I don't know if the title is fitting, but meh, it just came to mind this afternoon. As of 11am this morning, I am officially on a medical leave of absence from college--again. I know there are some top administrators who want my head, but there are some amazing people standing behind me at the same time. My next goal is to finish preparing for a make up exam to finish a class from last semester (once I can remember even the slightest thing I'm supposed to when I look at the review sheet), then it's on to getting as much background and medical documentation so that this doesn't happen again. And, of course, focus on my health.
I have several former professors writing on my behalf to the college I transferred to to establish a background of missed classes due to flare ups and major injuries that took months longer to heal from than a normal, healthy person would. Having read copies of the letters I've received so far that are going to the college and picking up a letter from my primary doctor today brought back a memory of a conversation I had with my best friend some time ago.
I knew I was sick, but I made the choice to return to school to earn the degrees I needed in order to help others in my shoes--chronically ill. I had a career once. It seems like a lifetime ago. And just like that it was gone. Over a hundred medications and treatments later, I'm worse than I ever was. My mother also had her life turned upside down by chronic illness. In many ways, I can relate to and understand where she is coming from, what she is going through, but in other ways I can't. She always put her kids first, her work second, the house third (with the pets ranked right up there with her kids). She always stood behind my father in whatever venture/hobby he was into. I never had that. I haven't been married, I spent too many years with scumbags and losers because I knew what to expect--to get hurt and I admit I felt (and in some ways, still do) feel that I don't deserve "the one." I never had children and was told there is a 99% chance I never will be able to. Even if I could, what if I pass this hell down to my child? Or for that matter, if I can't even complete a semester, how can I raise a child? I just never had that opportunity. When you're in your late teens/early twenties, you always think there's plenty of time, so I focused on my career. And it backfired. It's hard to relate to someone who at least had a chance and lived a life. And when I chose to go back to school, the hope was that my doctors would have found some treatment by the time I finished the degrees I needed to be able to return to a career. Even if it meant tens of thousands in debt from school loans, just being able to help even one person would make it worth it. What I ignored the last few years was just how much my health was getting worse. I put others ahead of myself for many reasons.
Three years ago, I was about as high as a student could get. I received awards for being the best student in my major, president of a national honor society, awards for my work, but as awesome as it was, it was also scary. When you're at the top, the only place to move is down. And then I fell. And all I can do is pray I get answers... get real relief, not just another pill for another symptom. I want to get back there.. my mind still works, but my body seems to have hit the stop button. And a tiny, scary thought entered my mind today as I'm reading words from my doctor about how "unfortunately, this young woman..." and my professors write glowing recommendations about how hard I worked, despite my illnesses and missed classes--one even described me as a "top-flight graduate student" (as I was only working towards my associates when I had her class). What if that's as high as I was meant to go, or can go? I fought through the pain, I fought through the stress, the exhaustion, and it paid off. But now I just can't. And it scares the hell out of me. All of it. So now as the dust is starting to settle from a million things going on at once between school, my family, and my own health, I can't help but see where I was, what I did, and where I am now, but absolutely no clue where I'm going.
Tuesday, February 28, 2012
Saturday, February 25, 2012
Wise Words From Wise Women
It's funny how when you grow up, phrases and advice close relatives and elders give you, but, being young, you know everything and ignore it all. Well, except the things you get a Gibbs-style smack for when they know you're not really listening. I remember a lot of advice I blew off for years. Sometimes, no matter how bad you feel, take a few extra minutes to make yourself look better. Decent clothes, makeup, hair. As if somehow looking better on the outside will make you feel better on the inside. I do admit that sometimes this advice works, but I'm still getting used to the makeup thing.
Lately, I've been taking everything one day at a time. To do more than that is just too overwhelming. After a talk with a very trusted confidante the other evening, she told me that sometimes all we can do is put our hands out and leave everything in God's hands. She also admitted that she knew I didn't have fibromyalgia when I was diagnosed 9 years ago. She knew I was sick, but FMS wasn't it. Then came the diagnoses of Fifths Disease, Lyme Disease (8 times confirmed), Epstein-Barr Virus, migraines that progressed into several weeks of hell in early spring/late fall.... the vitamin deficiencies, the rashes, my reaction to the sun that comes and goes, the itching, hair loss, joint pain, fatigue, chronic fevers, the list goes on and on... And now "episodes." I looked into what was going on, as they're similar to panic attacks, but with marked differences and discovered that they are textbook partial seizures. And they're increasing in frequency. And I admit I've never been so scared in my life. I was relieved all those years ago that what I was feeling wasn't just in my head, I wasn't a hypochondriac, but I had something that had a name. And my doctors seemed satisfied and complacent with that. Every new symptom was blamed on residual Lyme Disease or Fibromyalgia and I was given more and more medication. Then I stopped taking almost all of them. I take my low dose anti seizure medications to control my headaches, a daily inhaler for my asthma, and a stomach pill for heartburn from steroids and weight gain. And hand fulls of vitamins a day. I'm so deficient in several vitamins that I require prescription strength and cannot take a once-daily multivitamin because of my iodine allergy.
I had to make the difficult decision to take a medical leave of absence from college to find answers.. even if that means becoming a pin cushion, poked, prodded, scanned, and possibly electrocuted (nerve function tests) before my dream of finishing up to a PhD and a chance at a new career are taken from me again.
I say again because over 9 years ago I lost my career as a mechanic. While in a 2 hour meeting with an administrator at school, the woman had asked me if I was familiar with the 5 stages of grief because I was so stubborn to try to keep pushing through school. I couldn't help but laugh, as I'm a psychology major and it's something that's taught in Psych101. Then I began to cry because I had been through the entire range of stages including accepting I will never be a mechanic again and even though I don't look it, I am sick. But it's like it's happening all over again. Most of my family doesn't understand and I have lost a lot of people I thought were friends because of my health. I don't look sick, some days (rarer and rarer now) I don't feel sick, and when I'm out in public I'm good at hiding it. (Goes back to the hair/makeup/clothing thing, though really good makeup can hide a lot)
It also doesn't help my case that I have one parent recovering from heart surgery and going in for a minor procedure this coming week and another parent who is only alive because she's on dialysis 3 days a week. I pick up the slack when I can, do what I can, but sometimes it doesn't feel like I do enough. It also doesn't help that my puppy managed to knock 2 of my mother's teeth out LAST WEEK and I only just noticed it tonight. I mean, how do you not notice that when you see and talk to the person every day?
