Susan G Komen 3Day in Philly 2014

WOW!! Where do I begin?!      

What an experience. Last year I thought it was the greatest experience I ever had, and partly thought I was just doe eyed in the face of my first 3Day, but NO. After my second, I can truly say it's the greatest experience you will ever have. I was not hesitant at all about doing this again at all. I did worry there would be rain because it caused me so many blisters the first time, ICK, but there's nothing you can do. Just prepare the best you can. I was alone. And planning on driving down the night before and staying the Sunday after at a hotel before I drove home. The host hotel ended up costing too much (approx 200$ a night!!) so that was out. $ for the hotel, $ for long term parking, and $ to get the shuttle back to my car after the walk...plus incidentals..I wasn't going to go.

 Then I connected with someone who was also walking alone and felt I really had to find a way to go. My husband reminded me how many things I have done and what I can accomplish, both when ill and when healthy, and suggested I drive down Thursday night midnight..and go straight to the walk. Also to just drive home afterwards. I thought he was crazy at first but then I was excited. It was another challenge for on top of the 3day itself so I was up for it!

My walking buddy said "NO WAY". She found someone on the 3day message board looking to split a room with someone so we connected, decided to share the room just for Thursday night, and I would still drive home after. Weight off my shoulders!

So prep for the 3 day in regards to fibro and pain management/prevention: 

ALL my vitamins, and supplements. (I felt like a pill addict but better safe than sorry!) For the extended use of vital energy and nutrients it is very important to take what I normally do.

My anxiety med. My anti-depressant.

Compression knee and ankle sleeves and compression socks. To prevent and manage known spots that are prone to weakness and pain, and for recovery at the end of the day and overnight as well if needed.

 Grabber toe and hand warming patches. For the cold intolerance. This time of year the morning typically starts out very chilly and  slowly warms to very hot. With cold intolerance issues I had to make sure to nip that in the bud before the pain set in or I would pay for it dearly. Also sleeping on the floor i may have needed the heat for my back. (Turned out not to need those for anything thankfully!)

I tried to pack as little as I needed to so the suitcase would not be so heavy because of my back. We have help with it getting transported from place to place but still have a great deal of lugging around to do. 

Also I took my small Simple Hydration water bottle so I would not have to carry one. Life saver. I forget I have it its so lightweight and handy.

Driving: 4.5 hours drive time. 5 hours total because I made sure to stop after 1 1/2 hours, twice, to stretch, walk around, use the bathroom, get gas and grab a tea. Thank heaven for Teavana on the highway!! WHAT!?! Love it!!

My back hurt, my knees hurt, I fidgeted a lot to alleviate it, but I disguised it very well as "dancing" in my seat to the radio. I'm sure people who saw me thought I was auditioning for dance comp right there in the car. But there's something very exhilarating about blasting music and singing your brains out alone in the car.

I met with Ruth (the woman who SO incredibly generous to offer her room to share! God bless kind people!) in the lobby, when I got there. We talked, got settled, then later met my walking buddy in the lobby after she got there. We chatted, decided to go back and do the introductions with Ruth and eventually we all  ended up at Millers. We got to know each other a little better over dinner and planned on our meeting the morning. I used some time at the end of the day to go through my things more thoroughly in an effort to take even less but it did not really work out. Woopsy! I met June again in her room for a little more late night chit chat and then went to bed.

I did not sleep well without my comfy foam mattress but sleep is sporadic at home anyway. That morning I was up and ready and in the lobby making sure I found some sustenance. While on the AIP I knew food would be somewhat of an issue so I made sure I doubled up on the sausage and banana at the hotel because everything else was a no no. I don't want to get into a diary of the minute by minute of the entire morning (or the walk for that matter) but I will say that I did not get through opening ceremonies without shedding a few tears. I found another person I connected with by email, as did June so where I started as one..we became 5. It was wonderful (maybe Karma) that everyone was great and we got along. There's a lot of talking, laughing and sharing of stories wen you walk 20 miles together!

ME and June

Then there were 4!

June, myself, Sara and Ruth

Then there were 5!!!

Amy, Sara, Ruth, myself and June

We ended as a rockstar team of 6!!!!

Myself, Ruth and Ben, Sara and June. Amy already left, poor kid her blisters were pretty bad.

