Hi I’m Nancy. You probably found this link by accident or you are on one of the lists or discussion groups I am in. If you had asked me a few years ago if I would have participated in a “support group”, I probably would have laughed. Since I have gotten more ill, however, they have been indispensable. Not only do I have people...even if they are “e mail” friends...that understand, but I like the feeling I know that I helped someone else when something comes up that I have experience with. You’ll see that my web address is /theforce/littlenancy. That’s kind of an old running joke about my height. Angelfire gives you titles to choose from, and because of the old Yoda jokes I picked “the force”, and of course my nickname for years was either Little Nancy or Munchkin, depending on who you were talking to. I haven’t been called Munchkin in years (even though I did dress as the lolly pop munchkin from Oz at a work Halloween party a few years back...and won the contest!) I think because I am grossly underweight from being sick and rather than being cute and tiny like I was when I was younger, now I just look like a little bity skeleton on crack. I have a disease called Sjogren’s Syndrome (pronounced Show-Grins). Its an autoimmune disease, which means my immune system attacks my healthy organs and glands as if it were rejecting them. It seems to have started after a bad virus I had in the spring of 1987. It took years for the disease to become full blown as it is today. I had wax and wane symptoms, with long periods of remission, until after my daughter was born in 1997. Since then, it has increased until now it is very obvious. From what I understand, if you are diagnosed early, and treatment is begun at a reasonable time, you do better. I didn’t have that luxury. I was getting more and more ill for 16 years until it was recognized. I guess no one ever believed me. I gave up trying to get anyone to believe me for quite a few years. Looking back, its almost funny that I’d already given up when an old ex-boyfriend Bob said there was something wrong with me, maybe that was 1992...that my problems were not normal, and at the time I laughed at him the way that doctors and family members had laughed at me. I remember being in a flare up at the time (which I didn’t know what it was, I’d been told over and over it was stress or me being dramatic) and blowing him off like he didn’t know what he was talking about. Me? Admit there was a problem so I could be laughed at again? Yeah, Right. I even doubted myself that any of it was real by that time. He thought it was a weird eating disorder that no one had found yet, he just knew that I would have to eat or I would be very sick and weak and emotional. Then, I would get sick to my stomach anyway. He asked me to go to the doctor, and I was checked for blood sugar and a few other things, but again, nothing was “wrong with me” except for a cyst on my ovary. I was like, See? I’m fine. Case closed. I’d given up and accepted that I was different. I became so much worse in 1998, 99, and then again in 2002 and spring of this year that I realized I had to try again if for no other reason than I had to be here for my daughter. I was jerked around by docs with misdiagnosies and useless tests for a long time. Some people are “lucky” that Sjogren’s only attacks the eyes and saliva glands and causes fatigue (define luck, right?). I have a nasty case of it. I have it not only in my eyes and saliva glands, its in my gastrointestinal tract (which is why I am so thin), my muscles (causing enlargement, pain and atrophy), all my moisture secreting glands (girl parts involvement...I won’t gross you out with the details) including the lacrimal glands in my scalp which causes hair loss due to no oils in my hair, sweat glands (which is OK, because while I can still sweat my feet do not sweat anymore at all so my feet never stink...its just that when I eat something spicy my back and head will burn and sting because I cannot sweat “fast enough”), my thyroid, my teeth, my lymph nodes, arthritis, my lungs and esophogus, my sinuses, my nervous system, my right ear, my veins and I have the fatigue and the cognitive problems. For whatever reason, some people with autoimmune problems and thyroid problems get what is called “brain fog”. We basically say stupid shit and it takes longer to think than normal. I think it has to do with not getting enough hormones and amino acids to the brain for regular function since people with these conditions lack T3 hormone and do not absorb fats and proteins correctly. Both T3 and amino acids are necessary for the mind to work and to create normal neurotransmitters. I take Armour for my thyroid and L-Tyrosine for brain function and Autotomic Nervous system function. Your ANS controls your “fight or flight reaction” to stress, and tells the brain and adrenals when to release the fight or flight hormones into your body. I didn’t have non-epherderine working properly, which is needed to turn off your nervous or “panic” reactions. This used to cause me a lot of unneeded stress. L-Tyrosine is the amino acid that is used to make the “adrenaline” and “non-adrenaline” hormones. My frustration had no “brakes”, and adding L-Tyrosine in powered form in a capsule helps me be more hormonally balanced. I added selenium, which is needed for my thyroid hormones, also magnesium and Co Q 10 for my heart palps, B complex for adrenal and blood health, iron in massive quantities because I am very chronically iron deficient from malabsorbtion, Flax seed oil for my cholesterol and hair, and I am pretty sure my doc is going to put me on estrogen once I get the levels done. I am at risk for developing lymphoma (cancer of the lymph nodes) later down the line, so I have to be diligent in having the doc check my glands for changes. One of my docs thought