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

Monday, August 30, 2010

There's No Place Like Home

Well, I had a little melt down this weekend. As some of you may know, it has now been almost a full 3 months since my husband and I moved to a completely different state, far, far away from all of our friends and family all in an effort to be together more. He travels with his work and we thought if we went where the work is that he could come home at night more often. And that is true. But it doesn't change the fact that it is all different. And even though we are together I still feel alone. I am alone all day because I don't work. I had so many good girlfriends at home, I was used to having someone to shop with, go to lunch with, confide and talk to. I miss my church. I miss my part time job at the church nursery where I worked 3 mornings a week. Which honestly it was getting to be too much and we thought the move came at the right time because it would have been really hard for me to quit it. I miss my grocery store. I miss my roads. My doggie daycare. My restaurants. I haven't really cried yet and that may be the problem. I'm trying to be strong. For me, for Rob so he doesn't feel bad. For my parents, so they don't have to worry.

So, Sunday morning the music began in church. I didn't know the song so I couldn't sing along, so I started to cry. I'm sure that's not really why I started to cry. It was a word or phrase or hug from the Holy Spirit. But nevertheless the tears came. But then I didn't know the next song. I didn't know any of the songs that morning. So I cried through the whole music portion of the service. Then the pastor taught on how important it is to have relationships. Are you allowing yourself to have close relationships? I wanted to stand up and yell "I'm trying!" I've been going to the scrapbooking thing, talking to every person I come in contact with, basically stalking people in the aisles of common interests at the store. So I cried through the whole sermon. Then through the offering and the closing song which I did not know. Afterward the music directors wife came and asked me what was wrong. And I just said honestly, "I'm homesick." It's a new feeling for me. I've never been homesick before. I've been to college and all around the world. Rob said the difference is that I always knew when I would be coming home. This time is different. This time is indefinite.

Friday, August 27, 2010

Gone Fishin'

I wish I had been gone fishin'. I've been absent because I've been too tired to blog. Too tired to put two words together to make a sentence. Last night was my first blog on my dogs' blog all week. If you follow it you'll notice that I've had postings, but those were prescheduled to post, not ones that I actually sat down and wrote this week. I'm blaming it on Eve. That's right. Her and that darn apple. My menstrual cycle came earlier than expected and nearly wiped me out. It was Sunday afternoon and I told my husband I thought something was wrong. Sure enough, there it was. I was so tired all I could do was sleep. and sleep. and sleep. When I wasn't sleeping I was just a zombie. But I think I'm back. Each cycle hits me differently. I must say that I probably preferred this one.  Usually it comes with excruciating lower back pain sometimes to the point where I can't even walk. Toss in a few migraines for good measure. I, of course, also have menstrual cramps. Let me rephrase that. I have, when I was 12 years old the doctor told my momma to give me 2 tablespoons of whiskey before a scrip pain pill, menstrual cramps. Thankfully I have outgrown most of those. Yay for old age! And lucky me, I get to have ovulation cramps too. Whoo Hoo! But that's actually not such a bad thing when trying NOT to get pregnant. Yes, I can tell by my cheering that my mind is coming back even if my body is slow to follow. But my fingers are working. So at least I can blog again. Except it's the weekend and you know I hardly ever post on the weekend because I'm too busy having fun with the hubs. Happy Friday!

Thursday, August 19, 2010

It's Just My Experience

So yesterday I wrote about friendship. I made this comment, "it's a lot harder to make friends post diagnosis of Fibromyalgia than it was to just keep the friends I already had after I had been diagnosed." I realized that I should have said that it is just my experience. It may be the opposite for some of you. Maybe for some of you it's been hard to keep your friends after being diagnosed and it's been easier to make new ones. If so, I want to know. Either way, actually I'd like to know. What has been your experience? How does Fibromyalgia affect friendships? How does it affect socializing? Yesterday I was just writing from my personal and recent experience and I hope that you all know that.

