August 2011
After my appointment with Dr. M, I found out that my grandmother has sicca sydrome, so I made an appointment to see the recommended opthamologist to be tested as I was instructed. I explained to the woman who was asking me questions about my eyes that I was asked to go there by my rheumatologist to be checked for sicca syndrome. I received a full eye exam and had my eyes dilated for the first time in my life (which was not a wonderful experience). The doctor told me that my eyes looked fine and if I was going to be starting any medications with my rheumatologist that I would have to go back on a regular basis to have my eyes monitored as some of the medications may have very negative effects on the eyes. The doctor assured me that he would send over my exam results to Dr. M, gave me some silly sunglasses to wear to help with the sensitivity from the dilating, and I was all set to go.
Though I was hoping that maybe I would find some reasoning behind all my contact troubles, I was glad to hear that my eyes were good.
Wednesday, August 31, 2011
Monday, August 22, 2011
Dr. M
August 2011
During my first appointment with Dr. M (my rheumatologist), I knew I was good hands. He was very welcoming and made me feel very comfortable. The appointment lasted about an hour and during that time he asked me a lot of questions and it wasn't until I was answering all of his questions that I realized how many symptoms I actually had, how long they had been occurring, and how interrelated they were. He took a lot of notes, paused many times to think, and asked me specific and detailed questions regarding my fatigue, weight loss, stress, and upset stomachs.
He checked my blood pressure and felt my glands for any abnormalities and then asked me if I had been running a fever. I couldn't be sure, I hadn't really checked my temperature because I wasn't feeling sick meaning I didn't have a cold or a sore throat or feel any need to check it. When he checked my temperature we discovered that I was running a mild fever which he said was very important information. I was surprised that I was running a fever and wondered how long that had been happening for. He instructed me to regularly monitor my temperature. He also asked me if I had dry eyes. I thought it was a weird question and I was interested in the fact that he asked me that. I told him that I had never had issues with my eyes, but I had recently started wearing contacts instead of my glasses and had experienced nothing but issues with the contacts no matter how many different types I tried. He said that my eyes looked dry and gave me the name of a local opthamologist and told me to go there and get tested for "sicca syndrome" (aka Sjogren syndrome), an autoimmune disease of the eyes (and mouth) that results in reduced tear (and saliva) production.
When he finished with his assessment he told me that he does not diagnose without any hard evidence (abnormal blood work results) because he never wants to misdiagnose someone which happens often in autoimmune diseases due to the overlap of symptoms. He also reiterated the fact that many autoimmune diseases can take a long time to present in blood work and sometimes people live their whole life with normal blood work even though an autoimmune disease exists. I started to feel discouraged. Please don't let me have to continue to live like this without answers. I think he could tell that I started to feel hopeless because he looked at me very seriously and said "This may take time, but we will figure it out, you just have to promise to be patient". I was not going to give up so I was going to be patient for as long as it took. His next words provided me with some sense of relief. "I can't tell you for sure that you have an autoimmune disease, but given your family history and your symptoms the cards are stacked against you and if you were to ask if I think there is something autoimmune going on, my answer is yes I am confident that there is but will not confirm it until we have something more to go on." I understood and appreciated the honesty. He reminded me to remain patient and scheduled me to go down the hall to get some more blood work done explaining that he was going to be more detailed in his tests than those I had done at my primary care office.
Dr. M only provides test results in person so I scheduled my appointment to come back. Unfortunately for me the doctor was going on vacation for the first two weeks of September so the earliest appointment I could get was toward the end of the month.