So for now, it's a hurry up and wait deal. Again. Doctor's appointments, tests, waiting for results, and forcing them to find out why I'm so sick. It's not a pity party, it's not a cry for attention... it's real. And knowing if they don't try--if I don't try--to find answers, I might end up exactly where my mother is in less than 20 years. That's not a long time at all. So I've put my faith in His hands, when I do go out, I take the time to look nicer than I used to, and pray for real answers.
Lately, I've been taking everything one day at a time. To do more than that is just too overwhelming. After a talk with a very trusted confidante the other evening, she told me that sometimes all we can do is put our hands out and leave everything in God's hands. She also admitted that she knew I didn't have fibromyalgia when I was diagnosed 9 years ago. She knew I was sick, but FMS wasn't it. Then came the diagnoses of Fifths Disease, Lyme Disease (8 times confirmed), Epstein-Barr Virus, migraines that progressed into several weeks of hell in early spring/late fall.... the vitamin deficiencies, the rashes, my reaction to the sun that comes and goes, the itching, hair loss, joint pain, fatigue, chronic fevers, the list goes on and on... And now "episodes." I looked into what was going on, as they're similar to panic attacks, but with marked differences and discovered that they are textbook partial seizures. And they're increasing in frequency. And I admit I've never been so scared in my life. I was relieved all those years ago that what I was feeling wasn't just in my head, I wasn't a hypochondriac, but I had something that had a name. And my doctors seemed satisfied and complacent with that. Every new symptom was blamed on residual Lyme Disease or Fibromyalgia and I was given more and more medication. Then I stopped taking almost all of them. I take my low dose anti seizure medications to control my headaches, a daily inhaler for my asthma, and a stomach pill for heartburn from steroids and weight gain. And hand fulls of vitamins a day. I'm so deficient in several vitamins that I require prescription strength and cannot take a once-daily multivitamin because of my iodine allergy.
I had to make the difficult decision to take a medical leave of absence from college to find answers.. even if that means becoming a pin cushion, poked, prodded, scanned, and possibly electrocuted (nerve function tests) before my dream of finishing up to a PhD and a chance at a new career are taken from me again.
I say again because over 9 years ago I lost my career as a mechanic. While in a 2 hour meeting with an administrator at school, the woman had asked me if I was familiar with the 5 stages of grief because I was so stubborn to try to keep pushing through school. I couldn't help but laugh, as I'm a psychology major and it's something that's taught in Psych101. Then I began to cry because I had been through the entire range of stages including accepting I will never be a mechanic again and even though I don't look it, I am sick. But it's like it's happening all over again. Most of my family doesn't understand and I have lost a lot of people I thought were friends because of my health. I don't look sick, some days (rarer and rarer now) I don't feel sick, and when I'm out in public I'm good at hiding it. (Goes back to the hair/makeup/clothing thing, though really good makeup can hide a lot)
It also doesn't help my case that I have one parent recovering from heart surgery and going in for a minor procedure this coming week and another parent who is only alive because she's on dialysis 3 days a week. I pick up the slack when I can, do what I can, but sometimes it doesn't feel like I do enough. It also doesn't help that my puppy managed to knock 2 of my mother's teeth out LAST WEEK and I only just noticed it tonight. I mean, how do you not notice that when you see and talk to the person every day?
So for now, it's a hurry up and wait deal. Again. Doctor's appointments, tests, waiting for results, and forcing them to find out why I'm so sick. It's not a pity party, it's not a cry for attention... it's real. And knowing if they don't try--if I don't try--to find answers, I might end up exactly where my mother is in less than 20 years. That's not a long time at all. So I've put my faith in His hands, when I do go out, I take the time to look nicer than I used to, and pray for real answers.
Thursday, February 16, 2012
Struck by Lightning
Most of us go through our entire lives just accepting what has happened and move forward. Some things take a bit longer to digest and deal with before its accepted and life goes on. Very few ever take a look back and actually think/analyze/see any effects of most events. Some of us either live for right now, or go through the present barely there while preparing for the future. Others remain stuck in an endless loop of trying to relive parts of their past. Some even just live to make it through the end of the day. That's not to say that most of us don't have goals, plans, ideas, or hopes for the future, but rather sometimes you have to take a hard look behind you in order to realize where you are now and where to go next. It's during that time that the light bulb goes on and suddenly you realize why you are where you are. In my case, I realized it's my own fault.
This past week has been a pretty rough one. Again. I was introduced to the new student dean on campus who, after a brief look at my school file, assumed that I'm not fit enough to finish my education at his school. If I'm too sick to finish one class, I'm too sick to finish all. I now have some pretty powerful allies behind me and a plan to finish my education there. Just like employment, it's not that I CAN'T get a job, but rather I can't KEEP one. Employers are sticklers with rules such as showing up on time when scheduled and always doing so, vacation time aside (that is, of course, if you're lucky enough to have a job that gives you vacation days). That's kinda where I have a problem. And it's no different with my education. My mind still works (most days), but sometimes my body has other plans. This is something the dean doesn't quite understand--yet. Then it hit me today. It's my own fault.
When I was finally diagnosed 9 years ago, I was too relieved to find out that no, I wasn't crazy, and yes, what I have has a name. And I left it like that. Even with mounting evidence that something else was going on, more symptoms that couldn't be explained away by my disease, and having more questions than answers. While I got frustrated at times, I still blindly followed my doctors' orders. New symptom? Same old tests, but new medications to treat the symptoms. I stopped taking almost all of my medications. There are 3 I need to take daily: my inhaler for COPD, an anti seizure medication to control my cluster headaches, and a stomach pill for heartburn most likely caused by steroids and my recent weight gain. I say that because when I lost 140lbs, I found that I almost never had heartburn. I do have other prescriptions on an "as needed" basis--panic attacks and when the pain gets too bad for Advil to do much good. I try not to take either of those unless there is little to no other choice.
I started meditating again and doing low impact workouts (yoga right now... have to work up to a more difficult routine via baby steps), I changed my diet as much as I could. I prefer fresh fruit and vegetables over canned and/or frozen processed ones, instead of "whole wheat" I switched to whole grain (whole wheat products tend to be much more processed), cut out all fast food, and have cut out a lot of processed, preserved, and ready to eat foods. That's not to say I don't like the occasional junk food. I can feel a difference when I eat something that's not as healthy versus what is. It's not always easy, but it was/is something.
