Tuesday, February 28, 2012
Fibro+Small Photoshoot=Ultram
Hmmm....6:30pm. Do I chance taking an Ultram then being up until 7 or 8am tomorrow, or do I live with the pain? I chose the Ultram and I'll just hope & pray that I'm not up all night from it. I was so tired today, that getting on the ground to take photos of baby Leah about killed me. I did do a short session though. I wasn't too incrediably happy with the way they turned out. Just was too whipped to re-do them today. Easter isn't until April 8th this year, so I have time to take some more at least lol. Enjoy the few that I'm going to post here!
Celebrities With Chronic Pain?
Doing an internet search for celebrities with Fibromyalgia returned dismal results. I came up with Michael James Hastings, Susan Flannery, Frances Winfield Brenner, and Sinead O'Conner. Although Paula Abdul and Tobey Maguire don't suffer from Fibromyalgia, they do both suffer from different forms of chronic pain.
Can there really only be these few famous people that suffer with Fibromyalgia? Or does the public stigma that has followed people with Fibromyalgia in the past contributed to more celebrities just not stepping forward with their diagnosis? If that's the case, I feel sad.
Fibromyalgia can be debilitating. It's real. More proof is found all the time, of how Fibromyalgia effects people's bodies and lives. Differences in sleep patterns, and differences in neuro activity have been identified.
As I've stated in a previous post, the federal government allocates very little funding to the research of Fibromyalgia. The only way this may change is if people step up and bring awareness to this syndrome. People with the syndrome need to make themselves heard. I'm a "nobody" in the world of knowns. I don't have money to donate to research. I doubt I could every make a difference in the world of Fibromyalgia and research, but I'll keep blogging and trying until the day I can't blog anymore. I hope others with this syndrome does the same.
My oldest daughter is pursuing a master's degree in economics, with focuses on both International, and Developmental Economics. She has some very influencial contacts that I will not publicly name. My youngest daughter, 16 years old, I fully suspect also has Fibromyalgia. When she goes to college she's planning on majoring in Journalism and Communications, although her heart lies with singing and acting. I guess I'll have to hope that one of my two girlies make it big one way or another, and can help take a stand on the research of Fibromyalgia.
I'm blogging this post today, with my left hand/finger still numb. My head is killing me. My back feels as if it's broke, and I'm so tired that I feel like someone has stuck an IV into me, and sucked out all of my energy. None the less, I'm still planning on doing an Easter photoshoot with my soon to be step-grandbaby this afternoon when she gets home from the babysitter. I refuse to throw away the things in life that I'm passionate about, just because this evil syndrome wants me to sit and do nothing for the rest of my life. I will not cave and give up the things I love.
Can there really only be these few famous people that suffer with Fibromyalgia? Or does the public stigma that has followed people with Fibromyalgia in the past contributed to more celebrities just not stepping forward with their diagnosis? If that's the case, I feel sad.
Fibromyalgia can be debilitating. It's real. More proof is found all the time, of how Fibromyalgia effects people's bodies and lives. Differences in sleep patterns, and differences in neuro activity have been identified.
As I've stated in a previous post, the federal government allocates very little funding to the research of Fibromyalgia. The only way this may change is if people step up and bring awareness to this syndrome. People with the syndrome need to make themselves heard. I'm a "nobody" in the world of knowns. I don't have money to donate to research. I doubt I could every make a difference in the world of Fibromyalgia and research, but I'll keep blogging and trying until the day I can't blog anymore. I hope others with this syndrome does the same.
My oldest daughter is pursuing a master's degree in economics, with focuses on both International, and Developmental Economics. She has some very influencial contacts that I will not publicly name. My youngest daughter, 16 years old, I fully suspect also has Fibromyalgia. When she goes to college she's planning on majoring in Journalism and Communications, although her heart lies with singing and acting. I guess I'll have to hope that one of my two girlies make it big one way or another, and can help take a stand on the research of Fibromyalgia.
I'm blogging this post today, with my left hand/finger still numb. My head is killing me. My back feels as if it's broke, and I'm so tired that I feel like someone has stuck an IV into me, and sucked out all of my energy. None the less, I'm still planning on doing an Easter photoshoot with my soon to be step-grandbaby this afternoon when she gets home from the babysitter. I refuse to throw away the things in life that I'm passionate about, just because this evil syndrome wants me to sit and do nothing for the rest of my life. I will not cave and give up the things I love.