Jump to Fibro management: Aleve every 4 hours. The tag line says "all day relief" but for me it's exactly that..just a line. I get maybe 5 hours, but it sure does help while it's working. My vitamins and scrips at lunch and dinner. Nuun  once in the morning and in the afternoon. And a couple sports beans in between. 

Plain water and no other drinks at all the entire day.. I avoided all food that would cause me a problem!! I said not to all chips, treats, crackers, string cheese, cookies and most of the lunch food. These things are part of the AMAZING things provided for the walkers, and I was happy to see them there for everyone else. Susan G Komen has a top notch operation. And in addition there many many local businesses, shops and residents that had tables and coolers out for the walkers. Water, candy, cupcakes, crackers, fruit, even freeze pops! The city was amazing.

 

I did have to say "no thanks" to almost everything but it made the few things I ate all the more tasty. I had to peel out the ham or turkey or lettuce and toss the rest. A sad waste, but true. I did that both lunch days and also had banana, apple, or oranges with it because, again, nothing else was ok. I have to confess a small attempt at cheating with a Kind bar. Loved them when I ate them in the past. I took 2, ate one and an hour later I had cramps and gas so bad it hurt to walk. I kept a great face and faked it.  Lesson learned. I behaved the rest of the time. OK OK, another confession. Coffee..HAD to have coffee I mean my GOSH I'm walking 60 miles for crying out loud! Really?  BUT with that said, no cream/milk and I actually took my coconut sugar with me and used it so that was a win.

Breakfast and dinners same deal with the food. The spread was ample (wish I took pictures) but I had to have just meat and salad, fruit and veggies. Bacon!! Bonus!! I am a bacon freak so I had to go up for 2nds, and 3rds....Everything looked good but I felt so amazing with my routine I was not that tempted to stray from the program because I knew if it sent me into any pain Id be doomed for the rest of the walk. 

#totallyworthit 

Some people said what I have already heard a million times.."what the heck can you eat?" "what about nuts?" "what about the cheese?" I like explaining AIP to people. I use myself as an example of how changing your food and adding any exercise you can change so much of how your body responds to many different conditions. I see a lot of people agree and respond with positive feedback so I hope I am spreading some awareness. Also giving a better example of how people with Fibromyalgia, CFS, MS, and chronic pain from other conditions can still live and be active and enjoy life in between the really craptastic days and months and even years we can hit with.  

A view of the city

Local school children cheering us on!!

The Mayor of  "Bra Street"

You all know what this is!!

Back to pain management! In addition to everything already listed, I used the magnesium after dinner to help with the absorption of my vitamins during my recovery time all night. I elevated my feet up on top of my suitcase during all my down time in the tent. I also used the compression socks  and knee sleeve from the time I got out of the shower and all night. I stretched everything A LOT and massaged my calves and hamstrings. I did shin strengtheners and foot exercise. 

I also did a lot of these for my lower back

At the end of the 2 nights the music, personal stories, Sheri P and Youth Corp were amazing to see and hear, but it was loud. For ME it was like shotgun decibel loud. My eras were ringing and things were getting muffled. I had to walk all the way to the other side of the room to talk or hear and it seemed I hadnt moved away from it all. That disappointed me a little that the hyperacusis wouldn't allow me to enjoy more of the festivities at night. Eventually I went to the other room for more downtime in the tent. I could feel my head was trying to star throbbing from the noise and decided "better safe than sorry".

                                           

If you prepare well, and take the time to set up your environment so you have the best possible outcome, you can accomplish and enjoy  more than if you do not prepare. 

I have in the past prepared very well, but still did not take the time to stretch or do the other things I should have, and I have suffered for it. You MUST know you are important and take the time. It matters. Every little bit of prevention or relief does a body good!! It seems daunting and time consuming but life really can be more enjoyable when you do it.  

Sara, June and I

I walked so fast I came in alone..a little anticlimactic!

When all was said and done, I came in 49 on Saturday and 59 on Sunday. I was feeling great. I even ran a little during the last 6 miles on Saturday because rain was predicted and I knew walking in the rain would give me blisters. The blisters nearly took me out last year so I wanted to avoid that at all costs. 

Its was not about how fast I went even though I like to go fast, I really just wanted to meet this challenge head on and tell fibro to "suck it". And I did!! I felt great and I loved every minute of it! I did miss out on some additional bonding with the rest of the gang since we ended up split into groups, but I was on a mission!

Ben (on the right) with his nephew who came to support him.