As far as how this is all my fault? Other than becoming a few doctors' sheep, I haven't advocated for further testing, more concrete answers, I haven't asked enough questions or made sure the questions I have asked were acceptably answered instead of getting frustrated and accepted non-commital, one size fits all answers. I have also in general put my own health on the back burner for a number of reasons. Lightning strike number 2.
Growing up, I've heard a lot of "you're so much like your father." While in quite a few ways it is true, I've come to realize that I'm not as alike as most people assume or as much alike as I also assumed. I'm very much like my mother. And I'm very much like her in the important ways that count. Not too long after I had to leave work, I went through a bit (okay, more than a bit, but that's besides the point) of a selfish period. I couldn't be THAT sick. Why, of all the evil, selfish, horrible people on this earth, was I sick? I did a lot of stupid, selfish things. But I was still a doctor's sheep. Taking pill after pill not to cure me, as there isn't a cure for fibromyalgia, but rather pills to manage symptoms and try to give me some semblance of quality of life. Then my brother moved back home with his infant son. With the help of my mother and I, we not only helped take care of that beautiful little boy, we stood behind and supported my brother while he figured out what he was going to do with his life. While he didn't have a bad job, it wasn't quite a job that was good enough in his mind to provide for his son. He chose to go back to school so that he could have a career, benefits, retirement plan, and the ability to build a great life for him and his son. I not only highly respected him for that choice, but supported him. And I was damn proud of him for it. I still kind of miss having missed his graduation with honors because his son (then about 2 years old) preferred to run amok in the foyer outside of the auditorium. Because of his hard work, he accepted a great job to further his dreams. And while he was working hard to get where he wanted, my mother and I were always there to help raise his son. (Just a side note... I firmly believe in nature vs. nurture--that adorable little boy is, without a doubt, a mini-me. My brother was always the quiet one, stayed out of trouble, did as he was told almost all of the time... my entire family and family friends have never let me forget that I was... well...not quite as docile. You could blink and I would be into something). Even though both have moved out, my nephew with his mother, my brother with his new wife and family, I look forward to my weekends with him. But back to the point. During all of this, I remained a medical sheep, choosing to accept the blanket diagnosis, but putting my own advocacy on hold to help my family.
I further put my healthcare on hold after my mother got sick. She spent almost 3 weeks in the hospital due to renal failure and over a dozen mini strokes (TIAs for those familiar with it). I wish I spent more time in the hospital with her, but her mother was coming up to stay at the house, my nephew's mother stepped up and took him to help us and get to know her son better, I had what seemed like a zoo to feed (giant macaw, 10 guinea pigs, 2 dogs, a mouse, chinchilla, and I'm sure I'm forgetting a few), family and family friends to contact, call, email, text, etc. as everyone was very worried about her. Mom isn't exactly the best patient in the world. As long as she knows what's going on, why tests are being run and for what purpose, what medications she's being given and exactly why, she's not AS bad. Having gone from a heavy smoker to nothing in addition to sitting in a hospital room helped nothing. Other than the 4 million questions, tantrums, and the usual reaction to being stuck almost helplessly in a hospital room with very few answers for the first few days, she was more worried about the house. Is it clean? Is it "Nana" clean? Am I making sure that my father and grandmother are taking care of themselves (or am I making sure they are?) And considering it was around Christmas time, she was extremely worried that the tree wouldn't be up and decorated. So, I would wake up, have my coffee, feed the zoo, wait to hear from my dad to hear an update, send out all of the appropriate messages to family and friends to ensure them that she was okay at the moment. Then I'd head to the hospital after all of this was done to visit her myself. I can't lie. It was difficult to see her like that. The strong, strong willed, stubborn, seemingly unstoppable woman sitting there frustrated, looking defeated in a hotel room. When I finally got a few moments alone, I told my mother not to worry about the house. It would be so scrubbed, cleaned, groceries provided, and had made arrangements with my oldest friend--my best friend of 22 years that our Christmas tree would not only be put up, but decorated. We would play the rest of the house decorations by ear, but mom being mom, was more concerned with getting the tree up. I spoke to my mother one morning after speaking to my father and told her I had a few things to take care of at home. I scrubbed floors, ceilings, animal cages, scrubbed the furniture, the kitchen, you name it, I did it. After all, mom wanted the house to pass the "Nana inspection" and a tree had to be put up. It wasn't much, but it was something to help ease her mind and focus on her own health. My biggest fear was that she wouldn't come home from the hospital to see the tree. My father walked in that night to find the house not just clean, but sparkling clean. I remember he walked back outside and back in a few times to make sure he was in the right house. A "Nana inspection" is somewhat a cross between a military inspection and a white glove test. I even cleaned my bedroom(I chose the couch during her visit), put a small vase of fresh flowers on the night stand for Nana, bought her tea, and made sure I knew what she needed, when, where, and what she needed to eat considering her own health. I'd of given anything to be there all day every day, but I knew that I had to take a backseat role to make sure that everyone else involved was taken care of. My mother was in good hands in her room. And I knew if she knew I was taking care of the "other" non medical stuff, she'd understand. And she did.
It was a tough transition when she came home. Between her recovery and blood pressure medications, there were many days she could barely get out of bed because of what her body had just went through and medication side effects. I realize now that I never gave my health a second though.
Since that time, I decided to return to college. Being a patient of a life changing chronic illness, I know how the medical and psychological/psychiatry field treats patients like us. Dealing with a life changing illness is an extremely difficult event to not only wrap your head around, but it is difficult to deal with. You spent all your life setting goals, working, learning, and traveling the path you seem to have set out for yourself. Then life drops something like this in your lap. It's far from easy to deal with. You have to change your life, the way you think, you deal with doctor after doctor who push pills to help you feel better, to improve your quality of life, then you're pushed out the door as if you're not a person, not a patient, but another number, statistic, billable hours. The mental health field isn't much better. More medications, little to know listening as to what is going on inside your mind and what it's like to have one life one day, but a totally different life the next. You can no longer do what you used to. You don't know if you'll ever even get back pieces of the life you were forced to leave behind.
