I know that once I feel better I'm going to leave this blog as a side thought and proceed through life until I need it again. I've got to stop doing that. I need to make the most out of this blog as a way to keep track of things, such as: what sets off a replase, how am I feeling, is there anything important about the study of this disease I should share.
I originally started this blog with the hopes that it would be a way for those seeking information to find it. Thus far, I believe I've been rather unsuccessful. The primary focus of this blog has turned into a sounding board for my complaints about doctors, insurance, employers, etc. Which, in a way, can be helpful to those who want to understand the difficulties some of us face. But alas, readers, I feel in many ways I've abandoned what I initially set out to do, to be a source of information, to record everything that's important both personally and medically. So, from here on out, that's my main priority. I will attempt to write everyday, even on days where the sun is shining and I'm out living life. I think these are the most crucial of days to document anyway, to further show that there can be light at the end of the tunnel.
Now on to the good stuff. The prednisone is making me feel like my eyes are glassy and everything is a bit blurry. I can't recall if I've ever had this side effect before, so I'm willing to take comments from other MS sufferers out there who have experienced this or know someone who has. It's making seeing difficult overall because everything is just so darn blurry.
The good news is that earlier I experienced a wee bit of double vision, which means something is working. If I cover my right eye and attempt to peer out with my left I can almost make out the shape of my hand but I have yet to see any defined details.
I called around today and found out information about applying for state medical insurance as well as food stamps to help me out until I can look for a job. Jan, Chrissey's mom, is bringing me home the applications because said eye complications are getting in the way of seeing the app online.
At their insistance I've begun to take Vitamin D and Vitamin B12 daily in order to get the vitamins I need according to MS recommendations. I know the B12 is supposed to help in the healing process of the optical neuritis. I can't say either way because I've been on the solu-medrol and that usually complicates research.
I've put on about five pounds since this process began last Thursday, which for anyone who has been on solu-medrol this is a small miracle. Usually at this point I'm bloated, retaining water and all swollen. My pants feel slightly tighter than usual so I know I'm retaining some fluids. I'm also incredibly thirsty thanks to the heartburn the solu-medrol and prednisone makes me have. I think it's one of the reasons I slept so terribly last night, the heartburn just would not quit. At this point I know adjusting my diet won't do anything for it so I just have to suffer until my body adjusts.
My mood is better today. Yesterday I had a bit of roid rage followed by a complete breakdown of tears and sobbing. I hate to get to that point but it was an overall emotionally draining day and I know, again, the meds don't help. In the end, it all worked out like Chrissey said it would and now I've got my oral meds and I'm a happy young woman. Each day is another step towards recovery.
Since this flare-up hit me so suddenly as I arrived, I really haven't had the chance to reflect on my life back in Syracuse or even had the chance to explore my new surroundings. I have to investigate how I feel about leaving my husband and my old life behind, but I think that can wait. I have the feeling it's going to be a difficult situation to think about but I'm not blind (haha) to the fact that I know I made the right decision. I'm craving the chance to get out and really see things. I've been taking brief trips with Chrissey when we have the opportunity and being so blind I just feel like I'm missing everything. I'm excited to get to the point where I will be able to drive again. I think that's the part that makes me the most miserable, the not being able to drive bit. I love to drive, it's where I go to think and get away and right now I'm getting some serious cabin fever.
All in all, despite everything, today is turning out to be a good day. Even when you're sick you're entitled to those moments where everything is calm and at peace. I like that.
Tuesday, January 25, 2011
Monday, January 24, 2011
Sometimes being a gnat in one's ear really pays off.
I hated that I let me emotions take control of my situation earlier. I try to be a bit more reserved with them, especially over the phone, but the whole situation was even to much for me to handle.
There's one thing I've learned about life while having this disease. No one else will ever be your advocate, you have to fulfill that role. So, I annoyed them and I called and I left messages and I left messages with other companies and I even called the answering service. That's what did the trick.
I have my meds.. and I'm happy. I can take it in the morning and not be up all night like I more than likely will be tonight. So, things worked out in the end. I spilt a little anger, shed a few tears but I'll just blame that on the steroids and not me feeling sorry for myself. Problem solved.
There's one thing I've learned about life while having this disease. No one else will ever be your advocate, you have to fulfill that role. So, I annoyed them and I called and I left messages and I left messages with other companies and I even called the answering service. That's what did the trick.
