I cannot believe I have not posted anything since June. I wish I could say that has because things have improved, but like the title of this post states, things have changed, but not turned around.
The last few months have been some of the worst of my life. I guess I will just start writing...Finding a logical way to discuss things seems impossible.
My fiancee, whom I was in a relationship with for over 4 years, and I have split.
Relationships are often times a casualty of the war we fight; an innocent bystander in a drive by shooting. Relationships are the first thing we need to lean on when things begin to crumble, yet somehow, they are often the first to fall apart.
I barely have had the energy to get up each morning, breathe in and out, slap a smile on, and put one foot in front of the other. Unfortunately, at the end of each long and exhausting day, there is just no money left in the meter, no gas left in the tank, no smiles or laughs left for just one more person....Lyme is like a leech, and the relationship is its victim...slowly sucking the life away and leaving an empty shell, standing alone like an abandoned and broken home.
It takes an amazing person to stand by someone suffering from chronic diseases. They have to be utterly selfless, completely supportive, and unwavering in their love and devotion to the other person.
I know that one day I will find that type of strength in a partner, whether I am sick or not, I will find it. I know jealousy is not something you are supposed to admit to feeling, but I envy my other friends with Lyme who have found that person in their life...that anchor, pillar, root, that unfaltering immutable support.
To those of you who have it, do not let go and never take that person for granted. For the rest of us, we just have to know that settling is not an option, and we are deserving, no matter what kind of hell and high seas we have sailed through in the past, to find that type of love.
I have moved into a new house across town from where I used to live. I was looking forward to this change, I thought that maybe this was going to be the turning point in this whirlpool of terror I have been swirling around in for the past 18 months.
Things have not gone as planned. To make a long story short, since my move I have lost a loving pet, become unimaginably overwhelmed with the stress of taking care of everything on my own, have decided it best to re-home one of my dogs, and to top it all off, my health has completely crashed.
And through it all, I am alone.
I know I have support. My friends have been incredible, but unfortunately there is no amount of offering to help, no number of phone calls, to make up for the gut-wrenching feeling of utter isolation and desperation.
I try to reach out, and in many ways, I have. There seems to be no amount of consolation or pats on the back or "it's going to be ok" to make the painful reality of losing yourself any less real.
I recently had someone say to me, "You have lost a lot in the last year. it's an odd thing, what you have lost. For most people, grief is about identifying an intangible concept, and understanding what impact that loss has on your life....but for you, it's almost like you have lost your life. How does one come to terms with that?"
This is at best how to describe how I feel...And part of me feels so horrible saying this, because I know that there are always people who are more sick, more sad, more fucked up, more WHATEVER, but honestly, it doesn't make the reality of your life any less different to YOU.
Here is what my reality feels like: I had a tough childhood, and had an amazing friend and mentor turn me around. I became incredibly dedicated, driven, motivated, and for the five years I was in college, can truly say not only was I happy and having fun, but I was content....satisfied. I had found myself, something I had searched for and struggled with.
I had a sense of self-worth and I valued myself and what I offered the industry I was so passionate about. There was no doubt in my mind about my past, current, and future successes and milestones, and I loved every waking moment of it all.
These diseases have taken all of that away from me...My ability to feel like ME is gone. I feel like an empty shotgun shell; there is a bit of a hard exterior, but everything that packed a punch, is gone.
When you lose something or someone you love, the grieving and mourning process often entails identifying what exactly you have lost, and how to re-structure your life and mind around the loss....Well what do you do, when the thing in life you have lost, is your life itself?
A quick health update: The last couple of months have been tough to say the least. Along with the emotional stress that comes along with moving and a breakup, physically my body has been deteriorating, and the past 10 days I have been unable to eat or drink. I've been in the ER twice, and urgent care twice, and the doctors are acknowledging my diagnoses, but have no idea what to do with me. It go to the point that the ER doctor told me that I would be best leaving Savannah and going to California to see doctors that understand my dieseases...
Well I am in California, and I still haven't determined if I am better off than I was before. I have managed to eat a little bit of food and hold down a very small amount of fluid, but am still feeling like total shit. I think I am going to head to the ER here in San Francisco and see if I receive any better treatment...if nothing else, I could use a bag of IV fluids before my blood chemistry gets completely messed up.
I am going to see my Lyme doctor tomorrow. I am starting to lose faith in everything...faith in my doctors, faight in the medical system, but mostly faith in myself that I can beat this and come back out the other side ready to pick up my life where it left off, and resume the things that mean the most to me.
Tuesday, August 9, 2011
Tuesday, June 21, 2011
LLMD Visit June 2011
Well I just got home from my appointment with my LLMD.
There is good and bad news.
Good news first: One of the four co-infections is gone according to the lab work. A second one is on its way out, so hopefully the labs will be clean when I return in the middle of September.
Bad news: My bloodwork didn't explain why my adrenal complex hormones are so out of wack, so I need to have a pituitary MRI. The endocrinology is either off because of some type of issue with my pituitary gland, or it is just neurological damage from the Lyme Disease (I really think it is the latter but we need to be sure)
Also I have these really swollen and painful lumps in my abdomen that he really does not like nor does he know what they are, so back to the specialists for that. I also have some symptoms of polycystic ovaries, so need to go to another specialist for that issue.
All in all, I am happy to finally see some visible progress, even if it is just on paper. It is almost an entire year on antibiotics, and am just starting to make some pathological progress. I just hope so so so so much that clinical progress is to follow soon, even just a little bit.
The most frustrating thing about this disease is how small these victories are. Do not get me wrong, I am SO happy to see a change in the bloodwork, I just can't help but feel a bit somber about the fact that physically I still continue to feel worse.
Yes, I am making progress, but sometimes I feel like a tiny ant trying to make it down a long human-sized street: you power forward so hard and bear the burdens of incredibly heavy loads, and when you look at the objects nearest you, they are passing and you can see that you're making progress, but when you look ahead at the finish line, you realize just how much farther you have to go until you can finally rest....
Again, I am happy to see progress, don't get me wrong. I'm just the type of person that will never be satisfied with anything until I reach my goal of being totally healthy and of being able to get the life back that I worked SO hard to build for myself.
It's amazing that an insect half the size of a pencil eraser can actually erase so much...I really HATE ticks.
Anyway, that is it for now. Some good things happening finally, and I look forward to more improvements soon...
I love you all and I will post again soon!
There is good and bad news.
Good news first: One of the four co-infections is gone according to the lab work. A second one is on its way out, so hopefully the labs will be clean when I return in the middle of September.
Bad news: My bloodwork didn't explain why my adrenal complex hormones are so out of wack, so I need to have a pituitary MRI. The endocrinology is either off because of some type of issue with my pituitary gland, or it is just neurological damage from the Lyme Disease (I really think it is the latter but we need to be sure)
Also I have these really swollen and painful lumps in my abdomen that he really does not like nor does he know what they are, so back to the specialists for that. I also have some symptoms of polycystic ovaries, so need to go to another specialist for that issue.
All in all, I am happy to finally see some visible progress, even if it is just on paper. It is almost an entire year on antibiotics, and am just starting to make some pathological progress. I just hope so so so so much that clinical progress is to follow soon, even just a little bit.
The most frustrating thing about this disease is how small these victories are. Do not get me wrong, I am SO happy to see a change in the bloodwork, I just can't help but feel a bit somber about the fact that physically I still continue to feel worse.
Yes, I am making progress, but sometimes I feel like a tiny ant trying to make it down a long human-sized street: you power forward so hard and bear the burdens of incredibly heavy loads, and when you look at the objects nearest you, they are passing and you can see that you're making progress, but when you look ahead at the finish line, you realize just how much farther you have to go until you can finally rest....
Again, I am happy to see progress, don't get me wrong. I'm just the type of person that will never be satisfied with anything until I reach my goal of being totally healthy and of being able to get the life back that I worked SO hard to build for myself.
It's amazing that an insect half the size of a pencil eraser can actually erase so much...I really HATE ticks.
Anyway, that is it for now. Some good things happening finally, and I look forward to more improvements soon...
I love you all and I will post again soon!
Wednesday, May 25, 2011
I Have Your Back
There is something that is important for everyone to realize in their life, but especially for those of us suffering from chronic illness: You cannot make everyone happy, you cannot please everyone in your life, all you can do is have the strength to get up each morning and breathe in and out, and do the best you can, and hope it is enough for the people in your life.
When you are sick, it is often times a day to day struggle just to be alive, let alone to be in charge of making others happy and satisfied.
If you are lucky enough in your life to have people who understand this concept, and who can selflessly put their own needs aside temporarily while you are fighting for your survival, DO NOT TAKE THEM FOR GRANTED.
Lyme and its other host of co-infections often feels like an anchor that is constantly trying to sink down to the bottom of the ocean with you helplessly attached. You fight to catch a breath of fresh air every day before sinking back down below the surface of the water.
You are in the fight of your life, and you cannot always expend the strength and energy to try to free others from their chains, when you yourself are imprisoned.
Sometimes the people you love and who are surrounding you during treatment become human punching bags, absorbing our anger and sadness. If they love you, they will not falter, and will continue to be an outlet for your frustrations, for they recognize it is temporary and it is not personal.
If you are blessed and fortunate enough to have people in your life who love you unconditionally, even through your brain fog, irritability, snappiness, and moments of complete despair and heartbreak, never let them go for they are almost impossible to find.
Love yourself first. Take care of your own needs. The only upside to being sick is allowing yourself to be a bit selfish. Indulge yourself in whatever small pleasures you can still enjoy. Find happiness in the smallest of things and treasure those moments.
Lyme changes you to your core afterwhich you will never be the same, and you definitely are a different person while you are fighting the disease. This does not, however, mean the changes will be for the worse.
