Those Times I Forget I'm Chronically Ill

Today I wanted to share a little bit with you about what it's like living, working, and playing with a chronic illness.  More specifically I wanted to share with you those times that I forget I'm chronically ill.

Living in constant pain and fatigue isn't something that's easy to forget.  And trust me it doesn't happen often.  Things aren't always hard, or painful.  Sometimes it's just that dull reminder that I don't have the energy that I once had to do the things I love, or the nagging knee pain that I have dealt with my whole life.  And although it may sound like a good thing to forget you are ill, it usually isn't the case.  

There are two specific instances in which I occasionally forget about my illness.  On the rare day that my pain is low, or that I'm attending an event that I've looked forward to for a long time I can get caught up in enjoyment.  If you catch me on one of these days, I might even be dancing, loud, obnoxious, and generally smiley.  I've set my health issues aside for the time being, and have captured a small bit of my natural joy.

I often live for these nights! I will talk your ear off if you let me, and unless I tell you (which I often do) you would never know I struggle with my health on a daily basis.  Then morning comes..... and I again remember that my body is not as strong as it once was.

Regardless of the night's activities or alcohol consumption I'm "hungover."  My head pounds, my throat hurts, my legs ache.  After one of these "good nights" it often takes me 3-4 days to recover to my normal daily activities.  No matter how careful I am the only way to avoid this feeling is to not go out at all, and that sucks.  As much as I hate the phrase "suck it up" when it comes to pain, somedays that's just what I do.  I suck it up, enjoy myself, and know that for the next week things will be slow.

The second instance in which I can "forget" about my chronic illness is sometimes the hardest.  As you know I've been working on building a business very very slowly over the last couple of years.  It started as a hobby, became a cute idea, and now is at the point where I'm actually (almost) making money.

Before I started all of this, I had no real idea about the crafting business.  I understood the production part, and doing what made me happy, and I knew it would be a lot of work.  But I wasn't familiar with the craft blogging world, Pinterest didn't exist yet, and the majority of people I followed on Twitter knew nothing about crafting.

Starting from scratch, I'm learning slowly, and well.  It turns out I'm pretty good at a lot of things.  However, as I build my crafting business, form relationships with other crafters and bloggers, and attempt to make myself known I get overwhelmed.  I often feel as though I'm not "doing enough"and that everyone is getting ahead of me.

When the stress is really high, and I feel like I'm failing it's because I've forgotten that I have a chronic illness.  I'm attempting to function like a healthy average person in a world of overachievers.  To begin with I've never been an overachiever, but I'm also operating at a much slower pace in my daily life than most people.  This is when I need to remind myself of how far I've come, and how well things are going.  That DESPITE my chronic illness I'm still succeeding.  This is really easy to say, but oh so hard to remember.

So I thought by sharing with you, I might remember to cut myself a little slack from time to time.  Also I'm sharing this with you so you might understand a little bit more about others with chronic illness.  I'm a pretty open book, but a lot of people who struggle do not share their struggles with others.  If you can learn a little bit of what I'm going through, hopefully you can help be supportive to others.

And because I hate leaving you without a picture of something that I'm working on, here is a full bobbin of yarn that I spun last night.

*Sneeze*

A celtic cabled hat that I've been working on.

So I have a cold, and I haven't blogged in two weeks.  The cold came upon me earlier this week.  Before that I was experiencing some stress that really isn't important, but kept me distracted and made me not feel well.

Last Monday as I was lining up shots for Etsy products and blog posts, I dropped my camera.  It ended up being repairable, but about 12 hours of stress took it's toll on my body.  The rest of the week I focused on resting up as friends of ours got married over the weekend.  I was in pretty good health and had a wonderful time at the wedding.

By the time I recovered from wedding festivities I came down with a cold, almost right in the middle of planning this weeks blog posts.  I was at the coffee shop and everything, had my computer, was drinking my latte and chatting with a friend.  Then BAM I felt horrible.  I retreated to my bed immediately where I spent the next 48 hours.

Now I'm experiencing a little of the manic phase I talk about here.  I haven't slept so I really don't have the mental faculties for Links, Likes, and Love or any other kind of post.  But thought I should update and say howdy.

This is life with chronic illness, and I just try to take it as it comes.

Add It To the List

I have another diagnosis/injury to add to the list.  I think I've mentioned my shoulder pain here, but I certainly have been talking about it on Twitter and Facebook.

It's been going on for about six weeks now, and hurts especially when I crochet, knit, type, etc.

I went to the doctor this afternoon and she has diagnosed it as rotator cuff tendinitis.  She said it's a pretty common injury, and happens with many professions.  Basically anything that I do in front of me aggravates it.
She gave me a shot of cortisone in the joint and I plan on resting it for another week or so.  Been doing the icing and the constant taking of NSAIDS.  Also important is to keep movement in it and doing some shoulder exercises, so I plan on being vigilante at that as well.