that was what I had already, and I had to get MRI’s and MRA’s and about 20 blood tests. That was a stressful early July for me when they just didn’t know. Most people with the disease do not get the cancer, and my Rhumetologist seems to think I will be OK and tells me not to worry. I do worry anyway. Migraines from the vein and neck muscle problems are pretty common. Top it off that I have a compressed disc in my neck with pieces of bone growing into my spine (spondylosis) and you have one unhappy camper over here. The fatigue can be crushing at times, where I just want to sleep. Sometimes my face hurts so badly when my right saliva gland swells or my sinus by my ear swells that I actually go numb. I am losing the hearing in my right ear...I am unsure if it is nerve damage from swelling or if it is from the fluid. My sinuses no longer drain, so I have constant fluid in my ears, especially the right. Sometimes the pressure is terrible, but there is nothing they can “give” me. I don’t get infected and I cannot take cold medicine or allergy medicine with having SS. I always feel like I have been punched in the chest. That’s a combo from feeling dry, acid reflux, and muscle problems. I am always popping out my ribs because my chest muscles do not hold them together anymore. I hurt myself trying to start my lawnmower in the spring and have chest and sternum pain ever since. My attitude? Well, I think it is pretty good. I was pretty bad for a few years without proper diagnosis and lived through it. Now that I am on Plaquenil for the SS, it does help the aches and pains and lifts the fatigue a bit. I fight it, try to ignore it, and try to just go about my business. The symptoms come and go...while its always there, its better and worse depending on whether or not I am in an “attack” or “flare”. Its to the point where I am afraid of the flares, since they are so intense. This past early summer, I had the worst one of my life, the pain was really bad and even when I was taking pain pills. I couldn’t even think straight and honestly all I wanted to do was cry...but I hate getting all weak in front of people. I never like to admit I don’t feel well, and keep trying to function, because otherwise I feel like I am giving in to it. I lost a lot of hair and have weird dark spots above my lip (I feel like I look like I have a mustash. If it was hair, I’d be ridding myself of aunt bunny...but this is discoloration that will not even fade with bleach...I know I have tried.) and on my cheek. On my cheek it looks like freckles that just “appeared”. I think its from having low cortisol, because my recent scars are hyper-pigmented. Spider veins on my face, too. Not to mention that I have sinus problems that make my face swell ever so slightly, match that with the corners of my jaw always swollen, so I have lines on my face that make me look way older than I am. I see myself...little Munchkin me...as a craggy old lady. How I feel about my looks went down the tubes...so I try to focus on how I feel and get healthy enough to have fun and forget it. I am a little embarassed by it though. Emotionally, I am better than I was a year ago. I have a handle on what’s wrong and stuff. I still am a little withdrawn and quiet (except with the email groups...I can write, I just still hate to talk because I am always afraid I will say the wrong thing). I have a wonderful daughter who needs me to be healthy and happy, and I never admit when I feel bad to her anymore. Stress causes attacks and flare ups, so I try to avoid it. I was an outgoing, positive, people person most of my life. I skated all the time, worked with kids and horses, held physical jobs, took dance, liked recreational sports with friends like football and basketball and street hockey and frisbee. Even if it was something I completely sucked at, I still wanted to play and be involved. In 1990 I was in the Garden State games speed skating. I had just the beginnings of this disease back then, and still had more good days than bad. Now I just try to get through each day and do the best I can with what I have. Just as I was feeling better this summer, I had to have my cat put to sleep, which totally crushed me and started me up all over again. I fought back the tears for two days...probably should have just let myself cry because holding it in made it worse. I hate to cry now...my tears are not normal. They are “sticky” because my tear ducts do not produce anything unless I do cry, when they finally produce something, my tear ducts burn and my tears crust on my face and my eyes swell. Sometimes I think if I start I will not be able to stop. I do fight this. I refuse to give in or give up again. Some days I want to. So it is hard. I am officially humbled and humiliated. Since I will never be Munchkin again, I am having to find a new definition of myself. I still do not know what that is, but I am trying. I don’t want pity. I don’t even know that I want compassion. I know I am strong under it all, even when I am feeling weak. Yet, to not feel like I can find the words to ever express myself verbally, to have intelligence in my mind and not sound intelligent when I speak, to never be able to think of a quick or funny come back anymore when that used to be something I was infamous for, to be forgetful when I am hurting, and to be afraid...well, those are things I never was before. And to have to incorporate that into my personality...I feel dry not only in my body but in my mind. They say you have to tear it down in order to rebuild it...like the Phoenix from the ashes...I’ll come back stronger than before. If I can help someone else along the way, it will all be worth it. Blessings, Nancy Other Pages on my site My Animals Pictures of Me Poetry Navy Advancement Help (this will take you to another site, but feel free to go check it out!)
