I'm not someone you'd consider to be overly religious. I've set foot in a church maybe 4-5 times in my 27 years. Once for a wedding, once for a funeral, once on a school excursion...and the other 2 times, well let's not go there. I haven't read the Bible, in fact I don't think I've ever even owned one.
But you know what? I'm a Christian. I always have been. I was bought up by my mum - a Christian and my dad, an atheist, who when I was young encouraged me to be a Christian and to have Faith no matter what, even though he didn't. I remember praying every night before bed with my dad. His faith was broken long ago, he says he'll never get it back. He is glad I believe in God though and I know he believes in something. I'm just not sure what.
After my diagnosis of FM, I was so angry. Angry isn't the right word for it, in fact 'furious' doesn't describe how I felt either. For months after my diagnosis, I went looking for answers. I searched and searched and searched. I tried hundreds of dollars worth of vitamins, new medications, exercises, therapy etc. I don't know how many hours I spent researching everything I could find out about FM and CFS. As you can see, every post in this journal has an aggressive undertone to it. Anger towards doctors, scientists, the media, people who confuse M.E. with CFS...anger towards myself, my friends, my family, my God.
I wish I could pin point the moment when I stopped feeling angry. The moment where the penny dropped. The moment when I realised that my anger was only fueling this disease - not fighting it. The moment that I realised the reason why I was so fearful, so frightened of everything was because I was constantly angry. Constantly seething. Constantly bottling up my anger with nowhere to let it out - except at myself, mentally. The anger went, and then so did the fear.
The fear left me the weekend we moved house. Anyone with FM will know how physically and mentally draining it is to move house. Anyone who's perfectly healthy knows what a massive thing it is to move house...but for someone with FM or CFS (or both), it's a marathon. The weekend we moved house was the first time I'd ever left my son with anyone (my parents). The thought of leaving him with my folks for the day plagued me for weeks. I knew my parents would take great care of him and that he'd enjoy being with his grandparents...however I'd never been away from him for even 30 minutes before that. The few days before we moved were filled with panic and dread - I was so consumed with this fear that I wouldn't be there to protect my son for one day that I hadn't even thought about moving.
The big day came. For some reason, that morning, I felt great. It's like all the fear and negativity had just left me overnight. My husband and I dropped my son off at my parents house...this was the moment I'd shed countless tears over and had many panic attacks at the thought of. We kissed him goodbye, hugged him and waved goodbye. No anxiety was in the pit of my stomach, no panic attack, no tears...nothing. My son's smile once he saw his grandparents instantly put my mind at ease. His smile at me when we left did too.
That day we moved house - unpacking, sorting, shifting, assembling, all the usual stuff moving entails. We picked our son up and I don't think I let go of him for a good hour or so. The next day, we spent 9 hours cleaning our old home. I remember the first week in our new home very well. The first 3 nights I could barely move. I was in so much pain that even rolling over in bed was almost impossible. Bending over or reaching for anything was agony. I then realised that this is how everyone feels after they've moved house. I had just gotten through something extremely physical and stressful, and apart from the pain, I felt amazing. For the first time in months, I felt proud. I felt hopeful. I felt like this was a new beginning, and it was.
I looked around our new home. I looked at the bath tub - something that hadn't been in any home I'd rented in 6 years. I looked at the dining room, something else that hadn't been present in any home I'd rented since living with my parents. I looked at all the space, the high ceilings, all the other luxuries that I'd forgotten had even existed. I still look out at the beautiful backyard every morning, which is so very different to the small concrete courtyards I am used to. I had room to breathe here, room to move and more importantly, so did my son. We love it here.
I still have chest pains. I still ache from head to toe some days. I still have times where I don't sleep for days...and when I do, it's broken. I still have days where I am so tired that I forget the most simple things. The difference is though that now, it doesn't frighten me. When I go for a walk with my son, if I become breathless, I stop for a minute instead of panicking and reaching for my phone to call my husband or 000. When I wake up in a panic, I let myself panic...usually while rolling my eyes and waiting for it to be over, instead of crying and thinking "this is it, I'm going to die". When I have chest pains, I no longer believe I'm having a fatal heart attack. When the left or right side of my face goes numb or tingles, I no longer jump to the conclusion that I'm having a stroke. Basically, these days, I have Fibromyalgia. Fibromyalgia DOES NOT HAVE ME.
There were nights a few months back where I literally thought I was dying. It felt like every organ was shutting down and I had no strength left. For a good part of this year, I was convinced that my time was coming. I was convinced that FM was, indeed, going to kill me. For anyone who knows what it's like to believe they are dying; they'll know the horror, terror, grief, sadness, hopelessness, despair that one feels. The constant anxiety ruins any sort of pleasure or joy one almost feels. It is not something I would wish on anybody. Particularly a parent. For so long, all I could think about was that my little baby boy would grow up without his mummy. To anyone who has ever felt that way, my heart is with you. To any husband out there who's had to watch his wife suffer what I've lived through, my heart is with you.
I still look around our new home even though we've been here a while now. I look in the mirror these days too. The difference between looking in the mirror 3 months ago and looking in the mirror now is this - I now see me. I don't see my illness/disease/syndrome. I see a woman...a brave, strong, capable and faithful young woman. I see a mother, a wife, a friend, a daughter, a fighter. I see a woman who was blessed with a life, blessed by God. I see a woman who made her peace with God and who still asks God for strength, courage and wisdom. A woman who still thanks God for everything she has, and everything she doesn't. A woman who knows that everything happens for a reason - everything we go through is some kind of lesson - everything we go through are moments that make up our lives. The lives we are meant to be living. The lives given to us by God.
Faith gets me through this illness. This illness gave me back my faith. It just took me a while to realise it. I will still advocate for FM, I will still raise awareness for FM. I will still help others diagnosed with FM and those who haven't been diagnosed yet. The difference is though, that now I will do it with confidence. I will now do it with Faith.
Sunday, October 17, 2010
Saturday, July 31, 2010
Tuesday, July 20, 2010
What's In A Name? A misdiagnosis perhaps?
What's in a name? A lot it would seem.
The more I think about my diagnosis of Fibromyalgia, and the more I think about my other diagnosis of Chronic Fatigue Syndrome, the more I wonder about both diseases. Depending on who you speak to, you'll realise that not all doctors even refer to these conditions as "diseases". Some doctors refer to FM & CFS as syndromes. Some doctors refer to them as mental illnesses rather than neurological conditions, which is completely incorrect. Then you have the doctors who don't refer to them as anything because they unfortunately believe neither FM or CFS exist, apart from in their patient's head.
Doctors did not come up with the name for CFS, just as they didn't come up with the name for Fibromyalgia. The CDC (United States) were responsible for naming these two (and often overlapping) medical conditions. Heresay from a lot of different sources say that CDC employees still often joke about both conditions. They've always joked about CFS being "The Yuppee Flu" however apparently, they call Fibromyalgia "The New Yuppee Flu". As I said, this is just heresay...however when you look at the CDC's research about both conditions, and when you listen to the attitudes of Reeves and other CDC staff members, you do tend to quite easily beleive the rumours about their "Yupee Flu" comments, or jokes rather. I personally can imagine these idiots in their little white coats joking about both FM & CFS while burying and ignoring every piece of scientific data, research and statistics they receive about both conditions, but that's just me.
The CDC renamed Myalgic Encaphalomyelitis (M.E.) in the 1980's after the Lake Tahoe, Nevada outbreak - they called it Chronic Fatigue Syndrome. The people in Nevada unmistakably had (have) M.E. The MRI findings and other medical testing each patient underwent proves this. Unfortunately though, M.E. stuck like glue and has caused mass confusion since. CFS is often referred to as CFS/ME. In other words, both conditions are referred to as the same disease and this is absolutely not the case. The majority of patients diagnosed with CFS/ME are never told to go for an MRI, not before their diagnosis or after it. The reason for this in Australia is because of the restrictions the government has put on diagnostic and medical testing for not only CFS patients, but FM patients as well. That's right, the government have put a limit on what tests CFS/FM patients can and can't have. Very, very disturbing. Anyway, in order to receive an accurate diagnosis of Myalgic Encephalomyelitis, the patient must fit certain diagnositc criteria. This includes distinct lesions on the brain. Therefore, patients with a diagnosis of CFS/ME who have not been sent for an MRI have been misdiagnosed. This is a certainty. I'm sorry, but there is no way around it.
To be diagnosed with CFS/ME - depending on which of the 11 ways you can be diagnosed, a patient simply needs to report feeling fatigued for 6 months or more. This is enough for a lot of doctors to make the diagnosis. In Australia, the diagnostic guidelines for CFS are the same as Canada's. To be diagnosed with FM, a diagnostic test using "Tenderpoints" is given. If a patient reports more than half the 18 tenderpoints to be painful when pressure is applied, they are often diagnosed with FM. They are then told (like CFS) that all their other symptoms (including Depression and Anxiety) are due to their newly diagnosed, incurable disease. This diagnosis often happens when not every other medical condition has been ruled out.
For instance, my GP wanted me to go for an MRI. She was worried, and still is to my knowledge about the possibility of Multiple Sclerosis. When she told me she wanted me to go for an MRI (over a month ago) - I told her I didn't want to as at the time, I was sick and tired of spending all my time between doctors, pathology centres and x-ray places. I needed a break! She was fine with this and said that from then on, she would leave all care regarding my disease up to my specialist. My specialist feels there is no need for an MRI. Even though a diagnosis of FM or CFS should never ever be made until ALL other medical conditions have been ruled out...he doesn't feel the need for an MRI. He doesn't feel the need to send me for one? Or is it more accurately that according to government guidelines, he's not actually meant to send me for one? I personally suspect the latter given the facts at hand.
CFS/ME patients are being told they have M.E. when they don't. Fibromyalgia patients are being told they have Fibromyalgia when in a lot of cases, they don't. These diagnosis's for the most part are being made before other medical conditions are being ruled out. M.E is a potentially fatal disease...if someone with Myalgic Encephalomyelitis does too much, if they put too much strain on their heart by overexertion, they can and do die. M.E. patients are required to wear heart monitors so they can be extremely vigilant and aware of when they need to rest. Making sure you don't do too much when you have M.E is a matter of life and death...it only takes a tiny bit of research and 5 minutes reading to know that. It only takes 5 minutes (or less) worth of reading to know that CFS and M.E are two very different medical conditions. A lot of M.E patients don't even suffer fatigue. Fatigue is NOT even essential to the diagnosis of M.E!!! The CDC have not only caused mass confusion for CFS sufferers by linking the name to M.E but they've done an amazing amount of damage to M.E patients, especially severe M.E. patients who must wear heart monitors and stay close to their oxygen tanks!
I honestly understand why CFS and FM are often referred to as "wastebasket" diagnosis's. Some people refer to them as a diagnosis of "elimination" - I absolutely don't use that definition though simply because the majority of us have not had every other medical condition eliminated before our diagnosis. Any diagnosis of CFS/ME is incorrect - that's a fact. Unless a CFS patient has undergone testing for M.E (a condition which there are numerous medical tests for) and been diagnosed with M.E, then they don't have it. Myalgic Encephalomyelitis MUST be separated from CFS for the benefit of all involved. This won't happen unless the CDC pull their finger out though, which is unlikely to ever happen.