I'm going a little bonkers however.  My pain first flared when I was working on a knitting project, and since then have not been able to do much.  For the last 5 years I've been crocheting or knitting almost daily for several hours a day.  It's what kept me sane in my sickest months, and has provided some great gifts and even a little bit of income.

I really don't want this to become a chronic problem, so here I am, resting it as much as possible and trying to find other things to do.  I've been reading a lot, and I guess that's what I plan on doing for a few more weeks.  Will be getting to the library very soon.

Will try to keep creating blog posts, and hopefully I can come up with some kind of creative content while my crafting takes a rest.

New Diagnosis

It's been a bit since I've written, more or less because I've felt like crap and have a hard time telling you awesome things when there really isn't that much awesome to tell.

I do have answers though, and that is something to celebrate.  Last week my mom came to visit and I went in for my EGD, which was an endoscopy of my upper digestive system.  It was an interesting experience which included me being partly awake and gagging hardcore while the scope was taking a look around.  The long and short of it is that I have gastritis, which is an inflammation of the lining of the stomach.  There are also complicated terms about what's going on in my esophagus, but what you need to know is that it's being treated

I've had to cut out mondo amounts of good tasty things from my diet.  I miss potato chips horribly, and as for my decade long love affair with Diet Pepsi, that is pretty much over.  I'm not feeling better yet, but I'm hopeful, which is all I can be.

While Mom was here we did a lot of other fun things as well.  Ryan and I celebrated our Seventh wedding anniversary on June 25th and Mom bought us our gift on her visit.  It's a Sodastream that allows you to carbonate and flavor your own water at home.  So far I am loving it.  Pre-gastritis diagnosis I was drinking carbonated water with lemon juice.  Now that citrus is off the menu we bought some water flavors without any sweeteners in them.  VERY TASTY.  I have plans to take pretty pictures of sparkling water and fruit, but probably not today.

We also went to the Grandview Farmer's Market and bought some very tasty veggies.  I took Mom for a short walk on the Scioto Mile, and we spent some time at the Grandview pool.   Mom also bought a couple books at Half Price Books before her trip home.  It was nice to spend time with her, as it had been since Christmas.  Was sad to see her leave.

I haven't been doing much on the creating and selling front, but I have some things planned for the fall as long as I start to heal and do not get any more sick.  So even when I'm not creating I'm always thinking about what I'll be doing next, keep a look out!

Ear Infection Mania

Often when I've been down with a general flare of my chronic conditions or some illness for awhile, I go through a period of time which I can only describe as creative mania.  It happens after I have been unable to do things for many days and I begin to feel a fraction better.  I get ideas about things I want to create and it is impossible for me to sleep or sometimes even rest until I can see my ideas in some tangible form.  This process is often counterproductive as I spend many hours, sometimes staying awake all night, creating. Lack of rest and sleep allows my flare or cold to get worse again.  It's hard to control, but it usually produces some very lovely things.

On January 3rd I woke up not being able to hear out of my right ear.  By the 4th it had started to hurt and was clear that I had an ear infection.   After visiting Urgent Care and starting antibiotics, then visiting a specialist and receiving ear drops the infection still seems to be clinging on.  I go for another specialist appointment tomorrow in hopes of getting some more answers.  

Late one night when the pain in my ear was still unbearable I treated myself by purchasing some wool roving on Etsy.  I found beautifully colored Polwarth roving form Greenwood Fiberworks.  I was so excited when it came in the mail that I wanted to spin it up immediately but I already had another project on my spindle (green and yellow yarn).  So I finished that one, and spun 4oz. of my new wool.  I still have 4oz. left that I'm brainstorming about now.  

After I finished spinning on Sunday night I started (and finished) a great crochet beanie with a cute heart pattern.  There are other things I want to be working on now too, but my body has put a stop to that feeling achy but I am sure I will be back at it in a few days.

30 Things About My Illness You May Not Know

It's Invisible Illness Week this week, which is fitting since I feel the worst I've felt in a long time.  I'm sure you've noticed the lack of quality posts lately.