You’ll see that my web address is /theforce/littlenancy. That’s kind of an old running joke about my height. Angelfire gives you titles to choose from, and because of the old Yoda jokes I picked “the force”, and of course my nickname for years was either Little Nancy or Munchkin, depending on who you were talking to. I haven’t been called Munchkin in years (even though I did dress as the lolly pop munchkin from Oz at a work Halloween party a few years back...and won the contest!) I think because I am grossly underweight from being sick and rather than being cute and tiny like I was when I was younger, now I just look like a little bity skeleton on crack.
I have a disease called Sjogren’s Syndrome (pronounced Show-Grins). Its an autoimmune disease, which means my immune system attacks my healthy organs and glands as if it were rejecting them. It seems to have started after a bad virus I had in the spring of 1987. It took years for the disease to become full blown as it is today. I had wax and wane symptoms, with long periods of remission, until after my daughter was born in 1997. Since then, it has increased until now it is very obvious. From what I understand, if you are diagnosed early, and treatment is begun at a reasonable time, you do better. I didn’t have that luxury. I was getting more and more ill for 16 years until it was recognized. I guess no one ever believed me. I gave up trying to get anyone to believe me for quite a few years. Looking back, its almost funny that I’d already given up when an old ex-boyfriend Bob said there was something wrong with me, maybe that was 1992...that my problems were not normal, and at the time I laughed at him the way that doctors and family members had laughed at me. I remember being in a flare up at the time (which I didn’t know what it was, I’d been told over and over it was stress or me being dramatic) and blowing him off like he didn’t know what he was talking about. Me? Admit there was a problem so I could be laughed at again? Yeah, Right. I even doubted myself that any of it was real by that time. He thought it was a weird eating disorder that no one had found yet, he just knew that I would have to eat or I would be very sick and weak and emotional. Then, I would get sick to my stomach anyway. He asked me to go to the doctor, and I was checked for blood sugar and a few other things, but again, nothing was “wrong with me” except for a cyst on my ovary. I was like, See? I’m fine. Case closed. I’d given up and accepted that I was different. I became so much worse in 1998, 99, and then again in 2002 and spring of this year that I realized I had to try again if for no other reason than I had to be here for my daughter. I was jerked around by docs with misdiagnosies and useless tests for a long time.
Some people are “lucky” that Sjogren’s only attacks the eyes and saliva glands and causes fatigue (define luck, right?). I have a nasty case of it. I have it not only in my eyes and saliva glands, its in my gastrointestinal tract (which is why I am so thin), my muscles (causing enlargement, pain and atrophy), all my moisture secreting glands (girl parts involvement...I won’t gross you out with the details) including the lacrimal glands in my scalp which causes hair loss due to no oils in my hair, sweat glands (which is OK, because while I can still sweat my feet do not sweat anymore at all so my feet never stink...its just that when I eat something spicy my back and head will burn and sting because I cannot sweat “fast enough”), my thyroid, my teeth, my lymph nodes, arthritis, my lungs and esophogus, my sinuses, my nervous system, my right ear, my veins and I have the fatigue and the cognitive problems. For whatever reason, some people with autoimmune problems and thyroid problems get what is called “brain fog”. We basically say stupid shit and it takes longer to think than normal. I think it has to do with not getting enough hormones and amino acids to the brain for regular function since people with these conditions lack T3 hormone and do not absorb fats and proteins correctly. Both T3 and amino acids are necessary for the mind to work and to create normal neurotransmitters. I take Armour for my thyroid and L-Tyrosine for brain function and Autotomic Nervous system function. Your ANS controls your “fight or flight reaction” to stress, and tells the brain and adrenals when to release the fight or flight hormones into your body. I didn’t have non-epherderine working properly, which is needed to turn off your nervous or “panic” reactions. This used to cause me a lot of unneeded stress. L-Tyrosine is the amino acid that is used to make the “adrenaline” and “non-adrenaline” hormones. My frustration had no “brakes”, and adding L-Tyrosine in powered form in a capsule helps me be more hormonally balanced.
I added selenium, which is needed for my thyroid hormones, also magnesium and Co Q 10 for my heart palps, B complex for adrenal and blood health, iron in massive quantities because I am very chronically iron deficient from malabsorbtion, Flax seed oil for my cholesterol and hair, and I am pretty sure my doc is going to put me on estrogen once I get the levels done. I am at risk for developing lymphoma (cancer of the lymph nodes) later down the line, so I have to be diligent in having the doc check my glands for changes. One of my docs thought that was what I had already, and I had to get MRI’s and MRA’s and about 20 blood tests. That was a stressful early July for me when they just didn’t know. Most people with the disease do not get the cancer, and my Rhumetologist seems to think I will be OK and tells me not to worry. I do worry anyway.