Sunday, February 26, 2012
Fibromyalgia Numbness
For three straight days now, I've been dealing with numbness in my left hand and little finger. I've read from multiple sources that fibromyalgia effects 3-5% of the population. Out of that 3-5% that's effected, roughly a quarter of people suffer from fibromyalgia numbness. Just my luck, to be in that quarter, out of the 3-5% of the fibro population.
Everything I've read states that Fibromyalgia Numbness can affect any part of your body, including your face, but the most common areas for it to strike is the arms or hands and fingers. Everything also states that it can last only a short while, or it can last forever. There's nothing that can be done about it. No medication to relieve this symptom. Of course, they don't know "why" this happens. Just that it's neurological. One theory is that muscles that are tense and knotted, put pressure on a nerve to cause the numbness sensation.
The other day, it was just annoying. Now, I'm past that annoying stage and I really don't like it one bit. It interferes with my typing. It feels weird. I want it gone. Even rubbing lotion on my hands a bit ago felt weird!
In 2008 the National Institutes of Health was expected to award $393 million dollars to study hypertension, while only awarding $9 million dollars to research fibromyalgia. Based on a financial report from the NIH's website, U.S. government funding for fibromyalgia research ranks in the bottom 10%. This saddens me, and pretty much assures me that I'll be living with fibromyalgia for the rest of my life. I'm not hopeful for a cure to be found in my lifetime. I am hopeful though of getting the symptoms into remission, and maximizing that time that I have with it in remission.
For now I'll keep on with the muscular and tendon pain, the sleep disturbances, the fibro fog, and the numbness along with everything else. I'll keep my head up and keep hoping for a miracle breakthrough in private research. What I want to know though, is that if I'm "lucky" enough with the numbness to hit 1/4 of the 3-5% that has fibro, why can't I hit the lottery??!
Everything I've read states that Fibromyalgia Numbness can affect any part of your body, including your face, but the most common areas for it to strike is the arms or hands and fingers. Everything also states that it can last only a short while, or it can last forever. There's nothing that can be done about it. No medication to relieve this symptom. Of course, they don't know "why" this happens. Just that it's neurological. One theory is that muscles that are tense and knotted, put pressure on a nerve to cause the numbness sensation.
The other day, it was just annoying. Now, I'm past that annoying stage and I really don't like it one bit. It interferes with my typing. It feels weird. I want it gone. Even rubbing lotion on my hands a bit ago felt weird!
In 2008 the National Institutes of Health was expected to award $393 million dollars to study hypertension, while only awarding $9 million dollars to research fibromyalgia. Based on a financial report from the NIH's website, U.S. government funding for fibromyalgia research ranks in the bottom 10%. This saddens me, and pretty much assures me that I'll be living with fibromyalgia for the rest of my life. I'm not hopeful for a cure to be found in my lifetime. I am hopeful though of getting the symptoms into remission, and maximizing that time that I have with it in remission.
For now I'll keep on with the muscular and tendon pain, the sleep disturbances, the fibro fog, and the numbness along with everything else. I'll keep my head up and keep hoping for a miracle breakthrough in private research. What I want to know though, is that if I'm "lucky" enough with the numbness to hit 1/4 of the 3-5% that has fibro, why can't I hit the lottery??!
Saturday, February 25, 2012
Ouch! Ouch! Ouch!
Ok, this is gonna be a big ole vent post. I had a headache, back pain, and a burning pain around my left knee so I took an Ultram. The pain didn't go away so I thought I'd couple it with a hot, relaxing bath. My tub is a normal tub (even though I'd almost KILL for a whirlpool tub) but it's extra deep. It has a slanted back, and arm rests. It's nice to soak and relax in.
I got the water nice and hot, and layed back to relax. It made me feel pretty good, so I moved on to washing my body. Big mistake. As I leaned forward and reached out to start washing my right leg, my body was cocked just enough that it put a HUGE charley horse cramp right below my right rib cage.
It hurt so bad I could hardly breathe. I started yelling "Ouch! Ouch! Ouch!". My husband came in and asked what was wrong, and I told him that I needed his help. The cramp was even starting to make smaller (although still painful) cramps around the sides of both of my shoulder blades in my back.
Jason had to help me rinse off, dry me, then help me get dressed. How. Humiliating. This is the 2nd time within a week or two that this has happened to me and I've had to have help. It makes me feel like an invalid, when I'm only 41. I'm sick of it. It's embarrassing. Totally. Not to mention painful.
