Pain. It is almost impossible to describe the pain I was feeling in February 2005. My left eye had a searing pain in it and nothing relieved this pain. When I finally followed the advice of friends and family and saw a rheumatologist, it was determined that I had scleritis in my left eye. It is a thinning of the white part of the eye and it causes much pain. Without treatment, I could lose my sight and ultimately my eye. The doctor put me on 40 mg of prednisone as well as weekly methotrexate, a chemotherapy used for scleritis.
Fifty percent of individuals with scleritis have an underlying disease such as rheumatoid arthritis. Three different rheumatologists tested me for underlying diseases but none were found. PTL! Then, it hit. The F-word. No. Not that one. Fibromyalgia. I had NEVER heard of this disease until I sat in the doctor's office in Nashville. He explained that fibromyalgia was not like arthritis which causes pain and inflammation of the joints. Fibromyalgia causes pain, and at times inflammation, in the muscles. Many have tried to describe the pain of this disease. There are 18 trigger points that the doctor looks at to determine if you have fibromyalgia. My pain is in my neck, shoulders, back, and legs. One person has said to have someone put clothespins on their fingers for 20 minutes and have them continue whatever they would normally do but with the clothespins. The hope is that they may be able to continue their previous actions but were they ever able to forget about the clothespins on their fingers? By far, the best explanation of this disease is "The Spoon Theory." http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf I hope the link will work. You may have to copy/paste it. I do not know how to embed it. :/
It took three eye doctors and three rheumatologists before I found the ones I needed to help fight these diseases. My current eye doctor is at John Hopkins Hospital in the Wilmer Eye Institute. She is amazing. My rheumatologist is in Nashville and after seeing one doctor for several years, I was asked if I would consider a NP. I agreed and it was the BEST decision I had ever made. Hands down. She remembers things about me that I have forgotten. She sits in front of you and looks you in the eye. As well as she can without having the disease, she sees your pain. Not only does she see the pain caused by the disease itself but the pain the disease causes to family relationships, friends, work, you name it. She just seems to know. I love her for asking how my father is doing since being diagnosed with invasive bladder cancer. I love her even more for then asking how I am doing with the news of my father's cancer. She is the real deal and the total package. I sure wish it had not taken me more than three years to find her.
There were lots of dates in the other posts so I will tell you a few more for good measure. As I said already, I was diagnosed in February 2005. After careful consideration and many hours in couples therapy, I decided it was time to end my marriage in March 2006. There is no need to go into the pros and cons of each side. In one sentence, it boils down to this....I did NOT want my children to grow up and believe the marriage I had with their father was what they should pattern their own marriages after when they decided to make that commitment. The divorce was final in October 2006.
The kids and I lived in Lewisburg after we left Petersburg. I was fortunate to find a nice house in a good neighborhood and one that I could afford based on my salary at the bank. When our small community bank was bought by a larger community bank, I became a loan officer and loved my job. For six years, I dealt mainly in construction loans. New subdivisions, spec houses, custom houses. All of it. I had many good customers, though, that weren't in construction. The family purchasing their first house. The young person purchasing their first car. It was not always easy to be a loan officer but I tried to always know the answers to questions my superiors would ask.
When I was first diagnosed and the pain was immense, I was given an award by my employer for my determination and persistence with all that had happened to me. Slowly I began getting sicker and missing more days. With the fibromyalgia came debilitating migraines. The HR director advised me to file for FMLA so that my days missed would not go against me. I did this and had my doctor filling out paperwork every 3 months. During 2006 and 2007, things shifted at work. I was no longer the valued employee who was loyal and did my best on every task given. I was the person who looked fine the day before and the day after I missed work. Only then did I realize how awful invisible illness truly is. It is life shattering. The thing is though that it has not only shattered my life but my kids, my parents, the few friends I have left, anyone who is still close to me basically. So, in November 2007, my career in banking ended when I missed 1 day more than allowable under FMLA.
I have not been able to work since then. I have lost much since November 2007. It felt as if I was no longer a contributing member of society. It also felt like what happened at work also happened everywhere else. When asked how I felt, I gave truthful answers. No need to lie or act like I wasn't sick. That is when I would hear "Well, you look good." It was as if looking good meant how could anything be THAT wrong if you don't even look sick. Right there is where I have lost many. I look fine so I must be lazy. Must want attention. Must rather say I was sick than care for my kids. The list goes on and on.
