Last monday, my husband and I had thought we had made some progress. My day started with a trip to the OB to have my IUD removed, thinking that could be the problem with my vaginal issues. After the removal, and some testing, we left to spend the day at the local hospital to investigate a lesion/ulcer that has been growing in/on my naso-pharynx since June. After discovering that I no longer have state funded insurance, I was given some rx's and sent on my way.
We did receive a call the following day explaining that because of the growth in my mouth, I had basically contracted every bacteria and virus possible. A typical person ingests millions of germs every day, with little to no cause for concern. But because, I had a nice warm place for them to settle and mature, I was literally re-introducing every germ into my bloodstream every time I swallowed. Numerous medications and vitamins/supplements later, we have seen some progress. Although, I am now a carrier for multiple things that are actually very frightening.
I then decided it was time to change not only my medication and supplement intake, but my diet as well. Our home is now mainly filled with vegan, gluten free, lactose free, sugar free, healthy foods. Lots of fresh produce, my new "wonder tea" that I created, numerous herbs and spices....And we are all seeing a difference. If we can't pronounce something on a label, we wont eat it. Obviously, everyone has a vice, mine being donuts and bacon cheeseburgers, but we are finding ways to incorporate without over doing it. :)
So after all of these changes, I thought there may be a light at the end of the tunnel. I'm feeling very well, sleeping thru the night in the first time in 7 weeks, my skin is bright, my disposition is positive, everything was just, well, perfect. Then today, I get a phone call from the OB I had seen last week. After reviewing my test results (she had noticed some "odd" things while doing my exam) and then comparing my lab tests with the ones done at the hospital the same day, the light slipped away a bit.
Not only do I have all of these bacteria, virus's, germs, etc in my throat/mouth/nose, but also in my cervix and uterus. Presumably, in my urinary/renal system as well, since my clinical history suggests it. Long story short, at least 3 of the virus's found in both locations (and we will find out if they are in my renal system in January), are very dangerous. I also tested positive as a diphtheria carrier, which I thought was an eradicated disease?! We don't have any concrete answers yet, once I meet with the urologist in January, my new PCP next week, and have a procedure done with the OB in February, than I will finally have some answers. Since 3 of the virus's found are "cancer causing", I'll have to endure a slew of tests. Which makes me wonder if back almost 4 years ago now, when they removed some of my lymph chain in my groin, and found "questionable cells" among them, if all along, I was developing what could end up being cancer. Nasopharyngeal, Cervical, Uterine and possibly even Renal. I'm 27 years old. I've been fighting, advocating, researching, doing everything I could to make sure I would never get to this point, and here it is.
So for now, I am continuing with my healthy life style choices, my supplements, medications and my positive attitude. Otherwise, I'd lose my mind. By February 14th, Valentines Day, I should know my future a little bit better. If not, my lawyer is going to have a field day! But even if it comes down to the big "C" word, I'm tough enough, spunky enough and determined enough to fight as hard as it takes.
Monday, December 12, 2011
Thursday, November 17, 2011
It's official...no more cow enzymes
We tried a few things to see if it truly is cheese, milk, ice cream, etc, that's been causing my problems. And what I've come to find, is that every time I eat cheese, ice cream, milk or sour cream before bed, I can't sleep. My throat is sore (typically because a small lesion has formed), my nose get's super congested and I then spend the next day feeling like I had gotten hit by a truck. Fatigue, migraine and sometimes even a fever.
So now, I am going to go 2 weeks without consuming ANY of those trigger foods. And I must mention, that cheese, ice cream, cereal and sour cream (on nachos, burritos, etc) are my favorite things in the entire world. Other than my mothers chocolate chip cookies. So, that being said, I'm sad.
So starting the day after thanks giving, (next friday) I will being going 2 weeks without these foods. If I spend the next 2 weeks feeling better than I have been feeling, then I guess it'll be time to explore the options of of replacement foods....We've been wanting to go more main stream organic any way, so I guess it's time!