The people in your life who love you and would do anything for you will never put you down or make you feel badly for your behavior, attitude, words, or actions while you are sick.
They will understand your need to be somewhat selfish, somewhat self indulgent, and sometimes utterly devastated and depressed, and will steadfastly support you, like the roots support the tree, like the trunk supports the branches, and like the stems support the leaves
They will not leave you or abandon you, and await the day you regain your health just as you do.
I know some of you have lost loved ones due to the storm of emotions and conflict often times stirred up by Lyme Disease, and it is devastating and hurtful.
I know that some of you feel abandoned and deserted by people who promised to be with you for better and for worse and through sickness and in health.
I know that it sometimes feels hopeless and like you are lost in a black cave, with no sign of light.
This is why it is important for us to stay together as a community and to support each other and love one another. Nobody understands what it's like to be chronically ill unless they are unfortunate enough to suffer the same fate. The relationships lost due to Lyme can be mourned, but remember there are thousands more friendships and relationships to be made with people you have never met that know exactly how you feel and always "have your back".
When you are sick, it is often times a day to day struggle just to be alive, let alone to be in charge of making others happy and satisfied.
If you are lucky enough in your life to have people who understand this concept, and who can selflessly put their own needs aside temporarily while you are fighting for your survival, DO NOT TAKE THEM FOR GRANTED.
Lyme and its other host of co-infections often feels like an anchor that is constantly trying to sink down to the bottom of the ocean with you helplessly attached. You fight to catch a breath of fresh air every day before sinking back down below the surface of the water.
You are in the fight of your life, and you cannot always expend the strength and energy to try to free others from their chains, when you yourself are imprisoned.
Sometimes the people you love and who are surrounding you during treatment become human punching bags, absorbing our anger and sadness. If they love you, they will not falter, and will continue to be an outlet for your frustrations, for they recognize it is temporary and it is not personal.
If you are blessed and fortunate enough to have people in your life who love you unconditionally, even through your brain fog, irritability, snappiness, and moments of complete despair and heartbreak, never let them go for they are almost impossible to find.
Love yourself first. Take care of your own needs. The only upside to being sick is allowing yourself to be a bit selfish. Indulge yourself in whatever small pleasures you can still enjoy. Find happiness in the smallest of things and treasure those moments.
Lyme changes you to your core afterwhich you will never be the same, and you definitely are a different person while you are fighting the disease. This does not, however, mean the changes will be for the worse.
The people in your life who love you and would do anything for you will never put you down or make you feel badly for your behavior, attitude, words, or actions while you are sick.
They will understand your need to be somewhat selfish, somewhat self indulgent, and sometimes utterly devastated and depressed, and will steadfastly support you, like the roots support the tree, like the trunk supports the branches, and like the stems support the leaves
They will not leave you or abandon you, and await the day you regain your health just as you do.
I know some of you have lost loved ones due to the storm of emotions and conflict often times stirred up by Lyme Disease, and it is devastating and hurtful.
I know that some of you feel abandoned and deserted by people who promised to be with you for better and for worse and through sickness and in health.
I know that it sometimes feels hopeless and like you are lost in a black cave, with no sign of light.
This is why it is important for us to stay together as a community and to support each other and love one another. Nobody understands what it's like to be chronically ill unless they are unfortunate enough to suffer the same fate. The relationships lost due to Lyme can be mourned, but remember there are thousands more friendships and relationships to be made with people you have never met that know exactly how you feel and always "have your back".
Wednesday, May 18, 2011
Breath and Water
Tonight the house is quiet. I hear the quiet and rythmical sounds of my dogs all breathing, all four of them in an odd harmonious and musical pattern.
The peaceful trickling sound of the filter in my fish tank almost mimics the sound of the rain pouring off the gutters in a light storm.
Night is the hardest time for me, physically and mentally. The strain of daily activities, such as walking my dogs and working for one hour, really sets in at night, like a thick fog settling thickly into a deep valley.
The joint pain, nerve firing, and brain fog seep in slowly and I feel it coming on, a blanket slowly falling down to smother a kindling ember.
I was looking through my college photos tonight. Pictures of me when Aleve still worked, when I could just mentally block out the pain, when I had my life.
Hopes and dreams and happiness are held in those photographs. They are images of a time when I was truly content for the only time in my life.
I know I have plenty of things in my life "to be thankful for" and "to live for". These are expressions I hear a lot. I just can't help but sometimes think about the life I was leading before I got sick and before my world turned upside down.
Not a day, hour, minute, or second goes by that I don't miss working livestock, that I don't miss learning, that I don't miss feeding my brain like oxygen fuels a fire.
Not a day, hour, minute, or second goes by that I don't miss San Luis Obispo and the magic that only those of us who have lived there know that place holds, and will forever hold.
I try to be strong, and in fact I have people telling me that on a daily basis. That they would never know how sick I am, I have such a tough demeanor, I always look "so pretty"...Sometimes I feel like saying to them, well I own makeup and a hair straightener....that's the trick.
Most of the time I feel like a piece of limestone: I look like a solid rock, but if you touch it in just the right place, the entire structure crumbles to small insignificant pieces of sand.
I know tonight is just a tough night, a lonely evening, and tomorrow will be a new and hopefully brighter day, but sometimes it's important to recognize your own sadness and depression.
Tomorrow I will be okay, and I will go about my day and do my best to look happy and stay strong, but tonight in the quiet of my house, listening to my dogs, the fish tank, I let the hot tears fall down my cheeks, and I mourn the days when I was healthy and happy, the sun seemed to always shine, and my hopes and dreams were reality.
The peaceful trickling sound of the filter in my fish tank almost mimics the sound of the rain pouring off the gutters in a light storm.
Night is the hardest time for me, physically and mentally. The strain of daily activities, such as walking my dogs and working for one hour, really sets in at night, like a thick fog settling thickly into a deep valley.
The joint pain, nerve firing, and brain fog seep in slowly and I feel it coming on, a blanket slowly falling down to smother a kindling ember.
I was looking through my college photos tonight. Pictures of me when Aleve still worked, when I could just mentally block out the pain, when I had my life.
Hopes and dreams and happiness are held in those photographs. They are images of a time when I was truly content for the only time in my life.
I know I have plenty of things in my life "to be thankful for" and "to live for". These are expressions I hear a lot. I just can't help but sometimes think about the life I was leading before I got sick and before my world turned upside down.
Not a day, hour, minute, or second goes by that I don't miss working livestock, that I don't miss learning, that I don't miss feeding my brain like oxygen fuels a fire.
Not a day, hour, minute, or second goes by that I don't miss San Luis Obispo and the magic that only those of us who have lived there know that place holds, and will forever hold.
I try to be strong, and in fact I have people telling me that on a daily basis. That they would never know how sick I am, I have such a tough demeanor, I always look "so pretty"...Sometimes I feel like saying to them, well I own makeup and a hair straightener....that's the trick.
Most of the time I feel like a piece of limestone: I look like a solid rock, but if you touch it in just the right place, the entire structure crumbles to small insignificant pieces of sand.
I know tonight is just a tough night, a lonely evening, and tomorrow will be a new and hopefully brighter day, but sometimes it's important to recognize your own sadness and depression.
Tomorrow I will be okay, and I will go about my day and do my best to look happy and stay strong, but tonight in the quiet of my house, listening to my dogs, the fish tank, I let the hot tears fall down my cheeks, and I mourn the days when I was healthy and happy, the sun seemed to always shine, and my hopes and dreams were reality.
Saturday, May 7, 2011
Emergency Room Visit...Again
For those of you that know me, you know I have an incredibly high pain tolerance. I will even give myself credit for my ability to compartmentalize my physical pain in order to seek out any normalcy I can find in what is left of my life...
Unfortunately, last night I hit a breaking point. My joint and nerve pain was so severe, my body was uncontrollably shaking. My resting heart rate climbed over 100 BPM, and my fever shot up to 103.
I tried to take a luke warm bath with some "calming bath salts" (what a joke that product name is). After about 20 minutes in the bathtub, nothing had improved. As I climbed out of the tub I became extremely dizzy and ended up vomiting all of my dinner I had consumed about 45 minutes prior.
As I sat soaking wet dripping both water and tears all over the cold bathroom floor, uncontrollably shaking and crying, I just had it...I couldn't take it anymore.
I've only been on these new antibiotics for a week, yet that week feels like an eternity; a blur of mind numbing pain and suffering.
Like I said, I just couldn't bear the pain for one more minute. Each second felt like forever. I am taking Lyrica, Tramadol, Vimovo, and more Vicoden than anyone should probably take, and found NO relief, no solace, no temporary comfort.
I just needed help...so I went to the Emergency Room.
The doctor was an ASSHOLE. Pardon my language, but there is no better way to describe the self righteous egotistical man that walked into my room. When I told him what I am afflicted with, his response was "Did you recently travel to Africa"?
His comment was delivered with a snide smirk, a nasty evil looking squint of his eyes that reeked of mockery and disbelief.
I looked so pathetic there...I was dwarfed by the oversized hospital bed they had put me in, shaking uncontrollably, eyes swollen and red with tears, head hung low like a sick or injured animal...And all I could say was "No." I had no strength to fight back with a powerful remark...I was already feeling beaten and broken.
He questioned my diagnoses, questioned my legitimacy as a patient, and questioned my reasons for being in the ER. He then said to me, "Well I can't fix your problems in the ER on a Friday night in Savannah, GA"...
I am still shocked at the lack of compassion, lack of understanding and empathy in some of the doctors I have encountered here in the Southern United States. It is moments like the one I had last night that make me question my faith in the medical community.
Their job is to help their patients and to LISTEN to their complaints and BELIEVE that they are real...not to bombard a young woman, obviously in a lot of pain, with disbelief and rude comments.
