Tuesday, March 30, 2010

Chronic Pain

As I continue to struggle with pain, I'm also noticing changes in my attitude and behavior. It's amazing how much pain can changes one's life.

I'm finding that it's affecting my relationship with others, even beyond my interaction with my husband and daughter that I touched on in an earlier post. I wasn't very outgoing to begin with, but now I don't really want to go out in a group. I also don't want to carry on conversations with others; this one really bothers me, but I know where it stems from. Over the past year, especially with my husbands help, I've realized how often I say the wrong thing. This just adds another magnitude on to my ongoing struggle of not being able to remember common, simple words (like towel, dog, diaper, etc) from time-to-time. Who knows how many times I've misspoke at work or in some other situation where my husband wasn't even around to try to correct me. I hate it, and the really bad thing is that I've even noticed it starting to happen when I type, too. I now have to try to proofread anything I type at least a couple times, and there are still times when I send or post something just to realize that I typed something wrong at a later time. Also, I used to enjoy the fact that I my written word came out "more intelligent" than my spoken word…that's quickly becoming a thing of the past, too. Ugh! I really don't like this.

Ok, beyond noticing that I'm becoming a bit reclusive :o), I'm starting to get a temper and become very short with people…including my daughter. What?! I know she's just 17 months (today as a matter of fact), and I love observing her as she is learning from her surroundings. I also know that she gets frustrated easily because she can't communicate everything she wants to, and she can't do everything she wants to do either. Her frustrations combined with how short-fused I'm starting to be, especially on days that I'm really struggling, are not meshing very well right now. Take last night for example, I ended up so frustrated and mad at myself it wasn't funny. I was trying to feed Trinity supper. After a few bites of the mac-and-cheese I'd heated up for her she started getting antsy and wanting down. Because of how she'd been acting, I knew she was hungry so I kept trying to get her to eat. I was even letting her feed herself, which is her new favorite thing to do. When she started wiggling around, I started "helping" her with the spoon. Pretty soon, she was waving her free hand up and down at me. She pulled the hand with the spoon away from mine and flung it to the floor and then batted the bowl of mac-and-cheese down, too (not before sticking her whole hand in the middle of the food). Then she was really waiving her arms around, mac-and-cheese flying off her hand in the process. I ended up spanking her before I even caught myself. Yes, that ended her fit, but that's not what I should've done. After she quit crying and totally calmed down, I realized her "fit" was the only way she knew at the time to try to tell me she wanted something besides the mac-and-cheese. Why did I do that instead of taking the time to figure out why she was frustrated (which is what I normally do)? Like I said, I was very mad at myself for doing this. I was in tears last night, and I'm even starting to tear up as I write this now.

I so want to find something that will stop the pain I'm dealing with. I know other people suffer through even worse things, and I honestly think that may be why I'm still finding the strength to fight this every day. I just continue to try to thank God for the day He has given me and find blessings each day. But that still doesn't stop (or reverse) the changes I'm seeing in myself.

I'm really getting to the point where I just want to lock myself in a room on my really bad days. Even though, most days, I am so exhausted I just feel like I want to go to bed as soon as I put Trinity to bed, I really think I'm going to have to start doing more research into Fibromyalgia, Limited Scleroderma, and chronic pain on my own. Maybe, just maybe, I'll find something that might help.

Monday, March 29, 2010

Parenting with a Chronic Illness (like Fibromyalgia)

I had to repost this article from the National Fibromyalgia Association’s website:

FM in the Family
Reprinted from FMOnline

Chronic pain adds an extra challenge to every task, to every relationship, to every aspect of life—and parenting is no exception.

Recently we asked people with fibromyalgia to share their parenting tips. No request for tips has ever received such an enthusiastic response. Clearly, people with fibromyalgia understand that maintaining healthy relationships with their children is just as important as managing their symptoms—and they have plenty of advice for doing both successfully.

Here we present a selection of the best tips we received, hoping that they will be helpful to other parents with FM.