So now, I am going to go 2 weeks without consuming ANY of those trigger foods. And I must mention, that cheese, ice cream, cereal and sour cream (on nachos, burritos, etc) are my favorite things in the entire world. Other than my mothers chocolate chip cookies. So, that being said, I'm sad.
So starting the day after thanks giving, (next friday) I will being going 2 weeks without these foods. If I spend the next 2 weeks feeling better than I have been feeling, then I guess it'll be time to explore the options of of replacement foods....We've been wanting to go more main stream organic any way, so I guess it's time!
Sunday, October 16, 2011
Simple. Yet not.
The last few weeks have been uneventful. Behcet's wise at least. A minor throat lesion. A stomach virus that I don't think was Behcet's related. And a few days of feeling run down. But for the most part, (knock on wood) it's been smooth. Had an appointment for an evaluation for SSI/Disability. So hopefully, that ball will start rolling a little faster with that. Home life is a bit hectic, but manageable. Weight has dropped a little bit, but I think that's because I'm off my prednisone for the moment. Other than that, life's kind of boring. So I guess, that's it for now.
Thursday, September 29, 2011
Behcet's walk & talk
2 weekends ago, my husband and I made the 8 and a 1/2 hour trek to Long Island, New York to attend the Behcet's walk & talk. We both found the experience exhausting (haha) but incredibly informative. I learned a lot from the specialists information. Other attendants and I thought the discussion was a little too "lecture-esque", sine it felt more like a 3rd year college biology lecture. Power point presentation and all. But the information he did provide was very helpful. I learned that some of my symptoms that were before not associated with my Behcet's, in fact, should be. I learned that being of perisian descent, makes me genetically linked to Behcet's, where before, only people of middle eastern and/or greek descent were considered actual behcet's patients. I also was surprised to discover that I am one of the few (especially in my age group) to have almost all of the inclusive symptoms, yet am not receiving the adequate treatment.
After the "learning" we took some time to enjoy "Dylan's Candy Bar", a large candy store, that ended up only being about 2 miles away from the hotel. I <3 candy stores. :)
Today's update, my weight is back down to 128 lbs. I'm much happier and more comfortable with this number. My behcet's flares have been minimal, with only a throat lesion rearing it's ugly head. I honestly don't think it ever goes away, but merely becomes aggitated but certain foods, lack of sleep, stress, etc....But it's manageable.
Even with the new arrival of some unanticipated stress in my life, I seem to have my disease under control. Thank goodness. Update again soon.
After the "learning" we took some time to enjoy "Dylan's Candy Bar", a large candy store, that ended up only being about 2 miles away from the hotel. I <3 candy stores. :)
Today's update, my weight is back down to 128 lbs. I'm much happier and more comfortable with this number. My behcet's flares have been minimal, with only a throat lesion rearing it's ugly head. I honestly don't think it ever goes away, but merely becomes aggitated but certain foods, lack of sleep, stress, etc....But it's manageable.
Even with the new arrival of some unanticipated stress in my life, I seem to have my disease under control. Thank goodness. Update again soon.
Wednesday, August 24, 2011
Quick update
Lately things have been going relatively well. A short burst of a flare, that only last a couple of days and was nothing serious. Been feeling lethargic lately, and thought I may be getting another bad one, but I've been doubling up on my cinnamon honey and garlic olives. Also, doubling my borax and staphylsagria pills, so hopefully, I'll kick it. I found this tea tree olive leaf throat spray that works AMAZINGLY! It's my new favorite item for sure. My weight is still up, and doesn't seem to be going anywhere! Very excited, although, none of my clothes fit, which is a bummer. Time for some shopping!
Tuesday, July 26, 2011
So far....