I could empathize with my mother. No, my kidneys weren't failing, no, I wasn't on 50+ pills a day to control blood pressure, absorb kidney damaging nutrients and minerals, or to have that moment to look back and see her life, all she did, everything she sacrificed to get where she was. And just like that, it was gone. But through my own experiences, it doesn't mean life is anywhere near over. The second time she was hospitalized was the end of a good run and determination. Her kidneys had failed for good, having lasted much longer than her specialist could have ever expected. While she's slowly coming off more medications to control her blood pressure, she spends 3 mornings a week attached to a machine to filter her blood--something her kidneys are no longer capable of doing. She is on the National Registry, but there is a minimum of a 7 year wait list.... longer for rarer blood types like hers. I discovered I'm a perfect match, but cannot donate due to my own health. Just like with everything else, she came first, my family came first, my goal of finishing up my degree was at the top of the list. My health continued to sit on the back burner. And it has remained there until now.
There is no point in going over the "what ifs?" the "should haves, would haves, could haves." The only thing to do now is to focus on myself, fight for tests, answers, make it clear I am neither a pin cushion without good reason, nor a sheep who is just going to sit there and nod listening to the same things I've heard from years. If I'm no good for myself, how can I be expected to help others? What if I am following in my mother's footsteps? It's time to find out now before it becomes too late to be able to help anyone else.
So how am I like my mother? She put her family first, she sacrificed what she wanted, she gave up almost everything to make sure her family was taken care of and it very well have caused her to become ill much earlier than she should have because she chose to take care of us instead of her own health. And I've realized that I have been doing the same thing. And for that, I couldn't be prouder to have inherited that trait. Not everyone can do what she's done. Many people would run away, find excuses to stay away until something is needed, some just pretend none of it exists. Well, it does. And for those who choose any of the above options are cowards. Selfish, self-centered cowards. Especially when it comes to family. Life may not always turned out the way we wanted, but when those detours and road blocks do get in our way, our reactions to them are what helps us become the people we are. While I cannot control others' thoughts and actions, I can, however, choose how I react and choose who I will keep in my life.
This past week has been a pretty rough one. Again. I was introduced to the new student dean on campus who, after a brief look at my school file, assumed that I'm not fit enough to finish my education at his school. If I'm too sick to finish one class, I'm too sick to finish all. I now have some pretty powerful allies behind me and a plan to finish my education there. Just like employment, it's not that I CAN'T get a job, but rather I can't KEEP one. Employers are sticklers with rules such as showing up on time when scheduled and always doing so, vacation time aside (that is, of course, if you're lucky enough to have a job that gives you vacation days). That's kinda where I have a problem. And it's no different with my education. My mind still works (most days), but sometimes my body has other plans. This is something the dean doesn't quite understand--yet. Then it hit me today. It's my own fault.
When I was finally diagnosed 9 years ago, I was too relieved to find out that no, I wasn't crazy, and yes, what I have has a name. And I left it like that. Even with mounting evidence that something else was going on, more symptoms that couldn't be explained away by my disease, and having more questions than answers. While I got frustrated at times, I still blindly followed my doctors' orders. New symptom? Same old tests, but new medications to treat the symptoms. I stopped taking almost all of my medications. There are 3 I need to take daily: my inhaler for COPD, an anti seizure medication to control my cluster headaches, and a stomach pill for heartburn most likely caused by steroids and my recent weight gain. I say that because when I lost 140lbs, I found that I almost never had heartburn. I do have other prescriptions on an "as needed" basis--panic attacks and when the pain gets too bad for Advil to do much good. I try not to take either of those unless there is little to no other choice.
I started meditating again and doing low impact workouts (yoga right now... have to work up to a more difficult routine via baby steps), I changed my diet as much as I could. I prefer fresh fruit and vegetables over canned and/or frozen processed ones, instead of "whole wheat" I switched to whole grain (whole wheat products tend to be much more processed), cut out all fast food, and have cut out a lot of processed, preserved, and ready to eat foods. That's not to say I don't like the occasional junk food. I can feel a difference when I eat something that's not as healthy versus what is. It's not always easy, but it was/is something.
As far as how this is all my fault? Other than becoming a few doctors' sheep, I haven't advocated for further testing, more concrete answers, I haven't asked enough questions or made sure the questions I have asked were acceptably answered instead of getting frustrated and accepted non-commital, one size fits all answers. I have also in general put my own health on the back burner for a number of reasons. Lightning strike number 2.
Growing up, I've heard a lot of "you're so much like your father." While in quite a few ways it is true, I've come to realize that I'm not as alike as most people assume or as much alike as I also assumed. I'm very much like my mother. And I'm very much like her in the important ways that count. Not too long after I had to leave work, I went through a bit (okay, more than a bit, but that's besides the point) of a selfish period. I couldn't be THAT sick. Why, of all the evil, selfish, horrible people on this earth, was I sick? I did a lot of stupid, selfish things. But I was still a doctor's sheep. Taking pill after pill not to cure me, as there isn't a cure for fibromyalgia, but rather pills to manage symptoms and try to give me some semblance of quality of life. Then my brother moved back home with his infant son. With the help of my mother and I, we not only helped take care of that beautiful little boy, we stood behind and supported my brother while he figured out what he was going to do with his life. While he didn't have a bad job, it wasn't quite a job that was good enough in his mind to provide for his son. He chose to go back to school so that he could have a career, benefits, retirement plan, and the ability to build a great life for him and his son. I not only highly respected him for that choice, but supported him. And I was damn proud of him for it. I still kind of miss having missed his graduation with honors because his son (then about 2 years old) preferred to run amok in the foyer outside of the auditorium. Because of his hard work, he accepted a great job to further his dreams. And while he was working hard to get where he wanted, my mother and I were always there to help raise his son. (Just a side note... I firmly believe in nature vs. nurture--that adorable little boy is, without a doubt, a mini-me. My brother was always the quiet one, stayed out of trouble, did as he was told almost all of the time... my entire family and family friends have never let me forget that I was... well...not quite as docile. You could blink and I would be into something). Even though both have moved out, my nephew with his mother, my brother with his new wife and family, I look forward to my weekends with him. But back to the point. During all of this, I remained a medical sheep, choosing to accept the blanket diagnosis, but putting my own advocacy on hold to help my family.