I have my meds.. and I'm happy. I can take it in the morning and not be up all night like I more than likely will be tonight. So, things worked out in the end. I spilt a little anger, shed a few tears but I'll just blame that on the steroids and not me feeling sorry for myself. Problem solved.
Roid rage. Today blog, you'll be the place that I rant.
I'm frustrated. Frustrated with not being able to see and frustrated with doctor's who just don't give a rats ass. It's so incredibly dangerous not to taper off of with the prednisone. What's worse, is that the idiot receptionist told me I could come and pick the script up! This is after the several times I told her that I was in another state!
So let me start from a comfortable point just so I don't muddle up the story with my anger and frustration. I received my first round of IV steroids from the nurse on Thursday of last week. She went over with me why I need to follow up with the prednisone and taper off (mostly my body will crash and I'm at risk for a super bad relapse like I had before, which includes hospital beds and paralyzation). This was after hours in New York and I knew that I would have to call first thing in the morning to get the ball rolling on Friday. So I did, I woke up early, called the Shuk's office and explained to the receptionist (*insert eye-roll here*) that I needed the meds called in and since I was relying on someone else to take me to the pharmacy (because I'm flippin' blind!) I needed it done before the end of the day. So we go on Saturday, thinking, oh, they should be there by now. But alas, nothing. No call, no nothing. So I call the answering service and they put a call through to Dr. Shukri. He calls me back and pretty much tells me there's nothing I can do but call back on Monday and talk to Mary (his nurse).
So I did. I called back. Did I get Mary? Nope, I get the idiot receptionist again. She says she may be able to call it in for me. So I give her some time and she calls me back while I'm in the loo and offers to let me come and pick the prescription up (*begins to bang head on table and keyboard*). This is the same girl I've been telling that I'm stuck in another state, blind and cannot just pick it up. I explain it to her again and she says she'll take care of it for me. Playing the waiting game again I call bi-mart. Still nothing. I begin my last round of steroids (which is taking forever today because of how fast my blood is pumping) and call the home infusion line and let them know I'll be removing it today. I tell her the situation with the prednisone (or lack thereof) and she offers to call their office and try to speak with someone. She calls, and you guessed it, they are closed! Unbelievable. She did fax something over to them so it's my hope that they'll get it while they close up and finally take care of it. Don't they know you never stress a person with MS out like this? It's mostly fear driving it all, fear that I won't get the prednisone and I'll crash. It's a real fear that anyone in my situation could have, especially when they aren't getting the level of treatment they need to survive. I understand I'm in another state, that I'm not a priority, but I haven't had the chance to even unpack anything out here before this menace of a disease hit me.
I didn't ask for this. I never wanted to be sick and have to deal with doctors and nurses and IV lines and idiot receptionists. I understand it's my cross to bear through life but man, is it really asking to much to have people do what they are supposed to do? To relay priority messages? To do their job to ensure the health and care of their patients?
I'm frustrated and my heart is beginning to speed up from the steroids. I just need to breath. I can't help but thinking that if Taft was still there this would never have happened. He doesn't drop the ball. I wish there were more PA's out there like him. He's my superhero.
So let me start from a comfortable point just so I don't muddle up the story with my anger and frustration. I received my first round of IV steroids from the nurse on Thursday of last week. She went over with me why I need to follow up with the prednisone and taper off (mostly my body will crash and I'm at risk for a super bad relapse like I had before, which includes hospital beds and paralyzation). This was after hours in New York and I knew that I would have to call first thing in the morning to get the ball rolling on Friday. So I did, I woke up early, called the Shuk's office and explained to the receptionist (*insert eye-roll here*) that I needed the meds called in and since I was relying on someone else to take me to the pharmacy (because I'm flippin' blind!) I needed it done before the end of the day. So we go on Saturday, thinking, oh, they should be there by now. But alas, nothing. No call, no nothing. So I call the answering service and they put a call through to Dr. Shukri. He calls me back and pretty much tells me there's nothing I can do but call back on Monday and talk to Mary (his nurse).
