute for sugar craving….grapes. They have a lot of sugar in them. It works for me most of the time. When I am trying. Let’s face it.There are certain times of the month that grapes are not going to cut it. Unless they are fermented. Then they might have a chance.When I do indulge I like to eat some yogurt and extra water to flush.

The biggest thing I have heard is that , its too expensive to buy fresh fruit and veggies.

If you feel that then you need to look at what you are buying, and when you are hungry.

Buying veggies that are more filling like root veggies helps. Carrots are a great snack. They are also surprisingly filling. Celery with peanut butter. Filling fruits would be apples and pears. We also like to snack on Cucumbers and cherry tomatoes. Sometimes we mix them all together for some variety. Look up serving sizes and seperate it out into ziplock bags. It surprised me how long it lasted. We were still at the store every three to four days for fruits and veggies. Save your peaches, berries, kiwi, and other citrus fruits for balance in meals and desserts.

Pay attention to how you feel after processed foods. Chips, pretzels, snack cakes, and such. Your body is talking to you.  There have been times I have known within minutes of trying something that there was no way I was going to tolerate that. No matter how much my brain tried to tell me how good it is.

The less packaged processed foods I eat the less often I need Tums or Rolaids to come to my rescue.

The best eye opener for me was that first week of my food journal. My body was screaming at me. Telling me what was and was not working. I wasn’t listening.

I can’t say I always listen. I can however say when I don’t listen I pay for it. It is all about balance.

Serenity Sunday 1-12-14

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Oh serenity, I feel I have left you behind. You are so easily overlooked.

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Sometimes Serenity is just sitting in the field while the kids play and talking with another adult. A nice breeze, a sunny sky in short, serenity.

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Sometimes it is just knowing that my kid is comfortable enough to wear what she wants how she wants and when she wants, despite what others think.

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Sometimes Serenity is just in the everyday things. The flower in front of my house. Remembering to look up at the sky now and then. Appreciating the difference in the everyday that is brought by fog.

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Princess P brings me so much serenity, her tiny feet. God I love little feet. Her smile. Her faces. Even watching my husband interact with her. There it is. Serenity.. Even a bit of heartswelling for this amazing man I married.

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A lot of times Serenity is there in the little every day family things. The quiet moments in between the noise and the chaos.  The simple moments.

These are some of the things that brought you Serenity

Heather Hudall Sent in this awesome picture

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This is definitely a serenity moment!

Pacing is a must

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It is a must! As in not an option.

Sometimes pacing is:

Take the stuff out of the dryer. put the washer to the dryer .new stuff in the dryer…and lay down. Sometimes you have to lay down the entire 60 minutes that the laundry is going.

Sometimes it is setting an alarm for fifteen minutes and chipping away at the housework then setting an alarm for thirty minutes of rest.

What is not pacing is what I tend to do…..

Get up take the kid to school go clean a house, go to lunch with a friend hit the grocery store pick up the kid, come home make dinner, get the kid to do homework and take a shower and read and get in bed. At which point I collapse into bed in an exhausted pile of goo. Brain function left somewhere around dinner time. I may be ready eleven hours later to maybe contemplate getting up to take the kid to school. Maybe.

Then there are days like yesterday

I got up got the kid to school, even packed her a lunch, came home, RESTED for about an hour, then did some work on the church facebook page, got up moved laundry along, sprayed down the shower with limescale remover and a dash of bleach to the tough area, set the timer for twenty minutes, did some dishes, rinsed shower off when timer went off, RESTED for about twenty minutes or so, ATE lunch, a good balanced lunch, Did the floors, went to church meeting where even though thinking was involved it was two hours of sitting, worked on church facebook page a bit more for twenty minutes, went and got the kid from school, sat in the field while the kids played for a bit, picked up the husband, went to have frozen yogurt, went to target(where i kicked it with cartwheel) and then we went to a friends house where sitting and relaxing and talking happened, then home for dinner shower and bed. I really don’t think I was awake any more at 745. However I put my bedtime at 815 because I responded to a text then.

It was busy, It was productive but there was lots of resting times worked into it. I didn’t feel overworked or burnt for more than ten minutes at any point. I RESTED.

I would love if my days looked more like this. Productive busy but also a lot of self care worked into it.

Of course even that might have been pushing my boundaries a bit as this morning was spent mostly in bed,sleeping, however that could also easily be my med changes because I added prozac yesterday. Hard to tell which.

As a mother it is hard for me to work in self care. To schedule it into my day. It is a must , it needs to happen. Pacing is self care. It really is. I found if I scheduled it, I had less guilt about it. I was sticking to my schedule, nothing was being put off. If you have to …schedule it. Pacing is just as important as remembering to take your medications, get that bloodwork done, go to the doctors.

