"I only get one life and I will not let Fibromyalgia take the joy from my living it."

Monday, February 28, 2011

Pen Pals, Dates & What's Your Name Again?

I have trouble remembering EVERYTHING. Our small group from church has been meeting at our house. Last week 2 ladies told me they would bring snacks last night. This yesterday morning at church someone asked if anyone was bringing snacks and I told them I didn't know. So she brought snacks. Then they all showed up with snacks. The ladies from last week couldn't believe that I didn't remember them telling me about it. They said, "you were standing right there." I realize that saying sorry only works for so long. So I smiled and said, "I really just wanted it to be a big party since it's the last week."

The Fibro it affects my ability to write. Thank you for typing where I can edit easily! I have a pen pal. I noticed this weekend how bad it has gotten. When I finished my letter and went to edit it I had mistakes all over it. Things like saying "our" when I wanted to say "of" or "that" instead of "the". My spelling is okay for the most part. But it's like I'm dyslexic with words. I used to be such a great writer. Now it's a challenge. Blogging makes me feel a little better because I do have spell check and I can edit several times before publishing. Sometimes it takes several reads to catch my mistakes.

I also can't remember anything that's going on with others. When people give prayer requests I try to remember. I can remember that something is going on. I can remember if it was a friend or family member but I can't remember who beyond that. If they were ill, I can't remember what was wrong with them. It makes me feel terrible when I asked them how it's going because I sound like I don't really care because I don't remember the details. But I do care because I'm willing to look like an idiot to ask them. That's how much I really want to know the update. It does help that in our groups there is one person who writes all the requests down and then emails them out. But I still can't remember the details later. And for birthdays I find that birthdayalarm.com is very helpful because they will send you emails to tell you when a birthday or anniversary, etc., is coming up.

I just feel like my brain is falling apart. When I try to apologize to people and I say Fibrofog and explain it, they'll say, "well, I have mommy brain" or menopause, or whatever. They don't understand that it's not the same. I'm literally losing my mind. Not like I'm going crazy. But I was so smart. It's a disconnect between what's inside and actually getting it out of my mouth or through my hands. There's literally a wall. There is a really intelligent person inside of me. But she can't come out to play. She can no longer communicate with the world. This is one of my greatest pains caused by Fibromyalgia.

Wednesday, February 23, 2011

Breakthrough Buckwheat Breakfast!! by Sarah

Ok, maybe breakthrough is a bit of an exaggeration, but I have discovered a new breakfast option I’m excited to share.  I found this Creamy Buckwheat Cereal at Whole Foods and thought it would be a great alternative to oatmeal.
 I fixed it with butter, cinnamon, nutmeg, Stevia and coconut milk.  Sounds delicious, doesn’t it? Well, it really wasn’t and I was disappointed.  I let the cereal sit in the cupboard for a week and thought about what else I could do with it.  I had my breakthrough this afternoon as I was making Bri’s peanut butter and jelly sandwich.  The peanut butter smelled sooo good and I did a bad thing…I cheated on my diet.  I ate a whole, heaping spoonful of peanut butter (peanuts are not allowed because they usually have mold on them.  Not helpful when on an antifungal diet).  So then I did another bad thing…I fixed a bowl of creamy buckwheat cereal and mixed in another heaping spoonful of peanut butter and some Stevia. WOW and YUM!!! It tasted like I was eating a peanut butter cookie. So, I figure if I use cashew or almond butter instead of peanut butter, it will still be super yummy and kosher for the diet. Here’s what you need:
  • ¼ cup of Creamy Buckwheat Cereal
  • ¾ cup of coconut milk (unsweetened)
  • 1 large spoonful of cashew/almond butter
  • Sprinkle of Stevia
Mix well and enjoy!

**Those with Candida react to foods differently.  These recipes are based upon my reactions to food and should be altered to fit your unique dietary needs.

Thursday, February 17, 2011

Wipe Out!

Saturday was such an emotional day. My husband asked what was wrong and I whined, "I don't know!" He said, "it's okay, you're just having a blue day." Well, early Sunday morning I found out what was wrong. Good old menstrual cycle. For the next four days I was completely wiped out. I could barely stay awake. I was sleeping in until 9 and going to bed before 9. It always does that to me. But this time I was more depressed than usual. I'm just now bouncing back.

