Today I heard from someone from my past. Someone who wanted to talk about things in the past. Things I don't want to re-visit. Someone who hurt me terribly. I immediately felt all of the sadness and anger, worry and drama creeping in.
Today, I did something different. For once, I said no. I used to fight back, allow the problems in, worry about the most irrelevant stuff and allow myself to become an emotional basket case. Today, I took care of me.
I wrote back immediately. I stated that I needed to not have these conversations any longer. I told them they had done so much wrong but that it was no longer a part of my life. I asked them to please allow me to let it go. I explained how with my health the way it is now I have to change. I explained that I cannot afford to focus on such negative memories. I stated that for the first time in my life, I was learning to put myself first.
As I typed those words, it hit me. I meant it. I've never in my entire life allowed myself to put my feelings ahead of someone else's. I have always worried about how they would feel, how this or that would affect them and would base all of my decisions and actions on that. I often would allow myself to be miserable to ensure that someone else wouldn't need to be. I have changed and for that, I am so proud of myself.
It's okay to care about me. It's okay to say this isn't healthy for me. It's okay to say enough is enough. If someone truly cares about you, they will hear you and accept your feelings.
Don't get me wrong, this doesn't mean I don't care about others, nor does it mean it's all about me now. It just means I am finally learning to draw the line. I am learning that in order to be as healthy as I can be I need to put myself first because only then will I have enough in me to show the people I love so much how I feel.
MS is not a blessing, it is not a gift. It is teaching me though, slowly, to really decide what is important and what is not.
As small as it sounds, this person's contact was a very good thing. It forced me to stand up for myself in a way I never have. It forced me to change, instantly, just by typing an e-mail. I feel so good right now. I feel so proud.
Talk soon
Monday, June 24, 2013
Tuesday, June 18, 2013
I'm sooooo confused
I have researched and researched MS on the internet. I think I've read every site there is as well as more blogs than I ever thought existed. The only consistent thing I find is that there is currently no 'available cure'. Even as far as what kind of disease it is there seems to be arguments. Is it an auto-immune disease or is it inflammatory? Maybe it's related to a vascular issue....who knows? Really it's irrelevant for me right now as even if there is a cure, it's not something I can access. I just want to figure out the 'right' way to minimize and delay this.
This is where the real confusion begins. I have bought and read the MS Diet by Dr. Swank. It basically had me eliminate dairy and saturated fats. Which was actually a shocking amount of foods. Overall, this lifestyle change would probably be healthy for anyone. A naturopath I saw put me on an elimination diet which basically ended up in eliminating everything but rice at which point she triumphantly announced "that's it, you're allergic to rice!). Nice, no more money for you lady! I'm starving!!!!!
Other people have suggested the paleo diet for those with MS. Similar to the Swank diet, slightly less restricting...much more expensive....lot's of organic/grass fed products. Overall, one consistency is saturated fats in high quantities...primarily vegetable oils. Okay, done.
I get that diet is linked, the reality is however, that I just don't have the willpower to give up everything I enjoy. I like steak sometimes, I don't like paying $25 dollars for a teeny tiny one because it's grass fed. Once in a blue moon I feel like yogurt....not soy based (I tried it, it's gross). To top it off my favourite food in the entire whole wide world is Chicken parmigiana. Where do I start, bread crumbs/oil/mozzarella cheese.....delicious....not okay on any of the above mentioned plans.
Next problem. DMDs (disease modifying drugs). My neuro was pretty damn insistent that I start these. He felt it was absolutely necessary at this point. My naturopath (at the time) felt the exact opposite - then again, my only problem was a rice allergy. Doctors apparently get a kick back for getting new patients to start these drugs from the companies that produce them so they have a great incentive to recommend them. People say they are loaded with carcinogens and lots of stuff that will make you even sicker over time. The drug companies say they will reduce your relapses by up to 33%. To me it's kind of like an anti-aging cream. You use it faithfully your whole life to help you not look so old. You have absolutely no way of knowing what you would have looked like if you hadn't used it, so you are left to just keep forking out loads of money in good faith that they are doing something. How many relapses would I have had if I wasn't injecting daily????? Who knows for sure.
