So it's technically Saturday and 2 days after Thanksgiving, but it's taken me a few tries to get this blog right (and 2 days to come up with a title). Almost all families have traditions on Thanksgiving that evolve over the years as families move farther apart, expand, grow older; my family is no exception. In our case, our dinner went from being held at my grandparents' house to my aunt's house, but everything else stayed the same. Every other year, my uncle would be there since he would spend every other year with his wife's family instead of splitting the day between both families and still does. Since my older cousins married and started families, they split the day between both families, but the oldest cousin doesn't always get holidays off of work, so he and his wife do what they can to make it--they both work at the same restaurant/bar. Then there's my brother. He used to split time between his wife's family and ours, but that seems to have just stopped entirely and he spends all holidays with his wife and her family now. But very little else has changed. Thanksgiving, like all other family get togethers, is a typical family "dysfunction."
Last year was kind of weird for its own personal reasons, but it was a typical family dysfunction. The men standing around outside frying the turkey and getting drunk (before turkey frying, they'd find some excuse to do so), at least 10 different conversations going on with all of us involved in all of them, all of us trying to talk over each other, interrupting, trying to finish at least half a sentence, reliving embarrassing moments from early childhood (no one is immune except my grandfather), and my favourite--the lectures. When am I going to settle down? Am I dating anyone? If I am, is he a good guy this time? I'm not getting any younger. I told you you shouldn't have been a mechanic; that's not a proper career for a lady; I should've gone to school for something more lady like; I could've found a nice, wealthy man, settled down and started a family by now. But at least I'm starting to dress a little better, but can't I leave my hair down just once in awhile? You get the idea. haha
But I actually miss it all. I missed Easter this year because I was just too sick to go. I was running a fever, my lymph nodes were swollen, my pain level was about a 12 on a scale of 1-10, my joints were still extremely swollen I could only really fit into a pair of slippers and most of my pants didn't fit right because of the swelling in my hips and I could barely move. So by Thursday, I hadn't seen the family in over a year. I barely slept Wednesday night because of the pain and couldn't take anything since I was the one who had to drive Thursday. It was a little over an hour, mom wasn't having a bad day, but she wasn't having a great day either and I couldn't take the chance my dad was going to stay sober enough to drive home (some traditions are harder to break--especially when there are 2 turkeys to fry!). But at least I could move, my comfortable dress pants and shoes fit, and one of my good rings fit, so I was going to try to tough it out for the day. Except for getting up early to pick mom up from dialysis Friday morning, I could spend the weekend in bed with my pain meds resting and trying to get the flare under control. By 11am I was in tears wondering how I was going to make it through the entire day in that much pain, why my illnesses couldn't give me just one day of mild enough pain so I can spend time with my family, and angry that I know I should be thankful for a lot of things that day, but no one should ever have to live like this--and I wasn't just talking about myself--my mother, friends I've made over the past year going through the same thing, and the millions of others who are going through the same thing I am. Not being able to fully enjoy (or enjoy at all) holidays with family, not being able to have a "normal" life the way most people have, having to pace ourselves so that we don't overdo it--all of it. Then as we were leaving my mother had one of her dizzy spells in the driveway and did a face plant in the driveway. The good news is she's okay AND she didn't even tear her stockings (how I have no idea, but serious bonus points to Target and their $1 clearance designer lace stockings!), but she skinned it pretty good and is keeping an eye on it because the pain is a little strange now for just a skinned knee. But she swapped her 7" heels for her Dr. Scholl's "Fast Flats" in the car in case it happened again so at least she wouldn't completely lose her balance and fall again--and totally freak the rest of the family out. Her being on dialysis and needing a new kidney has them on edge to begin with, but the slightest hint of something off sends them panicking.
But this family dysfunction was the quietest ever. It was subdued, polite, and well, quiet. It was odd. I almost felt like I was spending time with the wrong family. I know it's been a tough year for all of us in terms of health, but we've had our share of tough years. It was almost like we were all in partial turkey comas long before the birds were even fried. Quiet or not, though, I'm incredibly thankful and love the fact that I did get to see many of them--and just that fact makes this latest flare, partially dislocated hip and all--easier to bear. There'll be another chance at Christmas after all. :)
Saturday, November 24, 2012
Thursday, November 15, 2012
Bad Policies/Poor Choices
When I returned to college a little over four years ago, I was aware of a few things: I might be putting myself into debt (possibly serious debt) for degrees that I may never use because my health would never improve enough to return to work; my doctors and I may have found that right combination of medication, exercise, and diet that would allow me to at least work in the field part time; and with everything I had gone through the previous 6+ years (well, honestly, my life until that point, but mostly since I had to leave the workforce), I knew I wanted to help others who were chronically ill.