Time Management
Parenting requires so much energy—and people with FM are constantly focused on how to use their energy wisely, without draining themselves completely.

Chris Robbins, of West Bend, Wis., spent three years bedfast, fighting infections and fevers—and she had three children to take care of. Her solution: she taught the kids to set the kitchen timer for 15 minutes; when it rang, one child would come into Robbins’s bedroom to check on her (and, though they didn’t know it at the time, to give her a chance to check on them one at a time). When she had to get out of bed—to make a trip to the bathroom, for instance—she used that opportunity to teach a simple household task to one of her kids. “Soon, someone could cook eggs or macaroni and cheese. Another child learned to do laundry and another, how to vacuum and do dishes,” she says. “They started young and were proud of their accomplishments.”

Now the mother of two teens and a tween, Robbins has her kids well-trained to carry a cellphone and check in with her regularly—though not, she quips, every 15 minutes.

Making preparations in advance is a great way to keep stress levels down, and energy levels from dropping too fast. Try making school lunches the night before, and teach the kids to keep their backpacks near the front door—already packed with homework and textbooks—so that all of you can rush around less before heading to school in the morning.

Also, be sure to write your children’s commitments on a calendar, so you don’t have to worry that you’ve forgotten that PTA paper drive, that school dance, or that book report due date.

A kid’s schedule can sometimes be a boon to a parent with FM, as Leisa Ryan of Coral Springs, Fla., points out. “My advice for new mothers that suffer from fibro pain and symptoms is to nap when the baby naps—always,” she says.

Kathleen Kay Muir developed a unique system to explain to her family what kind of day she was having. She broke the day into a ratio of work time and rest time. A “50-50 day” was one in which she had to work and rest equal amounts of time. This helps the family understand how Muir feels better than if she simply said she was having a “good day” or a “bad day”—and it helps her teen daughter intuit whether she and Muir can go shopping or hiking, or if they will enjoy a “PJ day” of chick flicks. She has also explicitly told her family which tasks particularly strain her; when her husband and daughter take on those chores—like vacuuming and carrying in the dry cleaning—rather than Muir being stressed or frustrated by the chore, she feels grateful for her family’s willing teamwork. 

For Michelle Hock, spending time with her kids took priority over anything else. When they were little—they are now teenagers—that meant playing with them when they wanted to play, regardless of how much pain she was feeling. It also took priority over household tasks when her energy was at low ebb. “Don’t beat yourself up because the kitchen isn’t clean or the laundry is undone,” she says. “The kids only want their mom—and they want her to be happy, healthy and pain free just as much as you want to be.

“Take care of people first—things later.”

Take Advantage of Alternatives
We live in a technological society—and that can be a boon for parents who are experiencing an FM flare.

“I made sure I had every video available that they enjoyed—also, a remote-control VCR,” says Susan S. Muehlstein. “I taught them how to change the tapes. Timers on TV programs are also great!” She also relied on an alarm system that sounded off when someone opened a door or window; even if she was resting in a different room, she always knew if one of the kids went outside.

Remember that there is a lot of educational programming on TV—your kids don’t need to watch cartoons all day.

If volunteering in your child’s classroom is out of the question, seek out other ways you can be involved. Perhaps you can take on a small PTA project, be in charge of email reminders for your child’s sports team, or be on a planning committee.

Develop a Tool Kit
You may have special tools you use to make housework easier; why shouldn’t you use tools to make parenting tasks easier, too?

If your child plays sports, bring a cushion to make sitting on the bleachers less painful—or a light folding chair to sit on. If your children are infants and toddlers, keep a bag of supplies—diapers, wipes, nonperishable snacks, and whatever else you may need during an outing—in the car.

Parents crave communication from their kids; parents with chronic illness need to make sure they are also sharing information with their children. “I try to let the kids know how much energy I have each day,” says Robbins. “It really helps what they will then ask of me or how they ask.”

Hock agrees. “Open communication about this is key, so the kids don’t think you are trying to avoid them or avoid being with them,” she says. “They are the most forgiving, understanding people on the planet; give them the chance to help you and love you through it.”