I did this a few years ago, but a lot has changed since then, so here is a new list of

30 Things About My Illness You May Not Know:


1. The illness I live with is: Fibromyalgia and Chronic Fatigue Syndrome
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: My entire life.
4. The biggest adjustment I’ve had to make is: Not physically being able to do things I use to love (ex: backpacking, rollercoaster riding, etc.)
5. Most people assume: Most likely people probably assume that I'm exaggerating about the pain and fatigue, but I promise I'm not.
6. The hardest part about mornings are: Actually waking up and moving.  I am so exhausted in the morning, and seriously stiff and sore from pain.
7. My favorite medical TV show is:  Can't say that I watch any medical TV shows anymore.
8. A gadget I couldn’t live without is:  Oh my wonderful wonderful MacBook Pro.  Her name is Samantha and she is wonderful.
9. The hardest part about nights are: Getting comfortable and actually falling asleep.
10. Each day I take __ pills & vitamins. Currently I take 3 prescription medications, and am working on a new vitamin regimen that so far consists of 9 pills and a powder to drink.
11. Regarding alternative treatments I: As far as I'm concerned when it comes to Fibro, there is no such thing as "alternative".  I see the chiropractor, and get massages when I can.  I would totally consider acupuncture.
12. If I had to choose between an invisible illness or visible I would choose:  Oh goodness, I wouldn't want to choose.  I feel grateful on a daily basis that my illness does not threaten my life.  As long as I'm still alive I am still living.  
13. Regarding working and career:  Been out of the working world for 4 years now, but seriously want to return to something low key.  I honestly don't have any serious career aspirations, which makes me incredibly sad.  But I love helping people learn about the things that I love, and that seems to be pretty fulfilling.
14. People would be surprised to know: I'm not really sure.  I'm pretty open and honest about everything, so not sure what would be a surprise.
15. The hardest thing to accept about my new reality has been: Not being able to keep up with my peers.  I can deal with the pain and the fatigue, but I've been extremely lonely.
16. Something I never thought I could do with my illness that I did was: I rode in a 13 mile charity bike ride.  So fun, and hurt for days.  But best day in several months for sure.
17. The commercials about my illness: Make me really angry.  This might not be the popular opinion but people in commercials look and act nothing like me.
18. Something I really miss doing since I was diagnosed is: I miss school a lot.  I loved learning and discussing what I learn with my classmates.  Also miss eating things with gluten in them.
19. It was really hard to have to give up: I don't think I made a conscious decision to give anything up besides gluten, which sucked but wasn't hard because I started feeling better almost immediately. 
20. A new hobby I have taken up since my diagnosis is: CROCHETING!! One of my favorite things in the world.
21. If I could have one day of feeling normal again I would:  Spend it with friends outdoors.
22. My illness has taught me: To not be afraid to ask for help.
23. Want to know a secret? One thing people say that gets under my skin is: When people say "glad you are feeling better" when they see me.  Just because I'm out in public doesn't mean I feel remotely well.
24. But I love it when people: give me hugs and ask how I am.
25. My favorite motto, scripture, quote that gets me through tough times is:  Man I really don't have one of these right now.  It's always been Philippians 3:14, and haven't really had the need to contemplate anything new.
26. When someone is diagnosed I’d like to tell them: There are good days to go along with the bad days, and although bad days seem to be way way more in number the good days do exist.  (see number 16)
27. Something that has surprised me about living with an illness is: The cost of medical care sucks, a lot.  And healthy people don't seem to understand that.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband Ryan does amazing things for me on a daily basis.  However, my friend Jenni has sent me TWO packages from conventions she went to this summer, and that has been amazing. One was Amanda Tapping's autograph from the convention I really thought I was going to go to till the end of July.
29. I’m involved with Invisible Illness Week because: Not really involved outside of this blog post this year, but wanted to get some words out there.
30. The fact that you read this list makes me feel: loved.

Just When You Think It's Safe

Over the last three years I've learned a lot about myself, and about what my body can and can not handle in the course of living with fibromyalgia.
Over the last 8 months or so I really think I've gotten into a place where I feel like I'm contributing and not just sitting on my butt.  I've made some amazing friends and have had some awesome opportunities.

However I still find that I'm struggling with some things, and tonight I'm having a particularly rough time.  Although it's the fibromyalgia that is causing my difficulty, I'm struggling more mentally than physically.

Sore Crochet Muscles

I just Tweeted that I was thinking about what to post in my blog because my crochet muscles were too sore to get anything accomplished.  So here I am with a little tid bit about why my muscles are so sore.

There is a lot of stuff I can say about my daily struggle with Fibromyalgia, but often it is hard for me to do so.  There are hundreds of blog posts and articles out there that give a good picture of the chronic condition.  There is also a lot of crap about it out there too.  For the first two years I was ill I read almost everything I could get my hands on, and an equal number of stuff that I read was either irritating or enlightening.

If you are interested in learning the basics, there is some good background information here in my archives.

Dealing with the pain isn't such a struggle these days, I've learned to cope for the most part.  Not saying that I don't have pain, because there isn't a day that goes by that I am not in pain.  So yes, my crochet muscles are sore, and that slows me down a bit.  I  have to lay in bed, and either deal with the pain or take meds that make me nauseated and dopey.  I decided a while ago that RX painkillers were just not for me.  However this kind of makes me feel like a "faker" because I won't take the good stuff.  But honestly it's not all that good too me.  This pretty much speaks to the issues I've been having lately, not physical, but mental.


