So I haven't posted lately because I've been on Spring Break.
And like most college seniors on spring break, I partied on the beach with my friends and drank until the sun came up.
No, no I didn't. I didn't go to the beach as so many of my peers did. I did not go on any road trips to exciting places like California or New York or Florida. I did not go to parties, or hang out at clubs or bars. I did not even visit but one friend, and technically, she visited me. I didn't do any of those normal things which college seniors on spring break do because I have fibromyalgia. I spent the vast amount of my spring break in bed - and that's not a complaint.
While I do point out the difference between my life and the life of my peers, it is not a complaint. My spring break was quite lovely. I enjoyed it. And while I can't bring back any crazy and awesome memories from my break as I'd like to, I was content with catching up on sleep and letting my body heal, even just a little bit.
Of course, it wasn't all fun. Unfortunately, we started the grueling process of getting our roof done, which went on for 6 days straight and still isn't finished. This means that from 8 in the morning to 12 or 4 (depending on the weather) in the afternoon, there was loud banging and lots of talking from the workers. For someone with Fibromyalgia who experiences the symptoms of sensory overload, this can be a problem.
And for me, personally, one of my most dangerous symptoms is the hearing hypersensitivity. My experience with this auditory sensory overload has often lead to muscle twitching, muscle jerking, muscle spasms, tremors, nausea, headaches, increased pain and fatigue, blurry vision, unrelenting anxiety, and various speech impediments. As all of this builds up, it eventually leads to syncope (fainting) and seizures.
So, as you can imagine, while the workers were there, I was in pretty bad shape, experiencing a handful of episodes a day. My parents would move me from one side of the house to the other to keep me away from the noise as much as possible. I had to be escorted any time I walked, so I mostly just stayed in bed, as my brother would graciously keep me company by delving deep into philosophical conversations about any and everything.
Ah, but once the workers finished up for the day, I was at total peace. I may have been fatigued and in pain and with a migraine or headache, but I was still at peace. I was going to bed at 7 p.m. and sleeping for 14 hours. I even took the occasional nap or two during the day when I could manage.
No, it wasn't much. I have no stories to tell my friends of how crazy of a time I had, and I have no stories to pass down to my future offspring about how young and reckless I was, but I still enjoyed it.
Obviously, there is frustration involved in being a 20 year old college senior unable to partake in normal college activities, but at the end of the day, I'm just grateful to be going through this ongoing battle at home with my family and friends, above all else. You see, I know what it's like to be young and fighting for your life in a hospital with no parents, no family, no friends. And while I'd certainly rather be a normal and healthy 20 year old girl, I can still appreciate these small things which are often taken for granted.
My mom was dead set on having me spend my spring break in my best friend's condo, who wasn't doing much of anything herself because she was attending a lab over spring break for extra credit. My mother insisted on sending me there to keep me from the pain of the noise. But no matter how annoying and frustrating the noise was, and no matter how much I love my best friend, the only place I wanted to be was home, with my mom and dad, and my brother and dogs.
And I did just that :)
Hm. Fibromyalgia seems to have an awfully weird way of keeping me grounded.
Monday, March 19, 2012
Tuesday, March 6, 2012
Lyme Disease.
I find it extremely unnerving that the Fibromyalgia community does very little in spreading awareness about Lyme Disease.
Lyme Disease is a bacterial infection spread via tick bite. Since Fibromyalgia is primarily diagnosed on the basis of exclusion, this makes Lyme Disease the single most important diagnosis to rule out. Why? Well let's start by checking out some of the symptoms of Late Stage/Chronic Lyme Disease:
-Severe Fatigue
-Rashes
-Hair Loss
-Headaches
-Malaise
-Muscle Twitching
-Facial Paralysis (Bell's Palsy)
-Tingling, Itching, Crawling Sensations (RLS)
-Numbness
-Burning or Stabbing Sensations
-Stiffness
-Jaw Pain or Stiffness (TMJ)
-Double or Blurry Vision
-Tinnitus
-Abnormal Sensitivity to light, sounds, smell, and taste (sensory overload)
-Diarrhea
-Constipation
-Irritable Bladder
-Nausea
-Abdominal Pain
-Joint Pain or Swelling
-Muscle Pain
-Shortness of Breath
-Chest Pain/Pressure
-Night Sweats
-Chills
-Heart Palpitations
-Tremors
-Seizures
-Faintness/light headedness
-Dizziness
-Poor Balance
-Mood Swings
-Depression
-Anxiety
-Sleeping Difficulties
-Cognitive and Memory Dysfunction
-Loss of Sex Drive
-Dysmenorrhoea (painful menstruation)
-Unexplained Weight Changes (loss, usually gain)
-Chemical Sensitivities
-Increased Intolerance to Alcohol
Hopefully you noticed that essentially all of these symptoms overlap with that of Fibromyalgia. Some key differences: Bulls-eye rash at the site of the bite and Bell's palsy. Neither of these two symptoms are found in those with Fibromyalgia.
And sure, Fibromyalgia shares overlapping symptoms with a vast amount of other diseases and illnesses, but none are quite as similar as Lyme Disease. There's no denying it: the symptoms of Fibromyalgia and Lyme Disease are virtually identical - eerily so.
But don't assume that because you've never seen a tick on you, nor a bullseye rash, that you're in the clear. Don't even assume that if you've tested negative that you're in the clear. Many people with Lyme Disease (or "Lymies" as they refer to themselves) never saw a tick and never saw or noticed a bullseye rash. This makes Lyme Disease almost as difficult to diagnose as Fibromyalgia.
Two of the most common tests used for detecting Lyme are the ELISA and the Western Blot test. These tests tend to be extremely inaccurate (I've seen rates listed anywhere from 30% to 66% accuracy) and can produce both false negatives and false positives, though the former is a more common occurrence. Should you receive these tests, it's imperative to have them sent to a Lyme literate lab, which there are only a few in the country. They are the best and most accurate at reading results.
Lyme literate doctors or nurses (LLMD/LLMN) are also far and few, but if one is within your area, I would suggest you see them as well. In the event that you test positively for Lyme Disease, it is absolutely paramount to seek out an LLMD or LLMN.
Lyme Disease is just as controversial and complicated as Fibromyalgia. Chronic/Late Stage Lyme Disease is often questioned as to whether or not it exists, but most controversial is the treatment of Chronic Lyme, as it is treated with long-term antibiotics. That's right, unlike Fibromyalgia, there IS a cure for Lyme Disease!
Though the fatality rate of Lyme Disease is very low and death is actually extremely rare, it is still a very real possibility in the event that Lyme Disease is left untreated. Fatality generally occurs when the disease spreads to the heart. If the possibility of having a cure for your illness isn't enough motivation to go get tested, perhaps this risk of death will be.
Fibro and Lyme are so similar that they are very often misdiagnosed as the other. And although passionate Lymies (which appear to be very common) will most likely tell you that only Lyme is misdiagnosed for Fibromyalgia, this is incorrect.
In fact, I have a family friend who was diagnosed with Chronic Lyme after a false positive and sought out long term antibiotic treatment, which began wreak havoc her body. After nearly two years, she began to reevaluate her diagnosis and after continually receiving negative test results and her condition remaining the same, she was then diagnosed with Fibromyalgia, for which medications seem to be improving her condition.
I'd be surprised if anyone familiar to hanging out in a Fibro forum hasn't seen an infiltration by a Lymie, many of whom believe fibro doesn't exist and is truly Lyme, or simply that fibro is a symptom of Lyme (personally, I do believe Fibro is the major symptom of Lyme, but I also believe the syndrome exists independently of a Lyme infection). Lymies can sometimes be very hardcore and passionate, and unfortunately their hysterics do more harm to their cause than good.
But don't let their headstrong, sometimes irrational, approach take away from their message. Lyme Disease is a very real possibility for those who have been diagnosed with Fibromyalgia, and if Fibro patients have been lucky enough to have a doctor actually test them, it's extremely likely they were not properly tested, as doctors are even more uneducated about Lyme than they are Fibro.
Some Lymies may think Lyme Disease is the root of all problems (many are firm believers that Parkinson's, MS, Lupus, Fibromyalgia, Alzheimer's, and even ALS are all actually Lyme Disease in different stages), but their message of awareness is still very important, especially to those with Fibromyalgia.