So far my problems consist of:
-Vaginal ulcerations & oral ulcerations (see mouth ulcer photo at the bottom of this page)
-Nasal & pharynx lesions ( see throat lesion photo at the bottom of the page)
-Skin lesions on my torso
-Severe weight loss, regardless of steroid treatment
-Kidney involvement (seeing urologist & getting CT/MRI next week)
-Eye inflammation and eye lesions, causing ocular migraines, burning and loss of vision temporarily
-Fever spikes of 102 degrees (is the norm, has gotten higher), not relieved by tylenol
-Arthritis in my knees, elbows and wrists
-Intestinal lesions causing stomach pain, swelling and bowel problems
-Nerve pain in one spot on the left of my spine, causing right sided facial numbness
Oh and I was told to increase my intake of natural antioxidants, example: blueberries, pistachios, raspberries, pomegranate juice, etc, BUT when I eat any of those, my face swells up. I mean, swells up. I end up looking like a bad face lift/botox case. So, my antioxidant intake now consists of 2 large greek olives stuffed with a whole garlic glove and green tea. WOO HOO!
The pain is sometimes so severe, that a simple blood draw or bump on the hand causes me to drop to my knees screaming in excruciating pain. (My doctor has witnessed this happening after a blood draw) The lesions in my nose and on my pharynx have gotten to the point recently, that I can not talk, swallow and sometimes even breathing is a challenge. The doctors are now concerned that my renal involvement is far more serious than thought before. Although I feel like I have stones or a kidney infection, my blood tests and u/a's show no infection, but that I am passing large amounts of red blood cells, so many infact, that my urine should be pure blood. My white counts remain around 20,000, while my red count is fading quickly down around 100. 5 medications, multiple vitamins & supplements, changes in my diet, as much rest as possible, and still not a perfect balance.
I am no longer validating myself to the people around me. The people who love and support me, read this, they do research, they know that what I am going through, is THAT bad. I am strong, I'm a fighter and I'll get through it. Although this disease is not curable, and at most times, not treatable, it can be manageable. I will never be the way I was, but over time, I can become who I will be. It will just take time.
-Vaginal ulcerations & oral ulcerations (see mouth ulcer photo at the bottom of this page)
-Nasal & pharynx lesions ( see throat lesion photo at the bottom of the page)
-Skin lesions on my torso
-Severe weight loss, regardless of steroid treatment
-Kidney involvement (seeing urologist & getting CT/MRI next week)
-Eye inflammation and eye lesions, causing ocular migraines, burning and loss of vision temporarily
-Fever spikes of 102 degrees (is the norm, has gotten higher), not relieved by tylenol
-Arthritis in my knees, elbows and wrists
-Intestinal lesions causing stomach pain, swelling and bowel problems
-Nerve pain in one spot on the left of my spine, causing right sided facial numbness
Oh and I was told to increase my intake of natural antioxidants, example: blueberries, pistachios, raspberries, pomegranate juice, etc, BUT when I eat any of those, my face swells up. I mean, swells up. I end up looking like a bad face lift/botox case. So, my antioxidant intake now consists of 2 large greek olives stuffed with a whole garlic glove and green tea. WOO HOO!
The pain is sometimes so severe, that a simple blood draw or bump on the hand causes me to drop to my knees screaming in excruciating pain. (My doctor has witnessed this happening after a blood draw) The lesions in my nose and on my pharynx have gotten to the point recently, that I can not talk, swallow and sometimes even breathing is a challenge. The doctors are now concerned that my renal involvement is far more serious than thought before. Although I feel like I have stones or a kidney infection, my blood tests and u/a's show no infection, but that I am passing large amounts of red blood cells, so many infact, that my urine should be pure blood. My white counts remain around 20,000, while my red count is fading quickly down around 100. 5 medications, multiple vitamins & supplements, changes in my diet, as much rest as possible, and still not a perfect balance.
I am no longer validating myself to the people around me. The people who love and support me, read this, they do research, they know that what I am going through, is THAT bad. I am strong, I'm a fighter and I'll get through it. Although this disease is not curable, and at most times, not treatable, it can be manageable. I will never be the way I was, but over time, I can become who I will be. It will just take time.