Wednesday, February 16, 2011

The Moldingly Obese

Have you ever noticed that fat people stink? I know I sound very insensitive and politically incorrect. But now that I myself am fat, I feel like I can say something about it. I mean, I don't think of myself as obese, although some doctors may. None of my doctors have ever suggested that I lose weight. Maybe because they know my circumstances. Or maybe because I'm really just what I consider myself to be, simply overweight. However, now that I am fatter I am very self conscious of becoming a stinky fat person. You know what I'm talking about, right? Really obese people have an odor about them. I've always thought it was because they had a difficult time showering or because they sweat more. Either way, I am determined not to become one of them. I've thought someone should speak out and help these people. But I don't want to reveal myself and my secrets to the world. But I was recently watching an episode of Bones, the television show about the crime fighting forensic anthropologist. She and her FBI partner walk into a room with a 500 pound women. Booth says, "What's that smell?" Bones stoically replies, "Mold. It grows in the fat creases of morbidly obese people." GROSS! So I decided to go ahead and tell you my secret to not being a stinky fat person. First of all, when washing I make sure that I wash well in the creases of my back fat. There, I said it. I have back fat. I still can't believe I just said that. UGH! Anyway, moving on. Be sure to rinse well and then dry well. Here's the big secret. Deodorant! Nothing perfumed either. Just powder fragrance. I use Dove. I wish the deodorant commercials would say this. I put deodorant under my breast. Let's face it, if you're bigger than a C cup you need it there. Skin on skin feels icky, especially when it's sweaty. Then I put deodorant in the creases of my back fat. OMG! I said it again. I have lost my mind! That's my big secret. You'll have to reread that last sentence because I am not saying (or typing) it again. But seriously, tell this secret to your BFFs. Your Best Fat Friends. Just don't point them to my blog. Despite the fact that I put it on the internet for the whole world to see, I don't really want everyone to know this about me. The reason I decided to write about it is because of my sensitivity to smells. When I smell things I get sick fast. This includes body odors, even my own. So do the world a favor, spread the word that deodorant is not just for underarms anymore.

Thursday, February 10, 2011

Bradley wants to be El Rey Fido 2011

My names is Bradley and I am almost 2 years old. I remember being taken from my mommy and littermates at only 5 weeks old. I went through 3 homes before being orphaned at a vet's office. When I was only 8 weeks old I saw my new Mommy for the first time and it was love at first sight, although Daddy took some convincing. They adopted me but I didn't get to go to my forever home until I was 10 weeks old because I was sick. But once I was home I met my best friend and big brother Brodie. Shhh, don't tell him, but he was a purchased pup. I would like to raise money to help all the doggies (and kitties) out there find their families. It's no fun when you don't have a place to belong. So please help me become El Rey FIDO 2011. If I'm crowned I promise to give everyone I see a big lick on the face. Well, maybe I'll do that anyway.

* To become crowned El Rey Fido IX in April 2011, your dog (and you) must collect more money for the orphaned pets of the San Antonio Humane Society than any other canine-and-human pair. The fundraising deadline is March 25, 2011 at 5 p.m.  
**The one dog who garners the highest number of individual contributors (regardless of the dollar amount raised) will get to be on the royal court.

  To see Bradley's fundraising page, click here.

Monday, February 7, 2011

Energy Chart

I continue to search for blogs of moms with Fibromyalgia. I want to have some support system in place before we receive any foster babies. I've not found much, but I did run across this energy chart on Moms in Flight. It's a pretty neat little tool for easier communication within the family about your Fibromyalgia. The chart includes your likely symptoms that day, your activity level and what you need help with. This is what the author says:
"I have this printed out, laminated and I placed it on my refrigerator door where everyone can see it.  Then, depending upon the level number I am at, I have little arrow stickies that point to that level.  Then everyone in the house knows how I am feeling that day and I don't have to make a point of telling everyone how I'm feeling.  I save energy by not having to constantly remind everyone how I am feeling (and everyone doesn't have to hear me complain!!!!!)"
If you have the chart laminated you could probably use a dry erase marker to indicate your level. Or if you don't laminate the chart, you could use a cute little magnet to put next to your level. I say that because I don't know that a little magnet would be strong enough to go through a laminated sheet. Hope this comes in handy for some of you.

