Monday, December 27, 2010

I heart my liver. What do you love?

The human body is amazing, really.  I've been reading about all of the things it does on a daily basis and I am amazed.  Sometimes those of us with chronic illnesses need to be reminded that there is so much working right with our bodies.  It is easy for me to see what is wrong with my body.  I could give you a list of labels, like: fibromyaglia, Ehlers-Danlos Syndrome, IBS, PCOS, Complex-PTSD...  I could give you a list of symptoms: chronic pain, joint dislocations, brain fog, chronic headaches, gastrointestinal problems, flashbacks, hot flashes... Do I ever sit down though, and think of all the things that my body does well?  Not really, but I should.  I think we should all give our bodies credit for all the hard work it goes through.  I know may I sound as if our bodies and ourselves were completely separate entities, but I don't mean that.  I am proud of my body.  I'm proud of my intelligence (yes, your brain is part of your body), my face, my smile, and the extra skin under my arms and on my tummy that came from losing 100 pounds.  Now the extra skin is "plumped up" because I've gained weight but I hope to "deflate" my tummy again soon.  Either way I love me.  I love my thighs, because they are strong.  I love my feet because they ground me.  I love my fingers because on days when they hurt I appreciate them so much more.  I love my liver, because I almost I almost died right before I met my DH.  I would definitely have been on the liver transplant list if it wasn't for my "hell of a liver," as the doctor in the ICU put it.  So the more I learn about the human body the more I appreciate it.  We are true works of art in motion.  We should be proud of not only who we are but our bodies and minds.  I think this is especially important with people who have chronic illnesses.

Tuesday, December 21, 2010

On the importance of thought

I realize that I haven't written here in awhile.  In fact I have been behind on all my blogs, so watch for updates on Smart Fibro Chick, Survivor, Please Tape Me Back Together, and The Disillusioned Agnostic.  I am on a fibromyalgia medication that I have stopped cold turkey.  I think my worst symptom so far has been being really shaky and it being really hard to think.

A whole bunch of needless problems are going on with the in-laws.  That's another story, and one I am not writing about now.  So, the reason I brought that up, is to stress how much stress I'm under.  I did five minutes yesterday on the new (to me) exercise bike I got off of freecycle.  I'm so proud of myself.  Of course with the fibro & ME/CFS (or does it go CFS/ME?) I'm sore extra days from exercising.

I really want to be a Mommy and that is a big reason I want to be a healthier me.  I want to get healthy for myself and for our future child (or if we are surprised, then children).  I want to be on as few medications as possible in anticipation when I have to go off them all when we are TTC (trying to conceive).  I want to have a body that can carry a child nine months.  I want to be healthy enough to be fertile and to take care of myself as an expecting and new mother and to take care of a child my DH and I bring into this wonderful world.  Because that is what it comes down to.  If the world is so horrible, then why would we all keep having children?  We feel the need to not just have sex, but to procreate because this is a wonderful world.  :-)  Smile today!

Monday, November 15, 2010

A day in bed, a shrinking zebra, and a Halloween kitty

I spent all day in bed, exhausted and fatigued.  I have finally come to the conclusion that I have CFS/ME.  I was sick for a month last December and after I got over the illness I haven't been the same since.  There are days I'm so tired I can't stay awake more that 15 minutes.  When I try to read I see the words blur before my eyes then I'm waking up with a book on my face.  Sometimes lifting my soda can hurts so bad.  When it doesn't hurt it often is exhausting.

I have to admit, I didn't think that CFS/ME was much of a big deal until I got it.  I thought it was basically lazy people.  Now, since I've learned about fibro and CFS/ME in the last couple of years I know that my previous assumptions are untrue.  Knowing what something is and having the illness are still two different things.  I remember when I was sick the doctors didn't know what it was.  They assumed (as did I) that I had a bad sinus infection.  They did a catscan of my head because I wasn't getting any better.  The catscan revealed no sinus infection.