I'm not even going to complain about the fact that the outside of my hand & down my little finger has been numb for about the last 6 hours or so tonight. At least that's just annoying, and not painful. Fibromyalgia, I'm sick of you. I'm mad, and I'm fighting back!! Fibro, I'm giving you a great big middle finger!
I got the water nice and hot, and layed back to relax. It made me feel pretty good, so I moved on to washing my body. Big mistake. As I leaned forward and reached out to start washing my right leg, my body was cocked just enough that it put a HUGE charley horse cramp right below my right rib cage.
It hurt so bad I could hardly breathe. I started yelling "Ouch! Ouch! Ouch!". My husband came in and asked what was wrong, and I told him that I needed his help. The cramp was even starting to make smaller (although still painful) cramps around the sides of both of my shoulder blades in my back.
Jason had to help me rinse off, dry me, then help me get dressed. How. Humiliating. This is the 2nd time within a week or two that this has happened to me and I've had to have help. It makes me feel like an invalid, when I'm only 41. I'm sick of it. It's embarrassing. Totally. Not to mention painful.
I'm not even going to complain about the fact that the outside of my hand & down my little finger has been numb for about the last 6 hours or so tonight. At least that's just annoying, and not painful. Fibromyalgia, I'm sick of you. I'm mad, and I'm fighting back!! Fibro, I'm giving you a great big middle finger!
Friday, February 24, 2012
Monday, February 20, 2012
Frustrating...
I didn't feel too bad today, so I thought I'd take advantage of that by actually caring about how I look. I started supper, then took a shower. While getting dressed, it started hitting me. It completely wore me out just to bathe, dry off, and get dressed.
I had planned to put on actual clothes today. I pretty much live in sweat pants and t-shirts. They're comfortable and take no effort to throw on. I had also planned on blow drying my hair and doing it for once. I was so drained though, that I just got dressed then had to come sit and rest for awhile. At least I did put on "real clothes" though, like I had planned.
I ate dinner, then went ahead and put product in my semi-wet hair and used the blow dryer while scrunching it. When I finished my hair, I put on some facial moisturizer and mascara. I even put on some perfume. So...I did finish what I wanted to accomplish today. Just frustrated that it took until 6:45PM to get it all done. Simple, meaningless tasks are so hard for me to do these days. Now, my husband better notice, or I'm REALLY going to be frustrated!!
I had planned to put on actual clothes today. I pretty much live in sweat pants and t-shirts. They're comfortable and take no effort to throw on. I had also planned on blow drying my hair and doing it for once. I was so drained though, that I just got dressed then had to come sit and rest for awhile. At least I did put on "real clothes" though, like I had planned.
I ate dinner, then went ahead and put product in my semi-wet hair and used the blow dryer while scrunching it. When I finished my hair, I put on some facial moisturizer and mascara. I even put on some perfume. So...I did finish what I wanted to accomplish today. Just frustrated that it took until 6:45PM to get it all done. Simple, meaningless tasks are so hard for me to do these days. Now, my husband better notice, or I'm REALLY going to be frustrated!!
Friday, February 17, 2012
Did Someone Say, Stress?!
According to both rheumatologists I've seen, stress is a huge factor in bringing on pain flares. I have a husband who's a local truck driver, working crazy long hours on the roads, 4 children...1 who also has pcos and depression, and I fully suspect she also has fibromyalgia, 1 soon to be granddaughter by marriage that turned 7 months old yesterday, and 2 dogs. I don't know how not to have stress in my life.
Last night around 10pm my son called. He's the one who is getting married soon, he's 18. -Stress enough for me that he wants to get married and take on the responsibility of a "ready made family" at his age. They'd been living in her grandmother's extra farm house. The girls brother also lives there with his family. Things turned heated last night, and they ended up needing to leave. So, with my husband having to get up for work at 4am and take a load to PA, he had to get up and go pick up our son, his girlfriend and their baby. He ended up not getting home and back to bed until midnight, so therefore he had to set his "start" time for later then he should've.