Exercise. People with MS should exercise regularly. They should not exercise to the point of exhaustion, over heating or push limits as this could trigger a pseudo-exasperation or worse, trigger a true relapse. I used to weight train. The only thing I know is to push my limits, sweat like a dog, yell, curse and be sick from it all at the end. That was exercise and it was awesome!!! I did a yoga workout a few weeks ago thinking that would be okay. I guess I shouldn't have done the intermediate/advanced because I sweat a little and sure as shit started a full out relapse a few days later. I'm not sure if they were related or coincidence so now I'm petrified to try again. The only thing left is stretching. BORING.
Ughhhh. I know I sound super negative here. I know that I have dissected every single good idea I've come across. It just seems though that for every good idea there is another study or person explaining why it's a load of crap.
As I said....soooooo confused.
This is where the real confusion begins. I have bought and read the MS Diet by Dr. Swank. It basically had me eliminate dairy and saturated fats. Which was actually a shocking amount of foods. Overall, this lifestyle change would probably be healthy for anyone. A naturopath I saw put me on an elimination diet which basically ended up in eliminating everything but rice at which point she triumphantly announced "that's it, you're allergic to rice!). Nice, no more money for you lady! I'm starving!!!!!
Other people have suggested the paleo diet for those with MS. Similar to the Swank diet, slightly less restricting...much more expensive....lot's of organic/grass fed products. Overall, one consistency is saturated fats in high quantities...primarily vegetable oils. Okay, done.
I get that diet is linked, the reality is however, that I just don't have the willpower to give up everything I enjoy. I like steak sometimes, I don't like paying $25 dollars for a teeny tiny one because it's grass fed. Once in a blue moon I feel like yogurt....not soy based (I tried it, it's gross). To top it off my favourite food in the entire whole wide world is Chicken parmigiana. Where do I start, bread crumbs/oil/mozzarella cheese.....delicious....not okay on any of the above mentioned plans.
Next problem. DMDs (disease modifying drugs). My neuro was pretty damn insistent that I start these. He felt it was absolutely necessary at this point. My naturopath (at the time) felt the exact opposite - then again, my only problem was a rice allergy. Doctors apparently get a kick back for getting new patients to start these drugs from the companies that produce them so they have a great incentive to recommend them. People say they are loaded with carcinogens and lots of stuff that will make you even sicker over time. The drug companies say they will reduce your relapses by up to 33%. To me it's kind of like an anti-aging cream. You use it faithfully your whole life to help you not look so old. You have absolutely no way of knowing what you would have looked like if you hadn't used it, so you are left to just keep forking out loads of money in good faith that they are doing something. How many relapses would I have had if I wasn't injecting daily????? Who knows for sure.
Exercise. People with MS should exercise regularly. They should not exercise to the point of exhaustion, over heating or push limits as this could trigger a pseudo-exasperation or worse, trigger a true relapse. I used to weight train. The only thing I know is to push my limits, sweat like a dog, yell, curse and be sick from it all at the end. That was exercise and it was awesome!!! I did a yoga workout a few weeks ago thinking that would be okay. I guess I shouldn't have done the intermediate/advanced because I sweat a little and sure as shit started a full out relapse a few days later. I'm not sure if they were related or coincidence so now I'm petrified to try again. The only thing left is stretching. BORING.
Ughhhh. I know I sound super negative here. I know that I have dissected every single good idea I've come across. It just seems though that for every good idea there is another study or person explaining why it's a load of crap.
As I said....soooooo confused.
Tuesday, June 11, 2013
Hey you!!
Hi there, yeah you, the one reading this entry. I know that over 250 people have popped in and glanced at one or two things I've posted. Probably 90% of you ended up here completely by accident and hit the big old back button on your browser immediately. I do, however, think that at least a couple of people actually read through it.
So this is for those people. I am asking you to leave a comment. If you have anything to share at all that you think might help even the slightest, I'm all ears. I'm still looking for recipe ideas, thoughts on copaxone, advice about exercise and even a little advice on what to do when I'm feeling really down and alone with all of this, which I am right now.
Just knowing someone, somewhere, gets it...well, that would be great to hear.
Thank for taking the time, it means more than you know,
Talk soon
So this is for those people. I am asking you to leave a comment. If you have anything to share at all that you think might help even the slightest, I'm all ears. I'm still looking for recipe ideas, thoughts on copaxone, advice about exercise and even a little advice on what to do when I'm feeling really down and alone with all of this, which I am right now.