I feel like I should be doing more, I get down on myself when I have bad days, I am not the person I use to be, and am not yet comfortable with the person I'm becoming.


So that's where I'm at on this crappy rainy winter night.  In pain, not able to be too productive, and feeling like a horrible person because of it.

I'm not really looking for answers tonight, just writing this to raise awareness of what people (including me) can go through on a daily basis.  I'm just one among many trying to make a life for themselves despite the challenges.  I'll leave you with a pretty picture.

Why Crochet?

As some of you may or may not know I began to crochet almost out of necessity.  In the fall of 2007 I became incredibly ill and spent some time in the hospital.  About a year prior to that my mother-in-law Nancy had taught me the basics of crocheting and I had made a few really misshapen dish cloths.

I picked my hook up again in 2007 to help with some charity projects a friend from church was putting together.  I almost immediately got pneumonia and pertussis, commonly known as whooping cough, spending a week in the hospital.  My stay in the hospital consisted of lots of coughing, lots of headaches, and lots of sleepless nights.  I couldn't read because of the headaches, and was by myself most of the time except for a few hours when Ryan was able to visit in the evenings.  So, being the dutiful husband he went to the craft store and bought me loads and loads of yarn.  During that week I crocheted about half a dozen hats and probably more afghan squares.  They weren't very attractive, and sometimes not completely symmetrical.  However, I pushed on.

It was estimated that it would take me about 6 months to recover fully from my illness and most of that was spent in bed not able to much else but crochet and watch TV.  By December I had crafted something for almost everyone in my family.  Hats and scarves were the gifts of Christmas 2007.

It quickly became apparent that it was going to take longer than 6 months to recovery from everything that ailed me.  Tests were run and doctors were visited and I got a diagnosis of Fibromyalgia and Chronic Fatigue Syndrome.  These weren't necessarily new conditions, but in my weakened state after pneumonia, they were making me ill enough that my life could not go on business as usual.

So, I crocheted on.  And although I get healthier every year I still have not been able to return to school or work.  Birthdays, Christmas, and births of babies have been filled with wonderful hand made gifts since then.  I really find a lot of joy in it and I LOVE making something my own.

So why crochet?

• For me it pretty much just fell into my lap (teehee) and I ran with it.  But if you are thinking about learning to take up a craft, and thought about crocheting, I can tell you the effort and frustration at the beginning is worth the end product.  
• It's relatively inexpensive to begin, yarn starting for under three dollars and hooks not much more, although it can become extremely expensive when you like the feel of yarn as much as I do.
• You can do it anywhere.  Grab a ball a yarn and a hook and you can crochet on a bus, at the doctor's office, in the coffee shop.  My favorite place is in front of the TV.  I can't just sit and watch anymore, my hands are constantly going.
• You can make anything.  If you look at some of my recently posted pictures, you will see the variety of gifts I gave out this year.  No two a like. :) 
• Pure enjoyment.  Who doesn't like to have a bit of fun every now and then.  And for me, it's totally fun.  

If you are one of those people thinking about learning to crochet, please take my poll that you can find to the right of this post and let me know why it sounds appealing to you.  I'm hoping to teach some classes in 2011 and it would greatly help me know what kind of audience I should present to.
With love,
Woobie

Review: Unexpected Blessings

It's been awhile since I told you I was going to read and write a review on a book I received in the mail. Between the Fibromyalgia, Chronic Fatigue Syndrome, and the holidays, it has really taken me this long to find an appropriate time to sit down and write. I wanted to give the book the attention it deserved, and this week when I came down with a TERRIBLE kidney infection I figured it's as good a time as any. I'm starting to feel better, but not incredibly well physically and my mind is itching for something to do. It also had me thinking a lot about the book, so here it is.

I received an e-mail from the publisher of Unexpected Blessings: Stories of Hope and Healing by Roxanne Black asking me if I would be interested in an advance copy and writing a review on my blog. I thought OF COURSE I'm interested, it's a book, and a book about something I know quite a bit about. So when I received it in the mail, I set right to reading it and it did not take me long to become thoroughly engaged.

The stories in Unexpected Blessings centered around the life, loss, healing, and hope of Roxanne Black who at 15 was diagnosed with systemic lupus. It was after this diagnosis and subsequent hospital stays that Black was driven to develop the Friend's Health Connection to help others like herself find one another and form a network of support. She recalls with great clarity the moments in her life that she sees as most important, and speaks candidly about her two kidney transplants and what the lives of the individual donors have meant to her.