I ended up using my education (thank you Cal Poly Animal Science) and explained in scientific jargon my diseases, clinical presentations, my bloodwork results and titer levels and ranges, treatments, diagnoses, etc...and he finally seemed to at least believe that I was truly ill..
They ultra-sounded my gall bladder and it was reviewed by the surgeon. My bloodwork and ultrasound came back inconclusive, however I am going in for a specialized scan as soon as possible to take another look. My clinical symptoms do suggest a failure in gall bladder function. I will know more later.
I was sent home with some Percaset and a giant chip on my shoulder.
The worst thing about this disease is the disgust the general medical community has towards those of us who are inflicted with it.
It feels like saying you have Lyme Disease is like saying you have Leprosy.....Only those of us who have seen that "look" on the doctors' faces understand what I am saying...
It makes you feel like nothing, like you are alone with your illness, completely isolated from the rest of society...It is heartbreaking.
Although last night was horrible and upsetting, it does make me feel that much more thankful to have a doctor who is taking care of me and who BELIEVES me and has found out what diseases I have and has a plan to treat them, even if he is 3,000 miles away.
When it comes to your health, you HAVE to be your own advocate...Nobody will fight for you as strongly as you will, so you have to fight for the care you deserve.
I will continue to push forward, to be unrelentless in this journey to reclaim my life. These moments of adversity will be the ladders that one day lead to greatness.
I am just holding onto hope...the hope that one day those of us with "hidden" diseases will no longer be discriminated against...
Hope that there will be a CURE.
Hope that I will be able to have my life back.
Hope that I will be able to survive this and come out the other side stronger instead of broken and shattered.
Sometimes in this world that is all we have to hold onto...A glimmer of hope in a sea of black dark swells and waves. A quick flash of light in the middle of a storm...A shining star that burns through the dark ominous clouds of doubt and depression...
But at least it is something...Hope is everything when you feel like you have nothing...
Unfortunately, last night I hit a breaking point. My joint and nerve pain was so severe, my body was uncontrollably shaking. My resting heart rate climbed over 100 BPM, and my fever shot up to 103.
I tried to take a luke warm bath with some "calming bath salts" (what a joke that product name is). After about 20 minutes in the bathtub, nothing had improved. As I climbed out of the tub I became extremely dizzy and ended up vomiting all of my dinner I had consumed about 45 minutes prior.
As I sat soaking wet dripping both water and tears all over the cold bathroom floor, uncontrollably shaking and crying, I just had it...I couldn't take it anymore.
I've only been on these new antibiotics for a week, yet that week feels like an eternity; a blur of mind numbing pain and suffering.
Like I said, I just couldn't bear the pain for one more minute. Each second felt like forever. I am taking Lyrica, Tramadol, Vimovo, and more Vicoden than anyone should probably take, and found NO relief, no solace, no temporary comfort.
I just needed help...so I went to the Emergency Room.
The doctor was an ASSHOLE. Pardon my language, but there is no better way to describe the self righteous egotistical man that walked into my room. When I told him what I am afflicted with, his response was "Did you recently travel to Africa"?
His comment was delivered with a snide smirk, a nasty evil looking squint of his eyes that reeked of mockery and disbelief.
I looked so pathetic there...I was dwarfed by the oversized hospital bed they had put me in, shaking uncontrollably, eyes swollen and red with tears, head hung low like a sick or injured animal...And all I could say was "No." I had no strength to fight back with a powerful remark...I was already feeling beaten and broken.
He questioned my diagnoses, questioned my legitimacy as a patient, and questioned my reasons for being in the ER. He then said to me, "Well I can't fix your problems in the ER on a Friday night in Savannah, GA"...
I am still shocked at the lack of compassion, lack of understanding and empathy in some of the doctors I have encountered here in the Southern United States. It is moments like the one I had last night that make me question my faith in the medical community.
Their job is to help their patients and to LISTEN to their complaints and BELIEVE that they are real...not to bombard a young woman, obviously in a lot of pain, with disbelief and rude comments.
I ended up using my education (thank you Cal Poly Animal Science) and explained in scientific jargon my diseases, clinical presentations, my bloodwork results and titer levels and ranges, treatments, diagnoses, etc...and he finally seemed to at least believe that I was truly ill..
They ultra-sounded my gall bladder and it was reviewed by the surgeon. My bloodwork and ultrasound came back inconclusive, however I am going in for a specialized scan as soon as possible to take another look. My clinical symptoms do suggest a failure in gall bladder function. I will know more later.
I was sent home with some Percaset and a giant chip on my shoulder.
The worst thing about this disease is the disgust the general medical community has towards those of us who are inflicted with it.
It feels like saying you have Lyme Disease is like saying you have Leprosy.....Only those of us who have seen that "look" on the doctors' faces understand what I am saying...
It makes you feel like nothing, like you are alone with your illness, completely isolated from the rest of society...It is heartbreaking.
Although last night was horrible and upsetting, it does make me feel that much more thankful to have a doctor who is taking care of me and who BELIEVES me and has found out what diseases I have and has a plan to treat them, even if he is 3,000 miles away.
When it comes to your health, you HAVE to be your own advocate...Nobody will fight for you as strongly as you will, so you have to fight for the care you deserve.
I will continue to push forward, to be unrelentless in this journey to reclaim my life. These moments of adversity will be the ladders that one day lead to greatness.
I am just holding onto hope...the hope that one day those of us with "hidden" diseases will no longer be discriminated against...
Hope that there will be a CURE.
Hope that I will be able to have my life back.
Hope that I will be able to survive this and come out the other side stronger instead of broken and shattered.
Sometimes in this world that is all we have to hold onto...A glimmer of hope in a sea of black dark swells and waves. A quick flash of light in the middle of a storm...A shining star that burns through the dark ominous clouds of doubt and depression...
But at least it is something...Hope is everything when you feel like you have nothing...
Friday, April 29, 2011
New Information
Well I saw my Lyme doctor yesterday and frankly am devastated by the results....
After suffering for the last few months and running what seemed like every test under the sun, I did finally receive some answers, though none of which I wanted to hear.
It turns out that not only am I fighting Lyme and two strains of Ehrlichia, but I also have Babesia, another tick borne disease.
I was tested for this months ago, but was not positive until now. The tests are all titer tests (antibodies), so most likely my immune system wasn't producing significant antibodies to register on the blood work results until now.
After seeing how bruised up I am and discussing my bloodwork, which also showed significantly elevated Cortisol levels, my doctor is also concerned I have Carcinoid tumors. These are benign tumors in the GIT that cause bruising and elevated stress responses which I suffer from.
Symptoms include bruising, elevated corticosteroids, flushing, hot flashes, sweating, heart palpitations, and digestive upset, ALL of which I experience. I hope in a way that I have them. They are a minor surgical fix and then you're "cured".
Knowing me and my luck, I will not have Carcinoids and all of these horrible symptoms I am suffering from are caused by the FOUR diseases I am fighting.
Not a single titer level went down for Lyme and the Ehrlichias. I have not even started to beat any of this stuff. I just feel like I have SUCH an incredibly uphill battle to fight.
I feel like I am trying to climb a mountain on a stationary bike...You work your ass off but don't get anywhere.
I am starting back up on antibiotics. I will be taking Rifampin and Ketek. The plan is to target the two Ehrlichias, then try to kill the Babesia, and then last but certainly not least, the Lyme disease itself.
I have a VERY long road ahead of me...most likely years....
It is hard to wrap my head around the fact that my life has to be put on hold. I do the best I can with the dog training, and I do love it, but I feel like I am missing out on everything I ever wanted....
I miss school. I miss learning. I can't even bring myself to ready the Cal Poly magazines because it makes me cry. I miss it all so much. I miss the dynamic ever changing world of Animal Science.
I miss being surrounded by friends, all of whom have similar interests and passions. I want to be back in Grad school, or Vet school, or SOMETHING and utilizing my brain again.
I feel like it is rotting sometimes....like all of that hard work I did in college was all for nothing....I know its just a pessimistic way to think and I'll snap out of it, but tonight as I sit in bed unable to sleep, it is how I feel.
I am at least thankful that I'm alive, and have the determination, courage, and mental strength to fight this and I really do hope I come out and beat this all one day.
I wouldn't wish this disease on my worst enemy...It strips you of all you're worth and just leaves you feeling like a broken egg shell.
I'm lucky to have a wonderful support system around me, and for that I am forever grateful. I love all of you very much and really do appreciate all of you in my life. Hopefully one day there will be a positive post on this blog, but for now I will continue sharing the reality of my life with Lyme....
xoxo
After suffering for the last few months and running what seemed like every test under the sun, I did finally receive some answers, though none of which I wanted to hear.
It turns out that not only am I fighting Lyme and two strains of Ehrlichia, but I also have Babesia, another tick borne disease.
I was tested for this months ago, but was not positive until now. The tests are all titer tests (antibodies), so most likely my immune system wasn't producing significant antibodies to register on the blood work results until now.
After seeing how bruised up I am and discussing my bloodwork, which also showed significantly elevated Cortisol levels, my doctor is also concerned I have Carcinoid tumors. These are benign tumors in the GIT that cause bruising and elevated stress responses which I suffer from.
Symptoms include bruising, elevated corticosteroids, flushing, hot flashes, sweating, heart palpitations, and digestive upset, ALL of which I experience. I hope in a way that I have them. They are a minor surgical fix and then you're "cured".
Knowing me and my luck, I will not have Carcinoids and all of these horrible symptoms I am suffering from are caused by the FOUR diseases I am fighting.
Not a single titer level went down for Lyme and the Ehrlichias. I have not even started to beat any of this stuff. I just feel like I have SUCH an incredibly uphill battle to fight.
I feel like I am trying to climb a mountain on a stationary bike...You work your ass off but don't get anywhere.