There's no denying the incredible similarity between these two illnesses, and there are theories that they are closely related in one way or another, but it is my belief that the Fibro community and the Lyme community teaming up would lead to great things, much like how the Fibro community often teams up with the Chronic Fatigue community. Both Lyme and Fibro are in dire need of awareness, and it is my belief that we could only benefit by supporting one another. Both conditions are mostly a mystery to the medical community, the existence of either is highly controversial, testing for both is unreliable, it is highly probable that a link between the two exists, and at the end of the day, we're both having trouble going to sleep with all of our aches and pains. Because we are experiencing the same symptoms and similar medical and social obstacles, we have the amazing potential to understand one another and unite for a greater cause.
Unfortunately, the Lyme Community is overall resistant and unwelcoming toward the Fibromyalgia community and I don't see cooperation happening any time soon. If you thought Fibrobots were defensive, wait until you see a Lymie. They are often times set in their ways that Fibromyalgia is actually Lyme Disease. Again, a link between the two is actually very plausible, but we'll never know unless we push for more research for these illnesses both together to find any possible connections, and individually.
It breaks my heart knowing what good we could do by bringing these two communities together, and yet missing out on ever having the chance to do so.
If you've been diagnosed with Fibromyalgia, I strongly urge you to educate yourself on Chronic Lyme Disease and have yourself properly tested, perhaps multiple times. Please feel free to contact me for more information on what labs to have results sent to and what LLMD's or LLND's may be in your area.
All in all, regardless if the Lymies aren't willing to help Fibrobots (or vice versa), I am personally willing to help spread awareness about Lyme Disease, as I believe both Fibromyalgia and Lyme Disease do indeed exist. I can't express how much I wish the Fibromyalgia community would try to do the same.
I'll close with a question: How many of your doctors tested you for Lyme Disease? Did they speak with you about Lyme Disease as a possibility before diagnosing you with Fibromyalgia?
I was delightfully surprised to have every one of my doctors inquire about a tick bite before ever breathing the words "Fibromyalgia."
Lyme Disease is a bacterial infection spread via tick bite. Since Fibromyalgia is primarily diagnosed on the basis of exclusion, this makes Lyme Disease the single most important diagnosis to rule out. Why? Well let's start by checking out some of the symptoms of Late Stage/Chronic Lyme Disease:
-Severe Fatigue
-Rashes
-Hair Loss
-Headaches
-Malaise
-Muscle Twitching
-Facial Paralysis (Bell's Palsy)
-Tingling, Itching, Crawling Sensations (RLS)
-Numbness
-Burning or Stabbing Sensations
-Stiffness
-Jaw Pain or Stiffness (TMJ)
-Double or Blurry Vision
-Tinnitus
-Abnormal Sensitivity to light, sounds, smell, and taste (sensory overload)
-Diarrhea
-Constipation
-Irritable Bladder
-Nausea
-Abdominal Pain
-Joint Pain or Swelling
-Muscle Pain
-Shortness of Breath
-Chest Pain/Pressure
-Night Sweats
-Chills
-Heart Palpitations
-Tremors
-Seizures
-Faintness/light headedness
-Dizziness
-Poor Balance
-Mood Swings
-Depression
-Anxiety
-Sleeping Difficulties
-Cognitive and Memory Dysfunction
-Loss of Sex Drive
-Dysmenorrhoea (painful menstruation)
-Unexplained Weight Changes (loss, usually gain)
-Chemical Sensitivities
-Increased Intolerance to Alcohol
Hopefully you noticed that essentially all of these symptoms overlap with that of Fibromyalgia. Some key differences: Bulls-eye rash at the site of the bite and Bell's palsy. Neither of these two symptoms are found in those with Fibromyalgia.
And sure, Fibromyalgia shares overlapping symptoms with a vast amount of other diseases and illnesses, but none are quite as similar as Lyme Disease. There's no denying it: the symptoms of Fibromyalgia and Lyme Disease are virtually identical - eerily so.
But don't assume that because you've never seen a tick on you, nor a bullseye rash, that you're in the clear. Don't even assume that if you've tested negative that you're in the clear. Many people with Lyme Disease (or "Lymies" as they refer to themselves) never saw a tick and never saw or noticed a bullseye rash. This makes Lyme Disease almost as difficult to diagnose as Fibromyalgia.
Two of the most common tests used for detecting Lyme are the ELISA and the Western Blot test. These tests tend to be extremely inaccurate (I've seen rates listed anywhere from 30% to 66% accuracy) and can produce both false negatives and false positives, though the former is a more common occurrence. Should you receive these tests, it's imperative to have them sent to a Lyme literate lab, which there are only a few in the country. They are the best and most accurate at reading results.
Lyme literate doctors or nurses (LLMD/LLMN) are also far and few, but if one is within your area, I would suggest you see them as well. In the event that you test positively for Lyme Disease, it is absolutely paramount to seek out an LLMD or LLMN.
Lyme Disease is just as controversial and complicated as Fibromyalgia. Chronic/Late Stage Lyme Disease is often questioned as to whether or not it exists, but most controversial is the treatment of Chronic Lyme, as it is treated with long-term antibiotics. That's right, unlike Fibromyalgia, there IS a cure for Lyme Disease!
Though the fatality rate of Lyme Disease is very low and death is actually extremely rare, it is still a very real possibility in the event that Lyme Disease is left untreated. Fatality generally occurs when the disease spreads to the heart. If the possibility of having a cure for your illness isn't enough motivation to go get tested, perhaps this risk of death will be.
Fibro and Lyme are so similar that they are very often misdiagnosed as the other. And although passionate Lymies (which appear to be very common) will most likely tell you that only Lyme is misdiagnosed for Fibromyalgia, this is incorrect.
In fact, I have a family friend who was diagnosed with Chronic Lyme after a false positive and sought out long term antibiotic treatment, which began wreak havoc her body. After nearly two years, she began to reevaluate her diagnosis and after continually receiving negative test results and her condition remaining the same, she was then diagnosed with Fibromyalgia, for which medications seem to be improving her condition.
I'd be surprised if anyone familiar to hanging out in a Fibro forum hasn't seen an infiltration by a Lymie, many of whom believe fibro doesn't exist and is truly Lyme, or simply that fibro is a symptom of Lyme (personally, I do believe Fibro is the major symptom of Lyme, but I also believe the syndrome exists independently of a Lyme infection). Lymies can sometimes be very hardcore and passionate, and unfortunately their hysterics do more harm to their cause than good.
But don't let their headstrong, sometimes irrational, approach take away from their message. Lyme Disease is a very real possibility for those who have been diagnosed with Fibromyalgia, and if Fibro patients have been lucky enough to have a doctor actually test them, it's extremely likely they were not properly tested, as doctors are even more uneducated about Lyme than they are Fibro.
Some Lymies may think Lyme Disease is the root of all problems (many are firm believers that Parkinson's, MS, Lupus, Fibromyalgia, Alzheimer's, and even ALS are all actually Lyme Disease in different stages), but their message of awareness is still very important, especially to those with Fibromyalgia.
There's no denying the incredible similarity between these two illnesses, and there are theories that they are closely related in one way or another, but it is my belief that the Fibro community and the Lyme community teaming up would lead to great things, much like how the Fibro community often teams up with the Chronic Fatigue community. Both Lyme and Fibro are in dire need of awareness, and it is my belief that we could only benefit by supporting one another. Both conditions are mostly a mystery to the medical community, the existence of either is highly controversial, testing for both is unreliable, it is highly probable that a link between the two exists, and at the end of the day, we're both having trouble going to sleep with all of our aches and pains. Because we are experiencing the same symptoms and similar medical and social obstacles, we have the amazing potential to understand one another and unite for a greater cause.
Unfortunately, the Lyme Community is overall resistant and unwelcoming toward the Fibromyalgia community and I don't see cooperation happening any time soon. If you thought Fibrobots were defensive, wait until you see a Lymie. They are often times set in their ways that Fibromyalgia is actually Lyme Disease. Again, a link between the two is actually very plausible, but we'll never know unless we push for more research for these illnesses both together to find any possible connections, and individually.
It breaks my heart knowing what good we could do by bringing these two communities together, and yet missing out on ever having the chance to do so.
If you've been diagnosed with Fibromyalgia, I strongly urge you to educate yourself on Chronic Lyme Disease and have yourself properly tested, perhaps multiple times. Please feel free to contact me for more information on what labs to have results sent to and what LLMD's or LLND's may be in your area.