Wednesday, August 18, 2010

Little Devil On My Shoulder

My life after the big move is slowly picking up speed. Most of the house is unpacked. If it's not unpacked, we probably don't use it. We're doing projects. We're going to church socials. We're meeting people and trying to make friends. I'm getting back into the normal routine of actually cooking, which means grocery shopping, lugging groceries in, cleaning the dishes and then there's all the trash and recycling that accumulates from it. Oh, and the compost that my husband is now doing, set that aside for him. Of course you all know about laundry and keeping a house clean, there's no story in that. My pain is starting to come back as my lazy days slip away. I've felt colds coming that never came. Allergies to nothing in particular. Aches and pains and invisible rashes. I don't know if it's just because I'm getting busy again. Maybe I've found my fine line of what's too busy. What I've been doing most lately is getting to know my new city and the people who live here and trying to make new friends. And realizing that it's a lot harder to make friends post diagnosis of Fibromyalgia than it was to just keep the friends I already had after I had been diagnosed. Does that make sense to anyone? Here I was living life and I had my friends, then BAM, Fibromyalgia. My sweet and gracious friends adapt and we all go on living happily ever after. Until I move. Now I need new friends. It's not that my old friends aren't there. They are. They just can't go get lunch or have girls' night when the hubby works late. Finding friends with Fibromyalgia is hard. I've been scrapbooking with a group at a local scrapbook store. Okay, I only went to one scrapbook night from 4-11pm. I've participated in two card swaps. That's 3 full days that I've bent over my work table within one month's time. My craft that I love so much causes flare-ups, but at the same time its worth it. I love it. I do, but it hurts my neck and back and gets my migraines going. And my right elbow really hurts later from all the movement because I'm right handed. It's also difficult for me to get all my gear in and out of my house, car, into the store, back into the car and house again. That's a lot of lifting for me. One of the girls there actually invited me over to her house and I feel so stupid because here I need a friend and the first thing that went through my head was "it's so hard to move my stuff." But she has two kids and can't come over to my house. I feel like I may have just sacrificed that relationship before it even started. And then two other girls invited me to start walking with them come fall. Well, I know that I can not walk, as in walk at a speed intended for exercise. And even if I could, I couldn't do it regularly. They already knew I had Fibro and, yes, I told them that was why. It's like Fibro is a little red devil sitting on my shoulder whispering in my ear, reminding me, "you're not normal. You're not like everybody else." And it's true. I may look like you. I may act like you. But I can't do the things you do. And now that little devil is standing between me and potential friends, causing little road blocks along the way. I don't want them to think that I'm just a wimp or gotta have it my way. This is new territory for me. Back home everyone knew me and saw me get so sick over the years and then saw me get diagnosed. It was a journey together. They still ask me how I'm doing. But here what am I supposed to do. Do I talk casually about Fibromyalgia? Or is it my dirty little secret? Should I let people know up front "Hey, I would love to, but that's really hard for me because. . . " or what? I don't want to chase people off. I also don't want to come off as a Fibro Freak Lobbyist or something. I'm still just a person.

Monday, August 16, 2010

Why I Could Never Be A Geisha

I pulled out my mineral makeup today which I had not worn since we moved. The reason that I had not worn it was because it does not have an SPF. But I was in a hurry, so I chose to put just the basic "make me look like a million bucks" shimmer stuff on my face that covers all blemishes, smooths skin tones, makes you glow and completely eliminates the need for a foundation. You the know the stuff. Anyway, I'm brushing the powder onto my face and it hurts. My face is hurting. I do remember this now. That's not why I stopped using it. But I do remember that it hurts to rub my face with this brush. I read a lot of reviews on this particular brush. People said that it was the softest kabuki brush they had ever used. And I promise I am not rubbing hard. I am being very gentle. But the contact hurts my face. I think it's just the little tips of the bristles and the friction action against my skin. But repetitive motions of the smallest kind can hurt. Like even just washing my face with my hands will leave my face feeling a little numb like I may have taken the top layer of skin off. It does that to the palms of my hands after rubbing my dog's belly, too. My hands will be numb for about 30 minutes. So after using my mineral makeup this morning I went to lunch with my husband and my face was still hurting. It hurt for a good 2 or 3 hours. And this was not numb feeling, this was definitely pain, more like the feel of a bad sunburn that is going untreated. It finally started to subside after about 4 hours with just a little tingling still on my upper lip and bridge of my nose.
So, really that's why I could never be a Geisha. I can already pop a fan open one-handed, play a flute and my feet are fairly small at a 7 and 1/2. I'm sure I could learn to keep my mouth shut (maybe), hold my head up under a 30 pound hair-do, pour tea without spilling it, and play a . . . what's that guitar like thingy? Oh, yeah, maybe there are a few other reasons why I could never be a Geisha.