I am starting back up on antibiotics. I will be taking Rifampin and Ketek. The plan is to target the two Ehrlichias, then try to kill the Babesia, and then last but certainly not least, the Lyme disease itself.
I have a VERY long road ahead of me...most likely years....
It is hard to wrap my head around the fact that my life has to be put on hold. I do the best I can with the dog training, and I do love it, but I feel like I am missing out on everything I ever wanted....
I miss school. I miss learning. I can't even bring myself to ready the Cal Poly magazines because it makes me cry. I miss it all so much. I miss the dynamic ever changing world of Animal Science.
I miss being surrounded by friends, all of whom have similar interests and passions. I want to be back in Grad school, or Vet school, or SOMETHING and utilizing my brain again.
I feel like it is rotting sometimes....like all of that hard work I did in college was all for nothing....I know its just a pessimistic way to think and I'll snap out of it, but tonight as I sit in bed unable to sleep, it is how I feel.
I am at least thankful that I'm alive, and have the determination, courage, and mental strength to fight this and I really do hope I come out and beat this all one day.
I wouldn't wish this disease on my worst enemy...It strips you of all you're worth and just leaves you feeling like a broken egg shell.
I'm lucky to have a wonderful support system around me, and for that I am forever grateful. I love all of you very much and really do appreciate all of you in my life. Hopefully one day there will be a positive post on this blog, but for now I will continue sharing the reality of my life with Lyme....
xoxo
Saturday, April 16, 2011
Still Asking Questions and Still Looking for Answers
It has been almost a month since I have posted, and unfortunately not very much has changed.
I went in for a colonoscopy this past Friday, and the results are the same as the upper scope: inflammation and redness.
My digestive system looks and acts like I have IBS and Crohn's Disease even though I test negative for both.
It just looks like I have Lyme and the Ehrlichias, and they are wreaking havoc on my body on their own, without the "help" of a GIT disease.
I think the most frustrating and disappointing thing about all of this is that I have been off my antibiotics for over a month because we were concerned they were the cause of my issues, but they weren't. So now I have been off the drugs that will kill what is making me this ill.
I go see my LLMD on the 28th, and I can't wait for a new game plan and some new ideas about what is going on.
Lately my nerves have been going HAYWIRE and I am also covered in disturbing bruises with unknown origins. My body feels like it is failing on me almost every day. Sometimes I am almost surprised to wake up in the morning.
This is such a scary and mysterious disease. It makes you feel like you have NO control over your body, your brain, your life....
I can only hope that I have the strength to push forward and carry on no matter what obstacles come in my way. I don't have very much to say right now, I feel broken and beaten down by all of this.
I will post again after my LLMD appointment, but for now I will leave you with these song lyrics by John Mayer. Love you all.
Come out angels
Come out ghosts
Come out darkness
Bring everyone you know
I'm not running
I'm not scared
I am waiting and well prepared
I'm in the war of my life
At the door of my life
Out of time and there's nowhere to run
I've got a hammer
And a heart of glass
I got to know right now
Which walls to smash
I got a pocket
Got no pills
If fear hasn't killed me yet
Then nothing will
All the suffering
And all the pain
Never left a name
The war of my life
At the door of my life
Out of time and there's nowhere to run
I'm in the war of my life
At the core of my life
Got no choice but to fight 'til it's done
No more suffering
No more pain
Never again
I'm in the war of my life
At the door of my life
Out of time and there's no where to run
I'm in the war of my life
I'm at the core of my life
Got no choice but to fight 'til it's done
So fight on (I won't give in)
Fight on everyone (I won't run)
Fight on (I won't stop for anyone)
Got no choice but to fight 'til it's done
Fight on (I won't give in)
Fight on everyone (I won't run)
Fight on (I won't stop for anyone)
Got no choice but to fight 'til it's done
I went in for a colonoscopy this past Friday, and the results are the same as the upper scope: inflammation and redness.
My digestive system looks and acts like I have IBS and Crohn's Disease even though I test negative for both.
It just looks like I have Lyme and the Ehrlichias, and they are wreaking havoc on my body on their own, without the "help" of a GIT disease.
I think the most frustrating and disappointing thing about all of this is that I have been off my antibiotics for over a month because we were concerned they were the cause of my issues, but they weren't. So now I have been off the drugs that will kill what is making me this ill.
I go see my LLMD on the 28th, and I can't wait for a new game plan and some new ideas about what is going on.
Lately my nerves have been going HAYWIRE and I am also covered in disturbing bruises with unknown origins. My body feels like it is failing on me almost every day. Sometimes I am almost surprised to wake up in the morning.
This is such a scary and mysterious disease. It makes you feel like you have NO control over your body, your brain, your life....
I can only hope that I have the strength to push forward and carry on no matter what obstacles come in my way. I don't have very much to say right now, I feel broken and beaten down by all of this.
I will post again after my LLMD appointment, but for now I will leave you with these song lyrics by John Mayer. Love you all.
Come out angels
Come out ghosts
Come out darkness
Bring everyone you know
I'm not running
I'm not scared
I am waiting and well prepared
I'm in the war of my life
At the door of my life
Out of time and there's nowhere to run
I've got a hammer
And a heart of glass
I got to know right now
Which walls to smash
I got a pocket
Got no pills
If fear hasn't killed me yet
Then nothing will
All the suffering
And all the pain
Never left a name
The war of my life
At the door of my life
Out of time and there's nowhere to run
I'm in the war of my life
At the core of my life
Got no choice but to fight 'til it's done
No more suffering
No more pain
Never again
I'm in the war of my life
At the door of my life
Out of time and there's no where to run
I'm in the war of my life
I'm at the core of my life
Got no choice but to fight 'til it's done
So fight on (I won't give in)
Fight on everyone (I won't run)
Fight on (I won't stop for anyone)
Got no choice but to fight 'til it's done
Fight on (I won't give in)
Fight on everyone (I won't run)
Fight on (I won't stop for anyone)
Got no choice but to fight 'til it's done
Thursday, March 24, 2011
Same Health Issues, New dog!
Hello everyone.
First to update you on my health...
I am still on a liquid diet. I drink Ensure shakes and eat soup for dinner. I probably could go off of the diet and start slowly back to real food, but it has been SO nice being without any GIT issues that I am perfectly content to stay on the liquid diet.
I have been feeling better lately than I was feeling the last couple of weeks, but my neurological symptoms have gone completely haywire.
My brain fog is KILLING me. Yesterday I somehow managed to forget just about everything and confuse ALL of my clients around and also get lost going to the same park I go about 4 or 5 days per week.
It is one thing to be in physical pain, it is another to feel like you are losing your mind.
For me, there is not much worse than feeling like my brain doesn't work. It is a painful reality of my diseases, and there is no medication that can treat it.
On the bright side, I am fostering a new dog who is WONDERFUL and has brought some new light into my life. I am technically just fostering him right now, but will most likely end up permanently adopting him.
I was called to the Humane Society to do a behavior evaluation on a blue Pit Bull, and ended up taking him home. His name is Gunner, he is a year old TOPS, and is a big goofy baby.
The dogs have been a life raft in the middle of a storm, a flowering bud through the thicket of thorns.
They make my life so much more enjoyable and bright, even on the darkest of days.
First to update you on my health...
I am still on a liquid diet. I drink Ensure shakes and eat soup for dinner. I probably could go off of the diet and start slowly back to real food, but it has been SO nice being without any GIT issues that I am perfectly content to stay on the liquid diet.
I have been feeling better lately than I was feeling the last couple of weeks, but my neurological symptoms have gone completely haywire.
My brain fog is KILLING me. Yesterday I somehow managed to forget just about everything and confuse ALL of my clients around and also get lost going to the same park I go about 4 or 5 days per week.
It is one thing to be in physical pain, it is another to feel like you are losing your mind.
For me, there is not much worse than feeling like my brain doesn't work. It is a painful reality of my diseases, and there is no medication that can treat it.
On the bright side, I am fostering a new dog who is WONDERFUL and has brought some new light into my life. I am technically just fostering him right now, but will most likely end up permanently adopting him.
I was called to the Humane Society to do a behavior evaluation on a blue Pit Bull, and ended up taking him home. His name is Gunner, he is a year old TOPS, and is a big goofy baby.
The dogs have been a life raft in the middle of a storm, a flowering bud through the thicket of thorns.
They make my life so much more enjoyable and bright, even on the darkest of days.
Thursday, March 17, 2011
Loss of Control
Well, unfortunately I don't have anything positive to report...I cannot wait for the day that I can post an entry on this blog and have it actually be UPLIFTING and HOPEFUL! That day will come, but until then I will just write about reality....
After the scope procedure I still continued to decline. I was unable to hold down food or water and was so ill I could hardly even get out of bed.
I went back to my gastroenterologist AGAIN and it was a waste of time. My doctor said that my scope was inconclusive and only showed general inflammation, nothing that would explain the severity of my symptoms.
Awesome....Just what I love, another doctor that doesn't know what is wrong with me and probably thinks I'm crazy....
Not only did my GIT symptoms continue to take a turn for the worse, but my other Lyme symptoms went haywire as well.
My vision became so clouded and painful I couldn't read anything...Not the TV guide menu, not the pages of a book or magazine, literally nothing. My eye sockets pounded with my pulse, a throbbing painful sensation that is difficult to describe.
My sciatic nerves felt shredded, like someone was rubbing shattered glass up and down along the nerve endings.
My hip joints felt like they were going to explode, like someone was pumping the joints full of boiling water.
My mind was a jumbled mess. My memory wasn't working at all and I felt like my brain was breaking down. It's almost like you can imagine the bacteria drilling themselves into my nervous tissue, eating, thriving, reproducing in the grey matter of my mind...