CFS and FM are real...I'm not saying they're not. To those of us who are sick, unable to leave the house or in some cases, bed...to those of us who are reliant on many medications, walking aides, wheelchairs...to those of us who suffer every single symptom of CFS and FM, our medical condition is extremely real. The friends we've lost, careers we've had to give up, ridicule and misunderstanding from those closest to us, and worst of all, the shit we've had to (and still do) put up with from our doctors, CFS and FM are real. Something that's stolen our lives from us has to be real. None of us asked to get sick, none of us choose to stay sick, simple as that. The fact is though we're all suffering from something the medical community DO NOT understand. They say they do, but they clearly don't.
Chronic Fatigue Syndrome and Fibromyalgia: Both named by the CDC. Both are serious diseases with ridiculous names that alter the public's perception of how sick we really are. Any research (including the XMRV link) to do with both are covered up by the CDC. Both diseases have suspicious restrictions on them in relation to diagnostic testing and even treatment. Both are neurological conditions being palmed off as psychiatric conditions. Another widely misunderstood condition (M.E.) was deliberately linked to CFS by the CDC...unfortunately advocacy groups ignore that fact and still use the CFS/ME terminology. Both diseases have diagnostic guidelines which make absolutely no sense. Both diseases DO cause immune dysfunction but this fact is also covered up and flat out denied by the CDC.
Both these diseases just don't make any bloody sense and on top of being sick day in, day out.....we're forced to live with this knowledge. We're forced to live with not only the physical and cognitive symptoms, but the misunderstanding and confusion about these diseases, not just among the general public - but among the medical community as well. No wonder we need to be our own medical advocates, THERE IS NOBODY ELSE.
So, what's in a name? You tell me.
Em
xoxoxo
The more I think about my diagnosis of Fibromyalgia, and the more I think about my other diagnosis of Chronic Fatigue Syndrome, the more I wonder about both diseases. Depending on who you speak to, you'll realise that not all doctors even refer to these conditions as "diseases". Some doctors refer to FM & CFS as syndromes. Some doctors refer to them as mental illnesses rather than neurological conditions, which is completely incorrect. Then you have the doctors who don't refer to them as anything because they unfortunately believe neither FM or CFS exist, apart from in their patient's head.
Doctors did not come up with the name for CFS, just as they didn't come up with the name for Fibromyalgia. The CDC (United States) were responsible for naming these two (and often overlapping) medical conditions. Heresay from a lot of different sources say that CDC employees still often joke about both conditions. They've always joked about CFS being "The Yuppee Flu" however apparently, they call Fibromyalgia "The New Yuppee Flu". As I said, this is just heresay...however when you look at the CDC's research about both conditions, and when you listen to the attitudes of Reeves and other CDC staff members, you do tend to quite easily beleive the rumours about their "Yupee Flu" comments, or jokes rather. I personally can imagine these idiots in their little white coats joking about both FM & CFS while burying and ignoring every piece of scientific data, research and statistics they receive about both conditions, but that's just me.
The CDC renamed Myalgic Encaphalomyelitis (M.E.) in the 1980's after the Lake Tahoe, Nevada outbreak - they called it Chronic Fatigue Syndrome. The people in Nevada unmistakably had (have) M.E. The MRI findings and other medical testing each patient underwent proves this. Unfortunately though, M.E. stuck like glue and has caused mass confusion since. CFS is often referred to as CFS/ME. In other words, both conditions are referred to as the same disease and this is absolutely not the case. The majority of patients diagnosed with CFS/ME are never told to go for an MRI, not before their diagnosis or after it. The reason for this in Australia is because of the restrictions the government has put on diagnostic and medical testing for not only CFS patients, but FM patients as well. That's right, the government have put a limit on what tests CFS/FM patients can and can't have. Very, very disturbing. Anyway, in order to receive an accurate diagnosis of Myalgic Encephalomyelitis, the patient must fit certain diagnositc criteria. This includes distinct lesions on the brain. Therefore, patients with a diagnosis of CFS/ME who have not been sent for an MRI have been misdiagnosed. This is a certainty. I'm sorry, but there is no way around it.
To be diagnosed with CFS/ME - depending on which of the 11 ways you can be diagnosed, a patient simply needs to report feeling fatigued for 6 months or more. This is enough for a lot of doctors to make the diagnosis. In Australia, the diagnostic guidelines for CFS are the same as Canada's. To be diagnosed with FM, a diagnostic test using "Tenderpoints" is given. If a patient reports more than half the 18 tenderpoints to be painful when pressure is applied, they are often diagnosed with FM. They are then told (like CFS) that all their other symptoms (including Depression and Anxiety) are due to their newly diagnosed, incurable disease. This diagnosis often happens when not every other medical condition has been ruled out.
For instance, my GP wanted me to go for an MRI. She was worried, and still is to my knowledge about the possibility of Multiple Sclerosis. When she told me she wanted me to go for an MRI (over a month ago) - I told her I didn't want to as at the time, I was sick and tired of spending all my time between doctors, pathology centres and x-ray places. I needed a break! She was fine with this and said that from then on, she would leave all care regarding my disease up to my specialist. My specialist feels there is no need for an MRI. Even though a diagnosis of FM or CFS should never ever be made until ALL other medical conditions have been ruled out...he doesn't feel the need for an MRI. He doesn't feel the need to send me for one? Or is it more accurately that according to government guidelines, he's not actually meant to send me for one? I personally suspect the latter given the facts at hand.
CFS/ME patients are being told they have M.E. when they don't. Fibromyalgia patients are being told they have Fibromyalgia when in a lot of cases, they don't. These diagnosis's for the most part are being made before other medical conditions are being ruled out. M.E is a potentially fatal disease...if someone with Myalgic Encephalomyelitis does too much, if they put too much strain on their heart by overexertion, they can and do die. M.E. patients are required to wear heart monitors so they can be extremely vigilant and aware of when they need to rest. Making sure you don't do too much when you have M.E is a matter of life and death...it only takes a tiny bit of research and 5 minutes reading to know that. It only takes 5 minutes (or less) worth of reading to know that CFS and M.E are two very different medical conditions. A lot of M.E patients don't even suffer fatigue. Fatigue is NOT even essential to the diagnosis of M.E!!! The CDC have not only caused mass confusion for CFS sufferers by linking the name to M.E but they've done an amazing amount of damage to M.E patients, especially severe M.E. patients who must wear heart monitors and stay close to their oxygen tanks!
I honestly understand why CFS and FM are often referred to as "wastebasket" diagnosis's. Some people refer to them as a diagnosis of "elimination" - I absolutely don't use that definition though simply because the majority of us have not had every other medical condition eliminated before our diagnosis. Any diagnosis of CFS/ME is incorrect - that's a fact. Unless a CFS patient has undergone testing for M.E (a condition which there are numerous medical tests for) and been diagnosed with M.E, then they don't have it. Myalgic Encephalomyelitis MUST be separated from CFS for the benefit of all involved. This won't happen unless the CDC pull their finger out though, which is unlikely to ever happen.
CFS and FM are real...I'm not saying they're not. To those of us who are sick, unable to leave the house or in some cases, bed...to those of us who are reliant on many medications, walking aides, wheelchairs...to those of us who suffer every single symptom of CFS and FM, our medical condition is extremely real. The friends we've lost, careers we've had to give up, ridicule and misunderstanding from those closest to us, and worst of all, the shit we've had to (and still do) put up with from our doctors, CFS and FM are real. Something that's stolen our lives from us has to be real. None of us asked to get sick, none of us choose to stay sick, simple as that. The fact is though we're all suffering from something the medical community DO NOT understand. They say they do, but they clearly don't.
Chronic Fatigue Syndrome and Fibromyalgia: Both named by the CDC. Both are serious diseases with ridiculous names that alter the public's perception of how sick we really are. Any research (including the XMRV link) to do with both are covered up by the CDC. Both diseases have suspicious restrictions on them in relation to diagnostic testing and even treatment. Both are neurological conditions being palmed off as psychiatric conditions. Another widely misunderstood condition (M.E.) was deliberately linked to CFS by the CDC...unfortunately advocacy groups ignore that fact and still use the CFS/ME terminology. Both diseases have diagnostic guidelines which make absolutely no sense. Both diseases DO cause immune dysfunction but this fact is also covered up and flat out denied by the CDC.
Both these diseases just don't make any bloody sense and on top of being sick day in, day out.....we're forced to live with this knowledge. We're forced to live with not only the physical and cognitive symptoms, but the misunderstanding and confusion about these diseases, not just among the general public - but among the medical community as well. No wonder we need to be our own medical advocates, THERE IS NOBODY ELSE.
So, what's in a name? You tell me.
Em
xoxoxo
Thursday, July 15, 2010
Friday, July 9, 2010
XMRV ... Start Listening, World.
This post will contain offensive language, so if four letter words offend you my advice would be to stop reading now. Usually I try to keep the "bad" language to a minimum in this blog however if I tried to keep swear words out of this post I'd be being dishonest with myself. I do tend to swear a bit when I'm angry.
Right now, along with countless other sick people around the world, I'm angry.
XMRV, for those who don't know, is a retrovirus. There are only two other human retroviruses. The first being HTLV (the Human T-lymphotropic virus which causes T-cell Leukemia and Lymphoma), the second being HIV which was discovered in AIDS patients in the1980's and the third being XMRV which was only recently discovered in 2006. XMRV stands for Xenotropic murine leukemia related virus. It is similar to both HIV & HTLV.
In 2009, researchers at the Whittemore Peterson Institute found a significant link between CFS/ME and the XMRV retrovirus. Now, I'm not saying every person with Fibromyalgia has CFS/ME - but according to my doctor, most (if not all) of us do. Some doctors see all three conditions as the same disease but hey that's a whole other post LOL. In over 95% of ME patients tested for XMRV, the result came up positive. Every single XMRV test they did for Fibro patients came up positive. Other researchers from other institutes have confirmed these findings. The CDC stopped (and still stop) this information from making it into the papers, instead the CDC release their own bogus reports which basically imply that XMRV does not exist.
The CDC deny these results. They used their own testing methods in patients with CFS/ME and 100% of the tests for XMRV came back negative. They've repeated these tests a few times...and they keep coming up negative. Why? Because they're DOING IT WRONG. They haven't tested using the same methods as the WPI and refuse to do so. The CDC are basically denying the link between XMRV and chronic diseases. They're saying the link doesn't exist. Not only did the CDC use blinded testing methods, they used a completely different patient group!! A TEST IS ONLY AS ACCURATE AS THE INTEGRITY OF THE SPECIMEN! To add insult to injury (pardon the pun) - the CDC released this statement not so long ago:
The above bullshit statement was released shortly after another press release stated that CFS/ME/FM patients had a significant decline in immune dysfunction. Can anyone smell a fucking cover up here???!! Almost all of us with FM/ME/CFS have either auto-immune or dysfunctioning immune systems. All of our specialists and doctors would disagree with the above statement just as we do. The difference is that to us (the people who suffer), the above statement is just adding to the ignorance among the public! It's just making it harder for us to get the awareness out there because what the CDC are basically saying is what they've always said..."CFS/ME isn't a real illness".
At the same time as the AIDS epidemic hit, CFS/ME hit. Back then everyone was calling it "Yuppie Flu" - just like today, people were getting sick and they just weren't recovering. Obviously it was spreading then as it's spreading NOW. The outbreak of this "flu" started in Nevada. Many, many doctors pleaded with the CDC to investigate why so many people were falling seriously ill...but the CDC did not do anything. They're still not doing anything over 20 years later. They covered it up then just like they're covering it up now. ME stands for Myalgic Encephalomyelitis. In the 80's, the CDC changed the name to Chronic Fatigue Syndrome. A lot of people believe (as I believe) that they changed the name to alter the public's perception of the disease.