 If you have to, wake up earlier so that you can get up, get dressed, lay back down. get up take pills, drink coffee, lay back down. Believe me I have done this. I have been there. Days where even just standing up is exhausting.  At one point I was taking my morning medications when my husband had to go to work, at 545 am and then going back to sleep so when the kid got up at 630 I had a chance of actually being able to get up with her.

The more time we take to balance what we are doing with resting , the more productive we are.  It takes time and dedication but you can increase how long you are able to be productive. At one point twenty thirty minutes was my max before I would crash and need to rest for often hours, now I can get away with a fifteen to thirty minute rest most of the time.

Of course for those of us with multiple chronic illnesses there is only so much you can prepare for , however pacing is still just as essential, almost more so. I know I can keep my fibro pretty happy between meds, supplements, pacing and resting.  Degenerative disc tends to like to listen to barometric pressure changes more than me. However if I have been diligent with meeting my fibro needs, the degnerative disc flares are easier to handle and often less intrusive than they could be. All bets are off when IBS flares though, nothing makes that monster happy. I know how to manage it and I know when I am cheating on managing it , I will pay. It has a way of making you pace yourself though, only so much can get done between running to the bathroom.

A lot going on in there

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On the tail edges of my cymbalta withdrawl, I have been completely off of it for four days. I will be starting prozac on monday. All that to say, I have not been able to handle my normal amount of stimulation. I can’t have the tv on while I am on the laptop while also sending texts, while having at least ten tabs open on the laptop. I have been reading more. Sometimes it is my current books that I am reading,yes books as in plural..I have three going right now. Sometimes it is blogs. I have taken the time to go a bit slower. Really digest what each blog I read is saying. You know I have been really big on #Depressedbutdressed in collaboration with It’s not my workout.  For once I have been taking the time to follow embedded links. It is where I stumbled upon One Little Word (http://aliedwards.com/shop/one-little-word-2014). I have been thinking and reading other blogs that have posted their word.

What would my word be?

Sorting through words that describe me, or that I want to focus on, or that I want to be better at, I come across these.

Love

Honesty

Integrity

Courage

Thrive

Inspiring

Starting to break these down into what I could do with them on my own since I can’t pay for the workshop right now, it was interesting to me. Even a little eye opening.

Love being the first one. Without love I am nothing. If I don’t love myself I can’t love others. Love must coat and cover everything I do without smothering at the same time. There is one song that I will always always always sing out at the top of my lungs when it comes on. It is the one that when I am having a bad day, it starts to turn it around. Love is all you need by the Beatles. It is not by coincidence that the very next song on my playlist after that is Eight days a week. I may have a thing for the Beatles huh. I mean those two songs just say it all.

Honesty is the second one I keep close. I love the TV show Bones primarily for Dr. Temperance Brennan. I admire her ability to be honest,even if it is socially painful sometimes. Really we need more of that. Maybe a little less of the ego but, I have to say she has earned her ego. When I was in the midst of teenage years and untreated ADD/OCD I was really horrible at honesty. For me this word still circles around love as well. When you love someone you want to be honest with them. When you start by loving yourself, you tend to be more honest with yourself. Even when it is not pretty.Once you do that, being honest with everyone is a natural next step.

The third one may catch some of the people who know me off guard. I have been told over and over I am so courageous to deal with what I deal with everyday. I am glad I project that. It is not however how I always feel. Most of the time I feel like Piglet. Piglet doesn’t even realize that sometimes just the fact that you keep going is courage. It is something that escapes my notice a lot. Yet again I find that this word ties into the first two. Because I love myself, I can be honest with others when they say I so admire all that you do on a daily basis. I can tell them, thank you it means a lot to hear that because I rarely feel I am doing anything really major. I am again forced to stop and think about what exactly I am doing everyday. What I am doing that they admire.

Thrive has really what the last year almost two years has been about for me. Finding ways to thrive in spite of everything that is going on. Finding happiness during hard times.  I am not letting go of thrive either. It is an ongoing pursuit and goal.

So the last word I came up with is inspiring. I didn’t start my facebook page or this blog for anyone other than me. It was more of an attitude of this is for me and if it helps someone else great. It has been slowly shifting to , I want it to inspire others. I want it to show others that we are not just our illness. I want it to show others that there is no reason you can’t thrive in the life you are living right this very moment.In an odd way this started about me, became about others and is slowly becoming about me again. Becoming about me as others inspire me or ask for advice, I tend to go back inside myself and look at things. I have made progress in areas because others asked for advice and I had to really look at something. Often times it was something I knew I was sort of dealing with but not really. Others have become my inspiration to keep making progress on my own issues.

I don’t really think I could find one word that I would stick to. I will keep thinking about it and I have followed some specific blogs that are participating in one little word. I want to make sure that my ADD does not let this project fizzle out of my head and get lost in the 1,324,4545,4591,342,528 other things that my brain likes to bounce around.