I walked down the hall dreading this blood tests. I hate needles, I hate blood, I feel nauseous even having to do this right now but it has to be done. The phlebotomist could see the anxiety written all over my face, smiled at me and said "you're going to be fine". As a grown woman I felt ridiculous for making my fear over something so minor so blatantly obvious but was glad that she was sympathizing with me. I sat down in the chair and as she tied the band around my arm to search for my vein I turned my head in the opposite direction. Ugh even the sight of my veins under my skin made me feel sick. Unable to find a "good vein" she took the band off and tried my other arm and I shifted my head in the other direction... She seemed to be having trouble and repeatedly told me to "just relax"... Alright lady, I'm trying to relax but you clearly don't understand how much this process bothers me. She finally decided to go back to the original arm and give it a try. After poking me numerous times she tells me that every time she tries to get my vein it goes down... Ew OK thats gross please don't tell me details, just do what you need to do so I can get the heck out of here. She then asks me to get up and run my arm under hot water in the sink. I'm thinking to myself, I just had blood work done recently, why is this such an issue now? As I stand at the sink with my arm angled down and the hot water running down to my hand I can feel my knees getting weak. In my head I'm repeating "You're a grown woman, this is ridiculous, don't pass out, don't pass out, don't pass out". She quickly turns the water off, rushes me back to the seat and tells me that we have to hurry before the vein goes back down, and ties the band around my wrist... OK now I'm panicking. I turn my head away and she sticks the needle through the top of my hand. As I'm reminding myself to breathe I look down at the metal tray next to me that is completely covered in little plastic tubes... I start to freak out and tell myself that there is no way in hell that those are all mine, they can't be, I count sixteen tubes, that would be ridiculous. I close my eyes and focus on my breathing... why is this taking forever? I wasn't counting but I could feel every time she took a tube off and added a new one. When she finally said "That's it you're all done, see you did it... all sixteen" I almost threw up on the floor. "Now don't use that hand for at least a half hour, that way you won't bruise terribly bad"...
I walked out of the office with bandages taped to my arm and my hand, looking like I had been beat up and feeling like I was going to have an anxiety attack. It was over, it wasn't painful, but I felt like crying. I drove home very shaken and craving a giant glass of wine (that I of course did not indulge in considering the fact that I was just robbed of 16 tubes of blood). The waiting game began there...
During my first appointment with Dr. M (my rheumatologist), I knew I was good hands. He was very welcoming and made me feel very comfortable. The appointment lasted about an hour and during that time he asked me a lot of questions and it wasn't until I was answering all of his questions that I realized how many symptoms I actually had, how long they had been occurring, and how interrelated they were. He took a lot of notes, paused many times to think, and asked me specific and detailed questions regarding my fatigue, weight loss, stress, and upset stomachs.
He checked my blood pressure and felt my glands for any abnormalities and then asked me if I had been running a fever. I couldn't be sure, I hadn't really checked my temperature because I wasn't feeling sick meaning I didn't have a cold or a sore throat or feel any need to check it. When he checked my temperature we discovered that I was running a mild fever which he said was very important information. I was surprised that I was running a fever and wondered how long that had been happening for. He instructed me to regularly monitor my temperature. He also asked me if I had dry eyes. I thought it was a weird question and I was interested in the fact that he asked me that. I told him that I had never had issues with my eyes, but I had recently started wearing contacts instead of my glasses and had experienced nothing but issues with the contacts no matter how many different types I tried. He said that my eyes looked dry and gave me the name of a local opthamologist and told me to go there and get tested for "sicca syndrome" (aka Sjogren syndrome), an autoimmune disease of the eyes (and mouth) that results in reduced tear (and saliva) production.
When he finished with his assessment he told me that he does not diagnose without any hard evidence (abnormal blood work results) because he never wants to misdiagnose someone which happens often in autoimmune diseases due to the overlap of symptoms. He also reiterated the fact that many autoimmune diseases can take a long time to present in blood work and sometimes people live their whole life with normal blood work even though an autoimmune disease exists. I started to feel discouraged. Please don't let me have to continue to live like this without answers. I think he could tell that I started to feel hopeless because he looked at me very seriously and said "This may take time, but we will figure it out, you just have to promise to be patient". I was not going to give up so I was going to be patient for as long as it took. His next words provided me with some sense of relief. "I can't tell you for sure that you have an autoimmune disease, but given your family history and your symptoms the cards are stacked against you and if you were to ask if I think there is something autoimmune going on, my answer is yes I am confident that there is but will not confirm it until we have something more to go on." I understood and appreciated the honesty. He reminded me to remain patient and scheduled me to go down the hall to get some more blood work done explaining that he was going to be more detailed in his tests than those I had done at my primary care office.
Dr. M only provides test results in person so I scheduled my appointment to come back. Unfortunately for me the doctor was going on vacation for the first two weeks of September so the earliest appointment I could get was toward the end of the month.