All in all, regardless if the Lymies aren't willing to help Fibrobots (or vice versa), I am personally willing to help spread awareness about Lyme Disease, as I believe both Fibromyalgia and Lyme Disease do indeed exist. I can't express how much I wish the Fibromyalgia community would try to do the same.
I'll close with a question: How many of your doctors tested you for Lyme Disease? Did they speak with you about Lyme Disease as a possibility before diagnosing you with Fibromyalgia?
I was delightfully surprised to have every one of my doctors inquire about a tick bite before ever breathing the words "Fibromyalgia."
Monday, March 5, 2012
Lyrica Commercials
Another quick post.
Is it just me, or is the Lyrica commercial one of the most annoying things ever?
On one hand, I'm thankful for it because it at least familiarizes people with the term "fibromyalgia." In fact, I wouldn't have ever heard of Fibromyalgia without it. (Bit of a fallacy. I suppose it would be more proper to say I likely would not have heard of Fibromyalgia before the point of my diagnoses without it.)
On the other hand, it annoys me twofold:
First, I believe the only symptom mentioned is (muscle) pain, at least in the current commercial. I obviously do not expect them to take the time to list all of the symptoms, but because of this commercial, I have run into a good few people who are under the impression that Fibromyalgia is just "soreness" or "achiness" a la "the commercial on TV."
Commercials can only go over so much information at one time, though, right? Sure, but I still think there are things they could improve in order to be more accurate.
For instance, hypothetically speaking I would personally change the commercial to have the woman lying in bed looking as people with Fibromyalgia often feel - I want her to look similar to how people in flu commercials look, damn it! Not up and moving and then suddenly rubbing her shoulder blade with a squinched up face! Sheesh. She must have extremely mild Fibro.
I also wish there was more emphasis on the type of pain. You know, more descriptive words like radiating, debilitating, unrelenting. Perhaps a mention of how it includes other widespread and bizarre symptoms.
Secondly, the commercial leaves the impression that after taking Lyrica, Miss Fibro is all better to go out in the sun (with no sunglasses since her light sensitivity is now remedied), with her hair pulled back in a bun (since Lyrica is an antidote for the pain and headaches hair bands cause), and is fresh faced (since chronic fatigue has met it's maker!) and ready to tackle another day at work (presuming her fibro wasn't severe enough to put her job in jeopardy)! Ladies and gentlemen, it's a new superhero, FIBRO WOMAN.
Okay, okay, I'm not ignorant, I get it. They are trying to sell a product and it's their job to make it sound like it's a cure for fibro, cancer, and world hunger, and a downright gift from God himself. I get it. But it's just so misleading and inaccurate. I've yet to meet someone on Lyrica or any other single medication whose pain and other symptoms simply vanished. And if that were the case, I'd be hard pressed not to question if they were diagnosed correctly.
I'm currently on Lyrica, and it's helped. By helped, I mean it's taken my pain from a 9 or 8 to a 7, or a 6 on a good day. And that's in combination with tramadol, a sleeping pill, some medication generally used for Parkinson's, and who knows what other prescriptions (I try to take as few as possible). It's also in combination with the 23987429387 brazillion supplements I take, my physical therapy, my healthy(ish) diet, and my overall positive attitude. All of that money for my pain to drop by a point or two. Sigh.
I was once sitting in a room with my Resident Advisor who was aware of my fibromyalgia when the Lyrica commercial came on. "Have you tried that?" she asked, with a look of eagerness to help (after all, she had just discovered that Lyrica practically brings about world peace). I told her I was currently taking it.
"Does it help?"
I begrudgingly responded with my Likert pain scale.
"Well how long have you been taking it? It probably just hasn't had time to take full effect yet. I'm sure if you give it time you'll be back to normal in a few weeks!"
/headdesk
/facepalm
smh
Whatever internet expression of frustration and disappointment you prefer.
No, Anne, Lyrica is not the source of rainbows and butterflies. It will not ensure every fluffy puppy goes to bed with shelter and food tonight, it is not the answer to the inevitable and impending zombie apocalypse, and it is not a cure for Fibrolmyalgia - primarily because, at present, there is no cure.
To be clear, I actually love my RA (not to be confused with my RA doctor!). She's the sweetest, most genuine person ever who is actually very bright. But she also happened to be involved in a big reason why I hate this commercial. :)
Like most things in life, I wish fibromyalgia was as easy as it is on TV. Where's my hardhat and blue prints? :(
Alright, roommate is back and we have our senior seminar presentation to put together. Positive thoughts to anyone going through a particularly rough time right now, and air hugs to all of those Fibrobots out there!
Toodles!
Is it just me, or is the Lyrica commercial one of the most annoying things ever?
On one hand, I'm thankful for it because it at least familiarizes people with the term "fibromyalgia." In fact, I wouldn't have ever heard of Fibromyalgia without it. (Bit of a fallacy. I suppose it would be more proper to say I likely would not have heard of Fibromyalgia before the point of my diagnoses without it.)
On the other hand, it annoys me twofold:
First, I believe the only symptom mentioned is (muscle) pain, at least in the current commercial. I obviously do not expect them to take the time to list all of the symptoms, but because of this commercial, I have run into a good few people who are under the impression that Fibromyalgia is just "soreness" or "achiness" a la "the commercial on TV."
Commercials can only go over so much information at one time, though, right? Sure, but I still think there are things they could improve in order to be more accurate.
For instance, hypothetically speaking I would personally change the commercial to have the woman lying in bed looking as people with Fibromyalgia often feel - I want her to look similar to how people in flu commercials look, damn it! Not up and moving and then suddenly rubbing her shoulder blade with a squinched up face! Sheesh. She must have extremely mild Fibro.
I also wish there was more emphasis on the type of pain. You know, more descriptive words like radiating, debilitating, unrelenting. Perhaps a mention of how it includes other widespread and bizarre symptoms.
Secondly, the commercial leaves the impression that after taking Lyrica, Miss Fibro is all better to go out in the sun (with no sunglasses since her light sensitivity is now remedied), with her hair pulled back in a bun (since Lyrica is an antidote for the pain and headaches hair bands cause), and is fresh faced (since chronic fatigue has met it's maker!) and ready to tackle another day at work (presuming her fibro wasn't severe enough to put her job in jeopardy)! Ladies and gentlemen, it's a new superhero, FIBRO WOMAN.
Okay, okay, I'm not ignorant, I get it. They are trying to sell a product and it's their job to make it sound like it's a cure for fibro, cancer, and world hunger, and a downright gift from God himself. I get it. But it's just so misleading and inaccurate. I've yet to meet someone on Lyrica or any other single medication whose pain and other symptoms simply vanished. And if that were the case, I'd be hard pressed not to question if they were diagnosed correctly.
I'm currently on Lyrica, and it's helped. By helped, I mean it's taken my pain from a 9 or 8 to a 7, or a 6 on a good day. And that's in combination with tramadol, a sleeping pill, some medication generally used for Parkinson's, and who knows what other prescriptions (I try to take as few as possible). It's also in combination with the 23987429387 brazillion supplements I take, my physical therapy, my healthy(ish) diet, and my overall positive attitude. All of that money for my pain to drop by a point or two. Sigh.
I was once sitting in a room with my Resident Advisor who was aware of my fibromyalgia when the Lyrica commercial came on. "Have you tried that?" she asked, with a look of eagerness to help (after all, she had just discovered that Lyrica practically brings about world peace). I told her I was currently taking it.
"Does it help?"
I begrudgingly responded with my Likert pain scale.
"Well how long have you been taking it? It probably just hasn't had time to take full effect yet. I'm sure if you give it time you'll be back to normal in a few weeks!"
/headdesk
/facepalm
smh
Whatever internet expression of frustration and disappointment you prefer.
No, Anne, Lyrica is not the source of rainbows and butterflies. It will not ensure every fluffy puppy goes to bed with shelter and food tonight, it is not the answer to the inevitable and impending zombie apocalypse, and it is not a cure for Fibrolmyalgia - primarily because, at present, there is no cure.