So I did. I called back. Did I get Mary? Nope, I get the idiot receptionist again. She says she may be able to call it in for me. So I give her some time and she calls me back while I'm in the loo and offers to let me come and pick the prescription up (*begins to bang head on table and keyboard*). This is the same girl I've been telling that I'm stuck in another state, blind and cannot just pick it up. I explain it to her again and she says she'll take care of it for me. Playing the waiting game again I call bi-mart. Still nothing. I begin my last round of steroids (which is taking forever today because of how fast my blood is pumping) and call the home infusion line and let them know I'll be removing it today. I tell her the situation with the prednisone (or lack thereof) and she offers to call their office and try to speak with someone. She calls, and you guessed it, they are closed! Unbelievable. She did fax something over to them so it's my hope that they'll get it while they close up and finally take care of it. Don't they know you never stress a person with MS out like this? It's mostly fear driving it all, fear that I won't get the prednisone and I'll crash. It's a real fear that anyone in my situation could have, especially when they aren't getting the level of treatment they need to survive. I understand I'm in another state, that I'm not a priority, but I haven't had the chance to even unpack anything out here before this menace of a disease hit me.
I didn't ask for this. I never wanted to be sick and have to deal with doctors and nurses and IV lines and idiot receptionists. I understand it's my cross to bear through life but man, is it really asking to much to have people do what they are supposed to do? To relay priority messages? To do their job to ensure the health and care of their patients?
I'm frustrated and my heart is beginning to speed up from the steroids. I just need to breath. I can't help but thinking that if Taft was still there this would never have happened. He doesn't drop the ball. I wish there were more PA's out there like him. He's my superhero.
Saturday, January 22, 2011
My thoughts are not empty and hollow atm..
I'm a little scared that I haven't had any sign that my vision may recover. What makes it worse is when I look on the internet and read all the stats about the recovery chances at this level of progression. I know.. that someday I'll probably be completely blind, since with each flare-up I manage to get optical neuritis, but I'm not ready for it yet. Please, don't let it be now. I'm so fearful that I'll never be able to see out of my left eye again and that I won't be able to drive.
Chrissey would say I worry too much, but I think in this matter, I have a right to worry. What can I do if I go blind? How depressed I would be if I could never gaze on beautiful works of art or some cinematic piece? I know it happens to people, but after 27 years of seeing, I don' think I could cope. It would more than likely mean flushing a lot of my dreams down the toilet. There's one dream I don't think I could ever give up though. I think, despite it all, even if I was blind and unable to function with my own limbs, I'd still try to go for my dream of being a disability lawyer. I want to help people like me. I want to help others inflicted with MS so that they may have the chance to live a better life than I ever could have! I want to make sure that these people are treated fairly in the workplace, unlike I was by certain higher ups that I won't mention here. No one should ever feel like they aren't good enough because they were born with a disease like MS.
I think the real problem lies in the fact that someone knows at least one person with MS. They then say, oh yeah, my Great Aunt Shirley had MS and lived a long, healthy life. Hunny, I'm not your Great Aunt Shirley. The thing with MS is it affects people differently. You can't group all MS sufferers into one large category and expect the definition to fit. It doesn't work like that. For me, I have to keep my immune system weak because the moment it gets too strong I know I'm in for a relapse. Therefore, I catch every germ you bring to the office. I catch every bug that goes around. I'm a connoisseur of sickness! Mention what's going around lately and more than likely I've had it, far worse than you will ever get it.
But, I don't think I'm jaded. Although, I will say, I do shrug it off a bit as if it were my lot in life that I have to face. But beneath that shrug, I'm terrified. Terrified of where I will be in five years, in ten years and if I'll make it another twenty years. I know that if I ever find myself stuck in a bed, using a respiratory to breathe and just existing I will not allow myself to continue that way. Never. I don't think that's anyway to live. That's one of the reasons I moved to Oregon is because I know it's a state that allows assisted suicide for those who are capable of doing it. I want to be able to have that option! The option of choosing to live my life how I want to, not how the government says I am to live.
I didn't mean to go into such a dark place with my thoughts, but this is what I think about when I'm given a moment alone. A moment of self reflection like I had so much of when I was on the road. Sure, I want to be like everyone else and have the freewill to do anything I want, but unfortunately, I'm not able to at the moment. The thought brings tears to my eyes that I'm so bound by this disease. When will I ever get my chance of freedom? I thought moving to Portland was my chance at discovering myself and my freewill but how quickly that all can change in a day or two.
Bah, perhaps I'm just being foolish or throwing my own pity party. It's not like I mean to, but this just happens to be the place where my mind wanders too. I also desperately want to wash my hair and take a shower, but with this IV in my arm, it's not the easiest of chores. Therefore, I'll stick with being scummy!
