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
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