To be clear, I actually love my RA (not to be confused with my RA doctor!). She's the sweetest, most genuine person ever who is actually very bright. But she also happened to be involved in a big reason why I hate this commercial. :)
Like most things in life, I wish fibromyalgia was as easy as it is on TV. Where's my hardhat and blue prints? :(
Alright, roommate is back and we have our senior seminar presentation to put together. Positive thoughts to anyone going through a particularly rough time right now, and air hugs to all of those Fibrobots out there!
Toodles!
Generic Symptom Lists
I'm unsure as to how often I'll be writing this week, as it's Midterm week and I'm going to be putting forth all of my energy toward not stressing out too much so that a bad flare doesn't follow. Feeling a bit incoherent today, but here's a little something :)
I don't know if I'm alone in this, or perhaps due to my age and inexperience I simply previously had a very naive perspective in this regard, but I just don't care for generic lists explaining medical conditions.
When I was first told my diagnoses was "probable fibromyalgia," I, of course, went home and looked it up straight away. What I found was that many internet sources listed the following symptoms: widespread pain, fatigue, sleeping difficulties, and anxiety and/or depression. Some sites would specify in more detail what sort of pain, such as stiffness, joint pain, muscle pain, ect... Other sites would include additional symptoms such as headaches, irritable bowel syndrome, and concentration difficulty.
I remember thinking "Hm. Well, good, this seems manageable." At this point, I was still thinking medications would have me up and out of bed and feeling great again in no time! How wrong I was.
To reiterate, it was probably naive of me in failing to fully grasp the severity of the symptoms, but on paper, it just seemed so much easier and simpler than it actually turned out to be. Truth be told, I really did not think much of the diagnoses. At least not until things became worse, not better, even with medication.
Another grievance I have is how many symptoms are left out of those lists, such as dizziness, disequilibrium, muscle spams, twitches, jerks, tremors, and all of the various sensitivities. Just to name a few. Or that the symptoms of fibromyalgia have the ability to cause additional symptoms themselves.
For example, I, like many others with fibro, experience hypersensitivity to light, sound, and smell (some people also experience sensitivity to taste). This is something often not included in symptoms lists, and I thought I was going crazy when it began. Even more scarcely mentioned are the symptoms sensory overload may cause as a result. One such possible symptoms is syncope, or fainting, a symptom which I have grown to become quite familiar with.
Now, don't get me wrong - I know those generic symptoms are meant to be general and used as a brief overview of what certain medical conditions are like, or entail. I also understand that if you have a certain illness, it's your personal responsibility to educate yourself and do further research.
But let's be realistic here: if someone tells you they have a disease you don't know much about, you're probably going to go onto one of these sites and glance at this generic list, and unless something like paralysis or death is listed, you're likely not going to think much of it. My qualm is that when people do this upon learning I have fibromyalgia, while they think they now possess a greater understanding about what I'm going through, I know that they still have no idea.
What I've learned is that you don't really "get" the sufferings and daily obstacles an illness entails until you take the time to read or listen to those who suffer from it themselves. Sufferers tend to tell quite a different story than generic lists do.
Upon making this revelation, I found myself hanging out in forums of all sorts of illnesses I thought I previously understood. It was quite an eye opening and humbling experience, and I suggest you do the same, especially in the event that you meet someone with any sort of illness.
In depth, count-by-count explanations about "A Day in the Life" of someone with (insert illness here) is often such an enlightening experience, whether you can relate to it or not (which probably explains the success and popularity of The Spoon Theory). Even articles attempting to explain the effects of these symptoms can't begin to suffice compared to a raw explanation from a sufferer.
In the end, "widespread pain" doesn't begin to cover the nights where pain prevents me from falling asleep for hours, or how it wakes me up crying, or how the shower can sometimes be one of the most painful and stressful experiences of my day. It doesn't explain how it can keep you bedridden for days, leaving you to feel like an empty shell of the human being you once were.
"Sensitivity to Sound" doesn't begin to describe the inconvenience, frustration, physical discomforts, embarrassment, and even danger of the time I fainted at a conference in the middle of a speech by my favorite speaker.
"Concentration Difficulty" can't truly describe the anxiety and anger of a weakened word recall when my professor calls on my during class, or the embarrassment of constantly forgetting entire conversations, or a diminished comprehension leaving me unable to even read or write a sentence at times.
I could go on, but I think you get the point. If you truly care to understand how a person suffers due to illness - if you truly want to understand what it's like to spend a day in their shoes - then just listen to them. Don't undermine their agony and distress by visiting sites listing symptoms written by authors who've never experienced the symptoms themselves, and then go on assuming you know all there is to know about their day-to-day struggles. These lists just don't do the plight of the sufferer justice.
Once you make an honest effort to understand someone, I believe you'll find that a multitude of opportunities to learn, grow, and connect with others will present themselves.
I don't know if I'm alone in this, or perhaps due to my age and inexperience I simply previously had a very naive perspective in this regard, but I just don't care for generic lists explaining medical conditions.
When I was first told my diagnoses was "probable fibromyalgia," I, of course, went home and looked it up straight away. What I found was that many internet sources listed the following symptoms: widespread pain, fatigue, sleeping difficulties, and anxiety and/or depression. Some sites would specify in more detail what sort of pain, such as stiffness, joint pain, muscle pain, ect... Other sites would include additional symptoms such as headaches, irritable bowel syndrome, and concentration difficulty.
I remember thinking "Hm. Well, good, this seems manageable." At this point, I was still thinking medications would have me up and out of bed and feeling great again in no time! How wrong I was.
To reiterate, it was probably naive of me in failing to fully grasp the severity of the symptoms, but on paper, it just seemed so much easier and simpler than it actually turned out to be. Truth be told, I really did not think much of the diagnoses. At least not until things became worse, not better, even with medication.
Another grievance I have is how many symptoms are left out of those lists, such as dizziness, disequilibrium, muscle spams, twitches, jerks, tremors, and all of the various sensitivities. Just to name a few. Or that the symptoms of fibromyalgia have the ability to cause additional symptoms themselves.
For example, I, like many others with fibro, experience hypersensitivity to light, sound, and smell (some people also experience sensitivity to taste). This is something often not included in symptoms lists, and I thought I was going crazy when it began. Even more scarcely mentioned are the symptoms sensory overload may cause as a result. One such possible symptoms is syncope, or fainting, a symptom which I have grown to become quite familiar with.
Now, don't get me wrong - I know those generic symptoms are meant to be general and used as a brief overview of what certain medical conditions are like, or entail. I also understand that if you have a certain illness, it's your personal responsibility to educate yourself and do further research.
But let's be realistic here: if someone tells you they have a disease you don't know much about, you're probably going to go onto one of these sites and glance at this generic list, and unless something like paralysis or death is listed, you're likely not going to think much of it. My qualm is that when people do this upon learning I have fibromyalgia, while they think they now possess a greater understanding about what I'm going through, I know that they still have no idea.
What I've learned is that you don't really "get" the sufferings and daily obstacles an illness entails until you take the time to read or listen to those who suffer from it themselves. Sufferers tend to tell quite a different story than generic lists do.
Upon making this revelation, I found myself hanging out in forums of all sorts of illnesses I thought I previously understood. It was quite an eye opening and humbling experience, and I suggest you do the same, especially in the event that you meet someone with any sort of illness.
In depth, count-by-count explanations about "A Day in the Life" of someone with (insert illness here) is often such an enlightening experience, whether you can relate to it or not (which probably explains the success and popularity of The Spoon Theory). Even articles attempting to explain the effects of these symptoms can't begin to suffice compared to a raw explanation from a sufferer.
In the end, "widespread pain" doesn't begin to cover the nights where pain prevents me from falling asleep for hours, or how it wakes me up crying, or how the shower can sometimes be one of the most painful and stressful experiences of my day. It doesn't explain how it can keep you bedridden for days, leaving you to feel like an empty shell of the human being you once were.
"Sensitivity to Sound" doesn't begin to describe the inconvenience, frustration, physical discomforts, embarrassment, and even danger of the time I fainted at a conference in the middle of a speech by my favorite speaker.
"Concentration Difficulty" can't truly describe the anxiety and anger of a weakened word recall when my professor calls on my during class, or the embarrassment of constantly forgetting entire conversations, or a diminished comprehension leaving me unable to even read or write a sentence at times.
I could go on, but I think you get the point. If you truly care to understand how a person suffers due to illness - if you truly want to understand what it's like to spend a day in their shoes - then just listen to them. Don't undermine their agony and distress by visiting sites listing symptoms written by authors who've never experienced the symptoms themselves, and then go on assuming you know all there is to know about their day-to-day struggles. These lists just don't do the plight of the sufferer justice.