Almost all doctors look at the physical self. How do they make that feel better? How to fix it? If it can't be fixed, as is the case sometimes, but rather at least controlled, how do you give the patient a comfortable "quality of life?" Even the specialists I have now, as amazing as they are, are more concerned with my symptoms, the diseases, the labs--the inner, physical workings. What gets lost is just how life changing something like this can be. I had a career. I had a life. Then all of that drastically changed in just a few short months.
I have yet to find a psychiatrist (misdiagnoses there aside as well) to understand, or psychologists to understand. I found one, but I realized the reason she understood was because she herself was sick--she had to leave the practice on permanent medical leave after about 12 weeks. In her place, I saw a young woman whose solution to everything was to take at least 90 minutes a day to myself and tell everyone not just how I'm feeling, but how they're making me feel and what I think about it. (All of my doctors laughed at that one.)
Community College went well. The school and my professors--all but one or two who eventually came around--worked with me and I graduated with an extremely high GPA and 2 AA degrees, honor society, and I had at least accomplished one goal. When transfer time came to finish my Bachelor's Degree, I was playing on a whole different field and the game had changed. I was forced to withdraw from entire semesters before the administration would allow me to finish at least one class if the professor would allow it; I learned that after a decade I did not have fibromyalgia and chronic Lyme Disease, but 2 autoimmune diseases that were by then pretty bad as far as out of control and wreaking havoc on my joints and surrounding tissues forcing a medical leave; and became the lab rat for the school.
Four year schools have disability offices to help students with disabilities receive the accommodations they need and help them navigate through any problems. Essentially, these offices become the advocates for and with the students. My school, however, has no idea how to help me. Autoimmune, or "invisible" illnesses are just not something they've ever dealt with before. Physical and learning disabilities are easy. There are policies and protocols for those. There are policies and protocols for everything: absences, time off, leave, withdrawals. Everything is very black and white, wrapped up in neat little packages. Which would be great, if say, I was in a wheelchair, needed crutches, or had a severe learning disability. Or had to take time off for a severe injury or something (the maximum time allowed for leave is 1 year--I'll get to that gem in a moment). I fall into that grey area and the school has admitted that I'm the first case they have had that they do not know how to handle. I have had to take time off to adjust to treatment, get my symptoms under control (almost there, but not quite yet), but I know that, just like before, there will be flares--times when I simply will not be able to make it to class because of pain and swelling. And there are policies against that both by professors and the school that punish students for that. If there were online classes offered, that would be awesome, but there aren't. It's too small of a school. And to transfer to a larger school, I'd get lost in the shuffle (not to mention the whole strong immunosuppressant, sitting in a classroom with 75+ other student thing--not good).
So here's where I am now: I was told that my leave time is up. I have to either register for classes next semester, when I'm physically not ready to return and seriously risk screwing up another semester and/or my GPA (a rocking 3.9), or withdraw from the school entirely and have to go through the application process all over again--which should be interesting, considering after all of the fighting, discrimination, and threats of lawsuits on my behalf, I don't know what my odds would be about returning. Ever. Or to another school, since I do have credits completed, and schools talk. I'm 3 semesters from graduation and whether I get to work in the field or not, it is a goal of mine to finish it, but to do it half assed isn't the way (re: return and tank my GPA). Or walk away now (risk closing that door), return to community, pursue an AS in chemistry (an old goal/love of mine and I'd still be going to school, making sure my brain doesn't atrophy), then hope to return to finish my BA. I just don't know. I find it grossly unfair that it is bad enough to be punished with a body that has turned against me, but to be punished by institutions for it out of ignorance makes me feel like more of an outcast. I'm not being paid for what I do. I'm paying them. I'm not asking for preferential treatment, or pity, or anything extra. I just didn't think asking to extend leave, or to be able to do the work (such as showing up/missing class) within the limits of what my body can handle was too much. Especially when I have proven for over 3 years that even when I am not in the classroom, my comprehension of the material far exceeds that of what is expected.
Almost all doctors look at the physical self. How do they make that feel better? How to fix it? If it can't be fixed, as is the case sometimes, but rather at least controlled, how do you give the patient a comfortable "quality of life?" Even the specialists I have now, as amazing as they are, are more concerned with my symptoms, the diseases, the labs--the inner, physical workings. What gets lost is just how life changing something like this can be. I had a career. I had a life. Then all of that drastically changed in just a few short months.