“I have a 4-year-old with a great imagination and energy level, and I have explained to her that I have a disease that some days makes me a bit sore and tired sometimes,” says Nancy in Pennsylvania. She also explained to her daughter some of the ways she is managing her symptoms, and bought a yoga tape the two of them can do together.

“The way I conduct myself with an adversity is the way she will see how to handle things that may come her way,” Nancy explains.

Cathy Stenger, who has a 13-year-old son and an 11-year-old daughter, is careful what she promises her children. “I never know what is going to come up that will use up my energy, so I find that in order to avoid disappointment, it's best not to promise something that I don't know for sure that I can follow through on,” she explains.

“My daughter knows that I have ‘an owie’ in my back and it hurts bad sometimes,” says Jennifer Betts, mother of a 3-year-old. “She shows true concern and helps me by picking up her own toys so I don't have to. Children understand a lot more than you think they do. And they love you unconditionally, despite your fibromyalgia.”

Tonya Walmer tried to prevent FM from affecting her children, despite knowing that was an impossible goal. With the help of a counselor, she came up with a way to offer age-appropriate explanations of her condition to her toddlers, who responded well. “That first conversation was amazingly helpful, but even more amazing has been the opportunity for openness and communication that it sparked,” she says. “Three years later, we have had many small conversations about life, the human body, FM, other disabilities, and even my children's own limitations. It has been truly incredible to discover that the very thing I was afraid to own is teaching my children—and myself—so many positive and wonderful things that serve them well now and will continue to influence them for the rest of their lives!”

One mom introduced her children to the world of FM a different way. “The best thing I have done was to encourage each teen that I could help them with a report or paper they had to write—if the topic could be on fibromyalgia!” Deb writes. “The end result was that they came out of it knowing all about the disease. Each of them came out with a greater understanding of why things were the way they were, why I reacted in certain ways, and how our lives were changed by the disease.”

No matter how carefully you explain FM, a sensitive child may react badly. One mom wrote us about her tween daughter’s excessive worrying; the girl is always checking on her mom, even when the mom says she feels fine. The two of them made an appointment with a therapist, who told the girl that she had to trust her mother when she said she was feeling fine—and trust that her mother would ask for help when it was needed. The therapist also emphasized that the child was not responsible for her mother’s health. “Although I have said those things many times, our daughter never really heard it until it came from a third party who she respects,” the mom wrote.

Be Child-Friendly
Keep in mind that your kids are a lot smaller than you are—but that doesn’t mean they can’t take on some responsibility, if you child-size it. Muehlstein used to keep small plastic cups in the lowest kitchen cabinets, so her kids could reach them to get themselves glasses of water; she also kept juice boxes and snacks on the bottom refrigerator shelves so the kids could serve themselves.

Tiffany Grimm, of Kenai, Alaska, has taken even more steps to allow her four-year-old son greater responsibility. “His clothes are in a cabinet that he can reach so he gets himself dressed,” she says. “There is also a hamper in his room for his clothes. It is small so he carries it to the laundry room on his own. As I am folding the clothes he puts away one stack at a time.”

Keep an eye on your medicines, too. Julie McCloskey, an attorney and a mother of two, keeps her prescription medications and herbal supplements in a locked safe, so the kids don’t have any opportunity to get into those bottles.

Younger children love to be picked up and carried around—something that can really exacerbate FM pain. A good option is to get down to the child’s level: play together on the floor, or snuggle together on the sofa. (A good stretching session before getting down on the floor may make playtime even easier on you.) 

Seek SupportMany parents reference a strong prayer life and spirituality as a way they manage their symptoms—and gain the strength they need to fulfill their parenting duties. Many are fortunate to have the support of their own parents, their spouses, and their children.

Whatever your situation, you must develop a system that allows you at least a little time to yourself, to relax, to meditate, to take a warm bath. If your budget allows it, you may choose to hire a babysitter once a month so you can have an afternoon all to yourself.