My son had been telling we all week that he had a cold and didn't feel good. When he got here last night he was white as a ghost. Stated he'd vomited a few times yesterday. He laid on the floor and moaned and wriggled in pain from his stomach. Finally, around 1:30am he told me he thought he was dying and had to go to the hospital. We got there and his bp was 112/47. They started an I.V. Gave him pain meds and zofran through the I.V. Then they did an xray of the stomach and a CT of his entire abdomin. Everything came back fine except the CT showed fluid around his liver. They said that's usually indicative of hepatitis, but that his blood work all came back fine so that didn't support a hepatitis diagnosis. They discharged him a little after 5am this morning.
This afternoon, the stomach pain started up again. No vomiting today. He was again laying on the floor moaning and wriggling with the pain. Called the ER and they said to bring him back out again. After not getting to bed until 6:30am I was just too wiped out to go with him this time. His girlfriend drove him out, and my daughter went with them. She just called me and said that they're starting another I.V. and doing more blood work. They're going to check to see if he has hepatitis and they're going to check for an obstruction of his liver. Not sure how they check, but Courtney's supposed to find out and call me back.
Keep stress out of my life? Yeah...not happening at this point and time. I really need a nice 1 week vacation on a beach somewhere, with a full body massage at a spa. :/
Last night around 10pm my son called. He's the one who is getting married soon, he's 18. -Stress enough for me that he wants to get married and take on the responsibility of a "ready made family" at his age. They'd been living in her grandmother's extra farm house. The girls brother also lives there with his family. Things turned heated last night, and they ended up needing to leave. So, with my husband having to get up for work at 4am and take a load to PA, he had to get up and go pick up our son, his girlfriend and their baby. He ended up not getting home and back to bed until midnight, so therefore he had to set his "start" time for later then he should've.
My son had been telling we all week that he had a cold and didn't feel good. When he got here last night he was white as a ghost. Stated he'd vomited a few times yesterday. He laid on the floor and moaned and wriggled in pain from his stomach. Finally, around 1:30am he told me he thought he was dying and had to go to the hospital. We got there and his bp was 112/47. They started an I.V. Gave him pain meds and zofran through the I.V. Then they did an xray of the stomach and a CT of his entire abdomin. Everything came back fine except the CT showed fluid around his liver. They said that's usually indicative of hepatitis, but that his blood work all came back fine so that didn't support a hepatitis diagnosis. They discharged him a little after 5am this morning.
This afternoon, the stomach pain started up again. No vomiting today. He was again laying on the floor moaning and wriggling with the pain. Called the ER and they said to bring him back out again. After not getting to bed until 6:30am I was just too wiped out to go with him this time. His girlfriend drove him out, and my daughter went with them. She just called me and said that they're starting another I.V. and doing more blood work. They're going to check to see if he has hepatitis and they're going to check for an obstruction of his liver. Not sure how they check, but Courtney's supposed to find out and call me back.
Keep stress out of my life? Yeah...not happening at this point and time. I really need a nice 1 week vacation on a beach somewhere, with a full body massage at a spa. :/
Tuesday, February 14, 2012
The Most Common Misconception About Fibromyalgia
I was doing some research to try and put together a fact vs myth type post about fibromyalgia. I'm still going to do that within the next day or so, but I ran across an interview tonight that has a few paragraphs worth posting. The interview was with Connie Ludtke, R.N. who's the nursing supervisor of the Fibromyalgia and Chronic Fatigue Clinic at the Mayo Clinic, Rochester, MN. The interview is posted on the Mayo Clinic's website and you can find the entire interview HERE.When asked, "What is the most common misconception about fibromyalgia?" this was her reply:
"The top misconception is that people think fibromyalgia isn't a real medical problem or that it is "all in your head." It's sometimes thought of as a "garbage-can diagnosis" — if doctors can't find anything else wrong with you, they say you have fibromyalgia. Being diagnosed with fibromyalgia does require that you meet specific criteria, including painful tender points above and below the waist on both sides of the body.
There's a lot that's unknown about fibromyalgia, but researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently; they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem."
When asked, "Can misconceptions about fibromyalgia be harmful?" this was her reply:
"If people with fibromyalgia believe there is no help for them, they're going to stay stuck. Even if there isn't a cure, there are treatments that can really improve their quality of life. When people learn they have fibromyalgia, they can go through the stages of grief and loss — including experiencing anger and attempts at bargaining. When they get to the peace of acceptance, that's when they can realize there are limits to what medical technology can do. There's no magic surgery or pill that can fix this. They need to recognize that it's OK to ask for help with things and that it's OK to give themselves time for exercise and relaxation each day. They need to make their own health a priority. "
I find both of those paragraphs very informative. Especially the last one. When I read that people with fibromyalgia can go through the stages of grief and loss, it really hit me. Sure, we've all heard of the "grief cycle", but for me I related that to someone who's told they have cancer or that they're terminal. After reading this, and really thinking about it, I see that's exactly where I'm stuck right now. In the grief cycle. I'm not yet to peace and acceptance stage. Looking at the grief chart above, I'm stuck going back and forth between depression, guilt, and obsession I think. Where do you fall in the cycle?