The unwanted invasion of deadly parasites...I feel like I'm in an Alien movie...there are uninvited inhabitants in my body over which I have little control....
I ended up requiring a pricey phone consult with my LLMD last night. Even my LLMD, my savior of sorts in this medical nightmare, is unsure of what to do for me.
My symptoms are "too severe"...
"Too different"...
"Too odd"....
The doctor who I have put all my faith into doesn't understand why my body is falling apart piece by piece, like the autumn leaves slowly floating away from the tree down to the cold hard ground.
He has instructed me to run my bloodwork next week and go from there. He will be testing me for some different diseases, most of which are rare but could possibly provide an explanation for my steady decline.
The biggest blow in all of this is that my LLMD wants me off antibiotics until he gets the results of my bloodwork....The bloodwork takes 3-4 weeks to run...
I will most likely not be put back on antibiotics until the end of April when I go back to see him in person.
This is a devastating blow to my morale. The antibiotics are my only hope of ever beating this disease, and even just a week off of them means I'm not killing bacteria. By the time I am back on them it will be 6-7 weeks off antibiotics.
I have no choice but to trust my doctor, but it is so hard to feel so helpless, like you have no control over your life.
This is only something those of us with chronic disease experience. This total and complete loss of power.
I guess the only power we immutably have is the power of our faith, and the strength we possess within to hold onto hope and keep on pushing forward. No disease can take away your fight and your fire. No bacteria can take away your desire to recover and heal.
That is what we all must remember. No matter what obstacles and adversity we face in life, we can still have faith that we can perservere.
After the scope procedure I still continued to decline. I was unable to hold down food or water and was so ill I could hardly even get out of bed.
I went back to my gastroenterologist AGAIN and it was a waste of time. My doctor said that my scope was inconclusive and only showed general inflammation, nothing that would explain the severity of my symptoms.
Awesome....Just what I love, another doctor that doesn't know what is wrong with me and probably thinks I'm crazy....
Not only did my GIT symptoms continue to take a turn for the worse, but my other Lyme symptoms went haywire as well.
My vision became so clouded and painful I couldn't read anything...Not the TV guide menu, not the pages of a book or magazine, literally nothing. My eye sockets pounded with my pulse, a throbbing painful sensation that is difficult to describe.
My sciatic nerves felt shredded, like someone was rubbing shattered glass up and down along the nerve endings.
My hip joints felt like they were going to explode, like someone was pumping the joints full of boiling water.
My mind was a jumbled mess. My memory wasn't working at all and I felt like my brain was breaking down. It's almost like you can imagine the bacteria drilling themselves into my nervous tissue, eating, thriving, reproducing in the grey matter of my mind...
The unwanted invasion of deadly parasites...I feel like I'm in an Alien movie...there are uninvited inhabitants in my body over which I have little control....
I ended up requiring a pricey phone consult with my LLMD last night. Even my LLMD, my savior of sorts in this medical nightmare, is unsure of what to do for me.
My symptoms are "too severe"...
"Too different"...
"Too odd"....
The doctor who I have put all my faith into doesn't understand why my body is falling apart piece by piece, like the autumn leaves slowly floating away from the tree down to the cold hard ground.
He has instructed me to run my bloodwork next week and go from there. He will be testing me for some different diseases, most of which are rare but could possibly provide an explanation for my steady decline.
The biggest blow in all of this is that my LLMD wants me off antibiotics until he gets the results of my bloodwork....The bloodwork takes 3-4 weeks to run...
I will most likely not be put back on antibiotics until the end of April when I go back to see him in person.
This is a devastating blow to my morale. The antibiotics are my only hope of ever beating this disease, and even just a week off of them means I'm not killing bacteria. By the time I am back on them it will be 6-7 weeks off antibiotics.
I have no choice but to trust my doctor, but it is so hard to feel so helpless, like you have no control over your life.
This is only something those of us with chronic disease experience. This total and complete loss of power.
I guess the only power we immutably have is the power of our faith, and the strength we possess within to hold onto hope and keep on pushing forward. No disease can take away your fight and your fire. No bacteria can take away your desire to recover and heal.
That is what we all must remember. No matter what obstacles and adversity we face in life, we can still have faith that we can perservere.
Tuesday, March 15, 2011
Fairy Tales and Happy Endings
I have mixed emotions about the initial results of my gastroscopy yesterday.
My gastroenterologist did not find any ulcers, which is great, however my stomach and duodenum (upper portion of the small intestine) look very irritated and inflamed. He is suspicious that the combination of strong anti-inflammatories and high doses of antibiotics are the cause of the acute attack that triggered this whole episode of events.
He took biopsy samples to send to the lab, and I will know the results of those within the next week or so.
I feel like I'm trapped by this finding. On one hand I NEED my pain medications just to get out of bed and my antibiotics are crucial, that goes without saying. What am I supposed to do if the same medications that are crucial to my recovery are contributing to further illness?
On top of everything else I have had a low grade fever for two days, and the doctors blew it off at the hospital. I was up all night breaking out in cold sweats and chills. I don't even have the energy to go see another doctor and figure it out...
I am stuck between a rock and a hard place and I just wish I could sink away and disappear.
I find myself slipping away. It gets harder and harder to hide the way I feel and put on a happy face.
I have been taking triple doses of over-the-counter sleeping medications in combination with the prescriptions from my doctor at 5 or 6pm, just so I can go to sleep and be unconscious. When I am asleep it is the only time I am not aware of how miserable I am and how much I miss who I used to be and the life I used to have.
Tonight I am teaching a "Pit Bull Education Seminar" to about 20-25 people. I have been planning this for over a month, and was so excited. Even something I am so passionate about feels like a chore, another time I have to wear the mask of normalcy and hide the way I feel inside.
I just wish there was a fast forward button in life. I wish I could be Snow White or Sleeping Beauty and just sleep peacefully waiting for better days to come.
Life is not a fairy tail. There are not always happy endings. Sometimes we push and push for what we want, we strive to reach our highest expectations for ourselves, but sometimes the hardest thing to accept in life is that we can't always have what we want. Reality can be hard to swallow.
"You know how when you were a little kid and you believed in fairy tales, that fantasy of what your life would be, white dress, prince charming who would carry you away to a castle on a hill. You would lie in bed at night and close your eyes and you had complete and utter faith. Santa Claus, the Tooth Fairy, Prince Charming, they were so close you could taste them, but eventually you grow up, one day you open your eyes and the fairy tale disappears."
My gastroenterologist did not find any ulcers, which is great, however my stomach and duodenum (upper portion of the small intestine) look very irritated and inflamed. He is suspicious that the combination of strong anti-inflammatories and high doses of antibiotics are the cause of the acute attack that triggered this whole episode of events.
He took biopsy samples to send to the lab, and I will know the results of those within the next week or so.
I feel like I'm trapped by this finding. On one hand I NEED my pain medications just to get out of bed and my antibiotics are crucial, that goes without saying. What am I supposed to do if the same medications that are crucial to my recovery are contributing to further illness?
On top of everything else I have had a low grade fever for two days, and the doctors blew it off at the hospital. I was up all night breaking out in cold sweats and chills. I don't even have the energy to go see another doctor and figure it out...
I am stuck between a rock and a hard place and I just wish I could sink away and disappear.
I find myself slipping away. It gets harder and harder to hide the way I feel and put on a happy face.
I have been taking triple doses of over-the-counter sleeping medications in combination with the prescriptions from my doctor at 5 or 6pm, just so I can go to sleep and be unconscious. When I am asleep it is the only time I am not aware of how miserable I am and how much I miss who I used to be and the life I used to have.
Tonight I am teaching a "Pit Bull Education Seminar" to about 20-25 people. I have been planning this for over a month, and was so excited. Even something I am so passionate about feels like a chore, another time I have to wear the mask of normalcy and hide the way I feel inside.
I just wish there was a fast forward button in life. I wish I could be Snow White or Sleeping Beauty and just sleep peacefully waiting for better days to come.
Life is not a fairy tail. There are not always happy endings. Sometimes we push and push for what we want, we strive to reach our highest expectations for ourselves, but sometimes the hardest thing to accept in life is that we can't always have what we want. Reality can be hard to swallow.
"You know how when you were a little kid and you believed in fairy tales, that fantasy of what your life would be, white dress, prince charming who would carry you away to a castle on a hill. You would lie in bed at night and close your eyes and you had complete and utter faith. Santa Claus, the Tooth Fairy, Prince Charming, they were so close you could taste them, but eventually you grow up, one day you open your eyes and the fairy tale disappears."
Friday, March 11, 2011
What the Night Brings
There is something very lonely about night time. It's very difficult for me to sleep so I am left alone with the black sky and my dark thoughts.
The night time brings both a sense of peace and pain. The stillness and quiet is a welcome feeling, like a soft fog rolling off the hills to settle the valley below. My body can slow down, recover from the day, but this is when my mind awakens and my thoughts churn.
Today was an interesting day. It was the first time anyone has actually noticed that I physically show signs of being sick. I have lost 6 pounds over the past week, and for someone that is normally 5'4" and 125 lbs, that is a significant amount of weight loss.
People noticed that I have lost weight, that something didn't look just right. For some reason it almost made my eyes well with tears that someone actually noticed...
It makes me so uncomfortable and uneasy to be vulnerable when I am face to face with someone, even just in that tiny minuscule way. My emotions have always been something I try to shove down inside of me, deep into the caverns of my mind and soul. I don't even want to face my own vulnerability and sense of loss and longing.
Living on the cusp of reality
Floating through aimlessly, mindlessly
Like a jellyfish through the ocean,
Driven by no emotion,
Life has lost its direction
I have lost all self-definition.
It is impossible to know how I feel
Like a car missing a wheel,
Like a plane missing a wing,
I no longer hear birds sing.
The clouds are always looming
People fly past, ignorantly zooming.