Scummily yours,
Desiree
Chrissey would say I worry too much, but I think in this matter, I have a right to worry. What can I do if I go blind? How depressed I would be if I could never gaze on beautiful works of art or some cinematic piece? I know it happens to people, but after 27 years of seeing, I don' think I could cope. It would more than likely mean flushing a lot of my dreams down the toilet. There's one dream I don't think I could ever give up though. I think, despite it all, even if I was blind and unable to function with my own limbs, I'd still try to go for my dream of being a disability lawyer. I want to help people like me. I want to help others inflicted with MS so that they may have the chance to live a better life than I ever could have! I want to make sure that these people are treated fairly in the workplace, unlike I was by certain higher ups that I won't mention here. No one should ever feel like they aren't good enough because they were born with a disease like MS.
I think the real problem lies in the fact that someone knows at least one person with MS. They then say, oh yeah, my Great Aunt Shirley had MS and lived a long, healthy life. Hunny, I'm not your Great Aunt Shirley. The thing with MS is it affects people differently. You can't group all MS sufferers into one large category and expect the definition to fit. It doesn't work like that. For me, I have to keep my immune system weak because the moment it gets too strong I know I'm in for a relapse. Therefore, I catch every germ you bring to the office. I catch every bug that goes around. I'm a connoisseur of sickness! Mention what's going around lately and more than likely I've had it, far worse than you will ever get it.
But, I don't think I'm jaded. Although, I will say, I do shrug it off a bit as if it were my lot in life that I have to face. But beneath that shrug, I'm terrified. Terrified of where I will be in five years, in ten years and if I'll make it another twenty years. I know that if I ever find myself stuck in a bed, using a respiratory to breathe and just existing I will not allow myself to continue that way. Never. I don't think that's anyway to live. That's one of the reasons I moved to Oregon is because I know it's a state that allows assisted suicide for those who are capable of doing it. I want to be able to have that option! The option of choosing to live my life how I want to, not how the government says I am to live.
I didn't mean to go into such a dark place with my thoughts, but this is what I think about when I'm given a moment alone. A moment of self reflection like I had so much of when I was on the road. Sure, I want to be like everyone else and have the freewill to do anything I want, but unfortunately, I'm not able to at the moment. The thought brings tears to my eyes that I'm so bound by this disease. When will I ever get my chance of freedom? I thought moving to Portland was my chance at discovering myself and my freewill but how quickly that all can change in a day or two.
Bah, perhaps I'm just being foolish or throwing my own pity party. It's not like I mean to, but this just happens to be the place where my mind wanders too. I also desperately want to wash my hair and take a shower, but with this IV in my arm, it's not the easiest of chores. Therefore, I'll stick with being scummy!
Scummily yours,
Desiree
Quick post to pass the time
I'm writing this from my blackberry so it won't be a lengthy blog post, merely an update. I had a brief scare with my IV site and had to have a nurse come out and take a look at it. It was just a wee bit of blood from bumping it so I didn't have to have a new IV put in. Still no improvement in my lack of vision, except I've fooled myself into believing I can see lights, just a glimmer, but that's positive. I had to reschedule a few interviews for next week and I'm hopeful it won't damage my job prospects. I'm putting a lot of faith into my vision being restored but I've begun to work on a backup plan in the case it does not. If I remain blind in my left eye, I believe I will have no trouble getting disability. In fact, Chrissey's mom gave me the number of an agency that may be able to help me get food stamps and medical insurance until I get a position somewhere. Anywho, right now we're at the dentist while Chrissey gets a tooth extracted and after that we're off to look at houses. Good times ahead!
Friday, January 21, 2011
Mmm.. salted peanuts means happy kiddo!
I'm so munching on salted peanuts at the moment. Does a body good. Or at least a body filled with solu-medrol. Day two of my infusion went without an problems, which I'm very happy about.
I'm still completely blind in my left eye, yet, I can't complain because I feel still relatively good. I feel like a could dance a jigg!
It's rough having not had an IV infusion in a while because you forget all the nasty side effects. With a healthy dose of steroids you get: the sweats, salt and sugar cravings, bloating, break-outs, insomnia, restlessness and hunger. It's annoying but in order to get my vision back I'll do anything at this point.
I'm excited for tonight, it's a calming night of pizza and movies with people I love. I'll try to write more later, but my life just isn't that fascinating at the moment.
I'm still completely blind in my left eye, yet, I can't complain because I feel still relatively good. I feel like a could dance a jigg!
It's rough having not had an IV infusion in a while because you forget all the nasty side effects. With a healthy dose of steroids you get: the sweats, salt and sugar cravings, bloating, break-outs, insomnia, restlessness and hunger. It's annoying but in order to get my vision back I'll do anything at this point.