We picked up another walker Ben and ended up breaking up in teams of 2 all walking at different paces. I know the next time I will slow myself down a bit and hang out and enjoy talking about life more. I don't know how long my body will allow such things, so for now I will enjoy the connections I have mae, be thankful of the money I raise and be proud of the people I know who have survived and continue to fight this awful cancer.

.  

Sara, myself, Ben, June and Ruth (Missing: Amy)

On a side note in keeping with pain management information...It was very emotional. Laughing and crying, joy and relief and excitement were all energy suckers. It was especially overwhelming when the crowd dispersed after closing ceremonies. Everyone went their separate ways and I was left standing there alone. I had to get my suitcase, get on the bus and wait to get back to my car. It was depressing and sad to leave the new friends I just made, wondering if I would ever see them again. It drained the last  bits of energy I had left in me, almost more than the walking did. After I got home I had to do more of the same. Rest with my feet up, compression gear on and stretch and massage as much as possible. Drinking a lot of water, and getting potassium, protein and continuing all my vitamins and meds.

Its not done when your done walking. Just like aftercare from a surgery or injury, you need to maintain your healthy routine for proper healing. But I was extremely tired. So tired. Like walking zombie tired and for about 4 days it was all I could do to keep myself upright. I was getting in bed at 8 and sleeping like a dead person all night. I dont know if it was recovery, that I used up everything god gave me to make it through the walk, depression, or all of the above, But I was tired and grouchy. None was cooking for me, my friends were gone and I wasn't surrounded by droves of happy people wearing pink ribbons. 

I had to jump back into school buses, walking the dog and dance classes and it was...well...not as wonderful as what I  just felt for those 4 days. It was hard to shift gears emotionally and mentally and you have to be ready for that as well. You need to a plan in place which I did not. This was the first time I did a 3Day so far from home AND alone.

Other than having some time alone, or time surrounded by friends, piggybacking it on a vacation, or meeting with your therapist right away, I have no other suggestions at this point in time. 

I have just stayed in contact with my first walking buddy June almost daily and that has helped a lot. But a week and half later now and I still want to cry thinking about how awful it felt after it was over. 

Lord don't ask my why Im posting THIS terrible picture but as I share so much in the sake of education and information ...you must see it. You can see it in my face. I am am just so tired, disheveled, drained, and completely spent from the weekend. It all hit me when I sat on the bus to get back to my car.

Pretty depressing bus ride

Just a few more pictures from the weekend

Sixers center Nerlens Noel
Funny story that we were here at this particular moment!!

Wedding party running "The Rocky Stairs"

Infused water station

                         

 

 

The Thinker!

 William Penn on top of City Hall

Is "Autoimmune Paleo" an Oxymoron?

I am not going to go into all the details on the Paleo diet, OR the Autoimmune diet. There are so many resources on the web, all you have to do is a quick search. There are more popping up daily as these have been the "new" approaches to healthy eating and also helping with a variety of health conditions. 
So here we have a few great resource: The Paleo Mom, AIP Lifestyle, and Autoimmune Paleo.
Now its pretty clear the difference between them both so my question is WHY is there a term "Autoimmune Paleo" to begin with? They arent the same. They are similar but NOT the same. 

"The Paleolithic diet, also popularly referred to as the caveman diet, Stone Age diet and hunter-gatherer diet, is a modern nutritional diet designed to emulate, insofar as possible using modern foods, the diet of wild plants and animals eaten by humans during the Paleolithic era.^[1] Proponents of the diet therefore recommend avoiding any foods that they claim were not available to humans at that time, including dairy products, grains, legumes, processed oils, and refined sugar."

Well, that actually means  it should be devoid of any chemicals, additives, hormones, gmo's, or anything else we started adding in the 40's (and more aggressively in the 70"s).
So wouldn't that mean to be Paleo is to eat ALL organic all the time? 

again"..designed to emulate, insofar as possible using modern foods"

So that means you can' "really" be Paleo, just pretend  to be, and get as close to possible. I am not knocking it all. It is much healthier to avoid processed foods than to NOT. And your health can take a dramatic and beneficial turn. I myself did it for a while and felt great. But quite frankly I am uncomfortable calling myself Paleo because it truly by definition is not. 

 "Clean eating" is more appropriate.  " Real" foods -- those that are un- or minimally processed, refined, and handled, making them as close to their natural form as possible."