Friday, July 15, 2011
Update after a long few months gone....
The last time I posted was 3 days before my daughter, Elia was in a terrible freak accident at the local mall. An outboard boat motor on display fell on her, breaking her left femur & pelvis, leaving her in a body cast for the following 6 weeks. A month went by with our household picking up the pieces, trying to get back into a routine, trying to get back to our lives.
Then, the entire month of May, I was down for the count. At least 2 Doctor's visits a week, labs, tests, medications, everything. I couldn't move. It felt like I was dying. For 5 weeks, I laid on my living room couch, only getting up to go to appointments and to the bathroom. Lesions everywhere there could be, kidney's were on the verge of shutting down, fevers over 103 degrees that would spike without warning....And one day, it was just gone. As the weeks progressed, my outbreaks were minimal, occasional bursts of lesions or the random "flu-like" day, but with a new problem, severe insomnia. There were times I didn't sleep for 3 days. I tried, I just could not shut down. The end of June, my eyes started bothering me, and when my husband investigated, we found I have 4 lesions, 2 underneath each eyelid. Other than being painful and annoying, they only caused me one night of no vision.
Then, 2 weeks ago, it got bad. At first, I thought I was getting a cold after being up for 3 days. I mean, a few days without sleep and you're bound to develop some sort of virus. Then my throat started to get lesions on it. Only a few small ones that I could barely see at first, then all the way down, like a whiteish sheet blanketing my throat. Then, the right nostril started to hurt, and when I looked, I saw that it was one big lesion. Then my tongue, my uvula, the roof of my mouth....It was all getting covered. Then we noticed my ear, then the Fevers started, and my body started shutting down again. It is day 15, now. Medications are now clearing up my throat, and my ear, but the roof of my mouth is still a mess. And 3 days ago, genital lesions started rearing their ugly head. Then today, another eye lesion.
I have been battling with this disease since October of last year. I have tried a few different medication combinations, rest, exercise, everything "home" remedy and vitamin that is deemed safe for me to try. Whether it's a dual diagnosis, a misdiagnosis or just not the right meds, I don't care. I just want my body back. I have learned to deal with the physical pain. I can put on a happy face and make it through the day if I truly have to, but it's the emotional pain, the not knowing, the loss of capabilities, that's the worst. Simple tasks are daunting, and my life has become consumed with the disease. And now, It's time to fight back.
Then, the entire month of May, I was down for the count. At least 2 Doctor's visits a week, labs, tests, medications, everything. I couldn't move. It felt like I was dying. For 5 weeks, I laid on my living room couch, only getting up to go to appointments and to the bathroom. Lesions everywhere there could be, kidney's were on the verge of shutting down, fevers over 103 degrees that would spike without warning....And one day, it was just gone. As the weeks progressed, my outbreaks were minimal, occasional bursts of lesions or the random "flu-like" day, but with a new problem, severe insomnia. There were times I didn't sleep for 3 days. I tried, I just could not shut down. The end of June, my eyes started bothering me, and when my husband investigated, we found I have 4 lesions, 2 underneath each eyelid. Other than being painful and annoying, they only caused me one night of no vision.
Then, 2 weeks ago, it got bad. At first, I thought I was getting a cold after being up for 3 days. I mean, a few days without sleep and you're bound to develop some sort of virus. Then my throat started to get lesions on it. Only a few small ones that I could barely see at first, then all the way down, like a whiteish sheet blanketing my throat. Then, the right nostril started to hurt, and when I looked, I saw that it was one big lesion. Then my tongue, my uvula, the roof of my mouth....It was all getting covered. Then we noticed my ear, then the Fevers started, and my body started shutting down again. It is day 15, now. Medications are now clearing up my throat, and my ear, but the roof of my mouth is still a mess. And 3 days ago, genital lesions started rearing their ugly head. Then today, another eye lesion.