But nobody stops to think
This is a girl on the brink.
Life has become a maze of faith and doubt
I know it’s there, but I cannot see the way out.
Walking, breathing, being…like a ghost
Pain, hurt, broken dreams…shattered hopes.
I float along trying to appear strong
On the inside I’m slowly breaking….
Just trying to hold on….
CT Update
Well, nothing good to report after my CT. My abdominal CT showed significant inflammation of my stomach and duodenum (upper portion of the small intestine).
My gastroenterologist has scheduled me for the first available gastroscopy at the hospital on Monday. He will be looking for ulcers, lesions, plaque, bacteria, etc. that is causing the inflammatory response in my GIT that has prevented me from eating a real meal in almost a week now.
He will also be taking biopsies from my stomach to send to the pathology lab.
I feel a little bit better, but I still can't eat. I tried to eat some chicken and rice soup and a potato last night and have been sick since 5:30AM this morning.
I have a feeling all of this is related to the high doses of oral antibiotics I am taking to treat my diseases. I have been in treatment for 7.5 months now and have had complications from the antibiotics the entire time.
Don't get me wrong, I would MUCH rather experience the complications than suffer from this disease for the rest of my life, but it only makes recovery that much more difficult and tedious.
My LLMD has instructed me to stay off of my antibiotics until I get the biopsy/gastroscope results. I went off of them last Sunday, so by the time I get results and know what is going on medically, it will be about 1.5 weeks off of my medications.
This is such a catch-22 for me. On one hand it might give me some temporary relief, but on the other that is 1.5 weeks for the bacteria to flourish and reproduce.
I'm hoping my LLMD will switch me off oral antibiotics to IV antibiotics when I go back to see him at the end of April. I have not tolerated the oral antibiotics well since I started treatment. I have had GIT issues, yeast infections in my mouth, and mouth sores that do not heal.
I probably won't post over the weekend unless something drastically changes, but I just wanted to give you all an update. I will post on Monday evening or Tuesday morning once I recover from the procedure.
Love you all very much!
My gastroenterologist has scheduled me for the first available gastroscopy at the hospital on Monday. He will be looking for ulcers, lesions, plaque, bacteria, etc. that is causing the inflammatory response in my GIT that has prevented me from eating a real meal in almost a week now.
He will also be taking biopsies from my stomach to send to the pathology lab.
I feel a little bit better, but I still can't eat. I tried to eat some chicken and rice soup and a potato last night and have been sick since 5:30AM this morning.
I have a feeling all of this is related to the high doses of oral antibiotics I am taking to treat my diseases. I have been in treatment for 7.5 months now and have had complications from the antibiotics the entire time.
Don't get me wrong, I would MUCH rather experience the complications than suffer from this disease for the rest of my life, but it only makes recovery that much more difficult and tedious.
My LLMD has instructed me to stay off of my antibiotics until I get the biopsy/gastroscope results. I went off of them last Sunday, so by the time I get results and know what is going on medically, it will be about 1.5 weeks off of my medications.
This is such a catch-22 for me. On one hand it might give me some temporary relief, but on the other that is 1.5 weeks for the bacteria to flourish and reproduce.
I'm hoping my LLMD will switch me off oral antibiotics to IV antibiotics when I go back to see him at the end of April. I have not tolerated the oral antibiotics well since I started treatment. I have had GIT issues, yeast infections in my mouth, and mouth sores that do not heal.
I probably won't post over the weekend unless something drastically changes, but I just wanted to give you all an update. I will post on Monday evening or Tuesday morning once I recover from the procedure.
Love you all very much!
Wednesday, March 9, 2011
More Complications
This whole journey with Lyme and Ehrlichia never seems to end....The road to recovery and health is a windy twisty path full of obstacles along the way.
On Sunday evening around 10pm all of a sudden I began to experience an intensely painful burning sensation throughout my entire abdomen. I spent the entire night curled up in a little ball on the living room couch in a cold sweat completely overwhelmed by abdominal pain.
My entire abdomen was so painful and tender I could not even put on a pair of jeans. By 11am I was crying, which for me says a lot. I can handle a lot of pain, and do handle an extreme amount on a daily basis, but this acute attack was more than even I could tolerate.
I went to the closest emergency clinic seeking some sort of relief or answers. For those of us with Lyme, it is NEVER fun going to a new doctor. It is always a fear that when you tell the doctor you have Lyme and are in long term antibiotic therapy you will receive an entire lecture on how that doesn't work, your doctor is doing you more harm than good, etc....
After waiting in the ER clinic waiting room for over an hour laying on the floor (it was the only way I was somewhat comfortable), I finally was escorted to the exam rooms. To my horror, I passed a doctor I recognized. I went to this clinic a month ago for an EKG due to Lyme related heart palpitations. This particular doctor is an older doctor and oh boy did he give me an earful about my Lyme treatment/diagnosis.
I finally had to tell this doctor that either he gives me the EKG or I will just leave...
Anyway, you can imagine how distraught I was to see that sure enough, I get this doctor AGAIN. Just my luck, right? I started crying immediately...The nurse was so sweet, she assumed that I didn't want to see that doctor because he is male, but I really didn't want to see him because he was so cruel and dismissive when I was there just a month prior.
I was too sick to go and wait anywhere else, so I agreed to see him but asked the nurse to tell the doctor to leave the Lyme issue alone and just treat my clinical symptoms.
He ended up being nice (thank you to the nurse for that) and gave me some anti-spasmodic medications just to get me through until yesterday.
Yesterday I got an emergency appointment with my gastroenterologist. He was concerned about the sudden acute onset of the extreme pain. My abdomen also felt abnormally rigid and swollen upon palpation. He ordered bloodwork and an abdominal CT scan which I just had today.
I will hear my CT results tomorrow and will share what I found out. I am just hoping and praying that it is nothing. If my CT is clean, then I know I can attribute yet another horrible symptom to this terrible and life altering disease. If my CT shows something, it won't be Lyme, and I do NOT need another illness on top of the three I already am suffering from.
One thing I can say about this is that I will never take my health for granted again. Even something as simple as being able to walk around the house without being in pain would be a major luxury at this point in my life.
I miss being able to go hiking and enjoy the outdoors.
I miss riding my horses and galloping freely across the beach, leaving beautiful hoofprints of freedom marked in the cool damp sand.
I miss the days of waking up early, excited to go work livestock and excited to learn in college, hungry for knowledge and new insight.
I am a long way away from enjoying the activities I once loved. But if I could just be able to sleep through the night without waking up with excruciating hip pain....if I could just clean the house without my hands swelling up...If i could just hold the telephone for more than five minutes without my hand cramping in pain...
There is so much we take for granted, but until it is all slipping away right before your eyes, you don't even acknowledge these small pleasures in life.
For those of you with Lyme or other chronic disease following this blog, you know exactly how it feels to have your life stripped away from you, your passions become memories of better days, and your future is so unknown and scary that it steals your breath away.
On Sunday evening around 10pm all of a sudden I began to experience an intensely painful burning sensation throughout my entire abdomen. I spent the entire night curled up in a little ball on the living room couch in a cold sweat completely overwhelmed by abdominal pain.
My entire abdomen was so painful and tender I could not even put on a pair of jeans. By 11am I was crying, which for me says a lot. I can handle a lot of pain, and do handle an extreme amount on a daily basis, but this acute attack was more than even I could tolerate.
I went to the closest emergency clinic seeking some sort of relief or answers. For those of us with Lyme, it is NEVER fun going to a new doctor. It is always a fear that when you tell the doctor you have Lyme and are in long term antibiotic therapy you will receive an entire lecture on how that doesn't work, your doctor is doing you more harm than good, etc....
After waiting in the ER clinic waiting room for over an hour laying on the floor (it was the only way I was somewhat comfortable), I finally was escorted to the exam rooms. To my horror, I passed a doctor I recognized. I went to this clinic a month ago for an EKG due to Lyme related heart palpitations. This particular doctor is an older doctor and oh boy did he give me an earful about my Lyme treatment/diagnosis.
I finally had to tell this doctor that either he gives me the EKG or I will just leave...
Anyway, you can imagine how distraught I was to see that sure enough, I get this doctor AGAIN. Just my luck, right? I started crying immediately...The nurse was so sweet, she assumed that I didn't want to see that doctor because he is male, but I really didn't want to see him because he was so cruel and dismissive when I was there just a month prior.
I was too sick to go and wait anywhere else, so I agreed to see him but asked the nurse to tell the doctor to leave the Lyme issue alone and just treat my clinical symptoms.
He ended up being nice (thank you to the nurse for that) and gave me some anti-spasmodic medications just to get me through until yesterday.
Yesterday I got an emergency appointment with my gastroenterologist. He was concerned about the sudden acute onset of the extreme pain. My abdomen also felt abnormally rigid and swollen upon palpation. He ordered bloodwork and an abdominal CT scan which I just had today.
I will hear my CT results tomorrow and will share what I found out. I am just hoping and praying that it is nothing. If my CT is clean, then I know I can attribute yet another horrible symptom to this terrible and life altering disease. If my CT shows something, it won't be Lyme, and I do NOT need another illness on top of the three I already am suffering from.
One thing I can say about this is that I will never take my health for granted again. Even something as simple as being able to walk around the house without being in pain would be a major luxury at this point in my life.
I miss being able to go hiking and enjoy the outdoors.
I miss riding my horses and galloping freely across the beach, leaving beautiful hoofprints of freedom marked in the cool damp sand.
I miss the days of waking up early, excited to go work livestock and excited to learn in college, hungry for knowledge and new insight.
I am a long way away from enjoying the activities I once loved. But if I could just be able to sleep through the night without waking up with excruciating hip pain....if I could just clean the house without my hands swelling up...If i could just hold the telephone for more than five minutes without my hand cramping in pain...