I further put my healthcare on hold after my mother got sick. She spent almost 3 weeks in the hospital due to renal failure and over a dozen mini strokes (TIAs for those familiar with it). I wish I spent more time in the hospital with her, but her mother was coming up to stay at the house, my nephew's mother stepped up and took him to help us and get to know her son better, I had what seemed like a zoo to feed (giant macaw, 10 guinea pigs, 2 dogs, a mouse, chinchilla, and I'm sure I'm forgetting a few), family and family friends to contact, call, email, text, etc. as everyone was very worried about her. Mom isn't exactly the best patient in the world. As long as she knows what's going on, why tests are being run and for what purpose, what medications she's being given and exactly why, she's not AS bad. Having gone from a heavy smoker to nothing in addition to sitting in a hospital room helped nothing. Other than the 4 million questions, tantrums, and the usual reaction to being stuck almost helplessly in a hospital room with very few answers for the first few days, she was more worried about the house. Is it clean? Is it "Nana" clean? Am I making sure that my father and grandmother are taking care of themselves (or am I making sure they are?) And considering it was around Christmas time, she was extremely worried that the tree wouldn't be up and decorated. So, I would wake up, have my coffee, feed the zoo, wait to hear from my dad to hear an update, send out all of the appropriate messages to family and friends to ensure them that she was okay at the moment. Then I'd head to the hospital after all of this was done to visit her myself. I can't lie. It was difficult to see her like that. The strong, strong willed, stubborn, seemingly unstoppable woman sitting there frustrated, looking defeated in a hotel room. When I finally got a few moments alone, I told my mother not to worry about the house. It would be so scrubbed, cleaned, groceries provided, and had made arrangements with my oldest friend--my best friend of 22 years that our Christmas tree would not only be put up, but decorated. We would play the rest of the house decorations by ear, but mom being mom, was more concerned with getting the tree up. I spoke to my mother one morning after speaking to my father and told her I had a few things to take care of at home. I scrubbed floors, ceilings, animal cages, scrubbed the furniture, the kitchen, you name it, I did it. After all, mom wanted the house to pass the "Nana inspection" and a tree had to be put up. It wasn't much, but it was something to help ease her mind and focus on her own health. My biggest fear was that she wouldn't come home from the hospital to see the tree. My father walked in that night to find the house not just clean, but sparkling clean. I remember he walked back outside and back in a few times to make sure he was in the right house. A "Nana inspection" is somewhat a cross between a military inspection and a white glove test. I even cleaned my bedroom(I chose the couch during her visit), put a small vase of fresh flowers on the night stand for Nana, bought her tea, and made sure I knew what she needed, when, where, and what she needed to eat considering her own health. I'd of given anything to be there all day every day, but I knew that I had to take a backseat role to make sure that everyone else involved was taken care of. My mother was in good hands in her room. And I knew if she knew I was taking care of the "other" non medical stuff, she'd understand. And she did.
It was a tough transition when she came home. Between her recovery and blood pressure medications, there were many days she could barely get out of bed because of what her body had just went through and medication side effects. I realize now that I never gave my health a second though.
Since that time, I decided to return to college. Being a patient of a life changing chronic illness, I know how the medical and psychological/psychiatry field treats patients like us. Dealing with a life changing illness is an extremely difficult event to not only wrap your head around, but it is difficult to deal with. You spent all your life setting goals, working, learning, and traveling the path you seem to have set out for yourself. Then life drops something like this in your lap. It's far from easy to deal with. You have to change your life, the way you think, you deal with doctor after doctor who push pills to help you feel better, to improve your quality of life, then you're pushed out the door as if you're not a person, not a patient, but another number, statistic, billable hours. The mental health field isn't much better. More medications, little to know listening as to what is going on inside your mind and what it's like to have one life one day, but a totally different life the next. You can no longer do what you used to. You don't know if you'll ever even get back pieces of the life you were forced to leave behind.
I could empathize with my mother. No, my kidneys weren't failing, no, I wasn't on 50+ pills a day to control blood pressure, absorb kidney damaging nutrients and minerals, or to have that moment to look back and see her life, all she did, everything she sacrificed to get where she was. And just like that, it was gone. But through my own experiences, it doesn't mean life is anywhere near over. The second time she was hospitalized was the end of a good run and determination. Her kidneys had failed for good, having lasted much longer than her specialist could have ever expected. While she's slowly coming off more medications to control her blood pressure, she spends 3 mornings a week attached to a machine to filter her blood--something her kidneys are no longer capable of doing. She is on the National Registry, but there is a minimum of a 7 year wait list.... longer for rarer blood types like hers. I discovered I'm a perfect match, but cannot donate due to my own health. Just like with everything else, she came first, my family came first, my goal of finishing up my degree was at the top of the list. My health continued to sit on the back burner. And it has remained there until now.
There is no point in going over the "what ifs?" the "should haves, would haves, could haves." The only thing to do now is to focus on myself, fight for tests, answers, make it clear I am neither a pin cushion without good reason, nor a sheep who is just going to sit there and nod listening to the same things I've heard from years. If I'm no good for myself, how can I be expected to help others? What if I am following in my mother's footsteps? It's time to find out now before it becomes too late to be able to help anyone else.
So how am I like my mother? She put her family first, she sacrificed what she wanted, she gave up almost everything to make sure her family was taken care of and it very well have caused her to become ill much earlier than she should have because she chose to take care of us instead of her own health. And I've realized that I have been doing the same thing. And for that, I couldn't be prouder to have inherited that trait. Not everyone can do what she's done. Many people would run away, find excuses to stay away until something is needed, some just pretend none of it exists. Well, it does. And for those who choose any of the above options are cowards. Selfish, self-centered cowards. Especially when it comes to family. Life may not always turned out the way we wanted, but when those detours and road blocks do get in our way, our reactions to them are what helps us become the people we are. While I cannot control others' thoughts and actions, I can, however, choose how I react and choose who I will keep in my life.
Wednesday, February 15, 2012
A Secret Garden
There is so much I should be doing right now and today in general. I have a final exam tomorrow for my substance abuse/dependence class tomorrow afternoon, a ton of mail to go through, bills to pay, and of course, cleaning just to name a few. Once again I was up most of last night because my brain wouldn't shut down and as the latest storm system got closer, the higher my pain levels soared. Unfortunately, once it gets to be around midnight, I can't/won't take anything stronger than Advil since I have to wake up at 4am to take my mother to dialysis and the risks just aren't worth it. When the pain increases as quickly as it did, I don't even bother with Advil as it becomes just another chemical/poison in my system that doesn't work. Now that I'm back home with no plans to go anywhere, I'm hoping my pain medication works at least a little bit.