I've decided I need to do something about my weight.  The first thing I'm going to do is to concentrate on my eating habits.  I've started a blog, The Shrinking Zebra, to chronicle my weight loss journey.  The first week I'm just recording what I eat without changing anything.  I plan on loosely following Weight Watchers to start with.  I'm actually pretty excited about this.  I can see from the three days I've recorded my food intake that my eating habits are out of control.  I'm proud of myself for my determination to change this.

To end this blog I want to give you all a smile.

Niki in her Halloween princess costume

Thursday, November 11, 2010


Nov 07, 2010
10:01 am

Lately I’ve had lots of problems with pain from my pelvis down and then both hip joints.  My thighs feel a bit swollen, my calves more swollen, and my feet are really visibly swollen.  I don’t know if the problems with my legs and feet swelling are fibro, but I suspect it is, or at least has something to do with it.  The problem with this hypothesis is that fibromyalgia doesn’t cause swelling.  The swelling isn’t immediately visible, except for my feet, but I can feel my legs and feet swelling and it hurts badly.  Perhaps I’m wrong and this has more to do with Ehlers-Danlos.  I don’t know.

I’ve been having a really hard time staying positive lately.  DH’s mom was in the hospital with congestive heart failure and now resides in a nursing home.  The doctors don’t think she has very long.  DH’s brothers are setting off to hitchhike to the next state over to live.  They are bringing some of their pets with them while they hitchhike.  DH is worried (as well as myself) about them, especially because they are taking their animals and that may keep them from getting there safely.  I wonder if anyone will pick them up, what with three adults and two or three cat carriers.  DH is really scared for his brothers, especially for my BIL#1 (Brother-in-Law #1).  DH and BIL#1 were very close growing up.  I’m really worried about my DH, too.  Needless to say, my stress levels are very high and that’s not half of my stressors. 

Cox Hospital roof from the waiting room. This is where my mother-in-law was.
Sometimes I wish that I could really tell people how I am or what I think.  When someone asks “How are you doing?” they do not want an answer to that question.  When someone asks me that question I say “I’m alive.”  Sometimes DH and the kitties are the only thing keeping me sane.  I want so much to contact all my friends on Facebook, Twitter, and snail mail pen pals.  Unfortunately I do not have internet at the moment and I do not have a way to read or respond to my texts since my phone is broken.  I hope that my friends don’t either forget me or not care to be my friend still.  I guess I’m extra sensitive that people may not want to be my friend anymore, because my mother (the evil bitch that she is) always made sure I had no friends.  If I made a friend she would either go straight to my friend to get them to give up on my friendship, or she kept telling me that they didn’t like me.  So, because of that, I didn’t really have any friends growing up.  I have pretty bad social anxiety, plus I can’t leave the house often because of my pain.  My friends online and  my pen pals really are good friends and I don’t have to go somewhere where my anxiety makes me miserable and I don’t have to worry about not seeing my friends from the increasing pain levels that keep me home most of the time.  I have wonderful friends that I meet online or through the mail and I couldn’t find better friends if I combed the country and including a few foreign countries.  I wish I could at least get stamps.  I miss my friends so bad.  The problem is lack of internet, phone, and stamps.  I have no way to communicate with the outside world, save occasionally going to Wal-Mart with my DH.  This would be where I’d...

Thursday, October 28, 2010

The Truth About Doctors

Warning: this blog will probably be a bit negative, though true, about the shitty medical system in the USA.