There is so much we take for granted, but until it is all slipping away right before your eyes, you don't even acknowledge these small pleasures in life.
For those of you with Lyme or other chronic disease following this blog, you know exactly how it feels to have your life stripped away from you, your passions become memories of better days, and your future is so unknown and scary that it steals your breath away.
For those of you that have your health, cherish it. I know it sounds cliche, but it is a cliche for a reason! If you have your health, you have everything. Without your health, life widdles down to nothing in the blink of an eye. Never take health for granted...You never know when you may lose it.
Sunday, March 6, 2011
The Mask We Wear
After starting this blog the most frequent comment was "I never knew you were so sick, you hide it so well!"
The ability to place a thick emotional and physical blockade between myself and others around me has been a defense mechanism I have utilized since I was a child. I have always been a master at looking perfect on the outside no matter what inner turmoil or pain I may be feeling inside.
This used to be a voluntary and conscious reaction to the world around me, a way to prevent vulnerability and project strength and confidence. Recently I have found this characteristic to be both a blessing and a curse. Nobody knows I'm sick....but nobody knows I'm sick.
Nobody can tell that behind closed doors in my house I never get off the couch or out of bed. Nobody knows that my hips hurt so badly at night that I can't sleep through my sleep medication which is used to subdue schizophrenics and those with other psychoses.
I bet you can't tell that I can hardly walk around my house because as soon as I walk out the door into the public eye, I bite the inside corner of my cheek so hard I have a constant sore, just so I can hide my limping gait.
Not even those closest to me know that I struggle to keep myself together on a daily basis. Just keeping a smile on my face is and arduous and sometimes seemingly impossible task. After almost every social outing or session with a client, I get into the solitude of my truck and break down in tears from choking back so much pain and hiding so much discomfort.
This disease leaves most of us with a normal physical appearance, but a completely shredded inside. I feel completely eviscerated at times, with a feeling of toxins running through my bloodstream, bacteria destroying and inflaming my nervous tissues, and shards of glass shoved into my joints.
Even through all of the internal physical and emotional pain this disease causes, I never leave the house looking disheveled. My hair is always done, my makeup is always effortless and light, and my clothes are always neatly put together and accessorized. Even down to my french tipped toe-nails and fashionable shoes, my physical appearance always reflects normalcy.
I have been asked how I always project myself so confidently and assertively, how I hide everything so well. I am called "strong" and "courageous", "powerful" and "inspiring". These are wonderful compliments, but for some reason I cannot take them to heart.
I do not put myself together because I want to. Trust me, I want to stay in pajama bottoms and baggy t-shirts all day, every day. I do this because I HAVE to in order to survive, in order to beat this debilatating and life crushing disease. If I were to allow my external appearance to match my internal state, I would lose this battle right now.
The mask we wear....is it always good to hide the ugliness that lies behind it?
The ability to place a thick emotional and physical blockade between myself and others around me has been a defense mechanism I have utilized since I was a child. I have always been a master at looking perfect on the outside no matter what inner turmoil or pain I may be feeling inside.
This used to be a voluntary and conscious reaction to the world around me, a way to prevent vulnerability and project strength and confidence. Recently I have found this characteristic to be both a blessing and a curse. Nobody knows I'm sick....but nobody knows I'm sick.
Nobody can tell that behind closed doors in my house I never get off the couch or out of bed. Nobody knows that my hips hurt so badly at night that I can't sleep through my sleep medication which is used to subdue schizophrenics and those with other psychoses.
I bet you can't tell that I can hardly walk around my house because as soon as I walk out the door into the public eye, I bite the inside corner of my cheek so hard I have a constant sore, just so I can hide my limping gait.
Not even those closest to me know that I struggle to keep myself together on a daily basis. Just keeping a smile on my face is and arduous and sometimes seemingly impossible task. After almost every social outing or session with a client, I get into the solitude of my truck and break down in tears from choking back so much pain and hiding so much discomfort.
This disease leaves most of us with a normal physical appearance, but a completely shredded inside. I feel completely eviscerated at times, with a feeling of toxins running through my bloodstream, bacteria destroying and inflaming my nervous tissues, and shards of glass shoved into my joints.
Even through all of the internal physical and emotional pain this disease causes, I never leave the house looking disheveled. My hair is always done, my makeup is always effortless and light, and my clothes are always neatly put together and accessorized. Even down to my french tipped toe-nails and fashionable shoes, my physical appearance always reflects normalcy.
I have been asked how I always project myself so confidently and assertively, how I hide everything so well. I am called "strong" and "courageous", "powerful" and "inspiring". These are wonderful compliments, but for some reason I cannot take them to heart.
I do not put myself together because I want to. Trust me, I want to stay in pajama bottoms and baggy t-shirts all day, every day. I do this because I HAVE to in order to survive, in order to beat this debilatating and life crushing disease. If I were to allow my external appearance to match my internal state, I would lose this battle right now.
The mask we wear....is it always good to hide the ugliness that lies behind it?
Saturday, March 5, 2011
My Lyme Background
I posted this earlier on a different site, but am re-posting here for those of you who missed it before.
So, where to begin....
Lyme is a very mysterious and destructive disease. Lyme is a bacteria that is transmitted primarily through the bite of a deer tick (there are many many many different species that carry Lyme and the multitude of co-infections).
It is a spirochetal shaped bacteria, which allows it to essentially "drill" into every tissue and organ in the body, causing a multi-system involvement for infected individuals. Every patient is affected differently, making the disease very hard to diagnose and even more difficult to treat.
There is no single treatment protocol that works for every person, it is often a trial and error process of different antibiotics and other medications.
The average length of time for treatment for a patient considered chronic (undiagnosed for over one year) is two to five years....I was undiagnosed for 13 years...So the journey begins!
I was originally diagnosed with Lyme disease when I was 10 years old after showing classic acute symptoms of the disease. I was treated according to protocol, six weeks of antibiotics, and was sent on my merry way. However, it became quickly clear that things were not right.
I spent the last 13 years of my life suffering from chronic pain and childhood depression. I always knew that things didn't feel right, but with no diagnosable symptoms, my complaints were brushed off by doctors. My symptoms as a child were mostly joint pain and numbness and tingling sensations down my back and legs.
It was mostly manageable with Aleve, although once I entered my college years, Aleve became a daily necessity. Still, I ignored the joint pain, took Aleve, and had a very successful college career.
In January 2010, things began to change. All of a sudden, my gastrointestinal track began to act completely hay wire. I was having trouble eating anything without being sick, and my abdominal pain was so severe I would often spend evenings and nights curled up on the couch in the fetal position.
Then came the hip pain. It started off as mild irritation on my daily walks with my dogs, but it quickly escalated into a pain so severe I was limping along the daily dog walking route. I decided to see a Rheumatologist and finally find some answers.
Unfortunately, after two sets of bloodwork and two exams, the Rheumatologist once again came up without any answers. Although he did not know what was wrong with my body, he did believe something was not right.
Once again, I ignored the problem and pushed through the last quarter of my college career. The last three motnhs in college were a major struggle. Between my digestive issues and joint pain, I really knew things were taking a turn for the worse and I was thankful that it had waited this long to escalate.
In April, I moved to Alabama to live with my fiancee while he finished flight school for the Army. It was over the summer I really began to struggle with daily life. I was often times in too much pain to do the things I once loved, like ride my horses and hike with my dogs.
It became difficult just to perform daily tasks like cleaning the house and bringing groceries in from the truck. I was lucky enough to come into contact with a woman who has changed my life, and is now one of my best friends.
This woman also suffers from Lyme Disease and after we exchanged a few emails, I decided to make an appointment with her Lyme Literate Medical Doctor (LLMD). The wait list was long, so I made the appointment and went on with my life waiting the few months until I would meet with the doctor.
In August I moved to Mississippi to attend the Masters of Science program of my dreams. I was accepted to study applied beef cattle reproductive physiology, what I had always wanted. Little did I know this dream was to be completely shattered and destroyed over the course of a week.
The move was extremely stressful, and my body completely shut down. I became so ill I could not hold a water glass, I couldn't eat, I couldn't sleep, I literally became a prisoner in my own body. My body had been fighting this illness for 13 years, and it gave up after the stress of the move.
I called the LLMD and flew to California immediately for an urgent appointment.
After doing bloodwork with my LLMD, I finally was able to receive some answers, even though they were not what I wanted to hear. After 13 years of living in the unknown, I found out I was still sick with Lyme Disease and Monocytic Human Ehrlichiosis and Granulocytic Human Ehrlichiosis.
My life has been turned upside down by these disease more than I ever thought possible.
I now live in Savannah, GA with my fiancee and have done my best to hold onto shreds of who I used to be. I started my own dog behavior and training business, specializing in Pit Bulls and other powerful breeds.
I also work for the local Humane Society and volunteer at the local Animal Control Shelter. Due to my illness, however I can only work 8-10 hours per week. Work is the only escape I have from the prison that is my illness. It is a time to put on a facade of happiness, confidence, and normalcy, even though it is most often a lie.
I have always loved Pit Bulls, and since I have been sick I find solace and feel a connection with these dogs. They are misunderstood animals caught up in a mess that is not their fault, which is how I feel in my own life. The dogs give me a sense of comfort I am thankful every day to have found.
Each day has become a struggle against my diminishing cognitive function, horrible joint, neck, and back pain, abdominal pain, and depression. This disease has taken nearly everything away from me and left me clammering to cling for dear life for what is left.
Although I feel broken and shattered, I am still alive, and I will fight this battle with all of the strength that I have. I hope this blog can help others suffering from similar illness realize they are not alone, no matter how alone they feel.
So, where to begin....