Dinner, Laundry, and A Pain Pill
What a title, right?! That's how my day's gone so far though. My husband has been bugging me to make salisbury steak with homemade gravy, so I thought "Well, I'm actually up early enough to get it in the crock pot in time to be done for supper tonight...and it is Valentine's Day" so I went and made it. On Sunday, he did a couple loads of laundry for me, but it was all sitting in baskets so I decided that after I sat and let the spasms in my back stop, that I'd fold it. So I did. Between cooking and folding the laundry, I knew that my back and neck pain wasn't going to stop on it's own, so I downed an Ultram.
Ultram doesn't completely take my pain away, but it does usually help it by 50-70%. I'm just sitting here waiting on it to kick in, and hoping that today's a day that it will help. It makes me sad that doing even the simplist of things such as cooking a favorite meal for my husband, has become such a sacrifice. It's really not fair to my family. -And it's not fair to me either because as much as I detest doing dishes, I absolutely love to cook. The joy of cooking has been stole from me, by the evil grips of pain & fatigue. Welcome to a life with Fibromyalgia.
4 Hours Of Sleep....
I didn't fall asleep until 6am this morning, or a couple minutes before, and woke up at 9:55am. I woke up and felt pretty refreshed, so I figured it must be at least 1pm. Crawled out of bed, made a cup of coffee, then looked at the clock. 9:58am. -Figured it took me roughly 3 minutes to walk to the kitchen and make a cup of coffee (thank heavens I have a Keurig and it's quick!!). I couldn't believe that I was up! Of course I'm starting to feel tired now, already. I think it's gonna be a looonggg day and night.
Monday, February 13, 2012
Sunday, February 12, 2012
A Fibromite's Prayer
A Fibromite's Prayer
Now I lay me down to sleep,
I pray it's good, and long, and deep.
For if I wake, before night wanes,
I'll be tired, and "foggy" and full of pains
I found this on a t-shirt for sale at zazzle.com. It brought a small smile to my face today.
Symptoms Of Fibromyalgia
The National Fibromyalgia Association is located at http://www.fmaware.org/ . I'm posting the symptoms of Fibromyalgia exactly as found on their website. To see their original post of this, please click HERE.
Chronic widespread body pain is the primary symptom of fibromyalgia. Most people with fibromyalgia also experience moderate to extreme fatigue, sleep disturbances, sensitivity to touch, light, and sound, and cognitive difficulties. Many individuals also experience a number of other symptoms and overlapping conditions, such as irritable bowel syndrome, lupus and arthritis.
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| Image obtained at Google Images |
Chronic widespread body pain is the primary symptom of fibromyalgia. Most people with fibromyalgia also experience moderate to extreme fatigue, sleep disturbances, sensitivity to touch, light, and sound, and cognitive difficulties. Many individuals also experience a number of other symptoms and overlapping conditions, such as irritable bowel syndrome, lupus and arthritis.
- PainThe pain of fibromyalgia is profound, chronic and widespread. It can migrate to all parts of the body and vary in intensity. FM pain has been described as stabbing and shooting pain and deep muscular aching, throbbing, and twitching. Neurological complaints such as numbness, tingling, and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.
- Fatigue
In today's world many people complain of fatigue; however, the fatigue of FM is much more than being tired after a particularly busy day or after a sleepless night. The fatigue of FM is an all-encompassing exhaustion that can interfere with occupational, personal, social or educational activities. Symptoms include profound exhaustion and poor stamina
- Sleep problems
Many fibromyalgia patients have an associated sleep disorder that prevents them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the Stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep.
- Other symptoms/overlapping conditions
Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and impaired coordination.
Saturday, February 11, 2012
The Spoon Theory
This was originally written by Christine Miserandino and originally published at butyoudontlooksick.com. The spoon theory relates to any invisible illness such as Lupus, Fibromyalgia, Arthritis, CFS, etc. Whatever illness that causes you pain and fatigue, just replace your illness with the word Lupus.