Sunday, February 6, 2011

Baby Shower for the Mom with Fibromyalgia by Chantal

If you are having a Baby Shower keep the following in mind:
  • Plan to have the baby shower at least two and a half to three months before your due date. This will give you plenty of time to both get organized and relax before baby comes. Remember you are working with a limited energy supply! 
  • When addressing shower invitations keep all records on the computer and print them on address sticker labels. Print a second set for later for the Thank YOU cards. Save this information on the computer for additional use with the Birth Announcements. 
  • Keep a detailed written record of all the gifts that you received. Fibro fog, as well as, pregnancy fog can sneak up on you! 
  • Registering online saves time and energy. Call the stores ahead of time to find out their return policies. Some stores that have items available online only, if returned, need to be shipped back to the store with the shipping and handling charges billed to you! 
  • Save all gift receipts from items you receive, especially the larger ticket items. You might get doubles. Most stores have a 30 day return policy after your shower date with the receipt. 
  • When buying baby clothes; buy larger sizes. Not only will this help you save money, it will also make changing baby easier on your fingers, hands, and wrists.Onesies, sleepers, and sleepsacks are must have daily clothing items. In fact, they are all you will need for the first four to six months depending on the season when baby is born. . Halo Innovations makes a sleepsack/sleeper combo that zips from the top making nighttime diaper changing simple. Available online at www.walmart.com. Halo Big Kid’s sleepsacks are wonderful for when baby is bigger. Available online at www.Target.com. 
  • Choose zippers over snaps –never buttons--especially if you are like me and have the fibro in your fingers, arms, hands, and wrists. However, if you do buy snap clothing, look for a simple snap outline near the diaper area with a curvature of the snaps that leads down the front of the torso and tummy areas all the way down to the diaper area. This design makes taking the feet out for diaper change much easier on your fibromyalgic fingers and hands. You will exert too much energy otherwise trying to button or snap.  If you buy the snap sleepers; be sure that the snaps are around the diaper area for easy access. Make sure that the snaps are not just down one leg. When baby becomes a bit older and starts to kick and to roll over on the changing table—a trick I use is to keep snapped one or two snaps at his ankles. Take his feet out of the sleeper but keep these snapped. This allows for a good “latch in” when dressing baby.
  • Invest in a digital camera and a camcorder. Buy the DVR’s before you go to the hospital and pack them in your hospital bag. This was one item that I overlooked that I now regret as I don’t have newborn film footage. At the time, I couldn’t imagine having the birth filmed so I didn’t think ahead about filming the baby at the hospital.
  • Make sure that you choose some heavy duty baby photo albums and put them on your Baby Shower Registry. If you don’t’ end up getting them at your shower, be sure to buy them before baby arrives. Buy more than you think you will need. Get organized and label them with large address sicker labels ahead of time. You will thank yourself later. I didn’t do this and ended with 11 months worth of pictures to sort though and file!
  • If you are using disposable diapers, the Diaper Champ is wonderful. You can use regular trash bags with it.  It is my pick over the Diaper Genie.
  • If you are breastfeeding, Bravado bras come in plus sizes too and they (online) are wonderful. Their washable breast pads are the best too!
  • When you buy the car seat--make sure you buy the travel system with the stroller. I bought the Graco Snugride and LOVE it! You will use the stroller almost as much as the car seat. Realize that due to your fibromyalgia, and depending on your vehicle you may have to position and place the car seat behind the driver’s seat side or directly behind the passenger’s seat side; instead of in the middle of the back seat, for easier access. Also, to avoid more muscle pain and fatigue, enlist others to carry the baby in the car seat to and from the car. You will get plenty of chances to carry the baby throughout your day.

Baby Registry Must-Haves for the Fibromyalgic Mother-to-Be:
On a budget—www.craigslist.org sells gently used baby gear;
www.freecycle.org lists free items ready to be discarded

(Copy this list, take it with you, and use it as your guide.)