Migraines from the vein and neck muscle problems are pretty common. Top it off that I have a compressed disc in my neck with pieces of bone growing into my spine (spondylosis) and you have one unhappy camper over here. The fatigue can be crushing at times, where I just want to sleep. Sometimes my face hurts so badly when my right saliva gland swells or my sinus by my ear swells that I actually go numb. I am losing the hearing in my right ear...I am unsure if it is nerve damage from swelling or if it is from the fluid. My sinuses no longer drain, so I have constant fluid in my ears, especially the right. Sometimes the pressure is terrible, but there is nothing they can “give” me. I don’t get infected and I cannot take cold medicine or allergy medicine with having SS. I always feel like I have been punched in the chest. That’s a combo from feeling dry, acid reflux, and muscle problems. I am always popping out my ribs because my chest muscles do not hold them together anymore. I hurt myself trying to start my lawnmower in the spring and have chest and sternum pain ever since.
My attitude? Well, I think it is pretty good. I was pretty bad for a few years without proper diagnosis and lived through it. Now that I am on Plaquenil for the SS, it does help the aches and pains and lifts the fatigue a bit. I fight it, try to ignore it, and try to just go about my business. The symptoms come and go...while its always there, its better and worse depending on whether or not I am in an “attack” or “flare”. Its to the point where I am afraid of the flares, since they are so intense. This past early summer, I had the worst one of my life, the pain was really bad and even when I was taking pain pills. I couldn’t even think straight and honestly all I wanted to do was cry...but I hate getting all weak in front of people. I never like to admit I don’t feel well, and keep trying to function, because otherwise I feel like I am giving in to it.
I lost a lot of hair and have weird dark spots above my lip (I feel like I look like I have a mustash. If it was hair, I’d be ridding myself of aunt bunny...but this is discoloration that will not even fade with bleach...I know I have tried.) and on my cheek. On my cheek it looks like freckles that just “appeared”. I think its from having low cortisol, because my recent scars are hyper-pigmented. Spider veins on my face, too. Not to mention that I have sinus problems that make my face swell ever so slightly, match that with the corners of my jaw always swollen, so I have lines on my face that make me look way older than I am. I see myself...little Munchkin me...as a craggy old lady. How I feel about my looks went down the tubes...so I try to focus on how I feel and get healthy enough to have fun and forget it. I am a little embarassed by it though.
Emotionally, I am better than I was a year ago. I have a handle on what’s wrong and stuff. I still am a little withdrawn and quiet (except with the email groups...I can write, I just still hate to talk because I am always afraid I will say the wrong thing). I have a wonderful daughter who needs me to be healthy and happy, and I never admit when I feel bad to her anymore. Stress causes attacks and flare ups, so I try to avoid it. I was an outgoing, positive, people person most of my life. I skated all the time, worked with kids and horses, held physical jobs, took dance, liked recreational sports with friends like football and basketball and street hockey and frisbee. Even if it was something I completely sucked at, I still wanted to play and be involved. In 1990 I was in the Garden State games speed skating. I had just the beginnings of this disease back then, and still had more good days than bad. Now I just try to get through each day and do the best I can with what I have. Just as I was feeling better this summer, I had to have my cat put to sleep, which totally crushed me and started me up all over again. I fought back the tears for two days...probably should have just let myself cry because holding it in made it worse. I hate to cry now...my tears are not normal. They are “sticky” because my tear ducts do not produce anything unless I do cry, when they finally produce something, my tear ducts burn and my tears crust on my face and my eyes swell. Sometimes I think if I start I will not be able to stop.
I do fight this. I refuse to give in or give up again. Some days I want to. So it is hard. I am officially humbled and humiliated. Since I will never be Munchkin again, I am having to find a new definition of myself. I still do not know what that is, but I am trying. I don’t want pity. I don’t even know that I want compassion. I know I am strong under it all, even when I am feeling weak. Yet, to not feel like I can find the words to ever express myself verbally, to have intelligence in my mind and not sound intelligent when I speak, to never be able to think of a quick or funny come back anymore when that used to be something I was infamous for, to be forgetful when I am hurting, and to be afraid...well, those are things I never was before. And to have to incorporate that into my personality...I feel dry not only in my body but in my mind. They say you have to tear it down in order to rebuild it...like the Phoenix from the ashes...I’ll come back stronger than before. If I can help someone else along the way, it will all be worth it.
Blessings, Nancy
Other Pages on my site
My Animals Pictures of Me Poetry Navy Advancement Help (this will take you to another site, but feel free to go check it out!)