I walked down the hall dreading this blood tests. I hate needles, I hate blood, I feel nauseous even having to do this right now but it has to be done. The phlebotomist could see the anxiety written all over my face, smiled at me and said "you're going to be fine". As a grown woman I felt ridiculous for making my fear over something so minor so blatantly obvious but was glad that she was sympathizing with me. I sat down in the chair and as she tied the band around my arm to search for my vein I turned my head in the opposite direction. Ugh even the sight of my veins under my skin made me feel sick. Unable to find a "good vein" she took the band off and tried my other arm and I shifted my head in the other direction... She seemed to be having trouble and repeatedly told me to "just relax"... Alright lady, I'm trying to relax but you clearly don't understand how much this process bothers me. She finally decided to go back to the original arm and give it a try. After poking me numerous times she tells me that every time she tries to get my vein it goes down... Ew OK thats gross please don't tell me details, just do what you need to do so I can get the heck out of here. She then asks me to get up and run my arm under hot water in the sink. I'm thinking to myself, I just had blood work done recently, why is this such an issue now? As I stand at the sink with my arm angled down and the hot water running down to my hand I can feel my knees getting weak. In my head I'm repeating "You're a grown woman, this is ridiculous, don't pass out, don't pass out, don't pass out". She quickly turns the water off, rushes me back to the seat and tells me that we have to hurry before the vein goes back down, and ties the band around my wrist... OK now I'm panicking. I turn my head away and she sticks the needle through the top of my hand. As I'm reminding myself to breathe I look down at the metal tray next to me that is completely covered in little plastic tubes... I start to freak out and tell myself that there is no way in hell that those are all mine, they can't be, I count sixteen tubes, that would be ridiculous. I close my eyes and focus on my breathing... why is this taking forever? I wasn't counting but I could feel every time she took a tube off and added a new one. When she finally said "That's it you're all done, see you did it... all sixteen" I almost threw up on the floor. "Now don't use that hand for at least a half hour, that way you won't bruise terribly bad"...
I walked out of the office with bandages taped to my arm and my hand, looking like I had been beat up and feeling like I was going to have an anxiety attack. It was over, it wasn't painful, but I felt like crying. I drove home very shaken and craving a giant glass of wine (that I of course did not indulge in considering the fact that I was just robbed of 16 tubes of blood). The waiting game began there...
Thursday, July 7, 2011
Doctor Visit 2 -referral
July 2011
The second appointment was brief. The APRN basically told me that my blood results came back normal but she was going to refer me to a rheumatologist due to my family medical history. Not really knowing what a rheumatologist was or what they did I happily agreed to go with the hope that I would find some answers.
After my appointment I talked to my mom about my referral and learned that the doctor she sees for her lupus is a rheumatologist. She asked me why I was being sent there if my blood work came back normal... and I didn't really have an answer... so I called the doctor's office back and the APRN explained that many autoimmune diseases do not present themselves in blood work and that she felt more comfortable having me see a doctor who specializes in that area. It seemed very logical to me and so I asked her to refer me to my mothers doctor...
The second appointment was brief. The APRN basically told me that my blood results came back normal but she was going to refer me to a rheumatologist due to my family medical history. Not really knowing what a rheumatologist was or what they did I happily agreed to go with the hope that I would find some answers.
After my appointment I talked to my mom about my referral and learned that the doctor she sees for her lupus is a rheumatologist. She asked me why I was being sent there if my blood work came back normal... and I didn't really have an answer... so I called the doctor's office back and the APRN explained that many autoimmune diseases do not present themselves in blood work and that she felt more comfortable having me see a doctor who specializes in that area. It seemed very logical to me and so I asked her to refer me to my mothers doctor...
Tuesday, June 28, 2011
Doctor Visit 1
June 2011
Having not had much luck with my primary care doctor in the past, my mom suggested I make an appointment with the APRN instead. After having my appointment I was very happy with APRN, she was much more personable, didn't make me feel rushed, and most importantly she listened to me. I explained to her how I had been feeling for the past 6 months and what I had tried to do to improve the symptoms. She asked me questions about any feelings of depression or stress (which I was happy to say I didn't feel at all) and I was really glad to hear her say that she didn't think it was stress related. Though I had a very stressful year, I had been done with classes and interning for 2 months, felt completely stress free, but was complaining that my symptoms were worse; had it been related to stress, they should have been improving. Because of this and the fact that I have a family history of both lupus and thyroid disease, she sent me to get some blood tests done for my sugar levels, my thyroid, lupus prescreening, Lyme's disease, and anemia. Though I feel tears come on at the thought of a needle and my stomach turns at the thought of a blood test, I was happy that she was taking these steps.
A week later I received the results of my blood work in the mail and had very mixed feelings about the results... everything came back normal. While that was great news for my health, I was very discouraged that I still felt like crap and had no answers.