I have yet to find a psychiatrist (misdiagnoses there aside as well) to understand, or psychologists to understand. I found one, but I realized the reason she understood was because she herself was sick--she had to leave the practice on permanent medical leave after about 12 weeks. In her place, I saw a young woman whose solution to everything was to take at least 90 minutes a day to myself and tell everyone not just how I'm feeling, but how they're making me feel and what I think about it. (All of my doctors laughed at that one.)
Community College went well. The school and my professors--all but one or two who eventually came around--worked with me and I graduated with an extremely high GPA and 2 AA degrees, honor society, and I had at least accomplished one goal. When transfer time came to finish my Bachelor's Degree, I was playing on a whole different field and the game had changed. I was forced to withdraw from entire semesters before the administration would allow me to finish at least one class if the professor would allow it; I learned that after a decade I did not have fibromyalgia and chronic Lyme Disease, but 2 autoimmune diseases that were by then pretty bad as far as out of control and wreaking havoc on my joints and surrounding tissues forcing a medical leave; and became the lab rat for the school.
Four year schools have disability offices to help students with disabilities receive the accommodations they need and help them navigate through any problems. Essentially, these offices become the advocates for and with the students. My school, however, has no idea how to help me. Autoimmune, or "invisible" illnesses are just not something they've ever dealt with before. Physical and learning disabilities are easy. There are policies and protocols for those. There are policies and protocols for everything: absences, time off, leave, withdrawals. Everything is very black and white, wrapped up in neat little packages. Which would be great, if say, I was in a wheelchair, needed crutches, or had a severe learning disability. Or had to take time off for a severe injury or something (the maximum time allowed for leave is 1 year--I'll get to that gem in a moment). I fall into that grey area and the school has admitted that I'm the first case they have had that they do not know how to handle. I have had to take time off to adjust to treatment, get my symptoms under control (almost there, but not quite yet), but I know that, just like before, there will be flares--times when I simply will not be able to make it to class because of pain and swelling. And there are policies against that both by professors and the school that punish students for that. If there were online classes offered, that would be awesome, but there aren't. It's too small of a school. And to transfer to a larger school, I'd get lost in the shuffle (not to mention the whole strong immunosuppressant, sitting in a classroom with 75+ other student thing--not good).
So here's where I am now: I was told that my leave time is up. I have to either register for classes next semester, when I'm physically not ready to return and seriously risk screwing up another semester and/or my GPA (a rocking 3.9), or withdraw from the school entirely and have to go through the application process all over again--which should be interesting, considering after all of the fighting, discrimination, and threats of lawsuits on my behalf, I don't know what my odds would be about returning. Ever. Or to another school, since I do have credits completed, and schools talk. I'm 3 semesters from graduation and whether I get to work in the field or not, it is a goal of mine to finish it, but to do it half assed isn't the way (re: return and tank my GPA). Or walk away now (risk closing that door), return to community, pursue an AS in chemistry (an old goal/love of mine and I'd still be going to school, making sure my brain doesn't atrophy), then hope to return to finish my BA. I just don't know. I find it grossly unfair that it is bad enough to be punished with a body that has turned against me, but to be punished by institutions for it out of ignorance makes me feel like more of an outcast. I'm not being paid for what I do. I'm paying them. I'm not asking for preferential treatment, or pity, or anything extra. I just didn't think asking to extend leave, or to be able to do the work (such as showing up/missing class) within the limits of what my body can handle was too much. Especially when I have proven for over 3 years that even when I am not in the classroom, my comprehension of the material far exceeds that of what is expected.
Friday, November 9, 2012
Oh, Sandy
Early in the evening on October 29, the hybrid superstorm hurricane known as Sandy made landfall around Atlantic City, NJ. I'm about 120 miles northwest of there. In the days before, my mother and I made sure that we had everything we needed in case the power went out (which in our area does happen, considering it is a heavily wooded area that is poorly maintained by the power company) and when we lose power, we also lose heat and most importantly, running water. The radar pictures were both awesome and terrifying--800 miles across and 2,000 miles long--and the evening before captured an historic image of what was going to make Sandy such a superstorm--the powerful, energized cold front just to the west of it that was going to be absorbed into the storm. And, might I add, oh the pain as she came closer and hit!!