Our life expectancies are 20 years shorter than our healthy friends and our healthy family members. Some of us have parents who will outlive us. Some of us won't be around to meet our grandchildren. As most of you know, I've only been sick with this for 4 and a half months...but I know people who've been sick with this for close to 40 years. A good friend of mine has been suffering for close to 20 years. The clock is ticking, luckily for all of us, the ticking is getting louder. SO LOUD that the CDC may just start hearing it. The XMRV virus (and CFS/ME/FM) are not airbourne...you won't catch it from breathing the same air we do. However the XMRV virus can be spread through sexual contact, blood and breastfeeding.
So.....to all of us women with healthy husbands/partners and children, well shit. Thanks for letting us know about those risks, CDC (note the sarcasm). In Australia and Canada, patients with CFS/ME/FM are no longer allowed to donate blood. Why? Because of the XMRV risk of course. See, it's not only the patients taking it seriously, it's the people in charge of our country's fucking blood supply! Are you beginning to see how crooked the CDC are now yet or what?
The similarities between AIDS and CFS/ME/FM are scary. There's no other word for it. From immune dysfunction to similar infections to the cognitive difficulties. The CDC would and do deny this...they continue to either mock or ignore every single piece of research published stating that CFS/ME have any immunological involvement. They've been good at bullshitting since the 80's and they're still doing it now, only now with all the new evidence and louder public outcries, their bullshit is becoming more and more apparent. I'd like to say it's laughable but it's not.
These retroviruses cause cancer, infections, neurological diseases and of course, immune disorders. All three retroviruses are permanent. Just as our diseases are permanent.
The more evidence found about the link between XMRV and our disease, the more it's looking like the cause of the diseases we suffer. That is simply undeniable. The CDC need to wake up and do the right thing here. People are dying every single day, and I'm not just talking about the people who commit suicide because they can't bear their illness anymore. I'm also talking about the people who "suddenly" stop breathing, who "suddenly" suffer a major heart attack, who "suddenly" have a stroke. These deaths ARE due to the person's illness but they are never documented that way which does an indescribable amount of harm and misjustice to the victim's family. It's so fucking wrong on so many levels and this cover up by the CDC is the reason why.
Now...if you're going to call me paranoid, then call almost every CFS/ME/FM patient paranoid. Call our doctor's who can't do a damn thing about this paranoid too. Call the widows and families caring for their sick loved one paranoid too. Actually wait, if you're going to call me paranoid, you must work for the CDC. Centre For Disease Control? - Now that is laughable. The only thing you lying bastards control is covering your own asses.
These diseases can be fatal. These diseases ruin lives, marriages, families. These diseases are so misunderstood, under-reported and ignored by the media that our own families don't even know how seriously ill we are. The general public have no idea...until they get sick. If the XMRV retrovirus is the cause as to why we got sick (which research suggests it is), and if that were to be made known to the world - then we will be able to access better treatment. Better medicines. Better health care. A better outlook - a better understanding of why we're so damn ill. A much better mental state due to all of the above.
So my question to the CDC is this: Who the fuck are you to deny us that?
On that note, I'll leave it.
Em
xoxo
Right now, along with countless other sick people around the world, I'm angry.
XMRV, for those who don't know, is a retrovirus. There are only two other human retroviruses. The first being HTLV (the Human T-lymphotropic virus which causes T-cell Leukemia and Lymphoma), the second being HIV which was discovered in AIDS patients in the1980's and the third being XMRV which was only recently discovered in 2006. XMRV stands for Xenotropic murine leukemia related virus. It is similar to both HIV & HTLV.
In 2009, researchers at the Whittemore Peterson Institute found a significant link between CFS/ME and the XMRV retrovirus. Now, I'm not saying every person with Fibromyalgia has CFS/ME - but according to my doctor, most (if not all) of us do. Some doctors see all three conditions as the same disease but hey that's a whole other post LOL. In over 95% of ME patients tested for XMRV, the result came up positive. Every single XMRV test they did for Fibro patients came up positive. Other researchers from other institutes have confirmed these findings. The CDC stopped (and still stop) this information from making it into the papers, instead the CDC release their own bogus reports which basically imply that XMRV does not exist.
The CDC deny these results. They used their own testing methods in patients with CFS/ME and 100% of the tests for XMRV came back negative. They've repeated these tests a few times...and they keep coming up negative. Why? Because they're DOING IT WRONG. They haven't tested using the same methods as the WPI and refuse to do so. The CDC are basically denying the link between XMRV and chronic diseases. They're saying the link doesn't exist. Not only did the CDC use blinded testing methods, they used a completely different patient group!! A TEST IS ONLY AS ACCURATE AS THE INTEGRITY OF THE SPECIMEN! To add insult to injury (pardon the pun) - the CDC released this statement not so long ago:
"One thing is certain at this juncture: there are no immune disorders in CFS patients".
The above bullshit statement was released shortly after another press release stated that CFS/ME/FM patients had a significant decline in immune dysfunction. Can anyone smell a fucking cover up here???!! Almost all of us with FM/ME/CFS have either auto-immune or dysfunctioning immune systems. All of our specialists and doctors would disagree with the above statement just as we do. The difference is that to us (the people who suffer), the above statement is just adding to the ignorance among the public! It's just making it harder for us to get the awareness out there because what the CDC are basically saying is what they've always said..."CFS/ME isn't a real illness".
At the same time as the AIDS epidemic hit, CFS/ME hit. Back then everyone was calling it "Yuppie Flu" - just like today, people were getting sick and they just weren't recovering. Obviously it was spreading then as it's spreading NOW. The outbreak of this "flu" started in Nevada. Many, many doctors pleaded with the CDC to investigate why so many people were falling seriously ill...but the CDC did not do anything. They're still not doing anything over 20 years later. They covered it up then just like they're covering it up now. ME stands for Myalgic Encephalomyelitis. In the 80's, the CDC changed the name to Chronic Fatigue Syndrome. A lot of people believe (as I believe) that they changed the name to alter the public's perception of the disease.
Our life expectancies are 20 years shorter than our healthy friends and our healthy family members. Some of us have parents who will outlive us. Some of us won't be around to meet our grandchildren. As most of you know, I've only been sick with this for 4 and a half months...but I know people who've been sick with this for close to 40 years. A good friend of mine has been suffering for close to 20 years. The clock is ticking, luckily for all of us, the ticking is getting louder. SO LOUD that the CDC may just start hearing it. The XMRV virus (and CFS/ME/FM) are not airbourne...you won't catch it from breathing the same air we do. However the XMRV virus can be spread through sexual contact, blood and breastfeeding.
So.....to all of us women with healthy husbands/partners and children, well shit. Thanks for letting us know about those risks, CDC (note the sarcasm). In Australia and Canada, patients with CFS/ME/FM are no longer allowed to donate blood. Why? Because of the XMRV risk of course. See, it's not only the patients taking it seriously, it's the people in charge of our country's fucking blood supply! Are you beginning to see how crooked the CDC are now yet or what?
The similarities between AIDS and CFS/ME/FM are scary. There's no other word for it. From immune dysfunction to similar infections to the cognitive difficulties. The CDC would and do deny this...they continue to either mock or ignore every single piece of research published stating that CFS/ME have any immunological involvement. They've been good at bullshitting since the 80's and they're still doing it now, only now with all the new evidence and louder public outcries, their bullshit is becoming more and more apparent. I'd like to say it's laughable but it's not.
These retroviruses cause cancer, infections, neurological diseases and of course, immune disorders. All three retroviruses are permanent. Just as our diseases are permanent.
The more evidence found about the link between XMRV and our disease, the more it's looking like the cause of the diseases we suffer. That is simply undeniable. The CDC need to wake up and do the right thing here. People are dying every single day, and I'm not just talking about the people who commit suicide because they can't bear their illness anymore. I'm also talking about the people who "suddenly" stop breathing, who "suddenly" suffer a major heart attack, who "suddenly" have a stroke. These deaths ARE due to the person's illness but they are never documented that way which does an indescribable amount of harm and misjustice to the victim's family. It's so fucking wrong on so many levels and this cover up by the CDC is the reason why.
Now...if you're going to call me paranoid, then call almost every CFS/ME/FM patient paranoid. Call our doctor's who can't do a damn thing about this paranoid too. Call the widows and families caring for their sick loved one paranoid too. Actually wait, if you're going to call me paranoid, you must work for the CDC. Centre For Disease Control? - Now that is laughable. The only thing you lying bastards control is covering your own asses.
These diseases can be fatal. These diseases ruin lives, marriages, families. These diseases are so misunderstood, under-reported and ignored by the media that our own families don't even know how seriously ill we are. The general public have no idea...until they get sick. If the XMRV retrovirus is the cause as to why we got sick (which research suggests it is), and if that were to be made known to the world - then we will be able to access better treatment. Better medicines. Better health care. A better outlook - a better understanding of why we're so damn ill. A much better mental state due to all of the above.
So my question to the CDC is this: Who the fuck are you to deny us that?
On that note, I'll leave it.
Em
xoxo
Tuesday, July 6, 2010
LDN & Fibromyalgia...what? how? if? when?
I recently watched a lecture given by Dr Sean Mackey from the Stanford University Medical Centre on Youtube. The lecture is called 'An Update On Fibromyalgia' and covered what Fibromyalgia is, it's possible causes and the treatments available for the condition. This post will focus on one treatment - LDN - Low Dose Naltrexone.
LDN is not a common treatment for Fibromyalgia. In Australia (where I live), LDN is almost unheard of. I will ask my specialist about it when I see him next, however I am prepared to be told it's not available here. While Naltrexone is a common drug here for people with alcohol and drug problems, it's not seen as a treatment for Fibro. LDN is an opiod blocker when given in doses of 50mg, which is the usual amount given to patients fighting addiction. Low Dose Naltrexone is 4.5mg, which is more than 10 times less than the 50mg dose given to patients fighting addiction.
Many, many people have found LDN to be a successful treatment. Not just for Fibromyalgia, but for M.E, CFS, Lupus and MS. Patients have reported their symptoms have either vanished, eased or improved significantly. A lot of patients given LDN have claimed to have gained their lives back. So why is LDN not a standard treatment for these conditions? - well, from what I've read and heard, the reason seems simple. The reason it's not a standard treatment is because the drug companies wouldn't profit. Naltrexone in low doses is very cheap, dirt cheap in fact, therefore if it was to become a "standard" treatment, the big medicine companies would lose out.
These findings are based on research carried out at the Stanford Univeristy Medical Centre : Using LDN has an impact on Glial cells. Microglial cells are immune sipport cells, they prop up our nervous system. These cells are heavily active during infection and when cells are damaged.
Microglial cells are usually in a resting state while passively searching for "problems" (or bugs).
When these cells are activated, microglial cells pull in their "branches" and become mobile. They then attack where the problem (infection/bug) is, which produces a number of factors in the brain and spinal cord that increases pain sensivity and feelings of being unwell.
In Fibromyalgia patients, it was found that these glial cells were not returning to their normal "resting" state. They continued to stay in a role so that illness continues. The cells were basically stuck in their "on" position...which is the reason why the pain and illness don't just stop or go away.
As I've said above, the usual dose of Naltrexone (50mg) stops Narcotics working. The usual dose of Naltrexone can have some mild side effects.