On the Paleo list of "ok" foods are eggs, flours, tomatoes, nuts & seeds just to name some. Also healthy fats include a list of  foods that are not all AIP approved. So You can't do both. You have to be on a Paleo diet or an Autoimmune diet. Nothing I have read fully explains the reasoning behind the term "Autoimmune Paleo" other than for the reintroduction of foods afterwards if you are using AIP as an elimination diet. You are urged to say Paleo by most advice. (*Of course it depends on what list/site you use.)

VIA  Mickey Trescott

There are some like myself who are not doing it as a 30 day,  6 month, or even a year program as I've read some bloggers have tried. If you stay on the AIP program "for life"
you are not Paleo.You cant be. 
Just because a vegetarian has a burger once doesn't mean the are no longer vegetarian.
If on AIP and you have a piece of wedding cake it does not mean you aren't on the AIP program any longer.
AS WITH ANY diet or lifestyle change, a treat, an allowance or even just unavoidable circumstances is perfectly ok. You may feel sick but you wont die!

Via Paleo Living Magazine

SO regardless if I stay Aip or not, I will never say I am Paleo again unless I am off AIP and actually on the Paleo diet. Its an oxymoron as far as I am concerned. But I will be thankful,  no matter what anyone wants to call it, that organic food is available, that my health is betting better, and we can continue to learn how to heal our bodies with food. 
Nerd Fitness: Beginners Guide to the Paleo Diet
The Paleo Diet
Pro's and Con's of Paleo via Huffington Post
A Clean Plate
PaleoNonPaleo: Is the Paleo Autoimmune Protocol too hard?

Looking for a job with chronic pain.

Being in control of your own workload and schedule for such extended periods of time put you (well, me anyway) at somewhat of a disadvantage when it comes time to look for work. Well, work in the real world. Where you are not approached for work on your terms but you have to seek it out, apply for it and then wait for the dreaded phone call, or lack thereof. I have reached that bridge that I have not been on for a long time and I have to cross it.  

Looking for a job with chronic pain.

First let's talk about the financial stress working only part-time and or being on disability gives you. Next to nothing. Even less than nothing is when there is only one person in the house providing for everyone including the person on disability.  I personally received from disability for one month what I used to make in one week!  I am not the only one in this position.

 Bills are past due, you are juggling who to pay and when, downsizing cable TV, letting your cell phone shut off and the list goes on and on. As if that stress wasn't enough you have the mini heart attacks that come every time the phone rings knowing somebody looking to get paid. It's not only headaches, tension, and increased  pain that are the result.  

Second lets talk about what it does to your spirit. You are not who you once were. You cannot do what you once did. You have guilt, shame, and cannot fully express it because you feel it would make you seem weaker than you already feel. It's emasculating, humiliating, heartbreaking, and embarrassing. To tell a landlord you will be late, or call the electric company and ask to be put on a payment plan, or to have to tell your kids they can't do all the extras at gymnastics because it cost too much, even though all the other parents seem to have no problem paying for it. It all adds up to nothing but more stress for our already taxed, beaten and exhausted bodies.

We reuse vacuum cleaner bags because we can't afford to buy new ones.
We don't get our hair and nails done because we can't afford it.
We don't get a massage after a hard day at work because it hurts too much, and even if it didn't hurt, we still couldn't afford it.  
Forget new make up or magazine subscriptions, drinks out with the guys, shopping with the girls, trying a new vitamin or supplement....none of that is really our reality.

Well, just get a job and we'll be able to have more money to get those prescriptions, haircuts, an extra gym classes for kids. Hhhhmmm.. Let's think about that for a minute.

Your hands, fingers,  and wrists will hurt from filling out all these applications. Gas time and energy is greatly drained going from place to place. And the mental capacity you have to have for the 20 minute "assessment test" they throw at you for the on-line applications might as well be a vacuum stuck to you ear sucking your brains out because you feel like you have none left by the time its over! 

Tip: try to find a generic one online and print it out, make copies and you may be able to leave your copy instead of filling out the new one every time .  
Trying to remember all the dates, supervisors, phone numbers and addresses with brain fog is practically impossible. You have to make sure that you have it all written down, saved in your phone or your notes or address book.
The anxiety of interviewing whether it's fog, anxiety, cognitive issues, or the fact that you're just out of practice is also stressful, and that's only if they call you back, which most places don't bother to do that anymore.
Tip: Write down what you want to say with some practice questions ahead of time. Run through it out loud in the mirror or with a friend so you will seem confident and ready.If you are still not sure, take notes with highlights and bring them. Notes can show that you are prepared and thorough.