I have been battling with this disease since October of last year. I have tried a few different medication combinations, rest, exercise, everything "home" remedy and vitamin that is deemed safe for me to try. Whether it's a dual diagnosis, a misdiagnosis or just not the right meds, I don't care. I just want my body back. I have learned to deal with the physical pain. I can put on a happy face and make it through the day if I truly have to, but it's the emotional pain, the not knowing, the loss of capabilities, that's the worst. Simple tasks are daunting, and my life has become consumed with the disease. And now, It's time to fight back.
Thursday, January 27, 2011
Test prep time
So, tomorrow is the day of my upper endoscopy and colonoscopy.
I have not eaten since last night, and could seriously kill someone for a cheese burger. No joke.
The prep, although I am having a bit of cramping, hasn't killed me yet. It's the starvation that is kicking my ass. I typically eat 3000 calories per day to maintain my weight, which doesn't even work some days. Some days, I still lose a couple pounds. A day with no calories....we'll see how this goes.
My weight this morning was 112.4 with my clothes on. And I plan to weigh myself again right before we leave at 9am.
I feel like ass. My stomach is killing me. And all I want is some freakin' food!
I'm done. Good night.
I have not eaten since last night, and could seriously kill someone for a cheese burger. No joke.
The prep, although I am having a bit of cramping, hasn't killed me yet. It's the starvation that is kicking my ass. I typically eat 3000 calories per day to maintain my weight, which doesn't even work some days. Some days, I still lose a couple pounds. A day with no calories....we'll see how this goes.
My weight this morning was 112.4 with my clothes on. And I plan to weigh myself again right before we leave at 9am.
I feel like ass. My stomach is killing me. And all I want is some freakin' food!
I'm done. Good night.
Wednesday, January 19, 2011
On a more positive note!
I do have to add, that I have the most supportive family. My parents are amazing and would do anything for me. I have the most loving husband who does whatever he can (in his own way, hehe). The best friend (wifey) that I could ask for.....Even my boss, even though she's my boss, she still feel's for me, worries about me, does research for me and cares about my well being.
The people who love me and support me and stand by me no matter what, they are who matter. It doesn't matter if it's a good day, or a bad one. They always love me for me and don't even think about my disease.
They are amazing & I love them more than anything. <3
The people who love me and support me and stand by me no matter what, they are who matter. It doesn't matter if it's a good day, or a bad one. They always love me for me and don't even think about my disease.
They are amazing & I love them more than anything. <3
Hmmmm
I typically try to be a positive person. Especially when it comes to people. I have always been the butt of jokes, the one people talk about. But, I don't usually indulge in the same behavior. I know how much it hurts, so therefore, I don't do it to anyone.
That being said. Will people please grow up? Apparently, people are constant teenagers who have nothing better to do than to talk about other people. To kick people when they are down.
How came someone such as myself, who does so much for people, be treated the way that I am?
It boggles my freakin' mind. Karma's a bitch. And, unfortunately, I must have had a little bit out there, because I can't seem to get away from these people who want nothing more than to verbally bash me.
I am sick. I have a disease. This is not a joke. It's not something I made up. It's real. Whether you think I am exaggerating or not, it doesn't matter. You should not have an opinion about something that you know nothing about. To be honest, I think I, (what's the opposite of exaggerate?) (undermine?), I guess, undermine what I go through on a daily basis. I've said it before, imagine being hit by a truck. And all my fellow peers with Behcet's will agree. That is what it feels like.
I talked with one of the cardiologist's at work today. He had heard I was diagnosed with Behcet's so he asked me what treatment I was doing. When I replied that I hadn't started treatments yet, his response was "And you're working?!" He was surprised that I would be working, with Behcet's, without any treatment except ibuprofen. So HA! People who know about this disease, know how bad it really is. And until you live in my body. Shut the hell up. Seriously.
That being said. Will people please grow up? Apparently, people are constant teenagers who have nothing better to do than to talk about other people. To kick people when they are down.