When used in low doses (4.5mg), Naltrexone blocks the Microglia (Glial cells) receptors without affecting the opiod receptors on neurons. Studies found that >50% reduction in pain for Fibro patients who used LDN. 7 out of 10 patients responded well and reported nil side effects. Within 7 days, their sleep significantly improved. When they ceased using LDN, they became sick again.
Compared to other treatments for Fibromyalgia, LDN seems to be not only the safest and the most promising, but it also seems to be the cheapest. Accupuncture has been found to improve symptoms in some Fibro patients, however it's very expensive. NSAID's have been found to generally have no effect whatsover but are still regulardly handed out to Fibro patients (I can honestly say they did nothing for me). Lyrica (or Pregabalin) has improved the lives of SOME patients, however the side effects can be an utter nightmare. Some Fibro patients have tried low level lasers however not enough research has been done about the effects. Hydrogen Peroxide has been a debated treatment for Fibro (among other conditions) but seems to carry dangerous risks and huge costs.
Guaifenson seems to be a popular treatment for Fibro. Guaifenson is the active ingredient in a lot of cough medicines and blocks the MNDA receptors. There is evidence that when used in low doses, it may work on Glial cells. The usual (large) dose of it can have significant side effects, mainly being sedation. Lower doses may have some, little or no side effects but there isn't enough research available to show any real numbers. In fact when it comes to this treatment in general, there just doesn't seem to be enough research to really say whether it will help patients with Fibromyalgia or not.
Obviously there are other treatments for Fibromyalgia. As well as our prescription medications, a lot of us take vitamins and supplements to try and improve our condition...we all take different things, we all do different things but we all have one thing in common, we're ALL trying to figure out what will work for us. Unfortunately, most of us keep hitting a brick wall. This isn't only disapointing for us, it's expensive!
Given the research done, given the fact that LDN has proven to be an extremely safe and generic drug, given the fact that it's cheap, given the fact that countless Fibro patients have said their lives have improved because of this drug...it is time it became available to us!! It is time we're at least given the chance to try this medication. Nobody is saying it's a cure...but it's worth a try in my opinion. I'm hoping my specialist will be able to shed some light on when...or if...LDN will become available in this country, I am looking forward to hearing his opinion about it.
To learn more about Low Dose Naltrexone for the treatment of FM/CFS/M.E and other conditions, simply type LDN into Google. To watch the video 'An Update On Fibromyalgia' or see more medical studies/reports from Dr Sean Mackey, please go to http://www.healthlibrary.stanford.edu .
Hope you're all having a peaceful day :)
Em
xoxoxo
LDN is not a common treatment for Fibromyalgia. In Australia (where I live), LDN is almost unheard of. I will ask my specialist about it when I see him next, however I am prepared to be told it's not available here. While Naltrexone is a common drug here for people with alcohol and drug problems, it's not seen as a treatment for Fibro. LDN is an opiod blocker when given in doses of 50mg, which is the usual amount given to patients fighting addiction. Low Dose Naltrexone is 4.5mg, which is more than 10 times less than the 50mg dose given to patients fighting addiction.
Many, many people have found LDN to be a successful treatment. Not just for Fibromyalgia, but for M.E, CFS, Lupus and MS. Patients have reported their symptoms have either vanished, eased or improved significantly. A lot of patients given LDN have claimed to have gained their lives back. So why is LDN not a standard treatment for these conditions? - well, from what I've read and heard, the reason seems simple. The reason it's not a standard treatment is because the drug companies wouldn't profit. Naltrexone in low doses is very cheap, dirt cheap in fact, therefore if it was to become a "standard" treatment, the big medicine companies would lose out.
These findings are based on research carried out at the Stanford Univeristy Medical Centre : Using LDN has an impact on Glial cells. Microglial cells are immune sipport cells, they prop up our nervous system. These cells are heavily active during infection and when cells are damaged.
Microglial cells are usually in a resting state while passively searching for "problems" (or bugs).
When these cells are activated, microglial cells pull in their "branches" and become mobile. They then attack where the problem (infection/bug) is, which produces a number of factors in the brain and spinal cord that increases pain sensivity and feelings of being unwell.
In Fibromyalgia patients, it was found that these glial cells were not returning to their normal "resting" state. They continued to stay in a role so that illness continues. The cells were basically stuck in their "on" position...which is the reason why the pain and illness don't just stop or go away.
As I've said above, the usual dose of Naltrexone (50mg) stops Narcotics working. The usual dose of Naltrexone can have some mild side effects.
When used in low doses (4.5mg), Naltrexone blocks the Microglia (Glial cells) receptors without affecting the opiod receptors on neurons. Studies found that >50% reduction in pain for Fibro patients who used LDN. 7 out of 10 patients responded well and reported nil side effects. Within 7 days, their sleep significantly improved. When they ceased using LDN, they became sick again.
Compared to other treatments for Fibromyalgia, LDN seems to be not only the safest and the most promising, but it also seems to be the cheapest. Accupuncture has been found to improve symptoms in some Fibro patients, however it's very expensive. NSAID's have been found to generally have no effect whatsover but are still regulardly handed out to Fibro patients (I can honestly say they did nothing for me). Lyrica (or Pregabalin) has improved the lives of SOME patients, however the side effects can be an utter nightmare. Some Fibro patients have tried low level lasers however not enough research has been done about the effects. Hydrogen Peroxide has been a debated treatment for Fibro (among other conditions) but seems to carry dangerous risks and huge costs.
Guaifenson seems to be a popular treatment for Fibro. Guaifenson is the active ingredient in a lot of cough medicines and blocks the MNDA receptors. There is evidence that when used in low doses, it may work on Glial cells. The usual (large) dose of it can have significant side effects, mainly being sedation. Lower doses may have some, little or no side effects but there isn't enough research available to show any real numbers. In fact when it comes to this treatment in general, there just doesn't seem to be enough research to really say whether it will help patients with Fibromyalgia or not.
Obviously there are other treatments for Fibromyalgia. As well as our prescription medications, a lot of us take vitamins and supplements to try and improve our condition...we all take different things, we all do different things but we all have one thing in common, we're ALL trying to figure out what will work for us. Unfortunately, most of us keep hitting a brick wall. This isn't only disapointing for us, it's expensive!
Given the research done, given the fact that LDN has proven to be an extremely safe and generic drug, given the fact that it's cheap, given the fact that countless Fibro patients have said their lives have improved because of this drug...it is time it became available to us!! It is time we're at least given the chance to try this medication. Nobody is saying it's a cure...but it's worth a try in my opinion. I'm hoping my specialist will be able to shed some light on when...or if...LDN will become available in this country, I am looking forward to hearing his opinion about it.
To learn more about Low Dose Naltrexone for the treatment of FM/CFS/M.E and other conditions, simply type LDN into Google. To watch the video 'An Update On Fibromyalgia' or see more medical studies/reports from Dr Sean Mackey, please go to http://www.healthlibrary.stanford.edu .
Hope you're all having a peaceful day :)
Em
xoxoxo
Saturday, July 3, 2010
My Disease is hard on YOU?! OK..here's how it is for me..
Chronic, unrelenting pain that radiates from one place to the next. Constant fatigue no matter how much or little sleep you get. Debilitating anxiety that won't or rarely lets up. Hyperventilating upon waking. Panic attacks. Tremors. Pins and needles. Breathing difficulties. Nightmares. Hearing problems. Vision problems. Eye twitching. Muscle weakness. Insomnia. Hair loss. Difficulty swallowing. Loss of appetite. Depression. Stomach cramps. Nausea and sometimes vomiting. Sore throat & sinus problems. Severe sensitivity to noise and light. Vertigo & dizziness. Memory loss.
That's how almost everyday is for me. By the time I've taken 12 of my 32 daily pills (and counting) in the morning, I'm ready for bed again.
No cure. No standard treatment. No awareness. No research when compared to other debilitating and incurable diseases. How the hell do you think that makes Fibro patients feel? We all do our very best. We do what we're capable of and most of all we try endlessly to hold on to HOPE. Hope that one day, we'll see a cure. Hope that this condition is NOT genetic so that our children never have to suffer the way we do.
I'm sorry if my disease is an inconvenience for you...oh wait no I'm not :) Believe me, it's harder on me then it is on you. This disease has stolen my life away from me at the age of 27, four months after giving birth to my baby boy. I'm sorry if it seems like I don't care about your problems right now...I do care, I'm just busy fighting my own battles and coming to grips with my new "life".
If I can't make a function, if I can't "do coffee", if I can't have visitors over, if I can't take your phone call, if it takes me a while to respond to a text or email, if I cancel at the last minute, if I say "no" to seeing you for what seems like the 100th time...please know that it has ABSOLUTELY NOTHING TO DO WITH YOU.
It's not me saying "no". It's the pain....or anxiety....or fatigue....or my complete lack of ability to put a sentence together that's saying "no". I don't want to be alone, but sometimes it's necessary.
You miss the old me? Well guess what, I miss her more. I lost her and I'd do anything to get her back.
This is how it is. I simply can't deal, nor will I deal with any pressure - any emotional blackmail or manipulation or any guilt trips from ANYBODY. If I'm not up to doing something, whether it's been planned or not - then it isn't going to happen. If you understood this disease, then you'd understand THAT.
Stress makes Fibromyalgia worse, so this is a warning: If you stress me out because you're too ignorant or too selfish to realise just how seriously ill I am, then feel free to get the hell out of my life.
I'm living on an hour to hour basis right now. Taking one hour at a time. I could be fine this morning, but a cripple by lunchtime. I could come good again in the afternoon, but then barely able to see/hear/do anything by that night.
You're fighting your own battles, I realise that and I do care. But I'm fighting a wheelchair. I'm fighting going to hospital for a very long time. I'm fighting the fact that no treatments, medications or therapy seems to be helping.
I'm fighting for me. I'm fighting for my little boy. I'm fighting for my husband. It takes ALL my energy to give these men the best of me, they deserve the best of me, they NEED the best of me and they get it. This leaves me little or no energy for anybody else though and that's why I pace myself.
Pacing myself means: (example) Seeing a friend on Monday. Tuesday and Wednesday will be spent recovering. I may be up to seeing another friend on Thursday or Friday, but probably not. The next week I'll see another friend on a week day, then spend the next day recovering. Weekends are spent getting as much rest as I can (husband is home weekends) so I can face the week ahead. If I'm up to it, I will see my family every 2nd or 3rd Sunday due to the fact that they're only 10 minutes down the road.
Grocery shopping requires assistance and means needing rest afterward.
Visiting anyone means needing to lie down as soon as I get home and at least 2 days recovery.
Being in the car for longer than 15 minutes requires strong pain relief and muscle relaxants.
Standing for more than 10 minutes can't, and won't happen.
Parties are no longer a possibility due to sensory overload (as are crowded or noisy places).
Any visitors who come over need to realise they can't be here too long (my besties understand this♥).
For now, going out alone just simply isn't a possibility.
For now, long conversations aren't a possibility.
I'm scared. I'm sad. I miss Emily - I'm still in the process of grieving her loss. Yes, I'm still "me" - but in my mind I'm a young 27, carefree, happy and strong, independent woman. In reality, I'm not. I'm reliant on my husband and my doctors. I'm a 27 year old living in an 80 year old's body. Trapped. This bereavement is very real and I've been told by medical professionals that it may take years before I'm "through" the grieving process.
