Tuesday, October 7, 2014
Thursday, September 4, 2014
I have had fibromialgia for nearly a decade now, and thankfully some really brilliant physical therapists taught me how to handle my fibromyalgia- changing the way the disease affects me a great deal.
The concept of activity mapping has saved my life so many times. The general idea is that you *never* overdo it. When they feel well, people with fibromyalgia tend to try to jam everything that needs to get done into that feeling well time.
The result, nearly every time, is a few days of utter uselessness. Our bodies take longer to recover from strenuous activity. I can remember this exact pattern, I would have a day where I was feeling normal and I would bust my butt to get everything done, and then lay around for 3 days in pain. By the time I was feeling normal again I had so much to do it was very overwhelming. I felt a lot of despair as though I would never catch up with anything.
Activity mapping is controlling the amount of physically challenging stuff you do no matter how you feel. Everyday you decide the few physically demanding things that you need to get done and you accomplish them and stop. No matter how good you feel. For a lot of months this felt extremely unnatural. After all when you're feeling good sitting down and resting doesn't feel right, but the result meant that the next day I could get up and do a half a day of physically strenuous stuff again! And then sit, and do it again the next day. The result was a lot more productive time versus time in pain.
It didn't take long for me to realize that stopping myself from overdoing it meant I could actually get most of my responsibilities done. It also meant better time management. And a lot less horrific down time where pain limited me from being at all useful.
You know what else? That time that I was forcing myself to sit down I wasn't sitting in total pain- I was sitting and I was pretty comfortable. I was working on my hobby of knitting or reading or researching patterns, or recipes on the computer. I was relaxing. And it was very healing.
You know what else was healing? Knowing that I was able to get stuff done for myself and my family.
Of course, fibromyalgia it isn't all about overdoing it and being in pain. There are many other things that affect and trigger fibromyalgia. For example if you eat certain foods, etc. You can still feel awful. But overall, the activity mapping was a winning way to live with this disease.
Today I'm finding what I learned by activity mapping is helping me get through the flu. My house is such a disaster area right now but I am determined to stay planted on my couch sweating out my fever and shutting my eyes to the mess around me. Lol.
A few years ago I probably would have pushed myself to try to clean the house despite having the flu... and I probably would have ended up with something much worse like pneumonia. See how these blessings in disguise sneak up when you aren't even noticing?
Posted by jamie rex at 9:40 AM
Friday, August 1, 2014
Its amazing, when you think about it, the things that you can do without. My husband has been retired from the Army since February and has yet to receive a single dime from the VA. He has worked several jobs that meet the needs of his disability, but nothing has come close to the money he made while in the service. That's what the VA money IS for... to supplement a man who is disabled from serving his country to keep him at a level of normal income despite his limitations. If the VA money had been coming right away like it should have been, (my husband settled his disability rating before he was even discharged, and the paperwork has been sitting there ready ever since), we wouldn't gave fallen behind. It would have been enough.
This week, while checking on the financial hardship claim we submitted 20 days ago- that was supposed to take 10 days- (when we actually got a live person the phone!!), I heard the guy on the phone tell my husband most vets lie about financial hardship. Yes, you read me right: the guy from the VA called my husband a liar. How my husband, my rock, held his stuff together long enough to end the phone call by telling the guy to have a nice night- I'll never know.
My husband has a diasbled foot and shoulder, a bad back,.adjustment disorder, PTSD... more.
We submitted paperwork for govt assistance for food... We got the card and it was ALL sorts of screwed up. First wrong birthday, then wrong social. I guess those are part of your pin or something. Still have yet to see the replacement. And do you know what we qualify for? $100 a month to feed a family of 4.
We borrowed money from my mom to pay for one car and thanks for the generous donations of friends and family and even strangers we've been able to pay for the other; we still owe my mom A LOT of money back. It had to come to being served papers to go to court to have our car taken for me to ask for help. I've also had the gas company come to the door and threatened to turn my gas off. When we were really stretched to the limits we were buying food instead of paying bills. Paying for a tank of gas so my husband can get to work... One day in particular I can remember that we had nothing left that we had a bunch of metal that we needed to scrap and we literally used our last $10 to get gas to get the metal to the scrap metal place. I kept hoping and praying that the tire wouldn't go flat or something on the way there or worse.