In the two years since I really began to understand what living and learning with a chronic condition means I have read a lot of books that describe individual stories of great challenges and overcoming those challenges to live a new and adjusted type of life. Unexpected Blessings is that, but it is something more as well. She does not just describe her own story of illness, but also the stories of ones the she has come in contact with throughout her life and treatment. They are strong testament of the wills of people of all ages and times, dealing with chronic and life changing illnesses. Even as I read in the corner of my favorite coffee shop I found myself slightly embarrassed to be crying in public. It wasn't a all out sobbing cry, but some tears of recognition in each one of their stories.

The stories Black shared were powerful, and her life has been very inspirational. I would have like to have seen more continuity to the chapters, and a little more conclusion to the story. She tends to jump around, not unlike I do in this blog, and I felt not completely informed about the messages she was trying to share. Of course a conclusion to Black's life story will not come for some time and I look forward to hearing from her in the future.

If you see this book in the bookstore or your local library I recommend a read. Roxanne Black is a remarkable woman who tells a remarkable story.

Fibromyalgia Resources

So I just put this little thing together for my mother in law who has a co-worker struggling with Fibromyalgia. Now that I look at it I feel like I left so much out, but I think it's a good primer for starting to deal with fibro. It is by no way exhaustive, and I am in no way a doctor. This is just my little take on it, in simplest terms possible.


Because there are so many theories out there, it is hard to even begin to address the cause and treatment of fibromyalgia. I think it is important for you to find what works the best for your individual self and disregard other techniques. Below is the basics of what I have found helpful, and nothing extra. But remember everyone is different and the pain and fatigue caused by fibromyalgia effects everyone differently.

Sleep
There are many important aspects to taking care of yourself when diagnosed with fibromyalgia. Different people will have different opinions on what is the most important. Restorative sleep has been the most important for me. I was only getting two or so hours of consecutive sleep at a time which was not helping my body repair and renew itself from the day before. Also sleep dysfunction is seen as perhaps one of the main contributors to fibromyalgia itself.


There are many medications that your doctor can prescribe to help you sleep continuously. Also there are a number of supplements available to help you sleep. Melatonin has been particularly helpful for me, but make sure you talk to your doctor before starting any kind of supplement treatment.

Also maintaining appropriate sleep practices is important.
• Maintain a sleep schedule, going to sleep and waking at the same times every day.
• Limit your napping in the afternoon: this one is hard because fibromyalgia can be extremely exhausting. I find that if I am too tired it is hard for me to sleep at night. If you need to nap limit to no more than an hour in the late afternoon. I try to nap in the early afternoon, but that is not always practical.
• Don’t eat too soon before going to bed, either dinner or snacks. Digestion requires energy and may inhibit sleep.
• Be aware of light, noise, television, temperature etc that may distract you from falling asleep or staying asleep. I sleep better now that the television is out of the bedroom. Use light blocking shades and white noise machines if they help.
• Give yourself time to unwind before bed and create a routine. If watching the news stresses you out, refrain from watching it before bed. Read a book that relaxes you, meditate, listen to music. Whatever works for you.
• Have comfortable bedding: I can’t stress how important this was for me. I already have an incredibly comfortable mattress, but I added a wool mattress pad and I became instantly more comfortable. I also had try different configurations with pillows and different pillows to find what worked best for me.
• Remember, just because something works for someone else it may not work for you. Do not get discouraged and keep trying on getting the restful sleep you need.


Healthy Diet and Exercise
It’s common sense right? To eat healthy and be active. But with fibromyalgia it is SO HARD to do that some times. The way I see it, there is no cure for fibromyalgia and the treatments are wide and vary in the success. Why not make yourself as healthy as possible to begin with. When fibromyalgia is at it’s worse some people discover that they have sensitivities to certain foods. I personally discovered a gluten sensitivity as well as a short term dairy sensitivity. If you feel that something might be making you sick, remove it from your diet and see how it makes you feel.

The best you can do is use common sense. Eat fruit and vegetables as well as proteins. Some days I discover by eating some eggs or chicken, the protein helps my pain immensely. If you don’t feel like eating a lot because you are not feeling great, make what you do eat count. Some days the only thing I can eat is oatmeal or scrambled eggs, but at least I’m benefiting from it.

When I talk about exercise I’m not suggesting you go out and run five miles, or purchase a gym membership. I’m more referring to movement. Don’t get stagnant. If you sit at a desk all day, make sure to get up a few times during the day and walk around the office. Take a walk up the road after dinner to stretch your muscle and help digest your food. I still can do little more than walk at a brisk pace, but I do it as much as I can. Last year I couldn’t even walk the length of my block. But now I can walk several blocks, sometimes even carrying groceries. Take it slow and work up to more activity. It keeps you healthy, it helps with the pain, and it usually puts me in a good mood.

I also really enjoy yoga. Other suggestions might be Tai Chi and water aerobics. Any low impact activity that gets you moving.