It was brought to my attention on Facebook that people did not like my negativity. They didn't want to hear about my bad circumstances or how I was feeling. They rather not read anything that would bring them down. Seriously?! So, I quit posting to Facebook about my illnesses and my pain. Then a long-time fibro friend invited me to a small private group on Facebook for those who face chronic illness and pain. It is a God send. I don't have to worry about sharing what is wrong with me on a particular day. I don't have to worry about being judged by others because the members all get it. They have been there. They know. There have been times since I joined the group that I have shared medical news. If people don't want to read it, hide, delete, or block me. If that is how they feel, they were never really my friend anyway.
This past May the kids and I moved to a smaller house in Lewisburg. We like our new home and are humbled to have it. While I may not deserve the generosity I have received, I do appreciate all that has been done for me the last four years.
For six years, I have struggled with forgiveness. Struggled with the beliefs I have had my entire life. Struggled with relationships..some I had had all my life. With the diseases I have, struggles are not good. They are just one more burden on already aching shoulders.
This past month I have come to forgive eight men. Men whom I blamed for many, many things. It became clear that continuing to harbor so much strife I would never be able to move on. I sent my apologies and asked for their forgiveness. Two replied and I am grateful for both. One of the two called as soon as he read the email. He did not have to forgive me. He did not have to treat me with respect and dignity the times he dealt with me prior to the email. He also did not have to ask me to forgive him for anything he might have done. His phone call allowed me to see they are just men. Human men, who like me, make mistakes each and every day. It is very clear there was only one perfect individual upon this Earth.
So, if you have read all three parts, you see that my life since college has been filled with many emotions. Not all good but certainly not all bad. Not all happy but not all sad. My family has rejoiced twice as my children have put on Christ. We have cried as we have lost way too many family members but we have known with each passing, we would see them again. We have not forgotten them. I don't think that would be possible. Each day something random happens and it makes you think of the one(s) you have lost.
It is hard to imagine a time when I won't remember the important dates of my past. Each date in these post has shaped me in one way or another. There are still many other dates that have also had a hand in shaping me. It is my turn to decide how I will allow things to shape me in the future.
Tuesday, May 3, 2011
Saturday, April 9, 2011
And yet here I am...Part Two
The first major change in my life came in August 2002. My sister, Janet, was diagnosed with leiomyosarcoma. It is a very rare cancer occurring in about 1 in 4 million people. The day my sister's doctor told us she had cancer might as well be yesterday. I will never forget the room, the doctor's face, the words that came out of his mouth, and the crying and screaming my mother did. She yelled over and over, "I knew it. I just knew it." My sister was thirty-six and had five children ranging in age from two to seventeen. I stayed with my sister that first night after her surgery. My mother wanted to stay but I felt she needed the rest and the kids needed to hear it from my parents. Janet slept most of the night but constantly moaned. She woke at some point in the night and she did not remember anything the doctor had told her after surgery. I had to tell my sister she had cancer and that she had lost half of her bladder during the surgery. Her next question stopped me dead in my tracks. "Am I going to die?" I gently told her no and she drifted back off into fitful sleep.
The next fourteen months seemed like a nightmare. She began treatment with chemo and radiation. Just three short months after learning she had cancer we were told it had metastasized to her lungs and liver. I had already begun working with my local Relay For Life and had immersed myself in the American Cancer Society's website. I knew what it meant when the cancer showed up in her lungs and liver. We didn't have much time left. She began chemo in the hospital. One week in and three weeks out. I was fortunate to spend two nights each time with her in the hospital. We became close and I saw a side of my sister that I had never seen until the cancer. I have to continually ask myself why it took a terminal illness to see what an amazing sister I had.
On September 29, 2003, my mom and I followed the ambulance to Nashville. Janet was in tremendous pain and we had to get her to the hospital fast. Janet never left the hospital again. She had good hours but mostly bad. Because I worked as a pharmacy technician for five years, I knew the different medications Janet was taking and when she needed them. I could tell by how she grunted that she needed X. I knew the dosage schedules. I never left my sister's side except once and that was to travel to Lewisburg and bring her three oldest children to see her.