Once you make an honest effort to understand someone, I believe you'll find that a multitude of opportunities to learn, grow, and connect with others will present themselves.
Thursday, March 1, 2012
Fibrobotics?
What
is fibrobotics, you ask?
To answer that, we must first assess how the term “fibrobot” came to be.
It is a long standing joke in my family that I lack emotions and am reminiscent of a “robot.” You see, I am quite difficult to anger. Even when I am angry, it often goes undetected due to my uncanny ability to be facetious. I believe feeling anger and acting angry are two very separate things. You can’t always help how you feel – but you can control how you express it and act about it. So, when angry, I act and speak in jest in order to make others and (especially) myself laugh and more comfortable. And it works, every time.
It’s the same with being sad or nervous. In fact, the only time others have ever seen me cry has been due to death of loved ones. But by and large, to those around me, it seems as if I never experience emotions considering my lack of their expression. My feelings, positive or negative, are extremely private to me.
As you may have deduced from previous posts, it takes a lot to alarm me, even with my body. I (wrongly) assume most symptoms are normal and not a big deal and I don’t want to make a fuss out of them. I adapt extremely well, and silently and privately accept things as they are and make adjustments accordingly. This, too, has lead to speculations of my secret life as an android.
I am also very logically driven and lean toward science, evidence, and other analytical processes. I am inquisitive, calculating, and perspicacious, and none of this helps my cause to culminate comparisons to an automation.
Thus, references to my being a cybernetic organism is a frequent occurrence among my circle of family and friends.
Alas, Cyborg I am not.
I just am - I happy, laid back, and possess an unquenchable thirst for knowledge about the wonders of the world; but I digress.
Upon my diagnosis and becoming more involved in the fibromyalgia community, I noticed all of the charming little nicknames used for those with fibro, such as fibromites, fibromyalgics, spoonies – you catch my drift. However, none of these seemed fitting for me.
Then one day, an odd conversation with my cousin lead to the use of the words “Fibromyalgia” and “robot” in the same sentence. Instead, I inadvertently blurted out “fibrobot”. It’s simple accidental portmanteau really, but with fibromyalgia, I believe such speech blunders as involuntary portmanteau, spoonerism, malapropism, and metathesis occur more frequently - so I like to blame this on my fibro fog.
“That’s what you should call yourself – a fibrobot,” my cousin said.
After some discussion, we decided the term to be quite fitting due to my “robot tendencies,” not only for me, but perhaps anyone with fibromyalgia.
For example, with FM, you feel everything – everything - from every drop of water dispensed from the shower faucet or pouring from a rain cloud, to every sensation of the wind, to every hair movement and beyond – our bodies feel everything.
A robot, on the other hand, feels nothing.
With fibromyalgia, you lack much, if any, control. There is no control of when your flares occur, of good days or bad. No control of the severity of your pain, what kind of pain, or where it hurts. There is no control as to what medications will work for you. There is no control of what symptoms you experience and those which you do not. There is no control over your energy or how many spoons you possess for the day. There is no control of what plans you will be able to keep, and those which you will be forced to cancel last minute. There is no control in discovering a cure. Okay, maybe no control is too strong, but it is minimal.
Bottom line: There is very little control over a life with fibromyalgia.
Ahh, but a robot is very much in control. It is programmed to be productive and efficient and is equipped with the intricate processes to work accordingly (in theory).
Plus, robots are just plain cool.
Ergo, fibrobotics, to Fiona and company, is a way of taking on the ways of the humanoid. Less negative emotion and feeling. More control.
Now that’s not to say the objective is to adopt all of the ways of the bionic person. Even if that were plausible, the purpose is not to be completely devoid of emotion or feeling – it’s about finding a balance. Again, less negative emotion and feeling, more control.
Fibrobotics is about the steps along the way to achieving these goals, and Fibrobot is my label of anyone suffering from this debilitating illness who is striving to overcome it, accomplish these objectives, and reclaim their life.
And I like to think everyone with fibromyalgia is a fibrobot. :)
To answer that, we must first assess how the term “fibrobot” came to be.
It is a long standing joke in my family that I lack emotions and am reminiscent of a “robot.” You see, I am quite difficult to anger. Even when I am angry, it often goes undetected due to my uncanny ability to be facetious. I believe feeling anger and acting angry are two very separate things. You can’t always help how you feel – but you can control how you express it and act about it. So, when angry, I act and speak in jest in order to make others and (especially) myself laugh and more comfortable. And it works, every time.
It’s the same with being sad or nervous. In fact, the only time others have ever seen me cry has been due to death of loved ones. But by and large, to those around me, it seems as if I never experience emotions considering my lack of their expression. My feelings, positive or negative, are extremely private to me.
As you may have deduced from previous posts, it takes a lot to alarm me, even with my body. I (wrongly) assume most symptoms are normal and not a big deal and I don’t want to make a fuss out of them. I adapt extremely well, and silently and privately accept things as they are and make adjustments accordingly. This, too, has lead to speculations of my secret life as an android.
I am also very logically driven and lean toward science, evidence, and other analytical processes. I am inquisitive, calculating, and perspicacious, and none of this helps my cause to culminate comparisons to an automation.
Thus, references to my being a cybernetic organism is a frequent occurrence among my circle of family and friends.
Alas, Cyborg I am not.
I just am - I happy, laid back, and possess an unquenchable thirst for knowledge about the wonders of the world; but I digress.
Upon my diagnosis and becoming more involved in the fibromyalgia community, I noticed all of the charming little nicknames used for those with fibro, such as fibromites, fibromyalgics, spoonies – you catch my drift. However, none of these seemed fitting for me.
Then one day, an odd conversation with my cousin lead to the use of the words “Fibromyalgia” and “robot” in the same sentence. Instead, I inadvertently blurted out “fibrobot”. It’s simple accidental portmanteau really, but with fibromyalgia, I believe such speech blunders as involuntary portmanteau, spoonerism, malapropism, and metathesis occur more frequently - so I like to blame this on my fibro fog.
“That’s what you should call yourself – a fibrobot,” my cousin said.
After some discussion, we decided the term to be quite fitting due to my “robot tendencies,” not only for me, but perhaps anyone with fibromyalgia.
For example, with FM, you feel everything – everything - from every drop of water dispensed from the shower faucet or pouring from a rain cloud, to every sensation of the wind, to every hair movement and beyond – our bodies feel everything.
A robot, on the other hand, feels nothing.
With fibromyalgia, you lack much, if any, control. There is no control of when your flares occur, of good days or bad. No control of the severity of your pain, what kind of pain, or where it hurts. There is no control as to what medications will work for you. There is no control of what symptoms you experience and those which you do not. There is no control over your energy or how many spoons you possess for the day. There is no control of what plans you will be able to keep, and those which you will be forced to cancel last minute. There is no control in discovering a cure. Okay, maybe no control is too strong, but it is minimal.
Bottom line: There is very little control over a life with fibromyalgia.
Ahh, but a robot is very much in control. It is programmed to be productive and efficient and is equipped with the intricate processes to work accordingly (in theory).
Plus, robots are just plain cool.
Ergo, fibrobotics, to Fiona and company, is a way of taking on the ways of the humanoid. Less negative emotion and feeling. More control.
Now that’s not to say the objective is to adopt all of the ways of the bionic person. Even if that were plausible, the purpose is not to be completely devoid of emotion or feeling – it’s about finding a balance. Again, less negative emotion and feeling, more control.
Fibrobotics is about the steps along the way to achieving these goals, and Fibrobot is my label of anyone suffering from this debilitating illness who is striving to overcome it, accomplish these objectives, and reclaim their life.
And I like to think everyone with fibromyalgia is a fibrobot. :)
Wednesday, February 29, 2012
Fibromyalgia.
Finally,
my fibro story.
I’ll make this as short and sweet as possible.
I don’t know exactly when it starte, since the beginning of my pain was very sporadic and isolated, and I didn’t experience a full flare until November 2011. I'm not too sure if all of this is fibro related, but I did have various conditions I was diagnosed which are definitely similar to symptoms of fibro. So here’s a bit of a time line.
Age 12: I am diagnosed with ADD. I would slip up in weird ways, such as doing my homework, but forgetting to turn it in. Medication helps immensely.