How came someone such as myself, who does so much for people, be treated the way that I am?
It boggles my freakin' mind. Karma's a bitch. And, unfortunately, I must have had a little bit out there, because I can't seem to get away from these people who want nothing more than to verbally bash me.
I am sick. I have a disease. This is not a joke. It's not something I made up. It's real. Whether you think I am exaggerating or not, it doesn't matter. You should not have an opinion about something that you know nothing about. To be honest, I think I, (what's the opposite of exaggerate?) (undermine?), I guess, undermine what I go through on a daily basis. I've said it before, imagine being hit by a truck. And all my fellow peers with Behcet's will agree. That is what it feels like.
I talked with one of the cardiologist's at work today. He had heard I was diagnosed with Behcet's so he asked me what treatment I was doing. When I replied that I hadn't started treatments yet, his response was "And you're working?!" He was surprised that I would be working, with Behcet's, without any treatment except ibuprofen. So HA! People who know about this disease, know how bad it really is. And until you live in my body. Shut the hell up. Seriously.
Tuesday, January 18, 2011
Seriously?!
I just have to say, why is it that people think that autoimmune disorders are temporary?
People, seeing me in pain, will say, "I didn't realize anything was wrong today?"
Seriously? Yes, some days are worse than others. But it's not something that comes an goes. At least, not for me.
Some days, I'm a useless lump. Some days I can function. That's about it. Plain an simple.
If you don't believe me, do some research. Look at my documentation from my doctor's office. Look at my test results. Obviously, I'm not making this up. It's not fun for me. I don't like being this way. I don't like feeling like shit all the time. But I do. It's part of me now, and I have learned to embrace it and learn from it. It doesn't make me a bad person, it just means I have limitations and I have to take much better care of myself.
That's my vent for the night.
Love me or hate me. This is who I am. I am more than a diagnosis.
People, seeing me in pain, will say, "I didn't realize anything was wrong today?"
Seriously? Yes, some days are worse than others. But it's not something that comes an goes. At least, not for me.
Some days, I'm a useless lump. Some days I can function. That's about it. Plain an simple.
If you don't believe me, do some research. Look at my documentation from my doctor's office. Look at my test results. Obviously, I'm not making this up. It's not fun for me. I don't like being this way. I don't like feeling like shit all the time. But I do. It's part of me now, and I have learned to embrace it and learn from it. It doesn't make me a bad person, it just means I have limitations and I have to take much better care of myself.
That's my vent for the night.
Love me or hate me. This is who I am. I am more than a diagnosis.
Friday, January 14, 2011
Something to think about....
Today was a better day. Minimal issues. Knee pain was really the only 'big deal'. It's funny, the whole 'pain tolerance thing'.
When you go to the hospital, or your doctor's office, they ask you your pain on a scale of 1 - 10. 10 being extreme pain. So, I have to ask, how should you define it? See, on a normal day, I rate my pain a 7. Tolerable, but almost over the edge of too much. But most people, being in my body, would probably say 10. And I don't think I am exaggerating.
I can get large tattoos and not flinch. I can fall down a set of stairs and only pick myself up and recollect myself for a moment. For most people, that would be too much. I went through labor, with no drugs, and honestly, would do it again if it meant I didn't have another 3 year old some day.
Pain has never been a factor for me. Until it became a daily occurrence. I can function, I can make it through the day in a level of pain that would probably make most not even get out of bed. If it gets to the point where I am useless, it's pretty bad.
Lately, it's been that bad. It's gotten to the point where I can't keep going. I describe it as 'flu-like' symptoms to people to let them understand. But that it putting it modestly. It's more like being hit by a truck. I don't care what your pain tolerance is, if you get it by a truck, you're taking a few days off.
That being said, I hate pain scales. I don't like people trying to compare my daily suffering to the time they broke their arm. That pain, goes away. This pain, doesn't. And unfortunately, it may not. Ever.