I smile though...and by God do I laugh. My son lights up every single day, even the bad ones. My husband mends my broken heart and is the reason I'm not a complete cold shadow of my former self. These two boys keep me sane, they keep me going. They're my reason to live. They are my light.
If you've read this - as in really read it and not skimmed over it - then maybe you "get it" now. Maybe the next time I can't make some damn commitment, you'll have some compassion instead of contempt.
To all my Fibro Friends - wherever you are - Thank you for giving me the courage to stand up for myself. Thank you for inspiring me to ALLOW myself to feel the way I feel. I love you all.
Em
xoxoxo
That's how almost everyday is for me. By the time I've taken 12 of my 32 daily pills (and counting) in the morning, I'm ready for bed again.
No cure. No standard treatment. No awareness. No research when compared to other debilitating and incurable diseases. How the hell do you think that makes Fibro patients feel? We all do our very best. We do what we're capable of and most of all we try endlessly to hold on to HOPE. Hope that one day, we'll see a cure. Hope that this condition is NOT genetic so that our children never have to suffer the way we do.
I'm sorry if my disease is an inconvenience for you...oh wait no I'm not :) Believe me, it's harder on me then it is on you. This disease has stolen my life away from me at the age of 27, four months after giving birth to my baby boy. I'm sorry if it seems like I don't care about your problems right now...I do care, I'm just busy fighting my own battles and coming to grips with my new "life".
If I can't make a function, if I can't "do coffee", if I can't have visitors over, if I can't take your phone call, if it takes me a while to respond to a text or email, if I cancel at the last minute, if I say "no" to seeing you for what seems like the 100th time...please know that it has ABSOLUTELY NOTHING TO DO WITH YOU.
It's not me saying "no". It's the pain....or anxiety....or fatigue....or my complete lack of ability to put a sentence together that's saying "no". I don't want to be alone, but sometimes it's necessary.
You miss the old me? Well guess what, I miss her more. I lost her and I'd do anything to get her back.
This is how it is. I simply can't deal, nor will I deal with any pressure - any emotional blackmail or manipulation or any guilt trips from ANYBODY. If I'm not up to doing something, whether it's been planned or not - then it isn't going to happen. If you understood this disease, then you'd understand THAT.
Stress makes Fibromyalgia worse, so this is a warning: If you stress me out because you're too ignorant or too selfish to realise just how seriously ill I am, then feel free to get the hell out of my life.
I'm living on an hour to hour basis right now. Taking one hour at a time. I could be fine this morning, but a cripple by lunchtime. I could come good again in the afternoon, but then barely able to see/hear/do anything by that night.
You're fighting your own battles, I realise that and I do care. But I'm fighting a wheelchair. I'm fighting going to hospital for a very long time. I'm fighting the fact that no treatments, medications or therapy seems to be helping.
I'm fighting for me. I'm fighting for my little boy. I'm fighting for my husband. It takes ALL my energy to give these men the best of me, they deserve the best of me, they NEED the best of me and they get it. This leaves me little or no energy for anybody else though and that's why I pace myself.
Pacing myself means: (example) Seeing a friend on Monday. Tuesday and Wednesday will be spent recovering. I may be up to seeing another friend on Thursday or Friday, but probably not. The next week I'll see another friend on a week day, then spend the next day recovering. Weekends are spent getting as much rest as I can (husband is home weekends) so I can face the week ahead. If I'm up to it, I will see my family every 2nd or 3rd Sunday due to the fact that they're only 10 minutes down the road.
Grocery shopping requires assistance and means needing rest afterward.
Visiting anyone means needing to lie down as soon as I get home and at least 2 days recovery.
Being in the car for longer than 15 minutes requires strong pain relief and muscle relaxants.
Standing for more than 10 minutes can't, and won't happen.
Parties are no longer a possibility due to sensory overload (as are crowded or noisy places).
Any visitors who come over need to realise they can't be here too long (my besties understand this♥).
For now, going out alone just simply isn't a possibility.
For now, long conversations aren't a possibility.
I'm scared. I'm sad. I miss Emily - I'm still in the process of grieving her loss. Yes, I'm still "me" - but in my mind I'm a young 27, carefree, happy and strong, independent woman. In reality, I'm not. I'm reliant on my husband and my doctors. I'm a 27 year old living in an 80 year old's body. Trapped. This bereavement is very real and I've been told by medical professionals that it may take years before I'm "through" the grieving process.
I smile though...and by God do I laugh. My son lights up every single day, even the bad ones. My husband mends my broken heart and is the reason I'm not a complete cold shadow of my former self. These two boys keep me sane, they keep me going. They're my reason to live. They are my light.
If you've read this - as in really read it and not skimmed over it - then maybe you "get it" now. Maybe the next time I can't make some damn commitment, you'll have some compassion instead of contempt.
To all my Fibro Friends - wherever you are - Thank you for giving me the courage to stand up for myself. Thank you for inspiring me to ALLOW myself to feel the way I feel. I love you all.
Em
xoxoxo
Wednesday, June 30, 2010
Facebook Support Group & Some Facts For Spouses
http://www.facebook.com/group.php?gid=134015496622401#!/group.php?gid=134015496622401
Fibromyalgia: Fighting For A Cure.
I created this group to raise awareness for this horrible...cruel...overwhelming and exhausting disease. It's a support group for not only FM patients but for their friends, carers and families too.
I honestly believe spouses, close family members, friends and carers are often overlooked. FM is just as tough on the people living with us - whether we live with our husbands, parents, siblings, other relatives or friends.
My husband is amazing, and I am fully aware of how lucky I am to have such a supportive and understanding man in my life as it's vital to the quality of life for every Fibro patient. Unfortunately, so many women (and men) who suffer this disease do not have the sort of understanding, reassurance, patience and love that I do...and this not only saddens me, it makes me quite angry. I wonder if these kind of unsupportive spouses know that the leading cause of death from this condition is SUICIDE.
Now, like most people who suffer FM, I have come to accept the fact that most of the people in my life simply don't understand my disease. At first, I wasn't cool with this...it upset me, it angered me and mostly, it really disappointed me. The lack of interest, empathy, care and support really got to me. I couldn't understand why these people weren't "being there" for me...if someone in my family, say my daughter for instance, came to me and said "Mum, I have a chronic and debilitating disease with no cure and my life will never be the same again"...do you know what I'd do? Firstly, I'd hug her for as long as she'd let me hold her. Secondly, I'd ask her to explain the disease/illness to me if she felt up to it. Thirdly, I'd let her know how much I loved her and offer ANY sort of emotional support I could and lastly, I would research the condition so I could be as informed as possible. Two people in my life reacted the way I would of above...my husband, and my brother.
That's not to say that other people in my life don't care, because they do. I know other people in my family care, they just don't understand. My best friends care, but they don't understand. I'm not allowing myself to be upset about that anymore...my energy (when I have some) is just far too precious to waste on trying to "make" other people understand my condition. However, what I can't and will never be able to grasp is how so many husbands, wives and partners out there simply don't even TRY to understand their loved one's illness. Instead of researching their loved one's condition, they judge them. Label them. Discard and dispute their feelings. I see this far too often and it honestly makes me angry. If your wife, husband or partner came home and told you they'd just been diagnosed with some form of Cancer? would you treat them this way? If he or she came home and told you they'd been diagnosed with Multiple Sclerosis, would you treat them this way? - NO? I'd hope not. I am shocked at how so many FM patients are forced to live with people who have limited to nil compassion for them. It's ridiculous and just goes to prove how much we really do need the awareness to be raised.
Here is an interesting fact for the unsupportive spouses of those with FM. The suffering of FM and CFS is pretty much on par with MS, the suffering both physically and emotionally is real. I can't believe we're in 2010 and we still need to say this. Doctor's simply don't just prescribe the harsh and addictive medications we're on for a "fake" medical condition. They're not allowed to write prescriptions just to shut their patient's up. And here's another thing...from the research I've done, most FM patients go on to be diagnosed with another autoimmune disease in the first few years of diagnosis. As I said in my other post, my doctors are concerned about Lupus. One of them is convinced I have a progressive form of MS. But even if these other illnesses were not a concern, even if it was Fibromyalgia with no other underlying medical conditions (which it is for a lot of people) - the support, care, empathy, patience and compassion is still needed. It's still deserved. It's still vital.
As I said, we're in 2010. It's time for the BS to stop and for the supporting to begin. It wasn't so long ago that medical conditions like MS, Lupus, MENTAL ILLNESS and ADHD were looked at as "fake" illnesses/diseases. FM patients have enough trouble finding doctors who will understand and support them, they shouldn't have to fight to be heard and helped but they do. The last thing they need is to have to fight in order for their own lovers to understand and support them.
What ever happened to "In Sickness And In Health"??? I'm off...I think I'll go and hold my husband and thank God for blessing me with such a real man.
Gentle hugs everyone.
Em
xoxo
Fibromyalgia: Fighting For A Cure.
I created this group to raise awareness for this horrible...cruel...overwhelming and exhausting disease. It's a support group for not only FM patients but for their friends, carers and families too.
I honestly believe spouses, close family members, friends and carers are often overlooked. FM is just as tough on the people living with us - whether we live with our husbands, parents, siblings, other relatives or friends.
My husband is amazing, and I am fully aware of how lucky I am to have such a supportive and understanding man in my life as it's vital to the quality of life for every Fibro patient. Unfortunately, so many women (and men) who suffer this disease do not have the sort of understanding, reassurance, patience and love that I do...and this not only saddens me, it makes me quite angry. I wonder if these kind of unsupportive spouses know that the leading cause of death from this condition is SUICIDE.
Now, like most people who suffer FM, I have come to accept the fact that most of the people in my life simply don't understand my disease. At first, I wasn't cool with this...it upset me, it angered me and mostly, it really disappointed me. The lack of interest, empathy, care and support really got to me. I couldn't understand why these people weren't "being there" for me...if someone in my family, say my daughter for instance, came to me and said "Mum, I have a chronic and debilitating disease with no cure and my life will never be the same again"...do you know what I'd do? Firstly, I'd hug her for as long as she'd let me hold her. Secondly, I'd ask her to explain the disease/illness to me if she felt up to it. Thirdly, I'd let her know how much I loved her and offer ANY sort of emotional support I could and lastly, I would research the condition so I could be as informed as possible. Two people in my life reacted the way I would of above...my husband, and my brother.
That's not to say that other people in my life don't care, because they do. I know other people in my family care, they just don't understand. My best friends care, but they don't understand. I'm not allowing myself to be upset about that anymore...my energy (when I have some) is just far too precious to waste on trying to "make" other people understand my condition. However, what I can't and will never be able to grasp is how so many husbands, wives and partners out there simply don't even TRY to understand their loved one's illness. Instead of researching their loved one's condition, they judge them. Label them. Discard and dispute their feelings. I see this far too often and it honestly makes me angry. If your wife, husband or partner came home and told you they'd just been diagnosed with some form of Cancer? would you treat them this way? If he or she came home and told you they'd been diagnosed with Multiple Sclerosis, would you treat them this way? - NO? I'd hope not. I am shocked at how so many FM patients are forced to live with people who have limited to nil compassion for them. It's ridiculous and just goes to prove how much we really do need the awareness to be raised.