Age 13: I begin to experience extreme knee pain during basketball and dance. No one can figure out what’s wrong. I adjust and push through it.
Age 14: I begin experiencing joint pain not only in the left knee, but in both shoulders and right ankle. Again, no one can figure this out. It is assumed to be something genetic, since my father has had surgeries on both of his shoulders, one of his ankles, and has knee problems.
Age 16: I begin having intense jaw pain which often causes headaches. My jaw also begins to pop and lock up frequently. I am diagnosed with TMJ and purchase a $1,000 splint to help, but unfortunately lose it at work two weeks later when taking it out to speak to a customer (the splint gave me a crazy lisp). Due to how expensive it is, we do not purchase another splint, and I figure out how to adjust by quitting certain habits that noticeably aggravated my condition.
Also diagnosed with Meniere’s Disease (I find this worth mentioning here due to MD symptoms overlap with Fibro symptoms).
Age 19: Diagnosed with Ulcerative Colitis. Like MD, I mention this due to a symptom of Fibromyalgia being irritable bowel syndrome.
I also begin experiencing excruciating hip pain. I am an assistant manager at my job and on my feet all day and the pain is interfering with my work. I can hardly stand up straight after a few hours. Go to the doctor, and no dice as to what it could be.
Then I begin experiencing pain in my hands and wrists, all the while still experiencing pain in the previously mentioned joints. Finally, a Rheumatologist declares it arthritis associated with my UC. Medications do not seem to work.
I am having difficulties sleeping. I will lay in bed, eyes closed and covered with an eye mask, no sound, and will not be able to fall asleep until 1-4 hours after lying down. Once asleep, I wake up frequently. This is due to reasons unknown and also due to pain in my wrists and hips. Sleep studies are ordered. I am diagnosed with insomnia.
Age 20: Wake up sick with a fever. After a week, the fever breaks, but still feel sick. Become winded just putting on my make up and drying my hair. Same day, standing up in the shower exhausts me and causes me to feel faint and the feeling of water against my skin hurts. Go to UrgentCare. Doctor says it’s my UC flaring up and prescribes predisone.
While he said it was due to a UC flare, I had been in near-total remission of my UC for nearly a year and was currently having no UC symptoms. Feeling the same after finishing predisone, I head to my primary doctor.
He orders blood work, the results of which all come back immaculate. He suggests, mainly due to my pain when showering, fibromyalgia as a possibility. Initially, I refuse to accept this diagnoses, as I am one who needs to see evidence, so I push for further testing.
I have frequent appointments with my primary doctor, and seek a second opinion from another family doctor who also suggests fibro. I go to my gastro to see if he thinks my joint pain is arthritis associated with UC and if my current symptoms are just a flare up as the UrgentCare doctor suggested. He says arthritis associated with UC is not as widespread as I am experiencing, and he also suggests fibromyalgia upon hearing my symptoms and checking for trigger points. Go to a neurologist. She has no clue what’s going on, but orders test after test to rule out diseases such as Lupus, MS, ALS, and Parkinson’s. All tests come back negative. Go get a second and a third opinion from two other Rheumatologists. Both suggest fibromyalgia, and one is sure of it after ruling out Lyme Disease.
I did not inform any of these doctors that fibromyalgia had been suggested (mainly because I was so stubborn to accept the diagnoses myself). All sent me through an ungodly amount of testing and I was going in for blood work on a nearly bi-weekly basis.
January 2012: I finally accept my diagnoses of Fibromyalgia.
In less than a month I went from running 3 miles 4-6 days a week and lifting weights 3-4 days a week, to being bedridden and bound to a wheelchair or walker my entire Christmas break. My social life consisted of my parents and my doctors appointments. And all of it happened before my last semester of university.
So now, with graduation looming near, I am determined to graduate. My fibromyalgia is severe, and I’ve yet to find an effective treatment, but I will do it. I pinky promised myself I would - so you know it's serious.
I’ll make this as short and sweet as possible.
I don’t know exactly when it starte, since the beginning of my pain was very sporadic and isolated, and I didn’t experience a full flare until November 2011. I'm not too sure if all of this is fibro related, but I did have various conditions I was diagnosed which are definitely similar to symptoms of fibro. So here’s a bit of a time line.
Age 12: I am diagnosed with ADD. I would slip up in weird ways, such as doing my homework, but forgetting to turn it in. Medication helps immensely.
Age 13: I begin to experience extreme knee pain during basketball and dance. No one can figure out what’s wrong. I adjust and push through it.
Age 14: I begin experiencing joint pain not only in the left knee, but in both shoulders and right ankle. Again, no one can figure this out. It is assumed to be something genetic, since my father has had surgeries on both of his shoulders, one of his ankles, and has knee problems.
Age 16: I begin having intense jaw pain which often causes headaches. My jaw also begins to pop and lock up frequently. I am diagnosed with TMJ and purchase a $1,000 splint to help, but unfortunately lose it at work two weeks later when taking it out to speak to a customer (the splint gave me a crazy lisp). Due to how expensive it is, we do not purchase another splint, and I figure out how to adjust by quitting certain habits that noticeably aggravated my condition.
Also diagnosed with Meniere’s Disease (I find this worth mentioning here due to MD symptoms overlap with Fibro symptoms).
Age 19: Diagnosed with Ulcerative Colitis. Like MD, I mention this due to a symptom of Fibromyalgia being irritable bowel syndrome.
I also begin experiencing excruciating hip pain. I am an assistant manager at my job and on my feet all day and the pain is interfering with my work. I can hardly stand up straight after a few hours. Go to the doctor, and no dice as to what it could be.
Then I begin experiencing pain in my hands and wrists, all the while still experiencing pain in the previously mentioned joints. Finally, a Rheumatologist declares it arthritis associated with my UC. Medications do not seem to work.
I am having difficulties sleeping. I will lay in bed, eyes closed and covered with an eye mask, no sound, and will not be able to fall asleep until 1-4 hours after lying down. Once asleep, I wake up frequently. This is due to reasons unknown and also due to pain in my wrists and hips. Sleep studies are ordered. I am diagnosed with insomnia.
Age 20: Wake up sick with a fever. After a week, the fever breaks, but still feel sick. Become winded just putting on my make up and drying my hair. Same day, standing up in the shower exhausts me and causes me to feel faint and the feeling of water against my skin hurts. Go to UrgentCare. Doctor says it’s my UC flaring up and prescribes predisone.
While he said it was due to a UC flare, I had been in near-total remission of my UC for nearly a year and was currently having no UC symptoms. Feeling the same after finishing predisone, I head to my primary doctor.
He orders blood work, the results of which all come back immaculate. He suggests, mainly due to my pain when showering, fibromyalgia as a possibility. Initially, I refuse to accept this diagnoses, as I am one who needs to see evidence, so I push for further testing.
I have frequent appointments with my primary doctor, and seek a second opinion from another family doctor who also suggests fibro. I go to my gastro to see if he thinks my joint pain is arthritis associated with UC and if my current symptoms are just a flare up as the UrgentCare doctor suggested. He says arthritis associated with UC is not as widespread as I am experiencing, and he also suggests fibromyalgia upon hearing my symptoms and checking for trigger points. Go to a neurologist. She has no clue what’s going on, but orders test after test to rule out diseases such as Lupus, MS, ALS, and Parkinson’s. All tests come back negative. Go get a second and a third opinion from two other Rheumatologists. Both suggest fibromyalgia, and one is sure of it after ruling out Lyme Disease.
I did not inform any of these doctors that fibromyalgia had been suggested (mainly because I was so stubborn to accept the diagnoses myself). All sent me through an ungodly amount of testing and I was going in for blood work on a nearly bi-weekly basis.
January 2012: I finally accept my diagnoses of Fibromyalgia.
In less than a month I went from running 3 miles 4-6 days a week and lifting weights 3-4 days a week, to being bedridden and bound to a wheelchair or walker my entire Christmas break. My social life consisted of my parents and my doctors appointments. And all of it happened before my last semester of university.
So now, with graduation looming near, I am determined to graduate. My fibromyalgia is severe, and I’ve yet to find an effective treatment, but I will do it. I pinky promised myself I would - so you know it's serious.
Tuesday, February 28, 2012
Ulcerative Colitis.