On October 7, Janet's PA came in and began talking with Melanie, my oldest sister, and me. Janet had not talked to us in two or three days and we knew the time was getting close. As Dana sat there in Janet's room and listened to Melanie and me tell funny stories, she saw my sister take her last breath. Death had come and taken my sister. While she was in the hospital, I had promised my sister I would take care of her children. Just a week or two after she died her oldest three children came to live with my family. Five kids. I still to this day don't know how my sister was able to do it. My sister's three oldest children had considerable baggage....the loss of their mother so young, a new home with extremely different rules, and on and on.
We tried hard to be a family for eight months. Eight hard months. If I had to do it over again, I would. Pain and all. They deserved a chance. They deserved someone in their corner and I was that person until it became clear that I could not help them. I have done many things in my life but standing before a judge and telling him that you can no longer care for your dead sister's children is probably one of the worst. I had failed. Plain and simple. F.A.I.L.E.D. Most tell me that I didn't fail but that I did all I could do for them. It is eight years later and I am still not convinced of that argument. If I had taken them to one more counselor, stood it for one more month, anything but I didn't. I stood before the judge and gave away my rights to help raise those three children.
To this day, I cannot watch Extreme Home Makeover without crying when the storyline leads to a couple who took in their family members and changed their lives. Is it wrong to question why it worked for them but not for my family? While I am questioning, is it wrong to ask why my sister was taken at all? Unfortunately I cannot answer either of those questions. If I could, I wouldn't have the hole in my heart that will remain empty for the rest of my life.
The last six months of 2004 were relatively quiet but still had me pondering the what ifs. I suppose we all do that but I am an MVP when it comes to the what ifs. In February 2005, I woke with pain in my left eye. It was the same eye that in 1996 had a detached retina. Fearing another detachment, we went to my doctor in Memphis THAT Saturday. He said I did not have a detached retina but I did have some thinning of the white layer of my left eye. He could not explain it. We went home without answers. The pain intensified in my eye and then other parts of my body began to hurt. A pain I can't even describe. I would go to work and hurt all day and try my best not to cry. When it was time to go home, the only thing I could do was stay on the couch. I cried in pain many, many nights. Someone, I don't remember who, suggested I see a rheumatologist. I did and so starts the next chapter in my life....part three to come.
The next fourteen months seemed like a nightmare. She began treatment with chemo and radiation. Just three short months after learning she had cancer we were told it had metastasized to her lungs and liver. I had already begun working with my local Relay For Life and had immersed myself in the American Cancer Society's website. I knew what it meant when the cancer showed up in her lungs and liver. We didn't have much time left. She began chemo in the hospital. One week in and three weeks out. I was fortunate to spend two nights each time with her in the hospital. We became close and I saw a side of my sister that I had never seen until the cancer. I have to continually ask myself why it took a terminal illness to see what an amazing sister I had.
On September 29, 2003, my mom and I followed the ambulance to Nashville. Janet was in tremendous pain and we had to get her to the hospital fast. Janet never left the hospital again. She had good hours but mostly bad. Because I worked as a pharmacy technician for five years, I knew the different medications Janet was taking and when she needed them. I could tell by how she grunted that she needed X. I knew the dosage schedules. I never left my sister's side except once and that was to travel to Lewisburg and bring her three oldest children to see her.
On October 7, Janet's PA came in and began talking with Melanie, my oldest sister, and me. Janet had not talked to us in two or three days and we knew the time was getting close. As Dana sat there in Janet's room and listened to Melanie and me tell funny stories, she saw my sister take her last breath. Death had come and taken my sister. While she was in the hospital, I had promised my sister I would take care of her children. Just a week or two after she died her oldest three children came to live with my family. Five kids. I still to this day don't know how my sister was able to do it. My sister's three oldest children had considerable baggage....the loss of their mother so young, a new home with extremely different rules, and on and on.