Lyme is a very mysterious and destructive disease. Lyme is a bacteria that is transmitted primarily through the bite of a deer tick (there are many many many different species that carry Lyme and the multitude of co-infections).
It is a spirochetal shaped bacteria, which allows it to essentially "drill" into every tissue and organ in the body, causing a multi-system involvement for infected individuals. Every patient is affected differently, making the disease very hard to diagnose and even more difficult to treat.
There is no single treatment protocol that works for every person, it is often a trial and error process of different antibiotics and other medications.
The average length of time for treatment for a patient considered chronic (undiagnosed for over one year) is two to five years....I was undiagnosed for 13 years...So the journey begins!
I was originally diagnosed with Lyme disease when I was 10 years old after showing classic acute symptoms of the disease. I was treated according to protocol, six weeks of antibiotics, and was sent on my merry way. However, it became quickly clear that things were not right.
I spent the last 13 years of my life suffering from chronic pain and childhood depression. I always knew that things didn't feel right, but with no diagnosable symptoms, my complaints were brushed off by doctors. My symptoms as a child were mostly joint pain and numbness and tingling sensations down my back and legs.
It was mostly manageable with Aleve, although once I entered my college years, Aleve became a daily necessity. Still, I ignored the joint pain, took Aleve, and had a very successful college career.
In January 2010, things began to change. All of a sudden, my gastrointestinal track began to act completely hay wire. I was having trouble eating anything without being sick, and my abdominal pain was so severe I would often spend evenings and nights curled up on the couch in the fetal position.
Then came the hip pain. It started off as mild irritation on my daily walks with my dogs, but it quickly escalated into a pain so severe I was limping along the daily dog walking route. I decided to see a Rheumatologist and finally find some answers.
Unfortunately, after two sets of bloodwork and two exams, the Rheumatologist once again came up without any answers. Although he did not know what was wrong with my body, he did believe something was not right.
Once again, I ignored the problem and pushed through the last quarter of my college career. The last three motnhs in college were a major struggle. Between my digestive issues and joint pain, I really knew things were taking a turn for the worse and I was thankful that it had waited this long to escalate.
In April, I moved to Alabama to live with my fiancee while he finished flight school for the Army. It was over the summer I really began to struggle with daily life. I was often times in too much pain to do the things I once loved, like ride my horses and hike with my dogs.
It became difficult just to perform daily tasks like cleaning the house and bringing groceries in from the truck. I was lucky enough to come into contact with a woman who has changed my life, and is now one of my best friends.
This woman also suffers from Lyme Disease and after we exchanged a few emails, I decided to make an appointment with her Lyme Literate Medical Doctor (LLMD). The wait list was long, so I made the appointment and went on with my life waiting the few months until I would meet with the doctor.
In August I moved to Mississippi to attend the Masters of Science program of my dreams. I was accepted to study applied beef cattle reproductive physiology, what I had always wanted. Little did I know this dream was to be completely shattered and destroyed over the course of a week.
The move was extremely stressful, and my body completely shut down. I became so ill I could not hold a water glass, I couldn't eat, I couldn't sleep, I literally became a prisoner in my own body. My body had been fighting this illness for 13 years, and it gave up after the stress of the move.
I called the LLMD and flew to California immediately for an urgent appointment.
After doing bloodwork with my LLMD, I finally was able to receive some answers, even though they were not what I wanted to hear. After 13 years of living in the unknown, I found out I was still sick with Lyme Disease and Monocytic Human Ehrlichiosis and Granulocytic Human Ehrlichiosis.
My life has been turned upside down by these disease more than I ever thought possible.
I now live in Savannah, GA with my fiancee and have done my best to hold onto shreds of who I used to be. I started my own dog behavior and training business, specializing in Pit Bulls and other powerful breeds.
I also work for the local Humane Society and volunteer at the local Animal Control Shelter. Due to my illness, however I can only work 8-10 hours per week. Work is the only escape I have from the prison that is my illness. It is a time to put on a facade of happiness, confidence, and normalcy, even though it is most often a lie.
I have always loved Pit Bulls, and since I have been sick I find solace and feel a connection with these dogs. They are misunderstood animals caught up in a mess that is not their fault, which is how I feel in my own life. The dogs give me a sense of comfort I am thankful every day to have found.
Each day has become a struggle against my diminishing cognitive function, horrible joint, neck, and back pain, abdominal pain, and depression. This disease has taken nearly everything away from me and left me clammering to cling for dear life for what is left.
Although I feel broken and shattered, I am still alive, and I will fight this battle with all of the strength that I have. I hope this blog can help others suffering from similar illness realize they are not alone, no matter how alone they feel.
Friday, March 4, 2011
Memory Loss
When most people think of Lyme disease they think of swollen and painful joints. Unfortunately for many of us Lyme sufferers, this barely scratches the surface of the canyon of debilitating symptoms we experience.
For those of you that know me, you know that I am an extremely driven and motivated person. I thrive off of learning new things, trying new experiences, and satisfying my continuous craving to explore the world of science around us.
I know that I had some issues with my memory in college, most notably in my job as a manager at the Swine Center, however I ignored the issue and did my best to cope and laugh off my lapses in memory, even though they were disturbing to me.
Little did I know, what once were small insignificant forgetful blips on the radar, would become massive hurricanes of forgetfullness.
What us "Lymies" label neurological symptoms as is "head fog". Head fog is a difficult feeling to describe, and its one I was hoping never to experience...so much for hoping.
Head fog is a feeling of fuzziness in your brain, like you have lost cognitive function and the ability to process incoming stimuli and information correctly. I describe it like the feeling you have when you drink way too much at night and wake up at three in the morning to use the restroom....You are not quite drunk anymore, but you are not hungover yet either. It is that awful in-between dysfunctional feeling caught between just mentally fucked up and physically ill.
Let me tell you, it is hell. Head fog affects your short term memory, speech, and ability to perform simple daily tasks. I find myself pulling six water glasses out of the kitchen cabinets within a two hour period because I simply can't remember ever pouring the first glass, let alone the sixth. I also find myself struggling with conversations. My once articulate speech and expansive vocabulary has been widdled down to grasping for words in the middle of my sentences. Writing is therapeutic because I have the time to sit here and think about what I am trying to say, which is not the case in conversational speaking.
Head fog also causes you to do very odd things. I can't even count anymore how many times I get lost in my own neighborhood, turning onto the wrong street and not realizing it until I all of a sudden notice that I do not recognize the houses on the block. I have also gotten out of my truck leaving it turned on, or even still in drive. Thank God I noticed both of those slip ups before something bad happened like a stolen truck, or an accident.
Just the other day I had a bit of leftover tea in a mug, and I picked the mug up to go and pour the cold beverage down the kitchen sink and for some reason I poured it right onto the living room carpet. For a brief moment I actually thought I was standing over the kitchen sink. What the fuck, right? But for those of us living with this terrible Lyme symptom, incidents such as these are a daily occurence.
Today a storm is blowing into Savannah. It is overcast and gloomy. I used to dread cold and wintry days. They limited everything I used to love doing. It is sad, but now I look forward to stormy sad weather. When it is nasty outside, at least I don't feel like I am missing out on everything I once loved and enjoyed.
The clouds roll in, the wind howls through the trees outside and it sounds like a wolf crying towards the moon. The gray weather matches how I feel inside today...Cloudy and weighed down.
For those of you that know me, you know that I am an extremely driven and motivated person. I thrive off of learning new things, trying new experiences, and satisfying my continuous craving to explore the world of science around us.
I know that I had some issues with my memory in college, most notably in my job as a manager at the Swine Center, however I ignored the issue and did my best to cope and laugh off my lapses in memory, even though they were disturbing to me.
Little did I know, what once were small insignificant forgetful blips on the radar, would become massive hurricanes of forgetfullness.
What us "Lymies" label neurological symptoms as is "head fog". Head fog is a difficult feeling to describe, and its one I was hoping never to experience...so much for hoping.
Head fog is a feeling of fuzziness in your brain, like you have lost cognitive function and the ability to process incoming stimuli and information correctly. I describe it like the feeling you have when you drink way too much at night and wake up at three in the morning to use the restroom....You are not quite drunk anymore, but you are not hungover yet either. It is that awful in-between dysfunctional feeling caught between just mentally fucked up and physically ill.
Let me tell you, it is hell. Head fog affects your short term memory, speech, and ability to perform simple daily tasks. I find myself pulling six water glasses out of the kitchen cabinets within a two hour period because I simply can't remember ever pouring the first glass, let alone the sixth. I also find myself struggling with conversations. My once articulate speech and expansive vocabulary has been widdled down to grasping for words in the middle of my sentences. Writing is therapeutic because I have the time to sit here and think about what I am trying to say, which is not the case in conversational speaking.
Head fog also causes you to do very odd things. I can't even count anymore how many times I get lost in my own neighborhood, turning onto the wrong street and not realizing it until I all of a sudden notice that I do not recognize the houses on the block. I have also gotten out of my truck leaving it turned on, or even still in drive. Thank God I noticed both of those slip ups before something bad happened like a stolen truck, or an accident.
Just the other day I had a bit of leftover tea in a mug, and I picked the mug up to go and pour the cold beverage down the kitchen sink and for some reason I poured it right onto the living room carpet. For a brief moment I actually thought I was standing over the kitchen sink. What the fuck, right? But for those of us living with this terrible Lyme symptom, incidents such as these are a daily occurence.
Today a storm is blowing into Savannah. It is overcast and gloomy. I used to dread cold and wintry days. They limited everything I used to love doing. It is sad, but now I look forward to stormy sad weather. When it is nasty outside, at least I don't feel like I am missing out on everything I once loved and enjoyed.
The clouds roll in, the wind howls through the trees outside and it sounds like a wolf crying towards the moon. The gray weather matches how I feel inside today...Cloudy and weighed down.
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