Saturday, August 14, 2010

Noise Sensitivity

Ok, here's another great article from Fibromyalgia and CFS Blog called Noise Sensitivity in Fibromyalgia and Chronic Fatigue Syndrome. I told y'all this is a blog to follow and here is a good example. When talking about noise sensitivity she says:
"This aspect of our conditions hasn't been studied as much as the biggies -- pain and fatigue -- but some pain findings actually do lend some support to this idea. Most people have what's called an inhibitory response to repeated sensations. That means once they've felt something and their brains have determined it's not a threat, the response to it gets progressively weaker. A tight waistband, a shoe that rubs the Achilles tendon just a little, a slightly rough bedsheet are things everyone notices, but only at first. According to studies, those of us with fibromyalgia don't get to tune out these "harmless" sensations. Instead, our nerves over-react to them, sending more and more pain signals at every contact, and instead of filtering those signals out like it should, our brains seize hold of them and crank up the volume."
I've mentioned here on my blog before that this is one of my main problems with Fibro, the sensitivity to sound. I've even dialogued with a few of you about how difficult it can be for me to go out sometimes because I get sick so easily from sounds, as well as smells and light. I commented on this article that a dropped fork across a restaurant or passing by a metal wind chime can send me instantly into nausea. But it's in my own home too. Putting away the dishes is one of my most difficult tasks because of the sound it makes when I have to stack them together, especially metal on metal. I have this set of stainless steel metal mixing bowls. I love them and love to use them, but they make the most awful sound to me when I am putting them away. I really felt like I was a rare case in Fibro. I've never heard or read of anyone else having this problem. Now I know that I'm not alone. Should that really comfort me like it does?

Friday, August 13, 2010

Living Life At Half Speed

I've decided there are 3 levels of sleepiness. There's tired, really tired, and exhausted.

  1. Tired-This is what a person experiences when they stay up late, have to get up early, or combine the two. Maybe you had a bad night's sleep or bad dreams. 
  2. Really Tired-This is where I was when I was first diagnosed with Fibro and where I think I am now back to. I can only be awake for about 5 or 6 hours before I need a nap or I'm passing out in my chair. The other day I was cleaning house just to stay awake. And I was vacuuming, a pretty physical activity, and my eyes were closing, my head nodding off, because I literally couldn't stay awake. There are days that all I want to do is sleep. I don't care if I see anyone or eat anything. I just want to sleep.
  3. Exhaustion-This is where I was a few weeks ago. This is probably where insomniacs live. You're so tired that you couldn't sleep if you wanted to. I don't know how anyone functions here, it's so dangerous. You don't sleep at night. You're tired during the day, but don't nap, you don't fall asleep at your desk. You're a zombie.
My new medicine has taken me from exhaustion back down to really tired. I think I actually felt better at exhaustion because I wasn't feeling anything. I so look forward to just being tired. Will I ever just be tired again? Today I took the dogs to daycare. I came home and got online to check my email, etc. What I really want to do is sleep. But I know what I should do is clean. With them in school is the only time I really have to clean easily without their "help". I can get so much done without them here that would take me days to do with them here. But what I really want to do is set my alarm for 15 minutes before time to pick them up and sleep all day. Does anyone else want to put all of life on hold just so they can sleep? I know, I can hear it ringing through my head, "Don't sleep your life away." But I'm pretty sure the person who came up with that saying did not feel like I do. Is it possible to get caught up? I know the answer to that already. But I hope. Surely I can't always feel like this. I'm so tired. And no one in my face-to-face world understands. It makes me feel like I am the only one who lives life at half speed.

    Thursday, August 12, 2010

    Surviving A Loved One's Chronic Pain

    Wanted to share this with you all. Notice that in the editor's note it state's "This article is available online (at www.PPMjournal.com/Handout.pdf) as a printer-ready PDF to allow free unlimited printing of handouts." So print it out, pass it out, hang it up on your bulletin at work, give it to your loved ones and take it to your support groups. This is not just for Fibromyalgia, it's for anyone experiencing chronic pain. 
     