Here is an interesting fact for the unsupportive spouses of those with FM. The suffering of FM and CFS is pretty much on par with MS, the suffering both physically and emotionally is real. I can't believe we're in 2010 and we still need to say this. Doctor's simply don't just prescribe the harsh and addictive medications we're on for a "fake" medical condition. They're not allowed to write prescriptions just to shut their patient's up. And here's another thing...from the research I've done, most FM patients go on to be diagnosed with another autoimmune disease in the first few years of diagnosis. As I said in my other post, my doctors are concerned about Lupus. One of them is convinced I have a progressive form of MS. But even if these other illnesses were not a concern, even if it was Fibromyalgia with no other underlying medical conditions (which it is for a lot of people) - the support, care, empathy, patience and compassion is still needed. It's still deserved. It's still vital.
As I said, we're in 2010. It's time for the BS to stop and for the supporting to begin. It wasn't so long ago that medical conditions like MS, Lupus, MENTAL ILLNESS and ADHD were looked at as "fake" illnesses/diseases. FM patients have enough trouble finding doctors who will understand and support them, they shouldn't have to fight to be heard and helped but they do. The last thing they need is to have to fight in order for their own lovers to understand and support them.
What ever happened to "In Sickness And In Health"??? I'm off...I think I'll go and hold my husband and thank God for blessing me with such a real man.
Gentle hugs everyone.
Em
xoxo
Monday, June 28, 2010
My Diagnosis - Before & After
If you want to know the whole story - get comfortable, or make a cuppa and then get comfortable as this is a long story. Most FM patient's stories are I'm afraid lol.
It all started four days after my son was born, I'll never forget that date, or that moment. I was lying down in my hospital bed (I'd had a c-section and was still in quite a lot of post op pain), suddenly I felt like I couldn't breathe properly. My chest felt extremely tight and breathing in deeply either hurt, or was impossible. I figured this was probably normal...I don't know why I thought that...so I tried to ignore it for a while. Every time I fell asleep, I'd wake up suddenly just after dozing off feeling very short of breath. By 8 'o' clock the next morning, I was worried enough to talk to the nurse. She took my blood pressure, pulse and temp - everything proved normal. She then did an ECG which also proved normal but she contacted the doctor on duty as I was still feeling very breathless, not to mention scared.
The doctor arrived soon after and told me she thought it was simple PND related anxiety, I told her she was wrong. She then sent me off (in a wheelchair) to another part of the hospital for a chest x-ray and a CT scan of my lungs to rule out the possibility of a blood clot. I was so incredibly scared during the CT scan...I'm naturally claustrophobic, but this was something else. I cried the whole time. I also had some blood tests. Less than an hour later, all the results came back. Everything was clear, everything was fine except for the fact that I was severely anemic due to the blood loss after my c-section. I've always been anemic, since at least the age of 11, but never like this. Not even after the birth of my daughter 8 years ago. I was told my chest pain and breathing problems were due to the anemia and would subside within a few weeks provided I took the iron medication they gave me. Looking back, I knew at the time this was wrong. I knew this wasn't anemia...but given every test I had done came up fine, I decided to go along with it.
A few days later I was out of hospital and home with my husband and newborn son. Emotionally, I felt on top of the world - I'd just given birth to the most precious, beautiful little being I'd ever laid eyes on. Physically, I was going downhill fast. I almost immediately found out that coffee, coca cola and everything else containing caffeine were off the menu. I'd never had a problem with caffeine before, but now it was sending me into what felt like a amphetamine induced seizure. Whatever I ate seemed to send me running to the bathroom...sometimes within minutes after eating. It was either strong nausea, vomiting, or uncontrollable bowel problems. Sometimes, it was all three - at the same time. I quickly started eliminating certain foods from my diet, mainly junk foods, foods high in salt, sugar, fat. I stopped eating/drinking anything with artificial sweeteners of any kind (I'd stopped using aspartame years ago as I already knew that was deadly). Nothing changed though, I still felt sick pretty much all the time. The chest pain and breathing troubles were now keeping me awake pretty much 24/7...even when my breathing was OK and I felt like I was getting enough oxygen, I was simply too afraid to go to sleep as I'd always wake up breathless. It was so bad one day that I called an ambulance as I was certain I was having a heart attack. Well, I wasn't. The ambulance officers put it down to anxiety.
By now, about five weeks had passed. My son was growing so quickly and thriving. My husband was doing everything he could to make my life easier, and by this stage, he was becoming more and more concerned. My close friends and close family were also worried...what seemed to concern them all the most was my breathing. Just having a conversation would leave me out of breath, just changing my son would leave me breathless. Getting in and out of the car, making the bed, doing the dishes...simple things would leave me gasping for air. By this stage, these sorts of things were making me extremely tired too. I remember walking out to get the mail one day...and luckily my son fell asleep that afternoon, because that one mundane task required me to nap for three solid hours. My life was becoming a nightmare, I needed help and I needed it NOW.
I'd been to the doctor a couple of times by this stage, after each visit I was told that all of these problems stemmed from my Anemia. I was fed up with that BS answer and asked a different doctor (at the same surgery I'd been to prior) what she thought was wrong with me. She sent me for blood tests. The results came back and she was concerned...my white cell count was low, but my platelets count was high. She said these results indicated my body was fighting some sort of infection, so she sent me for more blood tests. No infections were found. A week later, she sent me for another blood test. This time, my white cells were in the normal range, my platelets were high but declining and my anemia had gone! She told me she felt relieved because she'd suspected Leukemia and that my symptoms were probably the result of a low grade infection "somewhere" that was "obviously" getting better judging by my platelets count. She told me that it was also not uncommon to have slightly elevated platelets levels after a pregnancy. I felt somewhat relieved...she said whatever this was would go away on it's own....at this point, I had hope that whatever this was would soon go away. I had hope I'd feel like me again.
A few days later (a few being four days...I remember it well) I was having trouble with my grasp. I kept dropping things like cups, my phone, my vitamins etc. I'd be in the middle of changing my son and my fingers just wouldn't bend the right way...which made changing him rather difficult. I found that opening jars or bottles was almost, and often, impossible...I was either too weak, or it hurt too much. By this stage, everything hurt. I ached all over and continually felt exhausted. One afternoon my friend was over having a cup of tea and she witnessed what was quite a distressing event to me. I was feeding my son a bottle and all of a sudden I couldn't get a grip on it. I dropped it 3 or 4 times before I let her take over - I just simply had no control over my right hand. I followed her advice and "got on the phone NOW" and made an appointment to see my doctor later that day.
My usual doctor wasn't there, so I saw a new one. I told him what had happened that afternoon along with everything else. He put a lot of it down to being tired - in other words he thought I was clumsy. He put the exhaustion down to being a new mum, he put the pain I was feeling down to being tired. He was however concerned about my breathing problems and ordered another lots of blood tests and a chest x-ray. He thought I was anemic again. X-ray was clear, blood tests were normal...I wasn't anemic. His answer? "You're a new mum who needs more sleep and exercise".
About a week later, after being extremely ill, I'd had enough. I went back to the doctor yet again, this time I saw a different one. I needed to know what was wrong with me!! I was terrified!! I was told I was gluten intolerant - I was told that gluten was the cause of every single problem I had. There were no tests done to determine this, but the doctor said he was certain of it. He was right about me being gluten intolerant as the bloating, vomiting and IBS is now managed with my diet...but he wasn't right when he said I'd feel all better if I stopped eating it.
Over the next few weeks, the pain some days was unbearable. My husband gave up work to take care of me - we had no choice. I couldn't sleep, and when I did sleep it didn't even make a dent in the fatigue. By now, I was forgetting things. Important things. Some days I could barely move, the pain in my joints and muscles were that bad. Sometimes I couldn't walk down or up the stairs...I'd have to crawl. Sometimes it would (and still does) take me over an hour to get out of bed, either because of pain or muscle paralysis. One day my throat would be sore and I could barely speak, the next my stomach would be cramping so badly that I thought my appendix had burst or something. By now, the chronic migraines were stopping me from even being able to string a sentence together most of the time.
My son was now just over 2 months old - my husband needed to go back to work and I just needed to feel better. I needed someone, something, ANYTHING to make whatever this was to go away. I went back to the doctor...the 4th doctor I'd seen at the same damn surgery. I sat down in his office and just started crying uncontrollably. He looked at all my blood test results that I had with me. He looked at all the x-rays. He then told me he wanted me to go for more blood tests...he wanted to rule out certain types of arthritis, certain infections like Ross River Fever, Lyme Disease and Mono. I went for the tests, I was now on a first name basis with Mike - the guy at the pathology centre. He joked that if he took any more blood from me I'd probably be able to survive any vampire attack lol.
About a week later, I went back to the doctor. As suspected, my blood test results were clear. "You're fine, so just relax, enjoy your baby" - that's what he said with a smile. I think he expected me to leave as he thought the appointment was over. He noticed I hadn't moved and that I was looking at him with an apparently, in his words, "puzzled" look on my face. I then told him that my husband had given up work, I could barely move some days, I couldn't sleep and even when I did I was exhausted all the time, the pain was constant, the migraines were constant, I'd be sick sometimes for no reason, I couldn't keep a firm grip of ANYTHING any more, I kept forgetting things etc etc ... he already knew all of this but I felt the need to tell him again. I started to cry, again, and asked him - in my words - WHAT THE HELL IS WRONG WITH ME?! He then told me that all of this was Post Natal Depression. He typed up scripts for sleeping pills and made me an appointment with the clinic counselor. I was deflated....exhausted...defeated. I knew this wasn't true...but I was just too tired to fight it anymore. I tore up the sleeping pill script and never went to the appointment with the counselor. I told my husband what the doctor said, he immediately became angry and knew that "depression" wasn't the answer, especially since I've been dealing with Depression & Panic Disorder since 2001.
Over the next week or so though, I started believing it really was "all in my head". Whenever I couldn't breathe properly and needed my Ventolin and oxygen mask, I told myself it was PND like the doctor said. Whenever my knees hurt so bad I could barely walk, I told myself it was PND like the doctor said. Whenever I felt my glands up and my throat burned, I told myself it was PND like the doctor said. Whenever I had a migraine so bad I couldn't see straight, I told myself it was PND like the doctor said. You get the picture - self doubt had well and truly set in. But then one morning, after it took a good hour to just stand up whilst getting out of bed, I collapsed back down in agony. My knees were red raw....when I touched them, I noticed the joints in my fingers (BOTH HANDS!) were as red as tomatoes. Can PND be the cause of this? Like the doctor said?.......Fuck the doctor. No it can't.
After an extremely hot shower and far, far too many Ibuprofen tablets, I got on the phone to a surgery I'd never been to before and basically demanded an appointment with whatever doctor had one available first. I gathered up every blood test result (enough pages for a novel) and my x-rays and scans and pretty much threw them at the doctor. I told her I'd been to the surgery across the road so many times I'd lost count, was passed around like a football between doctors, had test after test after test....3 chest x-rays...more blood tests and no answers!! I was sick of knowing what I didn't have and just needed to know what I did have. I also told her if she thought this was in my head then to refer me to a doctor who gave a shit. Yes, they were my words. She took my hand, looked me in the eye, and told me I wasn't depressed. She didn't know what was wrong, but she promised me we'd find out together. She kept all my blood tests so she could study them and ordered every single test I'd had (including in hospital after my son's birth) to look at. She sent me for a few more blood tests and asked me to keep a record of my body temperatures for the next few days.