Treatments
It’s hard to find a doctor that can treat all aspects of fibromyalgia and that is the most frustrating part. Traditional medicine does have some good medications available: I take Cymbalta, but there are several out there. If you want to go this route and haven’t yet, be sure to talk to your doctor about the best one for you. Also there are muscle relaxants and like I mentioned before sleep aids that can help with your symptoms. I do not have any suggestions as far as pain medication goes. I take ibuprofen, anything else makes me sick. It doesn’t always do the trick, but it is better than nothing.
Non- traditional treatments are varied. There is chiropractic, acupuncture, massage therapy, etc. If one or more of these things interests you and fits into your budget I suggest you at least try them. I’ve found some great relief through chiropractic and massage therapy.

Supplements
There are all kinds of over the counter supplements available for treating fibromyalgia out there. Because fibromyalgia has such varied symptoms and it is different for everybody there isn’t any one thing that works. I can give you a list of some that I have tried and found success with. Talk with your doctor before taking anything, because supplements can interfere with prescription medications and other medical conditions.
• Multi-vitamin: if you are not already taking a multi-vitamin one might be helpful. My doctor suggested a prenatal vitamin because it contains more vitamins and minerals than an average one a day.
• Calcium: It is not only good for the bones, but aids in muscle function.
• Magnesium: this also helps with muscle function and has been great for calming my sore and tight muscles.
• B-complex vitamins: there are 12 essential components that make up the B complex. B vitamins aid in metabolic reactions, heart health, and immune system function. They also help relieve fatigue.
• Glucosamine and Chondroitin: These two are usually found together and help ease joint pain. It is used most commonly by arthritis suffers because it helps reduce cartilage damage, but many people, including me find it helpful for fibromyalgia.


Other Resources
Finally there are so many other resources out there to help you understand and treat fibromyalgia. Everyone has their own theory and their own treatment. If you read them you have to take them with a grain of salt, and realize that not everything is going to work for you. I’ve found that finding a combination of what works best for my lifestyle and body. I am not one for high maintenance treatments, or limiting myself from things that I enjoy.

If you go into a book store there may be a dozen books that address fibromyalgia. The one that I found with the best information in it is Living Well with Chronic Fatigue Syndrome and Fibromyalgia by Mary J. Shomon. While I have found this the best it also has things in it that I disagree with or do not find useful.

There are also several websites that you can visit that have an endless amount of information on them:

• The National Fibromyalgia Association: www.fmaware.org
• Chronic Babe: www.chronicbabe.com
• Healthy Women: www.healthywomen.org

From there you can find other websites and personal sites of people living and working with fibromyalgia.

Struggling

I'm struggling more than usual today. I've come to the point with dealing with my Fibro that I want to be up and around mentally way more than my body can handle physically. I can take outings and activities a few hours at a time, and usually if I do something that requires physical exertion one day, the next day is spent mostly in bed or the recliner. Such is today.

Yesterday was a fantastic day, leisurely, with some good reading and writing accomplished. I've come to realize if I'm going to make a go of writing professional I need to spend a lot more time working on my skills and putting it out there for people to critique and edit. My self esteem isn't quite there yet, but honestly I can't imagine doing anything else but writing and speaking for a career (when I finally am healthy enough.)

I have full intentions on going back to school in the spring so I have a trip planned up north on Thursday to drop off my paper work. I will have to do my financial aid stuff yet. Not that I need anymore debt, but at least it's going towards something.

Ryan and I will only be able to live off love and the kindness of friends and family for so much longer. For as much as I want to work and be productive, I could really use those disability benefits I applied for right about now.

Yesterday I did both mentally and physically stimulating exercise. I walked to Stauf's and spent several hours sipping coffee and working on the sidewalk in front of the shop. It was a beautiful day.

However, today I slept for 12 hours. Which means I did not get up till noon. And now I can barely move because of soreness. Both muscles and joints are screaming, I'll admit it's not the worst pain I've had to deal with over the last two years but it's not fun. The idea of sitting anywhere besides my bed or the recliner is nauseating, if I had to be sitting in a classroom or at an office desk right now I'd probably be on the floor. Often my body feels the effects of a hangover, without actually being induced by alcohol. Emotionally and mentally I am a wreck as well. I want so much to be active and out in the world. Or at least active with the daily tasks of living. So far, this has not been the case.

So here I am stuck in a rut. Perhaps by writing it however it will bring understand to those outside of chronic illness who struggle to understand what their loved ones and co-workers are going through. I am nothing if I am not honest about my feelings.

Heating Buddies

Besides having an incredibly warm husband, and a cat who likes to keep close, I have a few things that I keep nearby during the chillier months. The cold really effects my joints and muscles. Also in the last two year I have been way more sensitive to temperature changes and my body does not adjust as well as it use to. This means I am often very very cold. So I made some aids to help with this, my rice sock buddies.