We had friends from church and the boys' school helping us weekly with groceries, which has been amazing. On our current budget generic walmart food and whatever is on sale is it. A long way from the organic choices we were starting to afford before all this happened.
Prior to our current financial situation we were pretty frugal people. Most of our furniture comes from second hand stores and some of it even from the side of the road. I will gladly buy a chair from Goodwill, and three quarters of my sons' wardrobe comes from there as well. They go though the boys section at goodwill with me to find things they like. I've taught them it's always better so save money than spend more when you can get something for less. When I can, I find what I need at second hand stores- be it clothes or shoes, pots and pans, bowls. We eliminated our cable TV over year ago, we don't spend a drop of money on alcohol. My husband's been sober for 4 years and I have an occasional glass of wine, now I just have to get it from someone else. Ha!
I can't tell you how many times this summer I wanted a glass of wine.
More about me: I've not had my nails done, hair done, hair cut at even a cheap place. I did these things literally once a year when I HAD money. Now. Not all all. When we had money I got most of my clothes at Walmart or the target clearance rack. Thats right, Target's regular prices are too high for me to afford. I don't buy or wear makeup. I don't even know most brand names of anything. My purses cost me $12 or less and currently ALL have holes in them. I don't soend money on hair products. I use cheap shampoo.
Usually in a spring season a spend money on plants. In the fall, yarn. Not this year. Even then, I spend a fraction of what most of the women I know spend on normal "upkeep"... on my plants.
Let me tell you: not having money to provide basic things for your family causes a level of stress that you can not imagine until you're in it. I suffer from anxiety and depression. I've spent a lot of this summer asleep. In too much fibromyalgia pain, and such deep depression that I can't bear to be awake. My thoughts consume me with worry and despair and when all the housework I can do (with my physical limitations and back pain) is done, and I've run out of pretty flowers to look outside, sleep feels like the only way to make it through the day.
The nightmares have been awful. I dreamt of every disparity you can concoct. Woken up needing to be held and consoled because I dreamt I lost my kids to illness or kidnapping. Just horrific.
Take a family who lives at frugal and cut their income by more than a third and you have family who really has to make magic happen. We've had yard sales, sold things on craigslist. We haven't eaten at a restaurant in months, and outside of the cherry berry gift card my mom gave us, and a delicious breakfast Theo's mom bought us in early July. Last night we used a gift card and I felt guilty for even that. And of course had nightmares. You can count out summer trips for ice cream.
We've never been a family who takes vacations. Our kids think Super 8 is a fantastic hotel! We road trip to sleep at friends houses or camp. Like in tents. For cheap.
We don't buy our pets toys, or have money for lawn fertilizer. Can't afford the soda at the gas station, or the snack stand at church league softball.
And you know dental insurance is over rated anyway.
In fact, I rarely leave the house. My son marveled one day, "Wow, I haven't gone anywhere in like 5 days!" We have no where to go. My weekly outting is church. Maybe walmart once. We can't afford the gas to even free places like the woods or parks. Yesterday we splurged and went to a free zoo and conservatory- an hour away.
Trying to hide all of this from our kids has been exhausting. We don't dare discuss it in front of them. Our kids are worriers. Ben would chew his nails and panic and Hunter might honestly just cry. But all summer they've heard "no," over and over... can we order pizza? Can we get ice cream? Can we go to valley fair (we've never been)? When can we go camping again? No. No. No. I don't know.
It's all I can take to fight back tears most days. I think I am to the point where I do cry once a day atleast. I keep reminding myself that worry is a sign of lack of faith, and one thing I know for sure is that I believe in our Lord. I know he's putting us through this for a greater reason than we can understand, and someday we'll be in his kingdom forever.
Please keep praying for us. Thank you for listening. I needed to get this off my chest.