I feel that this is a must read for all family members and friends of a loved one that's suffering from Fibromyalgia or any of the above mentioned illnesses. It's long, but it's well worth the read.
The Spoon Theory:
My best friend Jenni 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.
As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a 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. Jenni 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 “Jenni, 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 choice, 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 a 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 Jenni 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, “Jenni, 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 “Jenni, 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".
I hope that none of you ever run out of "spoons"!
I feel that this is a must read for all family members and friends of a loved one that's suffering from Fibromyalgia or any of the above mentioned illnesses. It's long, but it's well worth the read.
The Spoon Theory:
My best friend Jenni 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.
As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a 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. Jenni 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 “Jenni, 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 choice, 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 a 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 Jenni 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, “Jenni, 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 “Jenni, 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".
The Dreaded Fibromyalgia Diagnosis
Last October, I finally had my long awaited appointment with the Rheumatologist. I had waited months to get into this guy. He came in, spent about 10-15 minutes with me, then asked me to meet him in his office. When my husband and myself sat down with him, he said that he believed I had Fibromyalgia. I didn't like hearing that. After all, isn't that just a diagnosis that a doctor gives someone when they can't figure out what's wrong with them? MY bloodwork revealed a weakly positive ANA, a high SED rate, a high CRP. That wouldn't indicate just Fibromyalgia, would it?
On the drive home, I read through the pamphlet he'd given me on Fibro, from the National Arthritis Foundation. Yeah, I screamed out in pain when he'd applied pressure to the tender points. Yeah, I do have insomnia. I do have that thing they call "fibro fog", and I'm stiff and sore when I wake up. I have headaches almost daily, and symptoms of IBS....but I still wasn't comfortable with a diagnosis of Fibromyalgia. More so then not being comfortable with the diagnosis, I wasn't comfortable with the doctor. I felt that he rushed, he cut me off when I'd try to speak, and that he in general was just a complete pompous ass. He made me feel stupid.
They'd given me another appointment to see him again the end of December. Even though I didn't personally care for this doctor, I decided that maybe he just had been having a bad day the 1st time I'd seen him. -Or maybe I was the one that had a bad day. I kept my appointment, but again I was made to feel stupid and like I was wasting his valuable time at roughly $200 for a 10 minute visit. I wasn't told anything new. He didn't do anything new. Yet I was instructed to come back again the end of February.
An internet friend had been going through roughly the same thing I was, but she was being seen at the Cleveland Clinic Foundation in Cleveland, OH. She raved about how highly she thought of the CC and the doctor who she see's. I did some research and was very impressed. I called to see if they'd take me for a 2nd opinion appointment. They were happy to do so. Although I wasn't seeing the same Rheumatologist that my friend goes to, the doctor I was to see was also highly trained with great credentials. All of the Rheumatologists there are wonderful, experienced and knowledgable.
I went to my 2nd opinion appointment and can't say enough about how impressed I was. I live roughly 2 hours from there, but Dr. Gota and the CC is well worth the drive. I actually was at my appointment longer than it took me to drive there. After roughly 4 hours there, 13 tubes of blood, x-rays, and u/s I walked out still having that dag gone diagnosis of Fibromyalgia...but with a clearer understanding of Fibro and that it really can hurt that bad and still be just fibro. I also walked out with the additional diagnoses of AC Joint Arthritis in both shoulders, Osteo Arthritis in both knees, PCOS (which isn't even her speciality...it's a GYN issue, but she cared enough to do the tests), and IBS. I had been diagnosed with the bone spurs on my hip from the 1st Rheumatologist and his x-ray, and the diagnoses of spine bone spurs and Tarlov cysts from an MRI that a pain management doctor had ordered about a year ago. That same MRI had also revealed arthritis in my neck and spine too, but neither of the Rheumatologists have mentioned that to me so I don't know exactly where that stands LOL.
Some days I can barely move, from the pain I have. I will never again underestimate the pain that Fibromyalgia can cause. I will never again say just Fibromyalgia. I will never again think that this syndrome is just something made up. Unfortunately, I now know how evil Fibro can be.