Part of a parent’s job is to set boundaries for the children—but parents with FM must also learn to set boundaries for themselves. “The very best thing that you can do for yourself is know your limits,” says Suzanne Stierwalt. “Know when and how to say no, and know when and how to ask for help.”

Walmer phrases it differently: “Put your oxygen mask on first,” she writes. Parents often instinctively consider their children’s needs first, but it’s important to maintain a balance. You can’t parent successfully if you are not meeting your own needs, and managing your FM symptoms. “If the balance is off too far in either direction, we are headed for crisis!” she says.

All in the Family
Is FM a genetic condition? That’s a hot topic in research right now, and the jury is still out on the extent to which genetics may influence whether a person develops FM. But what is inarguable is the fact that more and more kids are being diagnosed with fibromyalgia. What happens when a parent with FM has a child with fibromyalgia—and another without it?

“My 10-year-old girl has FM also and she has most of the symptoms that I have. I try to make it up to my 12-year-old girl, who is high energy, by doing things with her on my good days,” writes Shelly Tilley. “On my okay days, I do things with both of them, just keep it kind of low key. On my bad days, I cuddle up with the one with FM, and we make each other feel better just by knowing what the other is feeling. We do quiet things together, like reading, or watching a movie.  That's how I handle being a parent with FM.”

Carpe Diem
“Don’t let a day with your kids slip by,” advises Michelle Hock. “Do what you can do to be with them, pain or not; then rest later. The last thing you want to do is lose precious days with your kids due to this stupid, unnecessary illness.”

Remember that, while child-rearing can be stressful, it can also be joy-filled—and therapeutic in its own way. “My children have kept my spirits up and keep me very active, which is the most important thing right now,” says Juanita Martinez.

Seeking alternatives and creative solutions to parenting challenges can add up to wonderful memories for parents and children alike—and remember, the kid perspective is different from the adult perspective. “My kids remember the hardest times of my fibro (they were in their first years of school) as ‘the best times!’” says Muehlstein.

“For a while I felt like a failure as a mom because I hurt to much to take the kids to the park, play soccer, etc. One day my oldest son, when he was in first grade, said he felt so lucky because he had me around all the time,” recalls Mary Ross, who lives in Oregon. “This made my realize that while I couldn't necessarily be as physically active with my kids, I could still be a good parent for them.

“In fact, I think fibro has been a blessing in that it has forced me to slow down and truly get to know my children.”

“Be laid back,” Grimm adds. “They are kids. Their standards aren't high. It’s ours that are hard to meet!

“As a former child psychologist and teacher I would say it is most important to give your children their own responsibilities, help them understand and help, and be involved every way you can (even if that means watching a movie together or ordering the pizza for their friends).”

“We find small reasons to celebrate resting, or exercising to keep energy flowing,” writes Paige L. Koehler. She also makes sure to emphasize the things she can do, rather than the things she can't. “I couldn't carry my son—he was too heavy—but I used a wagon and stroller quite a bit,” she says. “I had to stop bowling, but I could still walk. I had to quit chopping and cutting food but I could still supervise a small cooking group with the family. 

“Find the fun, and you will do fine.”

Friday, March 26, 2010

Stream of Consciousness

My thoughts have definitely been rambling as of late. It's odd; it's as if I can't get my mind to cut off. It's in over-drive right now. It's really bad because I can't focus on a single thing for more than a few moments…therefore, this is probably going to be really jumbled. I will ramble a good bit, too.

I'm debating on trying Natural Bioidentical Hormone Replacement Therapy. I'm apprehensive about this because I know it's still relatively "new"... meaning no long running tests/studies, etc. With how complicated my medical history can be, will I end up just adding to the complications, instead of helping, by trying this?

Well, there's plenty of other things floating around in my mind, like I said at the beginning, but I'm even finding it hard to put anything else into words right now. Maybe, I'll post more later.

Sunday, March 21, 2010

Loving the Carousel at Gatti-Town!

Enjoying her 1st trip to Gatti-Town!

Trinity enjoyed herself at Gatti-Town this weekend. This video was taken while she was on the little dragon "ride." 