Okay, let's face it-your doctor doesn't give a damn about you.  Doctors go home at the end of the day and leave the office behind.  Doctors do not care how bad your pain is, because they don't have to experience it.  Doctors became doctors for money and status, not because they are altruistic and want to make the world a better place.  You can beg your doctor to send you to physical therapy, but that would require picking up a pen and writing a script for it.  Doctors don't care if your body falls apart.  Doctors don't give a damn if you cry multiple times a day, every day, in excruciating pain.  They just plain don't care.  They want to do as little work as possible, and writing out that script for physical therapy is just too much work for a doctor to do.  A doctor has better things to do, like lord over others and perfect the art of being a horse's ass.  It isn't that your doctor hates you, though s/he might; instead doctors are apathetic and could care less.  Doctors do not care about being educated on fibromyalgia, Ehlers-Danlos Syndrome, or any other medical illness you may have.  A doctor will often hand you back educational materials with a smirk.  A rheumatologist can't get a crying, limping, and barely able to walk patient in excruciating pain out of their office fast enough because watching someone cry is boring to them and puts a crimp in their style.  Geneticists love to talk down to you; in their mind you aren't very intelligent or you'd be a geneticist like them.  Neurologists don't give a damn how many seizures you have as long as he doesn't have to be called to the ER again.  After that the neuro will give instructions to not go to your hometown ER for multiple seizures anymore because he doesn't want to mess with it.  He will tell you to go to a bigger city.  It puts a crimp in a nueuro's style to have to watch his/her patient seizing.  Primary care physicians are a joke.  They aren't a funny joke, either.  PCPs will not do anything beyond drawing a CBC (Complete Blood Count) and writing out a referral.  They don't feel like messing with anything else; perhaps it is because they aren't smart enough to do anything else.

The sad truth is that today's physician doesn't give a damn about you or any other patient.  Learning this will make you cynical, but at least you won't be surprised anymore.

Tuesday, October 26, 2010

Rolling Over Wrong & the Importance of Laughter

“Rolling Over Wrong & the Importance of Laughter”

Oct 07, 2010
12:03 pm

I recently read somewhere that posture matters a lot even in our sleep.  I have always slept with a pillow between my knees if I sleep on my side and if I sleep on my back I put pillows under my knees.  I learned that posture matters even when you roll over.  Most people lead with their head when rolling over rather than keeping their head on the pillow when they roll over.  Leading with your head can cause neck and shoulder pain.  I decided to try this out.  I first rolled over leading with my head (like normal).  Then I rolled over with my head on my pillow and was surprised at the difference in the pain that usually follows after rolling over.  I thought this was an interesting thing to learn about considering I am a toss and turn kind of sleeper.

To close I want to remind everyone of the importance of laughter.  It feels good to laugh, especially when your days are filled with pain.  So, take a look at the “Emergency Kitten” picture and have a laugh. J

On What a ‘Spoonie’ Is & Why a Spoonie Mag Would Be So Cool

“On What a ‘Spoonie’ Is & Why a Spoonie Mag Would Be So Cool”
Oct 07, 2010
12:00 pm
I would absolutely love to start a magazine called “Spoonie Magazine: For Awesome People with an Invisible Illness.”  I just don’t know if it will be against Christine’s wishes so I need to ask her first before I proceed.  Christine is the awesome, awesome lady who coined the term “spoonie.”  She also started the website 

So what is a spoonie, you ask yourself?  A spoonie is someone with an invisible illness.  Some examples of invisible illnesses are: lupus, fibromyalgia, CFS/ME, Chiari Malformation, Ehlers-Danlos Syndrome(EDS), Rheumatoid Arthritis (RA), mental illness…  Christine explains the best on how she came up with the term that so many of us now self-identify as.  So to read what a spoonie is in her own words:

The Spoon Theory

by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino 

I would like to start this magazine but I have no idea on where to even begin.  First of all I have to ask Christine for permission to use the word “spoonie” for the magazine’s title.  Then I have to figure out  how to go about getting this task done.  I’m not sure how you go about getting a glossy magazine made.  I’d love to give it away free, but without sponsors or ads I’m not sure how I could.  I would need to print off the magazine and to mail it.  Maybe it could start out a small publication and move into something larger.  I think that I could get people I know from Twitter and Facebook to volunteer to write in the magazine, at least for the first few issues. 
Suggestions on how to go about this would be awesome!  Thanks for reading. J