Then around 6pm we lost power that Monday. It had gone off twice earlier, but quickly came back on and had been flickering the rest of the day. For 11 days, we lived off of generator power. It was about 2 days before I got my first glimpses of what Sandy had done to the Jersey Shore, 4 days before we had heard from my uncle and cousins who live close to the shore, and an additional 2 before I heard from the rest of my friends. My brother? I heard about him through his ex. He still hasn't called my parents to see if they're okay. It's not like my mother wasn't almost rushed to the ER and still might end up back in the hospital or anything.
We were very lucky that we didn't suffer severe damage, but only some branches and power outages. For us, the challenge was to try to keep conditions as sanitary as possible and temperatures in the house as constant as possible. With my autoimmune diseases and powerful immunosuppressants, on a good day, stress alone causes wreaks havoc on what little immune system I have left now. My mother's immune system is also compromised because of renal failure. I seem to be lucky to only have a minor infection that I am carefully monitoring right now. My mother is a different story.
But I did learn some valuable things from all of this. I am much stronger than I thought I was. With very little sleep, I was able to keep the generator going, making sure that the most important things were taken care of around here (mom kept busy by cleaning stuff up around the house she had been putting off lately), checking with police departments' social networking pages for information, staying in touch with friends to make sure they were taken care of, keeping in touch with family, and finding a way to get through it all.
I also found it incredible that my close knit community of neighbors became closer as we took care of each other, sharing generators, gas, food, wood, information, checking in on each other, watching out for each other when vandalism and thefts started happening, and depending on who could get to what store, supplies.
What I did learn is that I need to find a way in case something like this happens again (extended power outage/stressful situation) is to try to find that balance so that I'm not putting my body into a further compromising position than it has to be. Our house was about as prepared as it could have been before my father found the bigger generator, but it took 7 or 8 days before I was able to find that center, or inner balance I needed for myself to continue to keep going. I realize that my old way of just shutting down, going into auto pilot and getting things done is not going to work--it barely worked now and it won't work in the future as my fever is rising and an infection is setting in. My body is just no able to do that anymore for any real length of time. But for now, I can't even begin to express just how thankful I am, my friends, and my family for having made it through all of it. And for those friends who were there. And I continue to pray for those still dealing with it as I try to get myself back on my feet.
Then around 6pm we lost power that Monday. It had gone off twice earlier, but quickly came back on and had been flickering the rest of the day. For 11 days, we lived off of generator power. It was about 2 days before I got my first glimpses of what Sandy had done to the Jersey Shore, 4 days before we had heard from my uncle and cousins who live close to the shore, and an additional 2 before I heard from the rest of my friends. My brother? I heard about him through his ex. He still hasn't called my parents to see if they're okay. It's not like my mother wasn't almost rushed to the ER and still might end up back in the hospital or anything.
We were very lucky that we didn't suffer severe damage, but only some branches and power outages. For us, the challenge was to try to keep conditions as sanitary as possible and temperatures in the house as constant as possible. With my autoimmune diseases and powerful immunosuppressants, on a good day, stress alone causes wreaks havoc on what little immune system I have left now. My mother's immune system is also compromised because of renal failure. I seem to be lucky to only have a minor infection that I am carefully monitoring right now. My mother is a different story.
But I did learn some valuable things from all of this. I am much stronger than I thought I was. With very little sleep, I was able to keep the generator going, making sure that the most important things were taken care of around here (mom kept busy by cleaning stuff up around the house she had been putting off lately), checking with police departments' social networking pages for information, staying in touch with friends to make sure they were taken care of, keeping in touch with family, and finding a way to get through it all.
I also found it incredible that my close knit community of neighbors became closer as we took care of each other, sharing generators, gas, food, wood, information, checking in on each other, watching out for each other when vandalism and thefts started happening, and depending on who could get to what store, supplies.
What I did learn is that I need to find a way in case something like this happens again (extended power outage/stressful situation) is to try to find that balance so that I'm not putting my body into a further compromising position than it has to be. Our house was about as prepared as it could have been before my father found the bigger generator, but it took 7 or 8 days before I was able to find that center, or inner balance I needed for myself to continue to keep going. I realize that my old way of just shutting down, going into auto pilot and getting things done is not going to work--it barely worked now and it won't work in the future as my fever is rising and an infection is setting in. My body is just no able to do that anymore for any real length of time. But for now, I can't even begin to express just how thankful I am, my friends, and my family for having made it through all of it. And for those friends who were there. And I continue to pray for those still dealing with it as I try to get myself back on my feet.
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