A few days later, she told me my results were back and were "all over the place". My calcium was high, my platelets were now low...but my white cells had risen. My body temps were also low. Too low. I thought "low" was good but she said consistently low body temps are just as bad as high ones. She'd tested for Lupus, and it wasn't that, however she wanted me to have a test every 12 months just in case it isn't showing up yet. She made a phone call with me in her office and told me she wanted me to go and see a specialist in a few days. She made all the arrangements for me and told me to come and see her afterward. She said something was wrong but she didn't know what. I was so relieved I'd finally found a doctor who LISTENED to me.
I went to see the specialist and instantly recognised him. He was the doctor who discharged me from hospital and told me that it was very important to take my iron meds as I was so anemic at that time...I remembered thinking how nice he was and was relieved to be seeing him again. He looked at all of my test results and read the referral letter from my doctor. He looked at me and said "sweetheart, your face is telling me a story. How much pain are you in?" He said this in such a compassionate way that I started to cry. I apologised. He then came over to me from the other side of his desk and gave me a hug. I don't give a shit whether this is "unethical" or not...it's what I needed at the time. I think I sobbed on his shoulder for a good five minutes. Through my tears, I managed to mutter the words "please...please help me". He gave me a glass of water and asked me to lie down so he could examine me. He started applying pressure on my knees...he soon stopped when he saw how much pain it caused me. He then started applying pressure to certain points in my neck and back which also hurt. He then looked at my hands and saw how red my finger joints were, he looked straight up at me and told me to come and take a seat back at his desk. I still remember word for word what he said. "You have Fibromyalgia". I was scared as I've seen what this does to people but didn't know everything about it. I instantly replied with "I know someone with this, they're in a wheelchair" - I was just so scared. He told me that he would do absolutely everything in his power to ensure I didn't end up immobile, but that there was no cure. There is no standard or one treatment and that we'd have to work together so I could manage this. He told me that most, if not all, Fibro patients have ALWAYS had this disease - it just doesn't usually show up until a significant event happens which can be trauma, an accident, or in my case - surgery (c-section). He told me he was going to prescribe different medications consisting of painkillers, anti-inflammatories and anti-depressants. He told me chronic pain meant low serotonin, so the anti-depressants were just as necessary as the other stuff. He also told me that it's the pain that causes depression and not the other way around. He told me it was important to let myself grieve as FM is a lifetime fight that unfortunately, I'll always have to battle. He then bought my husband in and explained all of this to him. That night, we both cried. While we were devastated, we were also relieved to finally know what was wrong. My doctor who referred me to him was also sad for me, but glad we now knew what we were dealing with.
After taking the medication the next day, I had a terrible reaction to the anti-depressant. I called him and told him it made me very sick and very, very panicked. He told me to cease it and prescribed a muscle relaxant and anti-panic medication which luckily, I am tolerating. I saw him again 2 weeks later and he told me that since the painkillers aren't working too well, and since my stomach doesn't handle the anti-inflammatory too well, I'll need to start Morphine sooner rather than later. I'm still deciding whether or not I want to do this.
A few weeks ago, my ears started ringing and they haven't stopped. When it first started I figured it was a part of Fibro, and it can be for many people. However, a few more problems have come to light since my diagnosis. My balance is now very bad...it's never been good....but it's so bad that we need to move as I can't live anywhere with stairs. Doctor's orders. I am also having uncontrollable tremors in my eyes and vision problems. I coudn't see for about 40 seconds 2 weeks ago and immediately rang my doctor. She said that in her opinion, the balance and vision loss/problems isn't Fibro and suspects MS - she demanded that I come in so she could refer me for an MRI which she wanted me to have immediately. I declined. She told me how she wouldn't be asking me to go for an MRI if she didn't strongly suspect MS but I told her I couldn't deal with any more tests or bad news for that matter right now. She said she understood but that she'd contact my specialist so he could talk to me about this at my next appointment. She also made me promise to go to the ER if I lose my vision like that again "even for a second".
I know I need to face an MRI soon and that it's for the best. I also know how strong the possibility of MS is according to my doctor (as well as it being in the family)...but for now...one chronic, disabling, incurable disease is enough. It's been just over a month since my diagnosis, I'm guessing it'll take me at least another two to fully accept this. I'm not in denial - but I'm not quite at the "acceptance" stage of the grieving process yet.
On a final note, I can say that I'm looking forward to getting to the stage where I can tell people "I have Fibromyalgia - Fibromyalgia does not have me". But for now, it does. And that's OK. I know I'll never beat this, but I will fight it. I have to.
It all started four days after my son was born, I'll never forget that date, or that moment. I was lying down in my hospital bed (I'd had a c-section and was still in quite a lot of post op pain), suddenly I felt like I couldn't breathe properly. My chest felt extremely tight and breathing in deeply either hurt, or was impossible. I figured this was probably normal...I don't know why I thought that...so I tried to ignore it for a while. Every time I fell asleep, I'd wake up suddenly just after dozing off feeling very short of breath. By 8 'o' clock the next morning, I was worried enough to talk to the nurse. She took my blood pressure, pulse and temp - everything proved normal. She then did an ECG which also proved normal but she contacted the doctor on duty as I was still feeling very breathless, not to mention scared.
The doctor arrived soon after and told me she thought it was simple PND related anxiety, I told her she was wrong. She then sent me off (in a wheelchair) to another part of the hospital for a chest x-ray and a CT scan of my lungs to rule out the possibility of a blood clot. I was so incredibly scared during the CT scan...I'm naturally claustrophobic, but this was something else. I cried the whole time. I also had some blood tests. Less than an hour later, all the results came back. Everything was clear, everything was fine except for the fact that I was severely anemic due to the blood loss after my c-section. I've always been anemic, since at least the age of 11, but never like this. Not even after the birth of my daughter 8 years ago. I was told my chest pain and breathing problems were due to the anemia and would subside within a few weeks provided I took the iron medication they gave me. Looking back, I knew at the time this was wrong. I knew this wasn't anemia...but given every test I had done came up fine, I decided to go along with it.
A few days later I was out of hospital and home with my husband and newborn son. Emotionally, I felt on top of the world - I'd just given birth to the most precious, beautiful little being I'd ever laid eyes on. Physically, I was going downhill fast. I almost immediately found out that coffee, coca cola and everything else containing caffeine were off the menu. I'd never had a problem with caffeine before, but now it was sending me into what felt like a amphetamine induced seizure. Whatever I ate seemed to send me running to the bathroom...sometimes within minutes after eating. It was either strong nausea, vomiting, or uncontrollable bowel problems. Sometimes, it was all three - at the same time. I quickly started eliminating certain foods from my diet, mainly junk foods, foods high in salt, sugar, fat. I stopped eating/drinking anything with artificial sweeteners of any kind (I'd stopped using aspartame years ago as I already knew that was deadly). Nothing changed though, I still felt sick pretty much all the time. The chest pain and breathing troubles were now keeping me awake pretty much 24/7...even when my breathing was OK and I felt like I was getting enough oxygen, I was simply too afraid to go to sleep as I'd always wake up breathless. It was so bad one day that I called an ambulance as I was certain I was having a heart attack. Well, I wasn't. The ambulance officers put it down to anxiety.
By now, about five weeks had passed. My son was growing so quickly and thriving. My husband was doing everything he could to make my life easier, and by this stage, he was becoming more and more concerned. My close friends and close family were also worried...what seemed to concern them all the most was my breathing. Just having a conversation would leave me out of breath, just changing my son would leave me breathless. Getting in and out of the car, making the bed, doing the dishes...simple things would leave me gasping for air. By this stage, these sorts of things were making me extremely tired too. I remember walking out to get the mail one day...and luckily my son fell asleep that afternoon, because that one mundane task required me to nap for three solid hours. My life was becoming a nightmare, I needed help and I needed it NOW.
I'd been to the doctor a couple of times by this stage, after each visit I was told that all of these problems stemmed from my Anemia. I was fed up with that BS answer and asked a different doctor (at the same surgery I'd been to prior) what she thought was wrong with me. She sent me for blood tests. The results came back and she was concerned...my white cell count was low, but my platelets count was high. She said these results indicated my body was fighting some sort of infection, so she sent me for more blood tests. No infections were found. A week later, she sent me for another blood test. This time, my white cells were in the normal range, my platelets were high but declining and my anemia had gone! She told me she felt relieved because she'd suspected Leukemia and that my symptoms were probably the result of a low grade infection "somewhere" that was "obviously" getting better judging by my platelets count. She told me that it was also not uncommon to have slightly elevated platelets levels after a pregnancy. I felt somewhat relieved...she said whatever this was would go away on it's own....at this point, I had hope that whatever this was would soon go away. I had hope I'd feel like me again.
A few days later (a few being four days...I remember it well) I was having trouble with my grasp. I kept dropping things like cups, my phone, my vitamins etc. I'd be in the middle of changing my son and my fingers just wouldn't bend the right way...which made changing him rather difficult. I found that opening jars or bottles was almost, and often, impossible...I was either too weak, or it hurt too much. By this stage, everything hurt. I ached all over and continually felt exhausted. One afternoon my friend was over having a cup of tea and she witnessed what was quite a distressing event to me. I was feeding my son a bottle and all of a sudden I couldn't get a grip on it. I dropped it 3 or 4 times before I let her take over - I just simply had no control over my right hand. I followed her advice and "got on the phone NOW" and made an appointment to see my doctor later that day.
My usual doctor wasn't there, so I saw a new one. I told him what had happened that afternoon along with everything else. He put a lot of it down to being tired - in other words he thought I was clumsy. He put the exhaustion down to being a new mum, he put the pain I was feeling down to being tired. He was however concerned about my breathing problems and ordered another lots of blood tests and a chest x-ray. He thought I was anemic again. X-ray was clear, blood tests were normal...I wasn't anemic. His answer? "You're a new mum who needs more sleep and exercise".
About a week later, after being extremely ill, I'd had enough. I went back to the doctor yet again, this time I saw a different one. I needed to know what was wrong with me!! I was terrified!! I was told I was gluten intolerant - I was told that gluten was the cause of every single problem I had. There were no tests done to determine this, but the doctor said he was certain of it. He was right about me being gluten intolerant as the bloating, vomiting and IBS is now managed with my diet...but he wasn't right when he said I'd feel all better if I stopped eating it.
Over the next few weeks, the pain some days was unbearable. My husband gave up work to take care of me - we had no choice. I couldn't sleep, and when I did sleep it didn't even make a dent in the fatigue. By now, I was forgetting things. Important things. Some days I could barely move, the pain in my joints and muscles were that bad. Sometimes I couldn't walk down or up the stairs...I'd have to crawl. Sometimes it would (and still does) take me over an hour to get out of bed, either because of pain or muscle paralysis. One day my throat would be sore and I could barely speak, the next my stomach would be cramping so badly that I thought my appendix had burst or something. By now, the chronic migraines were stopping me from even being able to string a sentence together most of the time.
My son was now just over 2 months old - my husband needed to go back to work and I just needed to feel better. I needed someone, something, ANYTHING to make whatever this was to go away. I went back to the doctor...the 4th doctor I'd seen at the same damn surgery. I sat down in his office and just started crying uncontrollably. He looked at all my blood test results that I had with me. He looked at all the x-rays. He then told me he wanted me to go for more blood tests...he wanted to rule out certain types of arthritis, certain infections like Ross River Fever, Lyme Disease and Mono. I went for the tests, I was now on a first name basis with Mike - the guy at the pathology centre. He joked that if he took any more blood from me I'd probably be able to survive any vampire attack lol.