Just knowing someone, somewhere, gets it...well, that would be great to hear.
Thank for taking the time, it means more than you know,
Talk soon
Sunday, June 9, 2013
Is copaxone making me worse?
I know that it can take 6 months or more for your body to begin to respond to Copaxone. I know that it isn't going to make me better and that the best case scenario is that it will reduce my relapses by 33%. What I didn't expect though, was to get worse.
I started injecting daily at the beginning of March. I had a relapse in April and am now deep into yet another one. When I started not feeling well 2 years ago I would be "off" for a couple of weeks and then almost normal for maybe 3 months. My doctor said I was having more relapses than average. He said I needed to start a DMD right away. What I don't completely understand is what this means. I went into a pretty bad relapse in February, started Copaxone, and then had 2 more only 5 weeks apart. It seems like since this all started I'm just getting worse and worse and since starting the drugs they are barely separated by the mandatory month in between.
What does it mean if my relapses are coming more and more often. They seem to include a new symptom with each one too, which is also very frightening. I read that it is normal, on average, to have 1 relapse per year, at this rate I could have about 9 this year alone. Does this mean I am going to get worse quickly? Does this mean I will probably lose more mobility sooner than average? Does this mean I will transition to secondary anytime?
I look for answers to this but they are vague. What I have read is that every disease course is different for everyone so there's no clear way to know. I have seen studies that show that the more relapses you have in the first 2 years after diagnosis the sooner you will have more advanced disability but then it always follows with 'this is not the case for everyone'.
I want another MRI, the last one on my brain was last August. At that point it showed one new lesion since 6 months before that (I have over 14 total). I had a spinal MRI in November which showed a couple of lesions there as well. With having had 5 relapses since last August I wonder how many new lesions are there? Apparently you can develop lesions even without a marked attack so it could be a lot. Would this add to atrophy? He already said that was measurable in me and was another reason to start DMD sooner than later.
As I type this I see that I already know half the answers here. I know it's not great news that I'm having so many relapses. I know that I won't know how this is going to progress until it actually happens. What I don't know is if starting these drugs has actually triggered something that is making things even worse? Does anyone know if this is possible? I would really appreciate any comments or feedback from people who are taking or have taken Copaxone on this one.
Talk soon
I started injecting daily at the beginning of March. I had a relapse in April and am now deep into yet another one. When I started not feeling well 2 years ago I would be "off" for a couple of weeks and then almost normal for maybe 3 months. My doctor said I was having more relapses than average. He said I needed to start a DMD right away. What I don't completely understand is what this means. I went into a pretty bad relapse in February, started Copaxone, and then had 2 more only 5 weeks apart. It seems like since this all started I'm just getting worse and worse and since starting the drugs they are barely separated by the mandatory month in between.
What does it mean if my relapses are coming more and more often. They seem to include a new symptom with each one too, which is also very frightening. I read that it is normal, on average, to have 1 relapse per year, at this rate I could have about 9 this year alone. Does this mean I am going to get worse quickly? Does this mean I will probably lose more mobility sooner than average? Does this mean I will transition to secondary anytime?
I look for answers to this but they are vague. What I have read is that every disease course is different for everyone so there's no clear way to know. I have seen studies that show that the more relapses you have in the first 2 years after diagnosis the sooner you will have more advanced disability but then it always follows with 'this is not the case for everyone'.
I want another MRI, the last one on my brain was last August. At that point it showed one new lesion since 6 months before that (I have over 14 total). I had a spinal MRI in November which showed a couple of lesions there as well. With having had 5 relapses since last August I wonder how many new lesions are there? Apparently you can develop lesions even without a marked attack so it could be a lot. Would this add to atrophy? He already said that was measurable in me and was another reason to start DMD sooner than later.
As I type this I see that I already know half the answers here. I know it's not great news that I'm having so many relapses. I know that I won't know how this is going to progress until it actually happens. What I don't know is if starting these drugs has actually triggered something that is making things even worse? Does anyone know if this is possible? I would really appreciate any comments or feedback from people who are taking or have taken Copaxone on this one.