So, now back to the job search. 

You can't sit too long, stand too long, bend over too much, lift heavy objects, or be in a loud environment. You can't be in an environment with a lot of different smells, odors or chemicals. You can't be in charge of too many tasks with deadlines a a time, or in a position with high stress. You need to be able to take time to move and stretch every once in a while, be able to take your medication when needed, water or food at the appropriate times so your body doesn't begin to get tired, shut down or you become increasingly confused.

Oh, and don't forget you need to find some place that will allow you times and days off for flares, doctors appointments, illness or anything else that might come up. We know how we can catch EVERYTHING that's going around.

Do you tell your prospective employer that you are on disability? Will they treat you differently or refuse to give you the job? Will coworkers treat you differently or expect less out of you because they know you have a chronic condition? Will they think you are looking for exceptions, or just seeking attention? Will they talk about you behind your back, or talk to you at all?

Do you have presentable clothes for your new work environment? There's another added cost before you have even received a paycheck! Should you try to find a job you can do at or from home? How do you find one? Are they scams? Are you at "that age" (which quite frankly at the speed we progress can be only 30!) where you need to take a class to refresh your skills or learn new ones? Can you afford it? Can you even do it? 
 I will stop here because not all experiences are this way. But for those of you who it is, you are not crazy! We go through this and it's not fun. 

Some of us are lucky and find a job with an understanding boss, great co workers and we are very lucky. Some us never tell our bosses and we push and push, and keep going and going, even when it seems utterly impossible. This always come with price, but we pay that price for the sake of a paycheck.
We do what we have to do sometimes, regardless of what we CAN do.

Miley Cyrus/Hannah Montana stools get a new look!

Miley Cyrus has died..well, at least in my house! No one likes Hannah Montana anymore. That has been true for many years but the kids have been using EVERY darn day the Hannah/Miley stools they have at the arts and crafts table for homework, projects and other things.   

I have been looking for some appropriate stools for a long time to replace them..too short, too tall, too cheap, to expensive, too much wood or too much plastic. In an attempt to not spend any  money (as usual!) I started brainstorming ideas...then I remebered the card table project it dawned on me that I can do the same to the Hannah stools. DUUUUU. I swear the fibro fog makes some very basic, obvious things escape me for far too long. 

So I started by flipping over the stools and unscrewing the bottom from the top.

I used a flat head screwdriver to remove the staples as the staple remover was not up to the job!

Surprise! Its just a piece of cardboard with a thin piece of foam to protect the tushy.

I had the kids pick out the fabric they liked. I certainly would have done all four matching in something a little more sophisticated but the stools do belong to them, and it's a new practice of mine to NOT be in control of everything...(gasp at the thought!)

 SO I laid out the fabric and got to stapling. (Before you staple read the tip below!) You have to pull and staple, turn it a little, pull and staple, and repeat a million times since its circular, you obviously want to make sure there are no bulges and gaps and when its flipped over its still in the shape of a soothe circle.

 

So after I was done I flipped it over to admire how awesome it was and ran my hand along it to revel in how smooth it was aaaaand I was immediately stabbed by my staples. BOOOO. No one wants the kids bums poked with staples!!

Tip: Make sure you are using staples that are not too big to go all the way through the cardboard. I knew the staple gun staples were too long, so I assumed without checking your everyday run of the mill paper stapler would do the job. WRONG

Staples out. Second attempt.

Glue gun. Worked great. 

Problem solved!

Next was time to cover with the vinyl.

 Same process but you MUST take care with the glue gun here!! If you dab the glue and pull the plastic too tight the heat will melt it and it will rip, and you may have to start over. Position it where you want it and then just gently push down into your dab of glue and hold till dry. My fingertips did get a little "warm" a few times here and there so I did  end up using a pencil to hold it down and give my fingers a break. I also used the pencil to mark on the fabric where the screw holes were so I could line it back up with the bottom and reattach. 

So here is the finished product. They are extremely happy.

 Of course in my mind I had envisioned something along the lines of ...this...

or this...

or this...

But when they are finally done with them forever, I have great visions involving a can of spray paint, some tassels and some new fabric. I think if the thin almost invisible layer of cushion is removed, it would make a cute little table for a tiny spot next to my rocker..hhmmmm...