Posted by jamie rex at 10:51 AM
Wednesday, February 19, 2014
You guys, I survived a month of the anti-inflammatory diet! I can barely believe it's already been for weeks, in fact if I hadn't written it down in my planner I wouldn't have believed it. The first six and a half days I had the most terrible headache. But since then it's been pretty smooth sailing... That is if you don't count my break down in the kitchen where I almost cried because I wanted cheese.
We switched to getting a majority of my foods at Trader Joes or Whole Foods. This adds drive time- as we live a half hour from those places, but it's been very worth it. One day in fact while my husband was at a job interview, I spent about 2 hours and Whole Foods reading labels, sampling things that they had out, and learning the store.
My idiots guide to anti inflammatory eating showed up in the mail yesterday, so I'm excited to crack that open today.
Meanwhile I made it through a whole trip to Peoria Illinois and back while maintaining my eating restrictions. I made this work by bringing along whole grain items I suspected I would not be able to get in that area (no tj's or WF there). I started out our Saturday morning with the trip to the grocery store with my mother in law to get some more of the things I would need. I even baked cakes for the family and had only one spoonful of frosting. My mother in law bought me some very dark chocolate and I had that instead of cake. Perfect.
Today I started taking turmeric capsules. Overwhelmingly people told me that it is fantastic for fibromyalgia, so I couldn't ignore the suggestion. My husband found it for me at Walmart for roughly $7. Not bad!
On a daily basis I'm making sure to get in all the things I need... And I can honestly say I have barely experienced hunger in any form. Stealing from Weight Watchers terminology it makes sense that when you eat filling foods all the time, you're full!
So far my favorite go to things have been Trader Joe's probiotic smoothies, steamed edamame, bananas, Trader Joe's whole grain flax seed crackers with hummus, multi grain flax seed tortilla chips guacamole made without Dairy, raspberries, and larabars.
I've very much have enjoyed the daiya soy cheese- I have the cheddar mixed in with a salad, and the mozzarella mixed in with brown rice pasta and chicken with mushrooms and red peppers and olive oil. I don't expect that it would taste good on its own but mixed in it does the job. I have also enjoyed soymilk and coffee creamer, almond milk, and coconut milk coffee creamer.
I have compromised and had occasional sour cream, and once I had cheese, but for the most part I have eliminated all white flour, eggs, Dairy, high fructose corn syrup, tomatoes, & potatoes. I have greatly limited sugar.
I lost 4.8 lbs in 4 weeks.
Our trip to Peoria was a last minute decision. We went in time to have a legitimate date for Valentines Day. Our initial plan was to go to the place we met the Chili's on University- exactly 13 years to the date. We were stunned to find how many people were already out to dinner for Valentine's Day at 4:30 pm!! After calling around a few places realizing no reservations were going to be available we drove past a place and Theo mentioned "I've never been there before." A quick call and we were seated at The Lariat, and enjoyed a delicious dinner. I would have to say the best meal I've had in my life. Our appetizer included smoked salmon, crab legs and jumbo shrimp with some of the tastiest cocktail sauce I've ever had. For our meal I had lobster and a baked sweet potato. The salad was also delicious with a lemon poppy seed vinaigrette.
We got home early with enough time to play more with my mother in law's new rescue dog Cooper. He is adorable! Even more cute when he's in his bow tie or the raincoat. We also got to take out the ferrets and let them run around. Very fun!
We took advantage of having actual television and watched a little bit of the Olympics. The boys enjoyed it very much. We also rented some movies, had the whole family over, celebrated a birthday, and my mother-in-law and I went shopping both Saturday and Sunday to a few thrift stores, Ross and Gordmans. I came home with some awesome treasures including a cute old kitchen scale, and a faux fur coat that is going to make me look like a proper church lady.
We came home to more snow- in fact the last half of driving was in snow. I must have been exhausted because I slept through most of Monday. I got almost everything unpacked though!
Such a great trip!
Theo started his new job yesterday and he really likes it! God is good.
Posted by jamie rex at 11:43 AM