Eight years ago last month I was diagnosed with Fibromyalgia. It never would have happened had my primary doctor not referred me to several specialists to prove that there was nothing wrong with me because my labs at the time were improving even if my symptoms weren't. Eight years later, I wonder if the specialist I chose to stay with missed something. Since that time, I have had a myriad of new symptoms, changes in my labwork, and while I had a very brief reprieve from what can be downright crippling pain, I'm worse than when I began this medical ordeal. My current primary doctor simply goes on the word of my specialists when it comes to anything outside of the all too often injury, cold, flu, sinus infection, etc. Unfortunately, both doctors listen to my symptoms, evaluate my overall "comfort level," and prescribe more medication to treat the symptoms. Some things are pretty common with fibromyalgia, but there are too many other symptoms I have not found to be linked to the disease. Things like overall muscle pain, migraines, a low tolerance for pain, but high pain threshold, and depression are common in fibromyalgia patients. Except I have much more than that. And I refuse to take any more medications until I find out answers. I can't open my hands completely, I've been dealing with numbness/weakness, severe joint pain, multiple vitamin deficiencies, and my migraines ceased being migraines and became monsters several years ago. I'm talking about spending weeks in bed alternating anxiety medication, migraine medication, and powerful pain killers just to get them under control. I can't watch television, talk on the phone, or do anything that can stimulate me in any way or it becomes this crippling, out of control monster. After seeing a neurologist, I found a medication that keeps these monster headaches under control and allow me to function. Since they seem to happen twice a year--in the early spring and late fall--I only get a tiny twinge of pain during these times now. Nothing too horrible, but just enough of a twinge to know that it's there lurking. And I can deal with that. It's the constant fighting, medical complacency, and knowing something else is going on that leaves me in tears too often. No one should have to live like this. No one should have to wake up every morning sick, go to bed at night sick, and be constantly reminded that they aren't normal. It is even worse for those who don't look sick. It's even worse when those who are supposed to love and support you choose to criticize, demean, and judge you out of ignorance and intolerance than attempt to try to learn about what the problem is. I am not on disability because I'm too lazy to work, but because while yes I am sick, my illness(es) make it impossible to find steady, gainful employment. But I've been trying to get an education with the hopes that by the time I graduate, doctors will have found out exactly what is going on and find a way to treat me--hopefully without having to take handfulls of pills every day. Unfortunately, the college I am currently attending seems to accommodate individuals with physical handicaps (meaning those who need wheelchairs, canes, etc.), individuals with learning disabilities, but when it comes to chronic illnesses--especially invisible ones--it becomes one medically withdrawn semester after another. Last semester I finally gained some ground with the school by being allowed to take an incomplete in one course while having to medically withdraw from two others because of the nature of the work. I don't know what happened, but there are several new administrators and deans with whom have no tolerance at all. Even with plenty of documentation, I was informed that "if I can't finish one class because of my medical condition, I cannot finish any." What it comes down to is the professor. Many professors have no problems accommodating my illness, which results in many missed classes, as long as I can prove that I am keeping up with the work from home, that I am turning assignments in on time, and can prove that I am taking away from the course the knowledge I should be given the course. In many cases, I have not only proved that even when my physical body will not cooperate, my mind is just fine, and I have proven to show work that is far superior to students with whom show up for every class. That alone should speak volumes, yet it doesn't. And so while I prepare to deal with doctors and tests until someone is able to find an underlying cause to my illness, I am also being forced to prepare for a fight with my school on the basis of discrimination. And neither are things I have any intention of backing down from.
Eight years ago last month I was diagnosed with Fibromyalgia. It never would have happened had my primary doctor not referred me to several specialists to prove that there was nothing wrong with me because my labs at the time were improving even if my symptoms weren't. Eight years later, I wonder if the specialist I chose to stay with missed something. Since that time, I have had a myriad of new symptoms, changes in my labwork, and while I had a very brief reprieve from what can be downright crippling pain, I'm worse than when I began this medical ordeal. My current primary doctor simply goes on the word of my specialists when it comes to anything outside of the all too often injury, cold, flu, sinus infection, etc. Unfortunately, both doctors listen to my symptoms, evaluate my overall "comfort level," and prescribe more medication to treat the symptoms. Some things are pretty common with fibromyalgia, but there are too many other symptoms I have not found to be linked to the disease. Things like overall muscle pain, migraines, a low tolerance for pain, but high pain threshold, and depression are common in fibromyalgia patients. Except I have much more than that. And I refuse to take any more medications until I find out answers. I can't open my hands completely, I've been dealing with numbness/weakness, severe joint pain, multiple vitamin deficiencies, and my migraines ceased being migraines and became monsters several years ago. I'm talking about spending weeks in bed alternating anxiety medication, migraine medication, and powerful pain killers just to get them under control. I can't watch television, talk on the phone, or do anything that can stimulate me in any way or it becomes this crippling, out of control monster. After seeing a neurologist, I found a medication that keeps these monster headaches under control and allow me to function. Since they seem to happen twice a year--in the early spring and late fall--I only get a tiny twinge of pain during these times now. Nothing too horrible, but just enough of a twinge to know that it's there lurking. And I can deal with that. It's the constant fighting, medical complacency, and knowing something else is going on that leaves me in tears too often. No one should have to live like this. No one should have to wake up every morning sick, go to bed at night sick, and be constantly reminded that they aren't normal. It is even worse for those who don't look sick. It's even worse when those who are supposed to love and support you choose to criticize, demean, and judge you out of ignorance and intolerance than attempt to try to learn about what the problem is. I am not on disability because I'm too lazy to work, but because while yes I am sick, my illness(es) make it impossible to find steady, gainful employment. But I've been trying to get an education with the hopes that by the time I graduate, doctors will have found out exactly what is going on and find a way to treat me--hopefully without having to take handfulls of pills every day. Unfortunately, the college I am currently attending seems to accommodate individuals with physical handicaps (meaning those who need wheelchairs, canes, etc.), individuals with learning disabilities, but when it comes to chronic illnesses--especially invisible ones--it becomes one medically withdrawn semester after another. Last semester I finally gained some ground with the school by being allowed to take an incomplete in one course while having to medically withdraw from two others because of the nature of the work. I don't know what happened, but there are several new administrators and deans with whom have no tolerance at all. Even with plenty of documentation, I was informed that "if I can't finish one class because of my medical condition, I cannot finish any." What it comes down to is the professor. Many professors have no problems accommodating my illness, which results in many missed classes, as long as I can prove that I am keeping up with the work from home, that I am turning assignments in on time, and can prove that I am taking away from the course the knowledge I should be given the course. In many cases, I have not only proved that even when my physical body will not cooperate, my mind is just fine, and I have proven to show work that is far superior to students with whom show up for every class. That alone should speak volumes, yet it doesn't. And so while I prepare to deal with doctors and tests until someone is able to find an underlying cause to my illness, I am also being forced to prepare for a fight with my school on the basis of discrimination. And neither are things I have any intention of backing down from.