Friday, September 3, 2010

On chronic pain & suicide

I'm still reading the book Fibromyalgia & Chronic Myofascial Pain: A Survivor Guide by Devin Starlanyl and Mary Ellen Copeland.  The chapter I just finished was on chronic pain and the chapter ended with a blip on suicide.  I think most people don't think about this.  I don't want to think about it.  I will come forward, though, and admit to having thought about suicide more than once on high pain days.  I never got closer than thinking about it, and I can understand why and how it could happen.  Chronic pain is scary.  Living with chronic pain is often a lonely existence.  I couldn't take care of myself if I didn't have Jim and it isn't something I like to think about. I would like to share an excerpt from the book.
"I had the sad honor of facilitating a memorial service over the Internet for one woman who could no longer bear her suffering.  She was not getting the symptom relief she needed, and she took her own life.  Her own minister refused to do that service.  He insisted that because of the manner of her death, she went to hell.  It is my own belief that this minister may be very surprised when he arrives at that destination and she isn't there.  She had already served her time in hell.  I believe that religion is about healing and compassion, not about judgement.
"At about the same time, I heard about a woman living near Chicago who was suffering from unbearable pain.  Her doctor had examined her and had diagnosed myofascial pain.  Then he told her she'd have to "learn to live with it," because there was nothing she could do.  Her husband could not stand to see her in so much pain, so he shot her and then he killed himself.  Does her doctor understand what he has done?"
In answer to the author's question, I think her doctor just doesn't give a damn either way.  I've learned the hard way that doctors do not become doctors to help people, they become doctors so they can make money.  There is no beating around the bush.  Most doctors don't give a flying crap about the patient while she is in the exam room, much less once she leaves.  When it comes down to living with chronic pain, you really are alone.  If you are very lucky you may have one or two people there who really support you, but most people don't have that.  I am lucky to have my Jim, but it is still me, and me alone, suffering in this state of chronic pain. 

Sunday, August 29, 2010

Hope means a lot to us spoonies

The human body is amazing, really.  I've been reading Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition) by Devin J. Starlanyl and Mary Ellen Copeland.  The book is really well written and I'm learning a lot.  I still have a few chapters to go, though.  

There are so many processes that go on in the human body that I'm in awe.  The more I learn about the body and the many processes our bodies go through each day the more I'm amazed that with all that can go wrong, anyone is healthy.  Considering the many processes my body does each day I'm amazed that I'm this healthy!

I've been reading about chronic myofascial pain (CMP).  CMP is an actual disease, unlike fibromyalgia,, which is a syndrome, or collection of symptoms.  A disease has a specific cause.  There are so, so many places in the body that can form myofascial trigger points (TrP).  A TrP is different than a fibromyalgia tender point.

CMP is common, which surprised me.  I'm amazed at how many TrP can exist.  I think the best thing I've learned about CMP is that you can make it go away.  Yay!  I'm still reading on how to make them go away.  I want to get a couple more books on it from Amazon.  This is good news, though.  I kinda feel like it gives me hope, you know?  

In the first drawing you can see how the contraction knots form in normal muscle fibers.  I thought it really showed it well.  The second drawing I'm not as familiar with, but it shows a bunch of possible TrP that can occur in the back.

I still really don't have a doctor for my fibromyalgia.  I would like to see Dr. K out toward Kansas City, MO but for some reason he said he would only see me that once.  He wanted me to go to see a doctor specializing in EDS (which I will) but that still leaves no doctor to take care of my fibro...which is definitely  a problem.  After we get the car fixed I hope to be able to make an appointment with him.  I'm trying to get into physical therapy but no doctor wants to write the script.  I can't help but get a bit angry that the doctors go home each night and get up each day without being disabled by pain.  When I leave their office they don't have to deal with me anymore.  I don't get a break from the pain.  I am trying not to be angry, though.  Anger isn't productive.  Besides, with the car not running I couldn't get to physical therapy anyway.  I really, really hope that we can get the car running again soon!