Cleaning, painting, picking up my daughter, are all becoming work. They aren't simple, mundane tasks anymore. They take a lot out of me.
I hope all you healthy people out there start noticing the little things. Don't take those simple tasks for granted. You don't know, when you wont be able to do them any more.
Like Jimmy Buffett once said "Be kind to your knee's you'll miss them when their gone..." Ha. Ain't that the truth!?
When you go to the hospital, or your doctor's office, they ask you your pain on a scale of 1 - 10. 10 being extreme pain. So, I have to ask, how should you define it? See, on a normal day, I rate my pain a 7. Tolerable, but almost over the edge of too much. But most people, being in my body, would probably say 10. And I don't think I am exaggerating.
I can get large tattoos and not flinch. I can fall down a set of stairs and only pick myself up and recollect myself for a moment. For most people, that would be too much. I went through labor, with no drugs, and honestly, would do it again if it meant I didn't have another 3 year old some day.
Pain has never been a factor for me. Until it became a daily occurrence. I can function, I can make it through the day in a level of pain that would probably make most not even get out of bed. If it gets to the point where I am useless, it's pretty bad.
Lately, it's been that bad. It's gotten to the point where I can't keep going. I describe it as 'flu-like' symptoms to people to let them understand. But that it putting it modestly. It's more like being hit by a truck. I don't care what your pain tolerance is, if you get it by a truck, you're taking a few days off.
That being said, I hate pain scales. I don't like people trying to compare my daily suffering to the time they broke their arm. That pain, goes away. This pain, doesn't. And unfortunately, it may not. Ever.
Cleaning, painting, picking up my daughter, are all becoming work. They aren't simple, mundane tasks anymore. They take a lot out of me.
I hope all you healthy people out there start noticing the little things. Don't take those simple tasks for granted. You don't know, when you wont be able to do them any more.
Like Jimmy Buffett once said "Be kind to your knee's you'll miss them when their gone..." Ha. Ain't that the truth!?
Thursday, January 13, 2011
Another day...
Yet another bad day. A day where the pain just takes over. My whole being hurts. Everyone says "Stay positive." They, obviously, have never endured anything like this.
There are good days & bad days. And some days there are periods of both. Not knowing, for me, is the hardest.
I'm a planner. That's what I do. I plan ahead months in advance. I make lists, every day. I calculate everything. I know what someone is thinking before they start to say it. I hate being spontaneous and I hate surprises. I, I guess, am a creature of habit. Now...When you find out you have a disease/disorder/syndrome....but....no one quite knows what it is, you can see my dilemma. I can't control this. I can't even plan to wake up for work in the morning. I can't even have a daily schedule anymore. Some days I am up all night, therefore, I sleep all day. Aside from the pain I am in, the situation itself is driving me insane! And on top of it all, the top emotion I get from people is pity. I am the caregiver. I am the one who is supposed to help others. I keep the balance in my own world. Now, I can't do any of that. It's me who needs the help. Me who is scared to tell my loved ones that it's 'another bad day' for fear that they will judge me, pity me....Something. This whole disease business has made me crazy. Irrational at times. I have always been a positive person, but she's been slipping away, rather quickly. And I have to make sure she doesn't disappear all together.
Another bad day. Another whirlwind of emotions.
If any one is out there reading this. I'm glad you care. And I hope my severe negativity, is counter balance by my quick wit. Ha. I'm funnier in person.
Without my humor, i'd be a miserable human being. Seriously.
There are good days & bad days. And some days there are periods of both. Not knowing, for me, is the hardest.