    The topics are:
    • What is chronic pain?
    • How is it different from acute pain?
    • How am I affected by their pain?
    • What do I do to take care of myself?
    • Is it all in their heads?
    • Could they be faking it, say, to get out of work?
    • How should I respond to my loved one when (s)he’s in pain? How much should I do to be helpful?
    • How can I tell how he or she is doing?
    • What treatments are there for chronic pain?
    • Will my loved one get addicted to his or her medications?
    • What questions do I need to ask the doctor?
    • What else helps besides medication?
    • How do I communicate with my family member?
     I would love if y'all jumped in the comments section here and answered any of these questions yourself.

    To read the full article go to:
    http://www.scribd.com/doc/35766920/Surviving-a-Loved-One-s-Chronic-Pain

    Wednesday, August 11, 2010

    Side Effects in Effect

    I am now starting to feel the side affects of the Amitriptyline. The cottonmouth was horrible today. I've been feeling it lately, but didn't realize it until today that it was the medicine. My mouth was so dry it was horrible. I was drinking water like crazy, which isn't necessarily a bad thing. It seemed to wain some by the evening maybe from all the water I'd drank, or possibly because it had been so long since my last dose. Either way, I'm glad to not have to keep drinking so much water in the evening lest I wet my bed.

    Sunday, August 8, 2010

    Roll Over Sleeping Beauty . . .

    . . .  you're hogging the bed. I've been on the Amitriptyline for a week now. I could tell a little difference at first. The first morning I woke up without feeling like I had the entire Sahara desert in my eyes whereas before I would feel that sand in my eyes feeling all day long. I wasn't quite as tired. But then yesterday I came home about 4 and I don't even remember laying down on the bed or Rob coming into the house. But almost 3 hours later he was waking me up for dinner. And then this afternoon I was tired enough to need a 2 1/2 hour nap. It's not the same exhaustion I was having before. Not even close. It's not sheer exhaustion. But it is still really tired and feeling like I need a nap in the afternoons although I don't take one usually. This weekend was the first naps I've had since starting the medicine last weekend. But maybe in my excitement of having started the medicine, with such high expectations, I overdid it. But I can say that I am actually sleeping. And that was the goal. That is a good thing. I am having more than just one crazy long long dream a night, which I believe is also a good thing. I still don't think I should be remembering them since that means I'm waking up during my REM cycle. But still, I see signs of improving. I see signs of actual sleep. It's just going to take time. I have to not rush myself and still try to stick to my routine that I had set for myself.

    Friday, August 6, 2010

    E-Card Contest

    In honor of September, Pain Awareness Month, Fibromyalgia AWARE magazine is sponsoring an E-Card Contest with the theme “Pain Hurts Everyone”. Winning artists and their E-card will be featured in an upcoming issue of Fibromyalgia AWARE magazine!

    Use your creativity to create a still image e-Card in honor of our National Pain Awareness Month theme “Pain Hurts Everyone”. The winning cards will be available free on our website for use by our registered users throughout the month of September to help spread the word about Pain Awareness Month.

    From all valid submissions, winners will be selected in the following categories: Adult, Juvenile (12 years and under), and Four Honorable Mentions. Winning artists will be featured in an upcoming issue of Fibromyalgia AWARE print and digital magazine.

    Eligibility:
    Contest participants must be a registered user of the NFA website. Registration is free, and may be accessed on our website at www.fmaware.org. Minors (under the age of 18) may only participate when written permission from their parent or guardian accompanies their contest submission.

    How To Enter:
    All entries and questions should be directed to KWallace@fmware.org. All contest entries must be e-mailed no later than August 20th. Each contestant may submit no more than three E-Cards for consideration. A complete Contest Entry Form must be included in the e-mailed submission.

    document icon 


    Medium:
    Still image e-cards may be submitted using your original photography, illustration or graphic art to give voice to Pain Awareness Month.