After feeling frustrated and being back to square one I started to think maybe I was exaggerating, maybe I just need to get more sleep, maybe I just need to force myself to be more active...
A week later I decided I was not ready to give up. I called the doctor's office back and asked what they were going to do now. The way I was feeling was not OK, I wasn't exaggerating, and I was not willing to give up on searching for some answers, so I scheduled another appointment with the APRN...
Having not had much luck with my primary care doctor in the past, my mom suggested I make an appointment with the APRN instead. After having my appointment I was very happy with APRN, she was much more personable, didn't make me feel rushed, and most importantly she listened to me. I explained to her how I had been feeling for the past 6 months and what I had tried to do to improve the symptoms. She asked me questions about any feelings of depression or stress (which I was happy to say I didn't feel at all) and I was really glad to hear her say that she didn't think it was stress related. Though I had a very stressful year, I had been done with classes and interning for 2 months, felt completely stress free, but was complaining that my symptoms were worse; had it been related to stress, they should have been improving. Because of this and the fact that I have a family history of both lupus and thyroid disease, she sent me to get some blood tests done for my sugar levels, my thyroid, lupus prescreening, Lyme's disease, and anemia. Though I feel tears come on at the thought of a needle and my stomach turns at the thought of a blood test, I was happy that she was taking these steps.
A week later I received the results of my blood work in the mail and had very mixed feelings about the results... everything came back normal. While that was great news for my health, I was very discouraged that I still felt like crap and had no answers.
After feeling frustrated and being back to square one I started to think maybe I was exaggerating, maybe I just need to get more sleep, maybe I just need to force myself to be more active...
A week later I decided I was not ready to give up. I called the doctor's office back and asked what they were going to do now. The way I was feeling was not OK, I wasn't exaggerating, and I was not willing to give up on searching for some answers, so I scheduled another appointment with the APRN...
Saturday, January 1, 2011
The Beginning
January - June 2011
Being a full time masters student, working part-time, and interning part-time, upset stomachs and exhaustion became a normal part of my life considering everything I had going on and the amount of stress that came with it.
The first year of my grad program ended, summer was well on it's way, and I was feeling happier than I had felt in years, but I realized I still felt exhausted. I was only working part time at a stress-free job that I happened to love, so why was I still feeling like this? Summer was my time to go out and have fun with my friends yet I had no desire to do anything. In fact, the exhaustion seemed to get worse. I had a difficult time getting up and out of bed in the morning and I could barely make it until 2 o'clock in the afternoon without feeling the need to sleep. I also realized that although my stress was gone, my upset stomachs were still prevalent.
Knowing that something wasn't right I began to analyze the situation more. I did some googling in attempts to problem solve the situation and the first thing I came across was dehydration. Well I wasn't drinking nearly enough water as I should so I began to drink water more and more every day... I still felt exhausted and had upset stomachs and now I also had to pee all the time. Realizing that the water consumption was not helping I thought maybe I also needed to change my eating habits. I did my best to eat three good meals a day and have small heathy snacks in between but it still wasn't helping so I added in a daily multi vitamin... nothing... still exhausted with upset stomachs almost every day. So I finally decided to make an appointment with my primary care physician.
Being a full time masters student, working part-time, and interning part-time, upset stomachs and exhaustion became a normal part of my life considering everything I had going on and the amount of stress that came with it.
The first year of my grad program ended, summer was well on it's way, and I was feeling happier than I had felt in years, but I realized I still felt exhausted. I was only working part time at a stress-free job that I happened to love, so why was I still feeling like this? Summer was my time to go out and have fun with my friends yet I had no desire to do anything. In fact, the exhaustion seemed to get worse. I had a difficult time getting up and out of bed in the morning and I could barely make it until 2 o'clock in the afternoon without feeling the need to sleep. I also realized that although my stress was gone, my upset stomachs were still prevalent.
Knowing that something wasn't right I began to analyze the situation more. I did some googling in attempts to problem solve the situation and the first thing I came across was dehydration. Well I wasn't drinking nearly enough water as I should so I began to drink water more and more every day... I still felt exhausted and had upset stomachs and now I also had to pee all the time. Realizing that the water consumption was not helping I thought maybe I also needed to change my eating habits. I did my best to eat three good meals a day and have small heathy snacks in between but it still wasn't helping so I added in a daily multi vitamin... nothing... still exhausted with upset stomachs almost every day. So I finally decided to make an appointment with my primary care physician.
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