Talk soon
Friday, May 31, 2013
I'm just too tired
I'm so tired, just exhausted. I have nothing left. This is fatigue? 'Fatigue'...it sounds not so bad, not so big....it doesn't seem like the right word to describe this. I feel like I could just lie down forever and ever. I cleaned half of one of our bathrooms and my right arm instantly weighed 3 times more than before I started. I walked upstairs to get something and my thighs literally burned as if I had just spent 20 minutes running on the treadmill. I opened the fridge to figure out dinner, stared at it for a minute, shut the door and sat down.
I have the slightest hint of energy mid morning and unfortunately work gets all of that. I make all kinds of plans and commitments inside my head that I will do after work. They just never happen. Hardly anything gets done anymore and if it does, I'm completely finished for the rest of the day.
This just gets worse and worse. I'm not having a relapse, so is this just me now? Is this my new normal? Does this get better ever again????
I hope so because the level of guilt that is coming with this ability to do nothing is almost unbearable. I'm letting everyone down. My family and friends deserve better than this 'me'. I deserve better than this 'me'.
UPDATE: I was starting a new relapse, just didn't realize it. Thank God this was not my new norm....back to just normal fatigue for me.
I have the slightest hint of energy mid morning and unfortunately work gets all of that. I make all kinds of plans and commitments inside my head that I will do after work. They just never happen. Hardly anything gets done anymore and if it does, I'm completely finished for the rest of the day.
This just gets worse and worse. I'm not having a relapse, so is this just me now? Is this my new normal? Does this get better ever again????
I hope so because the level of guilt that is coming with this ability to do nothing is almost unbearable. I'm letting everyone down. My family and friends deserve better than this 'me'. I deserve better than this 'me'.
UPDATE: I was starting a new relapse, just didn't realize it. Thank God this was not my new norm....back to just normal fatigue for me.
Thursday, May 23, 2013
Paperwork, paperwork, paperwork (and a nice dose of disclosure)
Through my employer I am entitled to a critical illness benefit. There is a handful of diseases that this benefit applies to and this is one of them. I'm not sure how I feel about that to be honest. I mean, this being on the list of diseases that suck so bad you deserve a payout just adds to the reality that this is not a small thing.
It is a descent lump sum payment. It is meant to be there for me when I need to purchase assistive devices, have modifications made to my home, need a caregiver or can't work for a while. Again, all scary thoughts for me. I suppose I should feel fortunate to have this kind of insurance as I'm sure there are many who don't.
I have to apply for this now because you have a limited time from diagnosis to apply or you cannot receive the benefit, I believe it's 12 months. This meant I had to tell my employer. I had been hoping to put this off for quite a while longer. If I wait though, I'm out of luck. It seems silly to me that with a critical illness that isn't going anywhere they put such a short claim allowance period (I guess it gets them out of quite a few payouts).
I contacted my HR department and they said that they could not initiate the claim without disclosure of the reason for it, I had been hoping I would be able to deal with the insurance company directly. Follow this call with a very personal and terrifying conversation with my regional director (boss) and the process has begun. Another very big life change. I have worked hard to reach where I am and I had planned to continue to climb within the company. I can't help but worry about how this has likely changed senior leaderships ideas of my future growth with them.
Anyhow, what's done is done. So onto the paperwork! HOLY PAPERWORK. I received two separate sets of claim forms. The first twelve pages long and the second eight. I have to have my GP fill out four of these pages, the rest are special just for me. The questions request incredible detail and specifics. Now, please bare in mind, I can't remember who I just spoke to on the phone five minutes ago half the time, yet I'm supposed to know the 'exact' date of which my symptoms began. How in God's name would someone with MS know the first day their symptoms began? Ummm, could have been when the pleasant bouts of irregularity started 6 years ago, could have been when I felt so tired I was sure I had mono 4 years ago, could have been when I started tripping up escalators and missing steps which has been on and off for years. I don't have the slightest clue on what exact date this started, so I've decided to go with when I started getting dizzy in 2011 and just copy my doctors work. Honestly, the people who generate these forms must not know much about MS.
Then, they want copies of all relevant tests and results. They want dates that you have visited the emergency room and what doctor treated you there. They want your date of diagnosis. They want to know what feels like a gazillion pages of everything, which would be just fine with me if I could only remember all the answers.