Monday, February 6, 2012
Finally a day with the Sunroof Open!
The weather has been beyond unseasonably warm lately and I was actually able to open the sunroof this afternoon on my way home. Well, the moonroof.. it was still a bit too chilly to open the sunroof entirely. But I'll take it. After spending the last 2 weeks having anything and everything about the SuperBowl crammed down my throat by every media source, I had no intentions of watching the game last night. Besides, there was an SVU marathon on and in the past few years the commercials sucked just about as much as the games have. But I did find myself flipping back and forth a few times since my mother is a die hard Patriots fan. Me? I'm a Jets fan, so I celebrate every time New England loses. I turned the game back on with a minute to go and was hooked. Then feared what 4am would bring, since mom had gone to bed already. She was PISSED in 2008 when the Giants pulled it off, so I could only imagine flying coffee cups and utensils as I got up to pour my coffee. All she said was "they blew it, they deserved to lose." I was rather speechless. I couldn't wait to rub the loss in her face and she just took the fun out of it. Now the media is cramming my least favorite holiday down everyone's throats--Valentine's Day. Even when I was engaged, my fiance minimalized the day because he knew I couldn't (and still can't) stand the day. This year is no different, except for the first time in 15 years, I'm single. Makes no difference to me.
So I have the Golden Girls on while I try to relax and prepare for tomorrow. Eight hours on campus, I have to drop another class to reduce my stress, make up an exam to start finishing up a class from last semester, and start on a small research project due on Thursday. I was able to get all the reading required for the week done today while I sat in a shop getting my front brakes replaced. Last April, my dealership told me that both my front and rear brakes were dangerously low, especially the rear brakes, and if I didn't replace them immediately, I could risk killing myself or someone else. Right. My car is equipped with front brake sensors to let me know when the front pads require replacement (which hadn't gone one--"it doesn't always work" the service writer explained) and I hadn't noticed anything different while driving, but I did go out and buy new rear pads and changed them in about 45 minutes in the driveway. They looked almost new. Last week the light went on indicating the front pads actually were low and I started getting estimates. I was looking at $375-$500+ for a set of pads. Like any sleazy mechanic, the rotors HAD to be changed too. I found a place that would inspect and give me an estimate for free and if it was acceptable, I could have them fixed there. Turns out the rotors were fine (means next time, they might just be able to be cut) and for a little under $200, great customer service, two hours, my car was fixed. And fixed right. Next month I get to replace at least 2 tires (4 if my tax return comes in) and I should be set for quite awhile.
It's funny how a few long, deep breaths and a little bit of faith can make things turn around. I'm still nowhere near I want to be, but I am changing little things at a time in order to get there. A great poet and philosopher once wrote "You are good when you walk to your goal firmly and with bold steps. Yet you are not evil when you go thither limping." --Gibran It couldn't be more true and has been something that has stuck with me since I first read "The Prophet." I'll get there someday.
So I have the Golden Girls on while I try to relax and prepare for tomorrow. Eight hours on campus, I have to drop another class to reduce my stress, make up an exam to start finishing up a class from last semester, and start on a small research project due on Thursday. I was able to get all the reading required for the week done today while I sat in a shop getting my front brakes replaced. Last April, my dealership told me that both my front and rear brakes were dangerously low, especially the rear brakes, and if I didn't replace them immediately, I could risk killing myself or someone else. Right. My car is equipped with front brake sensors to let me know when the front pads require replacement (which hadn't gone one--"it doesn't always work" the service writer explained) and I hadn't noticed anything different while driving, but I did go out and buy new rear pads and changed them in about 45 minutes in the driveway. They looked almost new. Last week the light went on indicating the front pads actually were low and I started getting estimates. I was looking at $375-$500+ for a set of pads. Like any sleazy mechanic, the rotors HAD to be changed too. I found a place that would inspect and give me an estimate for free and if it was acceptable, I could have them fixed there. Turns out the rotors were fine (means next time, they might just be able to be cut) and for a little under $200, great customer service, two hours, my car was fixed. And fixed right. Next month I get to replace at least 2 tires (4 if my tax return comes in) and I should be set for quite awhile.
It's funny how a few long, deep breaths and a little bit of faith can make things turn around. I'm still nowhere near I want to be, but I am changing little things at a time in order to get there. A great poet and philosopher once wrote "You are good when you walk to your goal firmly and with bold steps. Yet you are not evil when you go thither limping." --Gibran It couldn't be more true and has been something that has stuck with me since I first read "The Prophet." I'll get there someday.
Friday, February 3, 2012
A Seemingly Unbreakable Circle
Nine years ago I had to leave my job. My boyfriend at the time found me on the bedroom floor curled up in the fetal position because it was just too painful to change out of my uniform. The hospital and my doctor found signs of some kind of virus, infection, or inflammation in my blood work, but had no idea what it was. As my labs improved, my symptoms did not. My doctor (like most at the time) told me my blood work looked fine, so therefore I must be, and to go back to work. I refused to accept "it's all in your head" and demanded a referral for a second opinion. I received 3... after reviewing 6 weeks of basic cbc/diff panels, negative Lyme disease, ANA, and rheumatoid tests, he gave me referrals to a psychiatrist and three rheumatologists. I didn't bother with the psychiatrist, but after a brief physical exam and lab reviews, all three specialists came to the same conclusion: fibromyalgia. Only one tested a bit further due to an outbreak of Fifths disease in the area and it came back positive. Then started round after round of medications to try to help me. Two years later, I tested positive for Lyme Disease. Since then, I've had 8 (possibly 9) recurrences, a slew of new symptoms, some stay, some only last for weeks and are gone for months, but nothing was done except for more pills to treat the symptoms. Then I somehow got Epstein Barr Virus. And again, nothing was done.