I'm excited for tonight, it's a calming night of pizza and movies with people I love. I'll try to write more later, but my life just isn't that fascinating at the moment.
Thursday, January 20, 2011
A slight hiccup in an otherwise unbumpy road.
It's frustrating. I have the potential to have everything I've ever wanted but yet as soon as I begin to walk down a new path MS has to rear its ugly head and remind me that I'm sick. At least, so far, this has been a mild relapse, it just serves to remind me that I can do anything IF I remember that I'm sick. I consider myself a strong woman with strong dreams. Heck, the whole thing that started this blindness in my left eye was the completion of a 3300+ mile trip across the country solo, in seven days! A HUGE task for any MS sufferer to be taking, especially alone where the complications of MS can set in at any moment. Sure, I felt fatigued but not once did I feel sick. Hell, even now I feel fit as a fiddle, well with the exception of being completely blind in my left eye. But not once did I think this was going to happen especially when my life was turning out right for a change.
So I have to reflect on my life and make some decisions. Some serious, difficult and hard decisions that will have an impact on the rest of my life. This little hiccup has reminded me that I'm not invincible, that I'm not cautious enough. It sucks that I have to bandaid up everything in my life just so I don't cause myself to get hurt or worse. Normal people walk through life and take their bumps and bruises, why can't I? Now, I don't feel sorry for myself, it's just when this sort of thing happens you begin to question a lot in your life. Am I making the right decision, for me? Am I doing what's in MY best interest? So long I've put others before myself. But wasn't the whole point of this journey to regain what I'd lost, to become dependent on myself versus taking care of a spouse, a house, etc. I was supposed to regain my freedom from being the worrier, the stressed out budget manager. I came here to find myself and what did I find? The real me, the MS sufferer who needs to learn how to take care of herself. I need to take my meds, I need to eat healthy, I need to exercise and most importantly, I have to live each day for me. No one else. Just me... and maybe my cat.
If there's one thing I've learned on this journey is that it's okay to be alone, it's okay to sit down at restaurants and eat alone. It''s okay to go into stores and shop just for oneself. It's okay to lose yourself in your thoughts. And although I was alone for just a short while, I was never truly alone. I had those who loved me, who checked up on me and guided me when needed. I now have a support system here who all unanimously agree that I should check into getting disability. That I would be better off without the stress of working full-time and that I would get the proper insurance I need as well as the potential of my schooling paid for. Then, when completed, I could practice law on a part-time basis and help others who have MS get on disability and fight for their rights. I could truly do my dream job of being an advocate for people with MS and all sorts of disabilities! I could give my life a real sense of meaning. But even if I don't, I'm still okay with just being me.
So I have to reflect on my life and make some decisions. Some serious, difficult and hard decisions that will have an impact on the rest of my life. This little hiccup has reminded me that I'm not invincible, that I'm not cautious enough. It sucks that I have to bandaid up everything in my life just so I don't cause myself to get hurt or worse. Normal people walk through life and take their bumps and bruises, why can't I? Now, I don't feel sorry for myself, it's just when this sort of thing happens you begin to question a lot in your life. Am I making the right decision, for me? Am I doing what's in MY best interest? So long I've put others before myself. But wasn't the whole point of this journey to regain what I'd lost, to become dependent on myself versus taking care of a spouse, a house, etc. I was supposed to regain my freedom from being the worrier, the stressed out budget manager. I came here to find myself and what did I find? The real me, the MS sufferer who needs to learn how to take care of herself. I need to take my meds, I need to eat healthy, I need to exercise and most importantly, I have to live each day for me. No one else. Just me... and maybe my cat.
If there's one thing I've learned on this journey is that it's okay to be alone, it's okay to sit down at restaurants and eat alone. It''s okay to go into stores and shop just for oneself. It's okay to lose yourself in your thoughts. And although I was alone for just a short while, I was never truly alone. I had those who loved me, who checked up on me and guided me when needed. I now have a support system here who all unanimously agree that I should check into getting disability. That I would be better off without the stress of working full-time and that I would get the proper insurance I need as well as the potential of my schooling paid for. Then, when completed, I could practice law on a part-time basis and help others who have MS get on disability and fight for their rights. I could truly do my dream job of being an advocate for people with MS and all sorts of disabilities! I could give my life a real sense of meaning. But even if I don't, I'm still okay with just being me.
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