Picture 1 from Amazon.comPicture 2 from TandemPicture 3 from Trisoma

Sunday, August 8, 2010

Dealing with the "F Word" and People Who Really Care

Ah, the "f word." I hate it, but I have to live with it.  Sometimes I feel like the "f word" is ruling my life. The "f word" is fibromyalgia in case you didn't figure that out yet.  I want to take my life away from fibro, but I can't seem to find a way to.  Also I'm having problems that come along with fibromyalgia, like digestive problems that I suspect are caused by IBS, and pelvic pain.  I had a doctor appointment set up at Katy Trail (the poor people doctor office) but I chickened out and didn't go.  It was for the suspected IBS.  There really isn't much they can do anyway.  Then I had an appointment set up at my gyno's office for the pelvic pain I've been experiencing for months.  I once again cancelled because I chickened out.  When you already hurt having your hoo-hah examined first thing in the morning isn't fun.  Well gyno visits, or any doctor visits are not fun, but some visits are much less fun than others.  In fact it's the opposite of fun.

Right now I'm relaxing on the couch waiting for my honey to get home.  Maybe relaxing isn't the right word.  I wish I could relax!  Instead I am sitting partially slouched over because of back pain, my flopping shoulder joints are supported by my elbows on my thighs, I can feel the pain and tightness in my neck, upper and middle back radiating down my body.  My fingers hurt too bad to write but fortunately I can still type.  My ankle joints are loose and painful.  I can feel all my muscles tight, and in pain.  Not even my toes are exempt from pain.

Now if I told you this when you asked how I was, you'd run, wouldn't you?  No one seems to really care about how others feel.  People tend to only worry about their own problems.  One of the things I've learned in the last 8 months is that other spoonies are very supportive of each other.  When I tell a spoonie friend what is going on they care.  I mean they don't just give a half-hearted "Uh, huh, get better soon."  My spoonie friends really care.  I really care about them, too.  I'm not saying that non-spoonies don't care at all, I'm just talking about my experiences.  My bff Om really cares, as does her family.  My wonderful pen pals really care, at least most of them.  So there are people in my life who I know care.  Last but certainly not least, I know that my husband, Jim, cares.

Friday, February 12, 2010

'Fibro and CFS don't occur together' Whaaat???

I saw a new rheumy, Dr. V's nurse practitioner, the other day.  I am glad that she renewed the scripts I needed and glad that she takes my fibro seriously.  However, I asked her about the possibility of Chronic Fatigue Syndrome and she told me she doesn't believe that they can occur in the same person.  Whaaat???

FMS and CFS occur in the same person commonly.  She also doesn't take my Ehlers-Danlos seriously.  Sigh.  At least she is giving me the medicine I need for my fibro: Lyrica, Celebrex, and Flexeril.  I think that the Celebrex helps the EDS, not the fibro, but either way it really helps.

I'm kind of confused and frustrated now.  I honestly don't know if I have CFS and I know that they are trying to get a drug approved for it, would be nice to know one way or the other.

Take care, dear readers.

Sunday, January 10, 2010

Men are also fibromyalgia patients

Men are also fibromyalgia patients
Aug. 21, 2009

The chronic pain syndrome fibromyalgia, which most often occurs in women, can also affect men -- not only as patients, but as caregivers, U.S. researchers say.

"Although 10 percent to 20 percent of fibromyalgia patients are males, few scientific studies have been done in this population," Lynne Matallana of the National Fibromyalgia Association says in a statement.

The National Fibromyalgia Association and the American Pain Foundation are joining with the Men's Health Network in conducting an online survey.

"This survey will help us understand what men know, or more importantly don't know, about fibromyalgia, its symptoms, and a man's willingness to discuss any pain, discomfort, fatigue and other signs of the condition with his physician," Scott Williams of Men's Health Network says.

"Fibromyalgia has a reputation of affecting more women than men, but I am certain that the disease is far more prevalent in men than is reported in the data," Will Rowe of American Pain Foundation says. "It's a perfect disease to stay under the radar for men since men are saddled with the harmful belief that pain is something to endure and not report."

Taken from