Nine years later, I still don't have any more answers than when I first started. I've done some pretty extensive research on Fibromyalgia, Lyme Disease, and EBV. Two are viruses that your body fights off in its own time. In rare cases, Lyme Disease can recur and EBV will recur if the situation presents itself, such as severe stress. I'm on prescription strength levels of Folic Acid and Vitamin D just to keep those levels at the LOW end of normal...my bones and joints ache, I went from chronic migraines to cluster type headaches--spending 2-3 weeks lying in bed, no television, no phone, no nothing except round after round of migraine medication, Percocet, and Xanax because once I get it under some semblance of control, the slightest stimulation is enough to make it feel like my head is going to explode. I go through phases of my hair falling out (not the typical stress induced hair loss, hereditary loss, or the normal seasonal "shedding" we all have) I'm talking about handfuls at a time... clogging the shower drain when I wash it hair loss. I was told to take more B-Complex and Vitamin E and try to control my stress levels. I go through weeks to months at a time not being able to spend any time in the sun because I break out in thousands of tiny itchy blisters. So then I'm put on steroids. But it's all Fibromyalgia. And I'm just not buying it anymore. I have no doubt that the disease actually exists... I subscribe to an online group where there are literally thousands of people who suffer from the disease.
My doctors have just about given up as to what is really going on, rather than taking all of my symptoms as a whole and finding out what's REALLY going on. This week was no exception. For the past several weeks, I've spent between 18 and 20 hours a day sleeping and it still doesn't feel like enough. My recent labs indicated that something is going on... possibly another virus, but my doctor wants me to start on a second anti-seizure medication assuming my sleeping is the result of depression. Again--more pills to deal with symptoms, but no answers. I've made it a point with every doctor to make sure they know my history. I've never felt healthy. It was always hypochondria or growing pains or PMS or some excuse. I was hospitalized over 30 years ago due to a massive toxic waste dump fire and have found a 7--yes SEVEN--page list that the DEP composed of what they found at the site. That list does exclude the radioactive materials that burned. I've lost two family members because of the effects of that fire, have a parent on dialysis, possibly the result of that fire, but the doctors just don't know and I've spent most of my life feeling like hell. But it's just Fibromyalgia, so just treat symptoms as they crop up and send me on my way. And I feel like I'm back at square one. I've been referred by friends to two doctors, both came with glowing reviews and seemed absolutely perfect, but they do not accept any insurance. I pay in full up front and hope Medicare reimburses me, but I just don't have the money.
It's been a most trying week, but I did make an appointment with my neurologist--who in the past has taken my symptoms more seriously and has thought outside of the box when it comes to finding out what's wrong. Hopefully he'll be a bit more helpful and encouraging. I just know something is wrong, but have no idea what. And I'm tired of being told to take more pills to manage symptoms when there seem to be a dozen different diagnoses, but no underlying cause to explain why. I intend to find out what the underlying problem is by the end of this year... even if I have to go to three dozen doctors and be sucked dry in lab tests... I'm going to have answers because I just can't live like this anymore. And no one should have to.
Nine years later, I still don't have any more answers than when I first started. I've done some pretty extensive research on Fibromyalgia, Lyme Disease, and EBV. Two are viruses that your body fights off in its own time. In rare cases, Lyme Disease can recur and EBV will recur if the situation presents itself, such as severe stress. I'm on prescription strength levels of Folic Acid and Vitamin D just to keep those levels at the LOW end of normal...my bones and joints ache, I went from chronic migraines to cluster type headaches--spending 2-3 weeks lying in bed, no television, no phone, no nothing except round after round of migraine medication, Percocet, and Xanax because once I get it under some semblance of control, the slightest stimulation is enough to make it feel like my head is going to explode. I go through phases of my hair falling out (not the typical stress induced hair loss, hereditary loss, or the normal seasonal "shedding" we all have) I'm talking about handfuls at a time... clogging the shower drain when I wash it hair loss. I was told to take more B-Complex and Vitamin E and try to control my stress levels. I go through weeks to months at a time not being able to spend any time in the sun because I break out in thousands of tiny itchy blisters. So then I'm put on steroids. But it's all Fibromyalgia. And I'm just not buying it anymore. I have no doubt that the disease actually exists... I subscribe to an online group where there are literally thousands of people who suffer from the disease.
My doctors have just about given up as to what is really going on, rather than taking all of my symptoms as a whole and finding out what's REALLY going on. This week was no exception. For the past several weeks, I've spent between 18 and 20 hours a day sleeping and it still doesn't feel like enough. My recent labs indicated that something is going on... possibly another virus, but my doctor wants me to start on a second anti-seizure medication assuming my sleeping is the result of depression. Again--more pills to deal with symptoms, but no answers. I've made it a point with every doctor to make sure they know my history. I've never felt healthy. It was always hypochondria or growing pains or PMS or some excuse. I was hospitalized over 30 years ago due to a massive toxic waste dump fire and have found a 7--yes SEVEN--page list that the DEP composed of what they found at the site. That list does exclude the radioactive materials that burned. I've lost two family members because of the effects of that fire, have a parent on dialysis, possibly the result of that fire, but the doctors just don't know and I've spent most of my life feeling like hell. But it's just Fibromyalgia, so just treat symptoms as they crop up and send me on my way. And I feel like I'm back at square one. I've been referred by friends to two doctors, both came with glowing reviews and seemed absolutely perfect, but they do not accept any insurance. I pay in full up front and hope Medicare reimburses me, but I just don't have the money.
It's been a most trying week, but I did make an appointment with my neurologist--who in the past has taken my symptoms more seriously and has thought outside of the box when it comes to finding out what's wrong. Hopefully he'll be a bit more helpful and encouraging. I just know something is wrong, but have no idea what. And I'm tired of being told to take more pills to manage symptoms when there seem to be a dozen different diagnoses, but no underlying cause to explain why. I intend to find out what the underlying problem is by the end of this year... even if I have to go to three dozen doctors and be sucked dry in lab tests... I'm going to have answers because I just can't live like this anymore. And no one should have to.
Subscribe to:
Posts (Atom)