We tried hard to be a family for eight months. Eight hard months. If I had to do it over again, I would. Pain and all. They deserved a chance. They deserved someone in their corner and I was that person until it became clear that I could not help them. I have done many things in my life but standing before a judge and telling him that you can no longer care for your dead sister's children is probably one of the worst. I had failed. Plain and simple. F.A.I.L.E.D. Most tell me that I didn't fail but that I did all I could do for them. It is eight years later and I am still not convinced of that argument. If I had taken them to one more counselor, stood it for one more month, anything but I didn't. I stood before the judge and gave away my rights to help raise those three children.
To this day, I cannot watch Extreme Home Makeover without crying when the storyline leads to a couple who took in their family members and changed their lives. Is it wrong to question why it worked for them but not for my family? While I am questioning, is it wrong to ask why my sister was taken at all? Unfortunately I cannot answer either of those questions. If I could, I wouldn't have the hole in my heart that will remain empty for the rest of my life.
The last six months of 2004 were relatively quiet but still had me pondering the what ifs. I suppose we all do that but I am an MVP when it comes to the what ifs. In February 2005, I woke with pain in my left eye. It was the same eye that in 1996 had a detached retina. Fearing another detachment, we went to my doctor in Memphis THAT Saturday. He said I did not have a detached retina but I did have some thinning of the white layer of my left eye. He could not explain it. We went home without answers. The pain intensified in my eye and then other parts of my body began to hurt. A pain I can't even describe. I would go to work and hurt all day and try my best not to cry. When it was time to go home, the only thing I could do was stay on the couch. I cried in pain many, many nights. Someone, I don't remember who, suggested I see a rheumatologist. I did and so starts the next chapter in my life....part three to come.
Tuesday, April 5, 2011
And yet here I am....Part One
When I was a teenager, it felt like becoming an "adult" would never happen. Well, it did. I am an adult plus thirteen years. After high school, I went to college at David Lipscomb University in Nashville. It was approximately one hour from home but the first few nights, I might as well have been in Australia. I went to college for two years and then got married and commuted. After our first year of marriage, we learned we were expecting. Talk about throwing a kink in my senior year plans. I was lucky to be at a small university. I spoke with my advisor immediately after learning of my pregnancy. Classes were shifted and my schedule worked out well for me my senior year. Gabriel was born roughly one month PRIOR to graduation. I missed two classes and then mom, Gabriel, and I headed back to school until graduation. I had classes on Tuesday and Thursday and was nursing Gabriel so he had to go with me. While most of my classmates were going to job fairs and interviews, I was burping a baby and changing dirty diapers. Not exactly what I had planned but it worked out just fine. I graduated in May and we still joke that Gabriel went to college before he even started kindergarten.
From May to August of 1998, I was a stay-at-home mom. It was a nice break from class every day and the "workforce" I was about to join. As a finance/business management major, banking was right up my alley. Fortunate for me, a community bank was hiring and I started at the ground level and worked my way up. In December of 1998, I learned I was expecting our second child. I see you doing the math...17 months and 3 days. After Madison, I joked that I learned what caused that. :) Life went on with it's merry way and settled into a routine for my family and me.
In approximately six years, I had not only become an adult, but I had also graduated high school, graduated college, gotten married, had my first child, began my life as a banker, and had our second child. All of that pretty much SCREAMS adulthood. Tell me again why I wanted so desperately to become an adult and have to do adult things like pay bills, be responsible for other human beings, and have a J-O-B?! I see these same tendencies in my son, Gabriel. He just turned 13. I know it is possible but is it really possible that I have a thirteen year old son?! What is even scarier is that later this year I will a twelve year old daughter.
Things pretty much rocked along from 1998 to 2002. And then my life came to a screeching halt. Do not pass Go. Do not collect $200. How I long for the days that I used to consider stressful. They were. Don't get me wrong but the stress did not compare to the last eight years of my life......
Part two in the makings.....
From May to August of 1998, I was a stay-at-home mom. It was a nice break from class every day and the "workforce" I was about to join. As a finance/business management major, banking was right up my alley. Fortunate for me, a community bank was hiring and I started at the ground level and worked my way up. In December of 1998, I learned I was expecting our second child. I see you doing the math...17 months and 3 days. After Madison, I joked that I learned what caused that. :) Life went on with it's merry way and settled into a routine for my family and me.