At the end of my freshman year of college, just hours after having moved out of my dorm, I began feeling sick.
And I was sick for two whole weeks. Very sick. Given that I have no spleen, I have to be extra cautious, so whenever my fever hits 101, I have to go into the hospital for monitoring. During this particular sickness, I was in and out of the ER on several occasions.
Alas, the fever finally broke, and all was returning to normal. Well, not completely. I was still having diarrhea. I figured it'd pass soon, so I thought nothing of it.
One month later: Still having diarrhea on occasion. Now with more urgency. And a little constipation thrown in just for fun.
Three months after sickness: All of the above, plus severe abdominal pain. More irregularities in bowel movement and habit, I was going more frequently and texture was different. I also experienced irregularities that I've yet been able to efficiently explain.
At five months, it became obvious to me something was really wrong. But given the content (is that the word?) of the situation, I told no one.
My sophomore year of college, I was in a school apartment and had no relationship with my roommate, so keeping this problem a secret was no problem since I had my own bathroom. My parents were also able to remain oblivious, but I had to let my boyfriend in on what was going on. I told him I was having bowel problems and we left it at that. It's the only time I ever spoke of it.
I knew I needed to get checked out, but I knew that meant I'd have to have a colonoscopy.
Being a psychology major (and someone who studies psychology more on her own than at school), I am well aware of the process of desensitization. But I swear it only makes it worse for me. When I lived in the "city" I was never around bugs, but when I saw them, I loved them. All of them. I picked them up and played with them without hesitation.
Then I moved to the country. Bugs. Everywhere. All of the time. The same bugs I'd always been fond of. Suddenly, instant phobia. Even of, and especially of, bugs with wings - not excluding butterflies or lady bugs here, either.
As I began to study psychology and become familiar with desensitization, I worked with my roommate to overcome this phobia. Efforts were futile.
With some things, however, I'm unable to even truly try to desensitize. An example of this would be surgery.
In the hospital, I underwent nearly 20 surgeries. I am no stranger to this. But with each surgery came more fear. Anything resembling surgery and I lose my shit (no pun intended).
Well, a colonoscopy is certainly no exception. Not that anyone really fancies colonoscopies.
Regardless, I dealt with my pain alone for a year and a half after first experiencing the symptoms, which were relentless and progressively growing worse.
Then, one day, I arrived home from work. It was around 9 a.m. I had worked the night shift and spent the entire night up on the roof with one of my employees/friends.
I was ready to crash when I got home, but I wanted to keep my best friend, Kayla, updated on the night while my memories were still fresh. The "employee/friend" was also a target for me in more personal matters.
I wrote out the message and sent it to Kayla over facebook. I then closed my laptop.
"Boop" - someone IMed me on Facebook chat. Usually, I'd ignore this and keep the laptop closed. But this time, for some reason, despite being exhausted and after some hesitation, I opened my laptop back up.
It was my other best friend, Sarah: "Do you know what's happening with Kay?"
I won't go into detail now because I know I'll make a few posts about this at some point, but basically, Sarah had just found out that our dear friend Kayla had been in an accident.
We spent the next few days in hospital waiting rooms and at the Kayla's bed side until she passed.
I was devastated.
Almost immediately, I experienced a new change in my bowel habit - blood.
I ignored this at first, until there was finally enough blood to alarm even my aloof self. I googled it, and Sir Google seemed to think this a fairly urgent problem. So, I begrudgingly let my mom in on what was happening and what had been happening for the last year and a half.
Appointments were made with several Gastroenterologists. I quickly decided I did not want a male, meaning my mom's gastro, who is also attractive, was out. Thus, we turned to a doctor we had no experience with, but who was highly recommended.
We were paying the rates of appointments with the actual doctor, yet every time we were sent to her P.A. (I think that's what they're called?). The colonoscopy was scheduled for two months from then.
I never even met the doctor performing the colonoscopy until the day of. She was an older, tiny, silly lady. She was straight and to the point, but also very silly, which is a good thing because I do nothing but joke when I'm nervous or in any sort of distress.
Turns out, the procedure was a breeze - the prep, well, that's another post for another day.
The doctor told us a bit about what she'd found, and explained she took a biopsy of the lesions. At this point, we didn't know much.
Finally, we received the call confirming the results about a week later. I forget exactly what they said to my mom, but my mom did specifically ask, "Okay, so she doesn't have Ulcerative Colitis or Crohn's or anything?" The caller then confirmed that I tested negative for any diseases. Cool.
We still had a follow up appointment the following week after the call. We go in, and of course, no doctor. Again. Despite the payment to see the actual doctor.
The nurse begins going through what was found in the colonoscopy and after a few minutes she nonchalantly says, "So you have Ulcerative Colitis and this is what we're going to do."
Say what? Run through that one more time for me.
I had little knowledge about UC, so my mom took over the conversation with a stern "We were told she tested negative for any diseases." Again, nonchalantly the nurse says, "No, she tested positive."
"But when your office called with the results, they said negative. I double checked on that fact and even specifically mentioned Ulcerative Colitis."
"Well I don't know anything about that."
"So my daughter has a disease, and because of your office, we thought she was in the clear for the past two weeks. And if we chose not to come back because someone at your office said she was fine? What then?"
You see, my mom made sure to ask this because two of my aunt's have UC, one has Crohn's, and another has Colon Cancer. One of them even has a j-pouch. So, my bloodline is not exactly equipped with healthy colons.
Despite the doctor being so nice and friendly, none of her P.A.'s were pleasant at any of our appointments. This particular nurse was not bothered at all by the fact that false information was given to us. I know the mistake was probably not hers and that she was likely not the woman who called with the results - but still, show some remorse, or some worry that we were given false information about something as important as an autoimmune disease. That is a PROBLEM. At least act like you want to fix it.
Anyway, so there it was. Disease number two. I was 19 at the time of the official diagnoses, 18 when the symptoms started.
A bit on a rant about this doctor - At this same appointment, I was given a lot of instructions as to what to do. I was prescribed suppositories and some other huge pills, which I was to take three times a day. Then, I was told to change my diet. I was not allowed to eat fruits or vegetables or anything wheat or with grains. The nurse told me I was to be on this unhealthy (her words) diet for 6 months, at which point I would come in for another colonoscopy.
Two huge problems with this diet.
First, I am a vegetarian. You take away fruits and vegetables, and you're basically leaving me with mac 'n cheese and mashed potatoes here. A subproblem here is that I also have food neophobia, meaning I don't eat much variety to begin with.
Secondly, I was raised on wheat bread and brown rice, and anything of the like. My parents raised me on the healthier alternatives of things, and I cannot even stomach white bread or white rice.
This diet was ridiculously unhealthy.
After a few weeks on it, I was actually losing weight because I simply did not eat. There was nothing for me to eat! I was absolutely miserable and felt awful, so I finally conceded to give my mom's male gastro another try.
My mom's gastro is... about 6'6", blonde hair, blue eyes, athletic build, pretty face, fairly young, and armed with intelligence, wit, gentle hands, and genuine kindness. Every time I see him, I have to do everything I can to refrain from gazing into his dreamy eyes over a foot above me and saying "You're pretty" to him.
This is not the sort of man I want searching up my butt and talking to me about my poop. No sir. Add all of this on top of the fact that I already have an issue with male doctors (which will probably be explained later), I did not want to go.
But I didn't know what else to do. So I dragged my feet to his office. He looked over the results of my colonoscopy and we told him everything that happened with the other doctor. He immediately took me off the lousy diet, and told me to simply listen to my body and what makes it react unfavorably (he suggested a food journal). Then he took me off of the million times a day horse pills.
He told me to stick to the suppositories and one other, once a day pill, and basically said I don't need to have another colonoscopy unless my condition worsens or something new occurs. Other than that, I may have one as a check-up sort of thing, but not for at least two years.
I told him that I had nothing against him, but that I would feel uncomfortable with him doing a colonoscopy, at which point he said I could have my appointments with him, but at the time of a colonoscopy he could have his female partner in his practice do it.
So, there you have it. The frustrating story of my diagnoses of Ulcerative Colitis.
I like to think that, in a way, Kayla was pushing me to finally seek help. If not for the blood, I would have ignored this problem for who knows how long. I know it was simply the stress of losing her that aggravated my ulcers enough to produce blood in my stool, but Kayla was going to nursing school, so I just like to believe this was her way of knocking some sense into me. :)
And I was sick for two whole weeks. Very sick. Given that I have no spleen, I have to be extra cautious, so whenever my fever hits 101, I have to go into the hospital for monitoring. During this particular sickness, I was in and out of the ER on several occasions.