What I did was fairly simple, pulling the idea from many store bought items as well as advice from others who have fibromyalgia. Penny asked me to post some instructions, and she's not the first person do so now that the weather is getting chilly, so here they are.

Take a longer sock, tube socks work well. I used a pair of wool socks that didn't fit Ryan or I the way we would like so they are SO SOFT.

Fill the sock with uncooked rice. If you want something firmer put more rice in it, or if you want it to conform to your body and joints use less rice. Leave enough room to tie off the top.

Tie the top of the sock in a knot, or if you feel inclined run some stitching across to sew it shut.

To warm it place in the microwave and heat for one minute. Flip over and heat for another minute. Two minutes in total. WARNING: The rice inside can get very very hot so please monitor the time you heat as well as the areas you are placing your sock. Like any heating pad, you can get burns.

You can also keep a sock in the freezer if you have need for a cold pack.


If you are looking for more of an aromatherapy experience you can add scents to your rice before filling the sock. Place rice in a air tight container and add essential oils or spices and keep covered overnight before filling sock.

Obviously do not wash the sock with the rice inside, but you can empty it out to put through the wash if sock gets stinky.

Stay warm!

30 Things About My Invisible Illness You May Not Know

Invisible Illness Week is September 14-20. Check out the website at www.invisibleillnessweek.com

1. The illness I live with is: Fibromyalgia, Chronic Fatigue Syndrome, Asthma, Borderline Personality Disorder
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 1981
4. The biggest adjustment I’ve had to make is: Learning to say no and cancel plans
5. Most people assume: I've been healthy my whole life
6. The hardest part about mornings are: Getting my joints moving
7. My favorite medical TV show is: If I had a favorite I guess it would be Scrubs, but I don't really watch any medical TV shows
8. A gadget I couldn’t live without is: my laptop
9. The hardest part about nights are: getting comfortable in bed so I can sleep
10. Each day I take between 12 and 30 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: love massage and chiropractic
12. If I had to choose between an invisible illness or visible I would choose: I feel blessed to be able to live the life I do, and would not wish for anything else.
13. Regarding working and career: I will get there some day, but right now my full time job is being healthy. I imagine I will be self employed or only work part time.
14. People would be surprised to know: I am still very sensitive about being left out.
15. The hardest thing to accept about my new reality has been: Not being able to do everything that people ask of me.
16. Something I never thought I could do with my illness that I did was: Travel to Texas and had a great time.
17. The commercials about my illness: irritate me beyond belief... I am not an old retired woman.. I am 27 years old.
18. Something I really miss doing since I was diagnosed is: camping
19. It was really hard to have to give up: my crazy lifestyle
20. A new hobby I have taken up since my diagnosis is: crocheting
21. If I could have one day of feeling normal again I would: throw a big party
22. My illness has taught me: patience
23. Want to know a secret? One thing people say that gets under my skin is: You look great! (because I usually fell horrible)
24. But I love it when people: give me hugs
25. My favorite motto, scripture, quote that gets me through tough times is: Philippians 4:13
26. When someone is diagnosed I’d like to tell them: be kind to yourself
27. Something that has surprised me about living with an illness is: that even some of the best health care plans are still lacking
28. The nicest thing someone did for me when I wasn’t feeling well was: There has been SO MANY nice things done for me and Ryan. I think our church families have been the best.
29. I’m involved with Invisible Illness Week because: Raising awareness is important.
30. The fact that you read this list makes me feel: Loved.

Tour de Cure 2009

Team NESPAC Rocks!!!

If you click above you will be taken to the Team NESPAC page for the 2009 Tour de Cure, Westerville.  The tour is a bike ride of various milage with riders of skills who raise money for their ride.  The money raised goes to the American Diabetes Association. 

The ADA is committed to caring for and curing diabetes.  This is especially important to me because many friends and family are dealing with diabetes daily, including Team NESPAC captain Bruce Weaver.

Please consider donating to Team NESPAC's ride as they are a driving force in the central Ohio's fundraising and they are very close to their team goal and cool prizes.  Since I am unable to ride I feel I must make the way to raising funds easier for them.  The ride takes place on Saturday so get those donations in please. 

Yoga

So, I can't believe I haven't written about this yet, but I guess that's just the way things are.  

I've been practicing yoga for several months now.  It is one of the best experiences of my life, the fitness aspect as well as the life, body, mind centering that it brings.  I practice at a studio just a few blocks from where I live called Grow Yoga.  I just finished the first 8 week beginner Hatha series.  Of course I did not participate in all 8 weeks, because of my condition I missed out on 3 of them, but hope to continue going on Tuesday mornings.