In approximately six years, I had not only become an adult, but I had also graduated high school, graduated college, gotten married, had my first child, began my life as a banker, and had our second child. All of that pretty much SCREAMS adulthood. Tell me again why I wanted so desperately to become an adult and have to do adult things like pay bills, be responsible for other human beings, and have a J-O-B?! I see these same tendencies in my son, Gabriel. He just turned 13. I know it is possible but is it really possible that I have a thirteen year old son?! What is even scarier is that later this year I will a twelve year old daughter.
Things pretty much rocked along from 1998 to 2002. And then my life came to a screeching halt. Do not pass Go. Do not collect $200. How I long for the days that I used to consider stressful. They were. Don't get me wrong but the stress did not compare to the last eight years of my life......
Part two in the makings.....
Monday, March 7, 2011
Just forget
It amazes me at how long it has been since my last post....December 2009. Wow!
I was so good at posting to my blog and then came along Facebook. I guess I felt like I was connecting with most people through that social media and didn't realize how little you can convey in a status update. Then, there are also those who don't want "negativity" in their feed and have pretty much told me I need to forget about being sick and not talk about it. Really?! How many of us can forget we are sick...I am not just talking about people who have fibromyalgia or chronic fatigue syndrome or any other host of diseases. When was the last time you had a cold and forgot you were sick? Stomach bug? Flu? It is pretty hard to FORGET you are sick. Now, let's add-in the daily reminders that do go along with chronic illinesses......daily pain, fatigue, inability to complete tasks because it hurts too bad, inability to hold down a job, the list goes on and on.
You see...it is easy for someone who does not have to face these ailments day-in and day-out to tell "us" to forget about them. I have to wonder why they won't us to forget? We did not do anything wrong. We did not cause these illnesses to come into our lives and yet, we must live with them. Some days are good...others are bad...and still others are so bad you never thought you would see the sun again.
Since my last post to this blog, it has been a hard 13 months for me. Never in my wildest nightmares (not dreams because this is in no way a dream), did I imagine the things that have happened to me. If I look back to February 2005 when I was diagnosed, it seems a century ago but it has only been 5% of a century.
It fills my heart with sadness to know there are days that I just sit and cry because it seems no one understands what I am going through at the moment. How do you explain to your daughter why you missed EVERY soccer game last season because of your health?! They remember the mom who could do anything for them and did. Now it seems they are doing more for me than I am for them and that breaks my heart. I realize life is not fair but this disease not only affects me but my children in so many ways....the missed school plays, Boy Scout functions, team practices....you name it.
I suppose that is why it hurts so much to be told to forget this disease and just go on with my life. How do I forget something that causes me pain when I walk from the living room to the kitchen? Or that keeps me from leaving my house for four weeks? You see this disease is intertwined in my life. If I could forget and "go on" with my life, I would. Believe me. I would! Nothing would make me happier but I can't. It is easy for someone to tell me to forget something because deep down they wonder if it is really there. You can't see the diseases I have. You can't test positive for the diseases I have. So, the next time someone is complaining about things in their lives please don't tell them to just forget. It is easier said than done my friends. I know because I am living proof.
I was so good at posting to my blog and then came along Facebook. I guess I felt like I was connecting with most people through that social media and didn't realize how little you can convey in a status update. Then, there are also those who don't want "negativity" in their feed and have pretty much told me I need to forget about being sick and not talk about it. Really?! How many of us can forget we are sick...I am not just talking about people who have fibromyalgia or chronic fatigue syndrome or any other host of diseases. When was the last time you had a cold and forgot you were sick? Stomach bug? Flu? It is pretty hard to FORGET you are sick. Now, let's add-in the daily reminders that do go along with chronic illinesses......daily pain, fatigue, inability to complete tasks because it hurts too bad, inability to hold down a job, the list goes on and on.
You see...it is easy for someone who does not have to face these ailments day-in and day-out to tell "us" to forget about them. I have to wonder why they won't us to forget? We did not do anything wrong. We did not cause these illnesses to come into our lives and yet, we must live with them. Some days are good...others are bad...and still others are so bad you never thought you would see the sun again.
Since my last post to this blog, it has been a hard 13 months for me. Never in my wildest nightmares (not dreams because this is in no way a dream), did I imagine the things that have happened to me. If I look back to February 2005 when I was diagnosed, it seems a century ago but it has only been 5% of a century.