I'll post another of her first ride on a Carousel, while we were there, a bit later.

[Sorry for the poor quality; these videos were taken from my cell phone.]

Thursday, March 11, 2010


I am still determined to be cheerful and happy in whatever situation I may be; for I have also learned from experience that the greater part of our happiness or misery depends on our dispositions and not on our circumstances. We carry the seeds of the one or the other about with us in our minds, wherever we go.
- Martha Washington in a letter to a friend

Friday, March 05, 2010


... for I have learned, in whatsoever state I am, therein to be content.
- Phillippians 4:11 (NASB)

Thursday, March 04, 2010

Can I Give Up?

This year has not started off so great for me…at least as far as my health is concerned. Many times, I have just bawled to my husband about how I can’t take it anymore.

I’m tired… well, I guess, literally; I feel extremely fatigued. As I continue to get progressively worse, I’m currently at a point where I feel like I’m having to choose work over family. After I push myself to work and struggle through the day, I push to get Trinity home and ready for bed. As soon as I get her down for the night, I just want to go to bed. I usually do get in bed, but I try to stay awake until Chris comes to bed.

I’m tired… of being in at least some sort of pain 24/7 for over 8 years now. As time has passed, my pain level has continued to increase. Especially once the Fibromyalgia really kicks in, there are days where I just want to crawl out of my skin. Hems of clothes hurt and tags, holding the steering wheel or a computer mouse can hurt, etc. It’s amazing how I hate clothes shopping now because I might think something is REALLY cute, but as soon as I touch it or try it on, I realize I won’t be able to wear it because of how much pain I would be in. Sadly to say, most business clothes are this way. I really wish I could just wear casual clothes to work.

I’m tired… of not being able to completely enjoy our daughter and how this affects her. I’m tired of how this affects my husband. I’m tired of not being able to cuddle and play around with my husband; tickle fights and nights spent curled up together used to be our norm. Now, most days, I can’t even stand for him to give me a good hug. The affects this has on my family and my relationship with them are what hurt me the most. Even though the pain may have me almost in tears, I just bawl thinking about how I can’t do everything I would like to with them.

I’m tired of fighting! When can I give up?

I know there are people out there that are so much worse, and I try to keep reminding myself of that. However, as the pain has gotten worse this year and I keep having issues with my health, I’ve just hit a wall. Right now, I just haven’t found a way around, over, under, or through it. This is just one of the “downs” of my life. I’m sure I’ll figure out how to pick my head up and smile as I continue to trudge along…I’m just not at that point yet.

Wednesday, March 03, 2010


I believe the single most significant decision I can make on a day-to-day basis is my choice of attitude. It is more important than my past, my education, my bankroll, my successes or failures, fame or pain, what other people think of me or say about me, my circumstances, or my position. Attitude keeps me going or cripples my progress. It alone fuels my fire or assaults my hope. When my attitudes are right, there is no barrier too high, no valley too deep, no dream too extreme, no challenge too great for me.
- Charles R. Swindoll

Tuesday, March 02, 2010

Openness and Honesty

Not that I'm going to start sharing every little detail of my day or every single thought I have, but...

I am going to start using this as a venue to start sharing more of my thoughts. This probably should have just been entitled Openness, but I think honesty goes hand-in-hand with openness. If you're not really being open with someone, you aren't really being honest with them…like the "little white lie."

Yes, I still feel that I am living the Young, Sweet Life; however, everything is not always cheery and happy. Until now, I have mostly limited my posts to pictures and updates on our sweet, little angel. So, as I post in the future, I'm sure I'll still do plenty of that, but I will also be posting more of my day-to-day struggles and frustrations, too. As I come across quotes that are inspiring or thought provoking, I'll probably post those as well. This is going to become more encompassing of my life instead of just "censored" snippets that are mostly about my daughter.

Since this might be considered a bit of a drastic change, I just thought I would let you know.


One sees great things from the valley; only small things from the peak.
- G.K. Chesterton