Remember to register for larger sizes too. This will make changes easier on your fibromyalgic fingers, hands, and wrists. Also, babies grow quickly, and you might end up with a nine-pound-plus baby, like I did, who was wearing a size twelve months at six months!

Bolded items are my “Best Baby Invention” must-haves, and I have rated my top ten for you.

·        6–8 Sleepsacks by Halo Innnovations. (These are usually part of the Layette, but not always. They are a must in the prevention of SIDS. (My #1 Best Baby Invention!) Available at www.target.com or www.walmart.com. Also available in larger sizes for toddlers too: Halo Big Kids.
·        2–4 Snack Catchers A special cup with a toddler-friendly lid and handles used for holding Cheerios and snacks without spilling or a parent’s help. Available online at Amazon.com (My other #1 Best Baby Invention.)
·        Graco Snugride Car Seat Travel System or the like. (Make sure that you buy the car seat that snaps into the base and the stroller that goes with the car seat. The stroller will double as a high chair in restaurants when baby gets older and can sit up. If buying used, check expiration dates. Regulations change and car seats expire every six years.) (My #2 Best Baby Invention.)
·        Crib Tent if you have cats for crib and playard. (My #3 Best Baby Invention.) Available online at www.walmart.com.
·        Graco Pack N Play—Great for travel and Grandma’s house. Can be used as both a changing station and a bassinet. (My #4 Best Baby Invention.)
·        Breathable Bumper—instead of traditional bumpers. This bumper will grow with your baby when he or she starts to flip over onto his or her tummy, and you won’t have to worry about baby getting caught under it. (My other #4 Best Baby Invention.)
·        Diaper Champ (My #5 Best Baby Invention.)
·        2–4 Munchkin Food Bags (My # 6 Best Baby Invention.)
·        Playtex Insulator Sippy Cup After trying several. This cup holds up when thrown and doesn’t leak. (My # 7 Best Baby Invention.)
·        2-Sassy Teether Car Keys (My # 8 Best Baby Invention.)
·        2–4 Sassy Mirrors for the crib and the changing stations (Best Baby Invention.)
·        Appliance “Locks” Self-Adhesive Locks that won’t damage paint and can be used in place of other cabinet and drawer locks. (My # 9 Best Baby Invention.) Available at Target.
·        Monkey Backpack Harness (My #10 Best Baby Invention.) Available at Target.
·        The First Years Night and Day Bottle Warmer Used for heating up bottles and jars of baby food. Includes a cooler. (Best Baby Invention.)
·        Straps for attaching bookshelves and other large furniture to the walls. (Best Baby Invention.)
·        Electrical Outlet Covers (Switch Plates) that move. (Best Baby Invention.)
·        2–4 Sippy Cup Leashes available online at Amazon.com (Best Baby Invention.)
·        Exersaucer for when baby is around 6 months. (Best baby invention.)
·        Diaper Backpack Land’s End or Dad’s Gear (Best Baby Invention.)
·        Crib that meets today’s safety standards.
·        4–6 crib sheets.
·        Bassinet—on a budget, the Pack N Play is sufficient until baby reaches recommended weight.
·        Changing station or two. (Make sure that they have drawers instead of shelves, as baby will pull everything off of the shelves when he or she learns to walk. And you will be out buying another station. Also, check the weight limit of the changing table. Some tables are made to hold only twenty to twenty-three pounds.) On a budget, the Pack N Play is sufficient until weight requirement is met.
·        Nightlights for bathroom, hallway, nursery.
·        Fifteen-watt baby lamp for nighttime changes that won’t wake baby.
·        Bouncer.
·        Swing, the Fisher-Price Take-Along Swing is wonderful.
·        2–4 Layette sets—(The layette set usually includes a onesie, a hat, a sleeper, and a sleep sack. Sometimes it will include a bib and booties.)
·        4 packages of onesies—any brand. All sizes. (I prefer Gerber, as they are stretchy, easy to put on with my fibromyalgic hands, and they grow well with baby.)
·        6–8 receiving blankets.
·        Package of newborn diapers.
·        10 sleepers—zippered are best for fibromyalgic hands.
·        2 packages of washcloths.
·        Gerber baby feeding spoons.
·        Madela Hand-held Breast Pump Starter Kit (I also purchased the Madela Electric Pump.)
·        Lanolin—if breastfeeding.
·        Soothies for breastfeeding.