Alas, the fever finally broke, and all was returning to normal. Well, not completely. I was still having diarrhea. I figured it'd pass soon, so I thought nothing of it.
One month later: Still having diarrhea on occasion. Now with more urgency. And a little constipation thrown in just for fun.
Three months after sickness: All of the above, plus severe abdominal pain. More irregularities in bowel movement and habit, I was going more frequently and texture was different. I also experienced irregularities that I've yet been able to efficiently explain.
At five months, it became obvious to me something was really wrong. But given the content (is that the word?) of the situation, I told no one.
My sophomore year of college, I was in a school apartment and had no relationship with my roommate, so keeping this problem a secret was no problem since I had my own bathroom. My parents were also able to remain oblivious, but I had to let my boyfriend in on what was going on. I told him I was having bowel problems and we left it at that. It's the only time I ever spoke of it.
I knew I needed to get checked out, but I knew that meant I'd have to have a colonoscopy.
Being a psychology major (and someone who studies psychology more on her own than at school), I am well aware of the process of desensitization. But I swear it only makes it worse for me. When I lived in the "city" I was never around bugs, but when I saw them, I loved them. All of them. I picked them up and played with them without hesitation.
Then I moved to the country. Bugs. Everywhere. All of the time. The same bugs I'd always been fond of. Suddenly, instant phobia. Even of, and especially of, bugs with wings - not excluding butterflies or lady bugs here, either.
As I began to study psychology and become familiar with desensitization, I worked with my roommate to overcome this phobia. Efforts were futile.
With some things, however, I'm unable to even truly try to desensitize. An example of this would be surgery.
In the hospital, I underwent nearly 20 surgeries. I am no stranger to this. But with each surgery came more fear. Anything resembling surgery and I lose my shit (no pun intended).
Well, a colonoscopy is certainly no exception. Not that anyone really fancies colonoscopies.
Regardless, I dealt with my pain alone for a year and a half after first experiencing the symptoms, which were relentless and progressively growing worse.
Then, one day, I arrived home from work. It was around 9 a.m. I had worked the night shift and spent the entire night up on the roof with one of my employees/friends.
I was ready to crash when I got home, but I wanted to keep my best friend, Kayla, updated on the night while my memories were still fresh. The "employee/friend" was also a target for me in more personal matters.
I wrote out the message and sent it to Kayla over facebook. I then closed my laptop.
"Boop" - someone IMed me on Facebook chat. Usually, I'd ignore this and keep the laptop closed. But this time, for some reason, despite being exhausted and after some hesitation, I opened my laptop back up.
It was my other best friend, Sarah: "Do you know what's happening with Kay?"
I won't go into detail now because I know I'll make a few posts about this at some point, but basically, Sarah had just found out that our dear friend Kayla had been in an accident.
We spent the next few days in hospital waiting rooms and at the Kayla's bed side until she passed.
I was devastated.
Almost immediately, I experienced a new change in my bowel habit - blood.
I ignored this at first, until there was finally enough blood to alarm even my aloof self. I googled it, and Sir Google seemed to think this a fairly urgent problem. So, I begrudgingly let my mom in on what was happening and what had been happening for the last year and a half.
Appointments were made with several Gastroenterologists. I quickly decided I did not want a male, meaning my mom's gastro, who is also attractive, was out. Thus, we turned to a doctor we had no experience with, but who was highly recommended.
We were paying the rates of appointments with the actual doctor, yet every time we were sent to her P.A. (I think that's what they're called?). The colonoscopy was scheduled for two months from then.
I never even met the doctor performing the colonoscopy until the day of. She was an older, tiny, silly lady. She was straight and to the point, but also very silly, which is a good thing because I do nothing but joke when I'm nervous or in any sort of distress.
Turns out, the procedure was a breeze - the prep, well, that's another post for another day.
The doctor told us a bit about what she'd found, and explained she took a biopsy of the lesions. At this point, we didn't know much.
Finally, we received the call confirming the results about a week later. I forget exactly what they said to my mom, but my mom did specifically ask, "Okay, so she doesn't have Ulcerative Colitis or Crohn's or anything?" The caller then confirmed that I tested negative for any diseases. Cool.
We still had a follow up appointment the following week after the call. We go in, and of course, no doctor. Again. Despite the payment to see the actual doctor.
The nurse begins going through what was found in the colonoscopy and after a few minutes she nonchalantly says, "So you have Ulcerative Colitis and this is what we're going to do."
Say what? Run through that one more time for me.
I had little knowledge about UC, so my mom took over the conversation with a stern "We were told she tested negative for any diseases." Again, nonchalantly the nurse says, "No, she tested positive."
"But when your office called with the results, they said negative. I double checked on that fact and even specifically mentioned Ulcerative Colitis."
"Well I don't know anything about that."
"So my daughter has a disease, and because of your office, we thought she was in the clear for the past two weeks. And if we chose not to come back because someone at your office said she was fine? What then?"
You see, my mom made sure to ask this because two of my aunt's have UC, one has Crohn's, and another has Colon Cancer. One of them even has a j-pouch. So, my bloodline is not exactly equipped with healthy colons.
Despite the doctor being so nice and friendly, none of her P.A.'s were pleasant at any of our appointments. This particular nurse was not bothered at all by the fact that false information was given to us. I know the mistake was probably not hers and that she was likely not the woman who called with the results - but still, show some remorse, or some worry that we were given false information about something as important as an autoimmune disease. That is a PROBLEM. At least act like you want to fix it.
Anyway, so there it was. Disease number two. I was 19 at the time of the official diagnoses, 18 when the symptoms started.
A bit on a rant about this doctor - At this same appointment, I was given a lot of instructions as to what to do. I was prescribed suppositories and some other huge pills, which I was to take three times a day. Then, I was told to change my diet. I was not allowed to eat fruits or vegetables or anything wheat or with grains. The nurse told me I was to be on this unhealthy (her words) diet for 6 months, at which point I would come in for another colonoscopy.
Two huge problems with this diet.
First, I am a vegetarian. You take away fruits and vegetables, and you're basically leaving me with mac 'n cheese and mashed potatoes here. A subproblem here is that I also have food neophobia, meaning I don't eat much variety to begin with.
Secondly, I was raised on wheat bread and brown rice, and anything of the like. My parents raised me on the healthier alternatives of things, and I cannot even stomach white bread or white rice.
This diet was ridiculously unhealthy.
After a few weeks on it, I was actually losing weight because I simply did not eat. There was nothing for me to eat! I was absolutely miserable and felt awful, so I finally conceded to give my mom's male gastro another try.
My mom's gastro is... about 6'6", blonde hair, blue eyes, athletic build, pretty face, fairly young, and armed with intelligence, wit, gentle hands, and genuine kindness. Every time I see him, I have to do everything I can to refrain from gazing into his dreamy eyes over a foot above me and saying "You're pretty" to him.
This is not the sort of man I want searching up my butt and talking to me about my poop. No sir. Add all of this on top of the fact that I already have an issue with male doctors (which will probably be explained later), I did not want to go.
But I didn't know what else to do. So I dragged my feet to his office. He looked over the results of my colonoscopy and we told him everything that happened with the other doctor. He immediately took me off the lousy diet, and told me to simply listen to my body and what makes it react unfavorably (he suggested a food journal). Then he took me off of the million times a day horse pills.
He told me to stick to the suppositories and one other, once a day pill, and basically said I don't need to have another colonoscopy unless my condition worsens or something new occurs. Other than that, I may have one as a check-up sort of thing, but not for at least two years.
I told him that I had nothing against him, but that I would feel uncomfortable with him doing a colonoscopy, at which point he said I could have my appointments with him, but at the time of a colonoscopy he could have his female partner in his practice do it.
So, there you have it. The frustrating story of my diagnoses of Ulcerative Colitis.
I like to think that, in a way, Kayla was pushing me to finally seek help. If not for the blood, I would have ignored this problem for who knows how long. I know it was simply the stress of losing her that aggravated my ulcers enough to produce blood in my stool, but Kayla was going to nursing school, so I just like to believe this was her way of knocking some sense into me. :)
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