I'm a planner. That's what I do. I plan ahead months in advance. I make lists, every day. I calculate everything. I know what someone is thinking before they start to say it. I hate being spontaneous and I hate surprises. I, I guess, am a creature of habit. Now...When you find out you have a disease/disorder/syndrome....but....no one quite knows what it is, you can see my dilemma. I can't control this. I can't even plan to wake up for work in the morning. I can't even have a daily schedule anymore. Some days I am up all night, therefore, I sleep all day. Aside from the pain I am in, the situation itself is driving me insane! And on top of it all, the top emotion I get from people is pity. I am the caregiver. I am the one who is supposed to help others. I keep the balance in my own world. Now, I can't do any of that. It's me who needs the help. Me who is scared to tell my loved ones that it's 'another bad day' for fear that they will judge me, pity me....Something. This whole disease business has made me crazy. Irrational at times. I have always been a positive person, but she's been slipping away, rather quickly. And I have to make sure she doesn't disappear all together.
Another bad day. Another whirlwind of emotions.
If any one is out there reading this. I'm glad you care. And I hope my severe negativity, is counter balance by my quick wit. Ha. I'm funnier in person.
Without my humor, i'd be a miserable human being. Seriously.
Wednesday, January 12, 2011
A simple introduction...although, there's nothing simple about me
Who knows who will read this...but, I thought I'd put my thoughts on the net for the world to embrace.
I am 26 years old. A wife, A mother, A daughter. A friend. And I am struggling with some kind of autoimmune, multi systemic, possibly, connective tissue disorder.
I have been dealing with severe pain, mostly in my knees and hips. Oral & genital lesions. Eye pain/blurred vision. Migraines. Sleeplessness & fatigue. Chronic swollen lymph nodes and bruising. As well as extreme weight fluctuations over the last 3.5 years.
I have had multiple labs tests, x-rays, CT scans, EKG's, MRI's and soon, a colonoscopy & upper endoscopy. Yipee Skippee.
So far, we have come to the conclusion of 'Behcet's disease.' But recent lab results, may change that to Lupus. I wont know until all of my testing is complete.
This blog is meant to inform people. To show people what it is like to live day to day in pain and not know what the hell is going on with your body.
I have spent the last 3.5 years being called a hypochondriac . Even with abnormal labs, a lymph node biopsy showing inflammation and many more clinical findings. I miss on average a day of work per week, which is putting a damper on my employ-ability.
I know there are thousands of people out there, just like me. Living every day wondering if it will be better or worse than the day before. Worried about what other people think, if they believe you are as sick as you feel. Researching the internet day after day trying to find answers.
I will not post every day. But, when I am having a profound moment, or some new revelation happens, I plan to let who ever cares, know. I am hoping with my oddly adorable sense of humor and the support of my family, I can get people interested in my life.
Who knows, maybe this will start a whole new movement of people who have unknown disorders.
I am 26 years old. A wife, A mother, A daughter. A friend. And I am struggling with some kind of autoimmune, multi systemic, possibly, connective tissue disorder.
I have been dealing with severe pain, mostly in my knees and hips. Oral & genital lesions. Eye pain/blurred vision. Migraines. Sleeplessness & fatigue. Chronic swollen lymph nodes and bruising. As well as extreme weight fluctuations over the last 3.5 years.
I have had multiple labs tests, x-rays, CT scans, EKG's, MRI's and soon, a colonoscopy & upper endoscopy. Yipee Skippee.
So far, we have come to the conclusion of 'Behcet's disease.' But recent lab results, may change that to Lupus. I wont know until all of my testing is complete.
This blog is meant to inform people. To show people what it is like to live day to day in pain and not know what the hell is going on with your body.
I have spent the last 3.5 years being called a hypochondriac . Even with abnormal labs, a lymph node biopsy showing inflammation and many more clinical findings. I miss on average a day of work per week, which is putting a damper on my employ-ability.
I know there are thousands of people out there, just like me. Living every day wondering if it will be better or worse than the day before. Worried about what other people think, if they believe you are as sick as you feel. Researching the internet day after day trying to find answers.
I will not post every day. But, when I am having a profound moment, or some new revelation happens, I plan to let who ever cares, know. I am hoping with my oddly adorable sense of humor and the support of my family, I can get people interested in my life.
Who knows, maybe this will start a whole new movement of people who have unknown disorders.
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