    Because the winning e-card images will be available both on-line and announced in our print magazine, we ask that you adhere to the following image specifications:
    • Max. Width: 6 inches
    • Max Height: 10 inches
    • Resolution: at least 300 dpi
    • File Types: .jpg, .tiff,. pdf
    Theme:
    Submitted images should support the contest theme “Pain Hurts Everyone”. Use your own creativity and interpretation on the theme, or choose to focus on the idea that although pain is being personally experienced by a single individual, it affects those around them in different ways, both positively and negatively.

    When creating your E-Card, please consider the following audiences that Pain Awareness Month messaging would most likely be directed to: the general public, health care professionals, public officials, care givers, fibromyalgia sufferers, and their family and friends.

    Text:
    When published, each E-Card image will be accompanied by the text “September is National Pain Awareness Month”, and the “NFA logo”. We encourage you to submit your unique greeting card text to accompany your image. Your text should help to “tell the story of your image” or evoke emotion supporting the theme. Do not include the text in your image, unless it is a part of the image design. Instead, send your e-card text as a separate part of your emailed contest entry.

    Trademarks:
    By participating in this contest, you warrant that you have the right to use the submitted artwork. The artwork is either originally created by you, or you have the written consent of the original artist to use their artwork for this purpose. Please do not submit any artwork that references trademarked likenesses or characters (i.e. Bugs Bunny).

    Selection of Winners:
    A volunteer panel of judges will be assembled by the NFA to select the contest winners. Contest winners will be notified between August 20 and September 1, 2010. If you are not contacted by Fibromyalgia AWARE magazine, your materials submitted are deemed not to have been selected. You agree that the judges’ decisions are final.

    Terms & Conditions:
    By submitting your e-card, or other material to this contest you are bound by the terms and conditions below:

    1. NFA and Fibromyalgia AWARE magazine will have the right to edit submissions as necessary.

    2. NFA and Fibromyalgia AWARE magazine will have the right to not display submissions deemed inappropriate.

    3. By submitting material to NFA and FM Aware magazine, you agree that NFA and Fibromyalgia AWARE magazine can display, modify, transmit, distribute or delete your submission without needing prior or further consent from you. This applies to all submitted materials, regardless if they are selected as a contest winner, honorable mention or otherwise.

    4. Authors who submit their material to us retain their copyrights, but grant NFA and Fibromyalgia AWARE magazine irrevocable worldwide, royalty-free rights to reproduce and distribute their submitted material, and forego any payment or compensation for the submitted material.

    5. Authors/artists who submit their material must certify that this material is their own and ensure that it does not violate any copyrights.
     

    Wednesday, August 4, 2010

    Is Anything Just for Fun Anymore?

    **Warning**This post is not for the faint of heart. If you cannot handle ribbons, brads, ink and paper by the pound, then this is not for you. 
    I love to scrapbook and stamp. In fact that's how my dog Bradley got his name. My friends tease me about how many brads I use in my scrapbooks. I've always liked the name Bradley (but not just Brad) and so Bradley was named for my love of embellishments in scrapbooking. It's one thing that I can still do with my Fibromyalgia. Although it does have it's complications. For instance, my neck. When I scrapbook I sit at the table and look down for long periods of time and my neck and shoulders end up sore which in turn gives me a migraines that brings many joys of its own. And here's a great one. I get tennis elbow. Yes! Like yesterday. I got tennis elbow, especially in my right elbow, since I am right handed, from all the moving at the table. Last night and today my elbow was really hurting. I guess this means that I couldn't work at a desk all day. But for me the benefits outweigh the pain, for now. It is my creative outlet. It's helps me keep my sanity. I love photography. I love pictures. So it makes sense that I would love to scrapbook them. I must like to journal after all I like blogging. And I like to send cards. I see my cards as little works of art with a letter inside. And I like to make cards as sets and give as gifts for others. Since we just moved here I am looking for ways to meet people. I went to the local scrapbook store. There is a card swap coming up. The rules were make 6 cards using some portion of this Month's Theme which was Morning Rain. You bring in your cards by the deadline of this Sunday. The store manager swaps all the cards and then you can pick up your cards on Monday. This isn't really a way to meet people. But it's still cool. Anyway, here's my first collection for the card swap.
     