About a week later, I went back to the doctor. As suspected, my blood test results were clear. "You're fine, so just relax, enjoy your baby" - that's what he said with a smile. I think he expected me to leave as he thought the appointment was over. He noticed I hadn't moved and that I was looking at him with an apparently, in his words, "puzzled" look on my face. I then told him that my husband had given up work, I could barely move some days, I couldn't sleep and even when I did I was exhausted all the time, the pain was constant, the migraines were constant, I'd be sick sometimes for no reason, I couldn't keep a firm grip of ANYTHING any more, I kept forgetting things etc etc ... he already knew all of this but I felt the need to tell him again. I started to cry, again, and asked him - in my words - WHAT THE HELL IS WRONG WITH ME?! He then told me that all of this was Post Natal Depression. He typed up scripts for sleeping pills and made me an appointment with the clinic counselor. I was deflated....exhausted...defeated. I knew this wasn't true...but I was just too tired to fight it anymore. I tore up the sleeping pill script and never went to the appointment with the counselor. I told my husband what the doctor said, he immediately became angry and knew that "depression" wasn't the answer, especially since I've been dealing with Depression & Panic Disorder since 2001.
Over the next week or so though, I started believing it really was "all in my head". Whenever I couldn't breathe properly and needed my Ventolin and oxygen mask, I told myself it was PND like the doctor said. Whenever my knees hurt so bad I could barely walk, I told myself it was PND like the doctor said. Whenever I felt my glands up and my throat burned, I told myself it was PND like the doctor said. Whenever I had a migraine so bad I couldn't see straight, I told myself it was PND like the doctor said. You get the picture - self doubt had well and truly set in. But then one morning, after it took a good hour to just stand up whilst getting out of bed, I collapsed back down in agony. My knees were red raw....when I touched them, I noticed the joints in my fingers (BOTH HANDS!) were as red as tomatoes. Can PND be the cause of this? Like the doctor said?.......Fuck the doctor. No it can't.
After an extremely hot shower and far, far too many Ibuprofen tablets, I got on the phone to a surgery I'd never been to before and basically demanded an appointment with whatever doctor had one available first. I gathered up every blood test result (enough pages for a novel) and my x-rays and scans and pretty much threw them at the doctor. I told her I'd been to the surgery across the road so many times I'd lost count, was passed around like a football between doctors, had test after test after test....3 chest x-rays...more blood tests and no answers!! I was sick of knowing what I didn't have and just needed to know what I did have. I also told her if she thought this was in my head then to refer me to a doctor who gave a shit. Yes, they were my words. She took my hand, looked me in the eye, and told me I wasn't depressed. She didn't know what was wrong, but she promised me we'd find out together. She kept all my blood tests so she could study them and ordered every single test I'd had (including in hospital after my son's birth) to look at. She sent me for a few more blood tests and asked me to keep a record of my body temperatures for the next few days.
A few days later, she told me my results were back and were "all over the place". My calcium was high, my platelets were now low...but my white cells had risen. My body temps were also low. Too low. I thought "low" was good but she said consistently low body temps are just as bad as high ones. She'd tested for Lupus, and it wasn't that, however she wanted me to have a test every 12 months just in case it isn't showing up yet. She made a phone call with me in her office and told me she wanted me to go and see a specialist in a few days. She made all the arrangements for me and told me to come and see her afterward. She said something was wrong but she didn't know what. I was so relieved I'd finally found a doctor who LISTENED to me.
I went to see the specialist and instantly recognised him. He was the doctor who discharged me from hospital and told me that it was very important to take my iron meds as I was so anemic at that time...I remembered thinking how nice he was and was relieved to be seeing him again. He looked at all of my test results and read the referral letter from my doctor. He looked at me and said "sweetheart, your face is telling me a story. How much pain are you in?" He said this in such a compassionate way that I started to cry. I apologised. He then came over to me from the other side of his desk and gave me a hug. I don't give a shit whether this is "unethical" or not...it's what I needed at the time. I think I sobbed on his shoulder for a good five minutes. Through my tears, I managed to mutter the words "please...please help me". He gave me a glass of water and asked me to lie down so he could examine me. He started applying pressure on my knees...he soon stopped when he saw how much pain it caused me. He then started applying pressure to certain points in my neck and back which also hurt. He then looked at my hands and saw how red my finger joints were, he looked straight up at me and told me to come and take a seat back at his desk. I still remember word for word what he said. "You have Fibromyalgia". I was scared as I've seen what this does to people but didn't know everything about it. I instantly replied with "I know someone with this, they're in a wheelchair" - I was just so scared. He told me that he would do absolutely everything in his power to ensure I didn't end up immobile, but that there was no cure. There is no standard or one treatment and that we'd have to work together so I could manage this. He told me that most, if not all, Fibro patients have ALWAYS had this disease - it just doesn't usually show up until a significant event happens which can be trauma, an accident, or in my case - surgery (c-section). He told me he was going to prescribe different medications consisting of painkillers, anti-inflammatories and anti-depressants. He told me chronic pain meant low serotonin, so the anti-depressants were just as necessary as the other stuff. He also told me that it's the pain that causes depression and not the other way around. He told me it was important to let myself grieve as FM is a lifetime fight that unfortunately, I'll always have to battle. He then bought my husband in and explained all of this to him. That night, we both cried. While we were devastated, we were also relieved to finally know what was wrong. My doctor who referred me to him was also sad for me, but glad we now knew what we were dealing with.
After taking the medication the next day, I had a terrible reaction to the anti-depressant. I called him and told him it made me very sick and very, very panicked. He told me to cease it and prescribed a muscle relaxant and anti-panic medication which luckily, I am tolerating. I saw him again 2 weeks later and he told me that since the painkillers aren't working too well, and since my stomach doesn't handle the anti-inflammatory too well, I'll need to start Morphine sooner rather than later. I'm still deciding whether or not I want to do this.
A few weeks ago, my ears started ringing and they haven't stopped. When it first started I figured it was a part of Fibro, and it can be for many people. However, a few more problems have come to light since my diagnosis. My balance is now very bad...it's never been good....but it's so bad that we need to move as I can't live anywhere with stairs. Doctor's orders. I am also having uncontrollable tremors in my eyes and vision problems. I coudn't see for about 40 seconds 2 weeks ago and immediately rang my doctor. She said that in her opinion, the balance and vision loss/problems isn't Fibro and suspects MS - she demanded that I come in so she could refer me for an MRI which she wanted me to have immediately. I declined. She told me how she wouldn't be asking me to go for an MRI if she didn't strongly suspect MS but I told her I couldn't deal with any more tests or bad news for that matter right now. She said she understood but that she'd contact my specialist so he could talk to me about this at my next appointment. She also made me promise to go to the ER if I lose my vision like that again "even for a second".
I know I need to face an MRI soon and that it's for the best. I also know how strong the possibility of MS is according to my doctor (as well as it being in the family)...but for now...one chronic, disabling, incurable disease is enough. It's been just over a month since my diagnosis, I'm guessing it'll take me at least another two to fully accept this. I'm not in denial - but I'm not quite at the "acceptance" stage of the grieving process yet.
On a final note, I can say that I'm looking forward to getting to the stage where I can tell people "I have Fibromyalgia - Fibromyalgia does not have me". But for now, it does. And that's OK. I know I'll never beat this, but I will fight it. I have to.
Sunday, June 27, 2010
A Blog Virgin No More!
Hi Everyone :)
After making several videos (including a few I've made below), I decided to start a blog about my journey with Fibromyalgia. I plan on starting a video blog on Youtube in the near future but thought I'd also document how this disease can, and does, affect my life in so many ways. As everyone with FM knows, living with this disease is a day to day struggle. Every day is a fight and we all miss the people we used to be. I sure as shit know I miss the lively, happy, confident and relaxed woman I used to be. I miss being able to live without pain and everything else that FM has bought into my life. My husband misses her, my brother misses her, my best friends miss her, my boss misses her. I'm so glad I have photos of who I was before this disease...it gives me hope that one day, I might be able to feel genuinely happy again. Genuinely optimistic again. Genuinely me again.
I don't have much time so I won't go into how I was diagnosed or how my FM came to be, but I plan on going into it in detail in my next post. I have noticed that a lot of people who believe they have FM need, and want, to know how others with this disease were diagnosed. As you all know, or will find out, a lot of doctors will simply not diagnose this disease. Some doctors won't diagnose you because they don't believe this disease exists (these doctors are the kind of doctors who usually miss diseases in people whether it's MS, Lupus or RA) - but sometimes doctors won't diagnose you because there is no standard testing for FM available. Some doctors will believe you're sick, but until their 100% sure and 100% confident that you have FM - they will not make it official. I for one know how terrifying it is to know you're sick, very sick, and to only be told "I don't know what it is" by doctors. I'll get into this in the next post.
In the meantime, if you're suffering FM and need a friend please add me and watch the videos below. If you're not suffering FM and don't understand the condition, then please watch my videos below so you can get a clearer picture of what FM sufferers deal with on a daily basis. We are never, ever going to receive the cure that we NEED and that we DESERVE unless there is more awareness about this disease. That goes for Lupus patients as well.
CFS, FM, Lupus and M.E are serious diseases - sometimes fatal. They are just as serious as other autoimmune diseases but have next to no awareness compared to diseases like MS (which I may also have by the way). Unfortunately, the only people spreading this much needed awareness are people who suffer from these diseases. Is that fair? No it's not. We have enough to deal with.
Rant over - Until my next post, gentle hugs :)
Em
xoxo
After making several videos (including a few I've made below), I decided to start a blog about my journey with Fibromyalgia. I plan on starting a video blog on Youtube in the near future but thought I'd also document how this disease can, and does, affect my life in so many ways. As everyone with FM knows, living with this disease is a day to day struggle. Every day is a fight and we all miss the people we used to be. I sure as shit know I miss the lively, happy, confident and relaxed woman I used to be. I miss being able to live without pain and everything else that FM has bought into my life. My husband misses her, my brother misses her, my best friends miss her, my boss misses her. I'm so glad I have photos of who I was before this disease...it gives me hope that one day, I might be able to feel genuinely happy again. Genuinely optimistic again. Genuinely me again.
I don't have much time so I won't go into how I was diagnosed or how my FM came to be, but I plan on going into it in detail in my next post. I have noticed that a lot of people who believe they have FM need, and want, to know how others with this disease were diagnosed. As you all know, or will find out, a lot of doctors will simply not diagnose this disease. Some doctors won't diagnose you because they don't believe this disease exists (these doctors are the kind of doctors who usually miss diseases in people whether it's MS, Lupus or RA) - but sometimes doctors won't diagnose you because there is no standard testing for FM available. Some doctors will believe you're sick, but until their 100% sure and 100% confident that you have FM - they will not make it official. I for one know how terrifying it is to know you're sick, very sick, and to only be told "I don't know what it is" by doctors. I'll get into this in the next post.
In the meantime, if you're suffering FM and need a friend please add me and watch the videos below. If you're not suffering FM and don't understand the condition, then please watch my videos below so you can get a clearer picture of what FM sufferers deal with on a daily basis. We are never, ever going to receive the cure that we NEED and that we DESERVE unless there is more awareness about this disease. That goes for Lupus patients as well.
CFS, FM, Lupus and M.E are serious diseases - sometimes fatal. They are just as serious as other autoimmune diseases but have next to no awareness compared to diseases like MS (which I may also have by the way). Unfortunately, the only people spreading this much needed awareness are people who suffer from these diseases. Is that fair? No it's not. We have enough to deal with.
Rant over - Until my next post, gentle hugs :)
Em
xoxo
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