I named this blog The Fibro Frog for 2 reasons...one was a play on words for the horrible Fibro Fog I suffer from almost daily. The second reason is because I've always loved the acronym frog...fully rely on God. I've been doing a lot of that lately. Daily, as a matter of fact. I've also decided to stay on with Dr. Gota at the Cleveland Clinic. I mean, the CC is rated as the 4th best hospital in the U.S. so if I'm within a 2hr drive of there, I'm treated like a human being there, my pain and symptoms are real to them, why in the world should I drive 45 minutes to a guy I can't stand?
I hope I get a lot of followers on this blog that will comment and contribute. Maybe we can build a network of support for each other, and share secrets of what works for us. Granted, no two people with fibro or even arthritis will suffer the same symptoms all the time. Not everything that works for one person will necessarily work for another, but maybe (hopefully) we can all work together to help one another. At the very least, we can spread the word about how real Fibromyalgia is, and bring awareness to this evil thing.
On the drive home, I read through the pamphlet he'd given me on Fibro, from the National Arthritis Foundation. Yeah, I screamed out in pain when he'd applied pressure to the tender points. Yeah, I do have insomnia. I do have that thing they call "fibro fog", and I'm stiff and sore when I wake up. I have headaches almost daily, and symptoms of IBS....but I still wasn't comfortable with a diagnosis of Fibromyalgia. More so then not being comfortable with the diagnosis, I wasn't comfortable with the doctor. I felt that he rushed, he cut me off when I'd try to speak, and that he in general was just a complete pompous ass. He made me feel stupid.
They'd given me another appointment to see him again the end of December. Even though I didn't personally care for this doctor, I decided that maybe he just had been having a bad day the 1st time I'd seen him. -Or maybe I was the one that had a bad day. I kept my appointment, but again I was made to feel stupid and like I was wasting his valuable time at roughly $200 for a 10 minute visit. I wasn't told anything new. He didn't do anything new. Yet I was instructed to come back again the end of February.
An internet friend had been going through roughly the same thing I was, but she was being seen at the Cleveland Clinic Foundation in Cleveland, OH. She raved about how highly she thought of the CC and the doctor who she see's. I did some research and was very impressed. I called to see if they'd take me for a 2nd opinion appointment. They were happy to do so. Although I wasn't seeing the same Rheumatologist that my friend goes to, the doctor I was to see was also highly trained with great credentials. All of the Rheumatologists there are wonderful, experienced and knowledgable.
I went to my 2nd opinion appointment and can't say enough about how impressed I was. I live roughly 2 hours from there, but Dr. Gota and the CC is well worth the drive. I actually was at my appointment longer than it took me to drive there. After roughly 4 hours there, 13 tubes of blood, x-rays, and u/s I walked out still having that dag gone diagnosis of Fibromyalgia...but with a clearer understanding of Fibro and that it really can hurt that bad and still be just fibro. I also walked out with the additional diagnoses of AC Joint Arthritis in both shoulders, Osteo Arthritis in both knees, PCOS (which isn't even her speciality...it's a GYN issue, but she cared enough to do the tests), and IBS. I had been diagnosed with the bone spurs on my hip from the 1st Rheumatologist and his x-ray, and the diagnoses of spine bone spurs and Tarlov cysts from an MRI that a pain management doctor had ordered about a year ago. That same MRI had also revealed arthritis in my neck and spine too, but neither of the Rheumatologists have mentioned that to me so I don't know exactly where that stands LOL.
Some days I can barely move, from the pain I have. I will never again underestimate the pain that Fibromyalgia can cause. I will never again say just Fibromyalgia. I will never again think that this syndrome is just something made up. Unfortunately, I now know how evil Fibro can be.
I named this blog The Fibro Frog for 2 reasons...one was a play on words for the horrible Fibro Fog I suffer from almost daily. The second reason is because I've always loved the acronym frog...fully rely on God. I've been doing a lot of that lately. Daily, as a matter of fact. I've also decided to stay on with Dr. Gota at the Cleveland Clinic. I mean, the CC is rated as the 4th best hospital in the U.S. so if I'm within a 2hr drive of there, I'm treated like a human being there, my pain and symptoms are real to them, why in the world should I drive 45 minutes to a guy I can't stand?
I hope I get a lot of followers on this blog that will comment and contribute. Maybe we can build a network of support for each other, and share secrets of what works for us. Granted, no two people with fibro or even arthritis will suffer the same symptoms all the time. Not everything that works for one person will necessarily work for another, but maybe (hopefully) we can all work together to help one another. At the very least, we can spread the word about how real Fibromyalgia is, and bring awareness to this evil thing.
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