Chantal can be reached at her:


Thursday, February 3, 2011

The Spoon Theory

I loved this video. I saw it mentioned in a comment on someone's blog. Christine Miserandino is describing to her healthy friend what it's like to not be healthy. Although she is talking about having Lupus I really identified with her.
"I explained that the difference in being sick and being healthy, is having to make choices, or to consciously think about things when the rest of the world doesn't have to.The healthy have a luxury of a life without choices."        
The having to eat first thing in the morning so you can take your meds while everyone wants to go out for breakfast. But if you wait until your out for breakfast to take your meds then your whole schedule is off. When she talks about having to decide what to do, literally, what to do in a day; because you know you will only last so long and it could affect tomorrow. I started to cry. It's so nice to hear it described in a way that hopefully a healthy person can understand. I face comments daily from people because they don't understand that I can't do it all or I physically can't do something that to them seems so easy, like getting makeup on or stirring while cooking. EVERYTHING has to be evaluated as to how it will affect me. Healthy people have a luxury I don't. And even good friends forget that I don't live in the same world they do.

Christine's website, But You Don't Look Sick, has a group on Facebook but I couldn't figure out how to post it as a favorite page on my Facebook.

Grief: How Low Do You Go?

It's been a hard week. Our friends lost their baby girl Faith. She was one week from her due date and the baby tied a knot in her chord. It's just been an emotional week. I still can't believe it. I was looking forward to mom using our nursery while she was at our house until we have a foster baby. I've got the nursery all set up. I had imagined our babies together.I had just seen mom that morning. She had just left me a voice mail telling me that she was bringing cheese and crackers to our house that night for our small group meeting. Then we get a call that they've gone to the hospital because she didn't feel good and maybe she was in labor. Then I get a call from our friend who said the pastor called her. The had lost the baby. We couldn't believe it. We just sat there for awhile. We tried to watch t.v. Rob eventually went to bed because he couldn't think about it. I just sat there in the chair staring into space. My grief overcame me. I knew that I was getting depressed and quickly. I went to bed with thoughts of Faith and our friends and woke up with my first thought on them. I knew I had to do something because I was becoming depressed so quickly. But what can you do besides pray? I know that's the most important and first thing you should do. But I needed to DO something. I've learned that my depression comes quick and hard. I spiral down so quickly, in a matter of minutes. It doesn't happen very often, but it hurts when it does. The say that depression is a problem with Fibromyalgia. I guess this is how it manifests in me. Do you have depression? What is it like for you?

So friends and I started talking about meals for them. They have so many friends. I know how hard it can be to get too many meals at the same time, always the same thing, or not enough. Someone recommended the Care Calendar which allows you to organize everything online while people visit the site and sign up for meals, errands, etc. I became the organizer. I just had to do something. I had to DO SOMETHING. My friend and I took them paper products and a meal. I took them a meal the next night. I fell into the position of coordinating the food for the wake. Thankfully I was able to do most of it online with the website, emails, facebook along with phonecalls and texts. I spent a long day at the church the day of the wake. It was being held there because of the number of people attending. I was exhausted I came straight home and went to bed. Then Sunday was a full day. Sunday night I felt sick. Monday morning I knew I was sick with some kind of cold. I did very well taking care of myself. Slept almost all day. Then slept all night. Tuesday I had to go to the bank and get dog food. One of those things you just have to do. I was worn out after that. I slept some more. I slept all night. I think I'm on the mend. 

So I learned that to get out of my funk I need to get off my butt. I need to  be proactive in taking control of my thoughts and serving others was a way for me to do that in this case. I also am grateful to have learned about Care Calendar. I thought that it might be helpful for you all. Are there times when people help you get to doctors appointments, bring meals, help clean your house? Those are all things that you can post request for help on the calendar and let people help you. A great way to organize it all. Check out the website here.