I've become stronger after the sedentary life I had been living because of my condition.  I am also more flexible than I have ever been.  Which just blows my mind.  The benefits yoga has brought to my life are innumerable.

I will say this about the practice of yoga:

• No matter what your religious or spiritual beliefs are, for at least a few moments during your practice you can become centered on that one thing that holds your life together.  
• You become more aware of yourself, both in how your body moves and how your mind works. 
•  You can come to each practice moving only in the way your body will allow you.  This is most important for me, because of all the chronic pain and fatigue I experience.  
• From day to day you may not know what your abilities are going to be, but you can always participate in the practice of yoga as your body allows you to move in only comfortable non-harmful ways.
  

Because I am a new yogi on this journey I am not going to recommend any specific practice or style that may be better than another.  I am not going to tell you to go out and spend money on any one particular book or DVD.  But I do want to encourage you, if you feel that your body could use some movement and you can't find the one thing that works for you, seek out a yoga class.  Hatha yoga is perfect for beginners.  Be careful of classes that claim to be power yoga or hot yoga, while these are valid practices, if you have any kind of chronic condition that causes pain, weakness or fatigue, they would not be helpful classes for you. 

Don't be afraid to ask questions before you take a class, meet the instructor, make sure they know your specific needs.  If a particular instructor is not willing to listen about your limitations, then move on and find someone new.  This is not advice just for those of us in chronic pain, but everyone.  You need to find what works for you and not just what happens to be the biggest or most popular class.  

You will not master all poses immediately, but you may find that some things come more easy than others.  Work on those, but also challenge yourself into poses that give you problems.  I have benefited from working my body in as many directions as possible.  I have better posture, and I feel healthier from it.  

Because of the benefits I have received from yoga as a person in chronic pain, I've launched on a quest to learn all I can about the practice of yoga, and I would like to train to become a teacher specializing in helping those in chronic pain.  This isn't going to take place immediately as the amount of knowledge to be acquired by a yoga instructor is vast, and I do not want to rush my study because I want to enjoy the journey, and hopefully bring my experiences to help others like me.

As for what other paths I will be taking in the future, they are still unknown, but I trust they will be revealed in time.  In yoga we end with the word Namaste, meaning "the light in me honors the light in you."  This warrants it's own post in itself relating to my experiences in India.  But for now I will just finish this post with Namaste.

I'm Still Learning

While I plot my next entry in my manifesto, I wanted to talk about how I am still learning how to deal with my chronic condition, fibromyalgia.

Last night is a classic example of "overdoing it."  I didn't drink, partly because I am not drinking beer (gluten), and partly because it didn't really cross my mind.  My new lifestyle has lead me to make much healthier choices than before.  However, I did not make those choices when it came to eating chicken wings, candy, and staying up late.  Today I am paying for it.  I've had less than 4 hours of sleep at this point because I am sick to my stomach and my body hurts horribly.  I hope to go back to bed, but do not know if this will be allowed to happen.  

I believe I've entered a new stage in my life.  The part I learn to deal with my body, what I've had to change due to Fibromyalgia, and being thankful for what I do have.  I am still learning.  I also know that I will not get through this next stage in my life by myself.  I've been spending a lot of time isolated, mostly because it is hard for me to get out and about.  But for me to adjust to this life, I need to be with the people who care about me and want me to live the best life that I can.  I am not sure how this is going to take place, but I know it is something that I have to do.  I have so much to write about, but that will wait for another day.  I need to head back to the bed and get some pillows under my legs or something.

My wonderful darling and caring husband broke the recliner this weekend... he we leaning over to give me a kiss, so I'm not terribly mad.  While it is functional, it is not that same.  So, I am taking full advantage of the wool mattress pad on my bed today and resting in comfort.

When to make the call...

I've come to terms with the fact that I have one (or many) chronic conditions and they are going to predict how I feel on particular days throughout my life, especially over the next couple of years as I try to figure things out.

After feeling horrible for most of December and being on vacation at home with family, I realized on the ride home that my sinuses were hurting.  I didn't think that I had a sinus problem, I wasn't congested any more than usual.  A little short of breath, but I have asthma, and I was having a lot more headaches, but not out of the ordinary.  My throat has been persistently sore for awhile now, so yesterday I decided to make an appointment with my doc to see what was up.

Turns out I have sinusitis, or the crud as she so professionally put it.  I use to get this all the time, but it was always accompanied by horrible colored mucus oozing from my nose.  So, this asks the question: When am I "sick" enough to call a doctor and when should I just chalk it up to being chronically ill?

I obviously don't have the answer to this, but am looking for some insight if any of you other sickies out there are reading.

I believe that it will be something I learn over time.  I feel that I know my body pretty well, and have realized symptoms and illnesses over the years a lot earlier than some people.  So perhaps this is just another learning phase in my new body.