    My Morning Rain Collection
    1.) This card I tried to replicate the cut and fold from a card on display in the store.  It makes a 3D card. This is the front with felt and paper flowers and of course, brads.
    The inside reads "Somedays are better than others." It's hard to see, but it folds up in a fun way.
    2.) "That's what i love about u" A very simple card, blank on the inside. It opens toward the top. It's embellishment is the staples on the edges of the black strips where the words are and a couple of brads where I made it look like the bottom corner was turned up trying to lead them to flip the card up instead of over.
    3.) Happy Spring version 1.0 This one has a peek-thru window on front. It is cut through so you see umbrellas and rain with the definition for Spring.
    Then when you open it the flowers bloom and you see the definition for happy so it ultimately reads "happy spring."
    It's tri-fold and blank on the inside to write in it.
    4.) "happy happy happy" kinda of an April showers bring May flowers kinda of thing.

    Open on the left. Has two different brads with little things to put your ribbon through. I didn't even tie it so the recipient of the note doesn't have a hard time opening it. Just enough to keep it closed.
    5.) Happy Spring version 2.0  Here's the little birdie I was talking about. I actually had to use my Fiskar knife thing to cut it out of a larger sticker. Just a regular card, blank inside. The definitions for "happy" and "spring" on the front again with the umbrellas and rain on the top part, but this time the stripes on the bottom representing rain falling. But Miss Birdie is still singing in the rain. That's what I should have called it.
    6.) "don't rain on my parade" horizontal, opens on the side again with another little flap except this time is
    doesn't tie close. 

    Besides the fact that I just like this picture, it shows a little better the ribbon tied to the end of the flap.

    So which one is your favorite?

    Monday, August 2, 2010

    Keeping You A Breast

    We saw the surgeon today. She did a breast exam and did not feel anything on my right just like all prior exams. She found another spot on the left though. She did a very thorough ultrasound on my left breast. She said that the first mass that was originally found that was hurting was a fat nodule. They can be sensitive and the Fibromyalgia only exacerbates that pain. She did not see anything abnormal with the second lump found. The third lump, which she found today, was just normal metabolic activity. She said that my breast are doing exactly what they are supposed to be doing at my age. They are lumpy, bumpy breast which are metabolizing and creating liquid. And then she scared us by saying that there was so much activity "are you sure you're not pregnant?" Ha! Ha! I just finished my period like two days before. But that's a joke she uses a lot with couples our age. I really liked her. She was very personable, yet she explained everything really well. Not that I remember it now. But at the time I felt like I could have been a colleague instead of a patient. I am at risk for breast cancer considering my family history and since I am over 30 and haven't had a child. At 35, if I haven't had a child, that risk goes up and I can choose to be included in a study to decrease that risk, but they won't take anyone until they are 35. My risk also is not really high enough to do the genetic risk factor testing. But she said that she is not worried at all about my breast. I am going back in two months to have a follow-up ultrasound to see how the activity is progressing. There was no need for a biopsy or lumpectomy. Yay!!!!!! However, she did show the biopsy needle to Rob. I had told her that I was afraid of it, but not a lumpectomy. When she showed it to him, he did get a little sick just looking at it. She said it is a "respectable" needle. Hopefully I will never have to meet it myself.

    Sunday, August 1, 2010

    Updated Medications List

    • Lyrica 150mg 3x/day for Fibromyalgia, morning, afternoon and bedtime
    • Cymbalta  60mg 1x/day, morning, for pain associated with Fibromyalgia
    • Topiramate 50mg 2x/day, morning and dinner time, for vertigo and migraines 
    • Amitriptyline 10mg 1x/day, bedtime, for sleep aid associated with Fibromyalgia
    • Melatonin 3 to 6 mg 1x/day, bedtime, for help sleeping
    • Sumatriptan 100 mg as needed for migraines, plus 2 Aleve
    • Ondansetron 4mg as needed for nausea
    • Promethegan 25mg as needed for nausea
    • Alphagan, one drop each eye, for driving at night
    • Prenatal Vitamins not because I'm trying to get pregnant but because I need so many supplements due to anemia, etc.,  and this is  the easiest way to get that dosage in the least number of pills