It fills my heart with sadness to know there are days that I just sit and cry because it seems no one understands what I am going through at the moment. How do you explain to your daughter why you missed EVERY soccer game last season because of your health?! They remember the mom who could do anything for them and did. Now it seems they are doing more for me than I am for them and that breaks my heart. I realize life is not fair but this disease not only affects me but my children in so many ways....the missed school plays, Boy Scout functions, team practices....you name it.
I suppose that is why it hurts so much to be told to forget this disease and just go on with my life. How do I forget something that causes me pain when I walk from the living room to the kitchen? Or that keeps me from leaving my house for four weeks? You see this disease is intertwined in my life. If I could forget and "go on" with my life, I would. Believe me. I would! Nothing would make me happier but I can't. It is easy for someone to tell me to forget something because deep down they wonder if it is really there. You can't see the diseases I have. You can't test positive for the diseases I have. So, the next time someone is complaining about things in their lives please don't tell them to just forget. It is easier said than done my friends. I know because I am living proof.
Monday, December 28, 2009
Goodness, I can't believe...
...how long it has been since I blogged. Things have been so crazy at my house. My illnesses are slowly getting the best of me. It seems I have headaches three times a week at a minimum. I am no closer to getting disability. The process is beyond stressful. If you have any suggestions, please, please do share.
My dad has been very sick. He had a simple in-office procedure and it has caused him to have two major surgeries and have to go to skilled care until his next surgery. The next surgery is scheduled for January 8th. Please pray for him. He was diagnosed with bladder cancer.
Tell me what is new with you.
My dad has been very sick. He had a simple in-office procedure and it has caused him to have two major surgeries and have to go to skilled care until his next surgery. The next surgery is scheduled for January 8th. Please pray for him. He was diagnosed with bladder cancer.
Tell me what is new with you.
Saturday, October 10, 2009
Goats, Music, and More
You read it right. Lewisburg is home to the Goats, Music, and More Festival the second weekend of October every year. We have Goat shows of Fainting Goats, Boer Goats, and Nubian Goats. This festival started because Marshall County is the home of the Fainting Goat.
Heeathe and I went today and saw lots of goats. The kids had lots of fun. They helped their dad prepare for the firework show but also were able to walk around with us and enjoy all the vendors.
It was a very dreary day. Cold and rainy but lots and LOTS of people. The festival averages thousands of people from all over the country and sometimes from all over the world.
I haven't posted lately because I have had marathon migraine attacks. Recently one of my headaches lasted six weeks and required two trips to the ER and loads of medicine. It seems that lately I have a headache 2-3times a week and they last anywhere from one to four days on average. Please keep my family in your prayers as this encompasses my family as well as me. Can't wait to hear from all of you!
Don't forget you can look me up on Facebook. When you do, please message me and let me know you read my blog. I normally don't accept friend requests unless I know the person.
Heeathe and I went today and saw lots of goats. The kids had lots of fun. They helped their dad prepare for the firework show but also were able to walk around with us and enjoy all the vendors.
It was a very dreary day. Cold and rainy but lots and LOTS of people. The festival averages thousands of people from all over the country and sometimes from all over the world.
I haven't posted lately because I have had marathon migraine attacks. Recently one of my headaches lasted six weeks and required two trips to the ER and loads of medicine. It seems that lately I have a headache 2-3times a week and they last anywhere from one to four days on average. Please keep my family in your prayers as this encompasses my family as well as me. Can't wait to hear from all of you!
Don't forget you can look me up on Facebook. When you do, please message me and let me know you read my blog. I normally don't accept friend requests unless I know the person.
Saturday, September 5, 2009
Vacation Pictures
Here is a link to our vacation pictures. I hope you like them. Can't wait to hear from you.
You can make the pictures bigger by just clicking on them. Then just hit next. There are three pages of pictures and when they are in the big format you can see the caption I typed for each.
http://www.facebook.com/home.php?#/album.php?aid=96336&id=667312818
You can make the pictures bigger by just clicking on them. Then just hit next. There are three pages of pictures and when they are in the big format you can see the caption I typed for each.
http://www.facebook.com/home.php?#/album.php?aid=96336&id=667312818
Subscribe to:
Posts (Atom)