Oh well, like I mentioned earlier, I'm going to copy my doctor's homework as much as I can. I have had them print out two years of my medical files and tests so I can sift through them for answers and I've left a request with the hospital for any documents they may have. I do believe this is going to take a while.
Hopefully I get it done by my deadline next January, LOL.
Talk soon
It is a descent lump sum payment. It is meant to be there for me when I need to purchase assistive devices, have modifications made to my home, need a caregiver or can't work for a while. Again, all scary thoughts for me. I suppose I should feel fortunate to have this kind of insurance as I'm sure there are many who don't.
I have to apply for this now because you have a limited time from diagnosis to apply or you cannot receive the benefit, I believe it's 12 months. This meant I had to tell my employer. I had been hoping to put this off for quite a while longer. If I wait though, I'm out of luck. It seems silly to me that with a critical illness that isn't going anywhere they put such a short claim allowance period (I guess it gets them out of quite a few payouts).
I contacted my HR department and they said that they could not initiate the claim without disclosure of the reason for it, I had been hoping I would be able to deal with the insurance company directly. Follow this call with a very personal and terrifying conversation with my regional director (boss) and the process has begun. Another very big life change. I have worked hard to reach where I am and I had planned to continue to climb within the company. I can't help but worry about how this has likely changed senior leaderships ideas of my future growth with them.
Anyhow, what's done is done. So onto the paperwork! HOLY PAPERWORK. I received two separate sets of claim forms. The first twelve pages long and the second eight. I have to have my GP fill out four of these pages, the rest are special just for me. The questions request incredible detail and specifics. Now, please bare in mind, I can't remember who I just spoke to on the phone five minutes ago half the time, yet I'm supposed to know the 'exact' date of which my symptoms began. How in God's name would someone with MS know the first day their symptoms began? Ummm, could have been when the pleasant bouts of irregularity started 6 years ago, could have been when I felt so tired I was sure I had mono 4 years ago, could have been when I started tripping up escalators and missing steps which has been on and off for years. I don't have the slightest clue on what exact date this started, so I've decided to go with when I started getting dizzy in 2011 and just copy my doctors work. Honestly, the people who generate these forms must not know much about MS.
Then, they want copies of all relevant tests and results. They want dates that you have visited the emergency room and what doctor treated you there. They want your date of diagnosis. They want to know what feels like a gazillion pages of everything, which would be just fine with me if I could only remember all the answers.
Oh well, like I mentioned earlier, I'm going to copy my doctor's homework as much as I can. I have had them print out two years of my medical files and tests so I can sift through them for answers and I've left a request with the hospital for any documents they may have. I do believe this is going to take a while.
Hopefully I get it done by my deadline next January, LOL.
Talk soon
Saturday, May 18, 2013
Apparently anything goes
All kinds of funky things are happening recently. Not the kind of things that throw me into relapse panic (it hasn't been a full month since my last), just funky things. It seems lately like every odd, quirky, interesting, "well that was strange", thing that happens to me boils down to MS.
It never ceases to amaze me how this disease can affect every part of my body, yet the only thing actually wrong with me (test wise) is my brain... and a bit of my spine. I always figured if my arm hurts, something's wrong with my arm. If my sight is blurred, something is wrong with my eye. You get the point. Apparently, that is no longer the case at all.
New strange stuff...
I have this spot on the side of my upper right thigh that gets hot. Really, really, hot! Not to the touch though (I had my boyfriend feel it) but it is definitely freakin' hot! It last a short time and goes away. This started a few days ago and happens quite a bit in a day.
I heard, yes, heard, a vibration in my right ear. It got louder and louder and louder to the point that I did enter the realm of panic. I could do nothing for the few minutes it lasted. Then, it just stopped. Just like that. Weird.
Restless legs. Okay, these are driving me absolutely bat shit. When I'm driving I have to kick off the shoe that is on the leg I'm not using and actually kick that leg constantly and at one point even had it crossed over the one that was trying to operate a vehicle. The one driving just had to suck it up so I didn't kill anyone. I have a 2 hour commute most days and this has become hell. Sitting on a couch can only happen for 20 minutes or so max before I go bonkers trying to ignore the crawling feeling shooting up and down both legs and have to jump up and walk it off.
And finally, my absolute favourite...I have spiders crawling on my forehead. I'm serious here. Okay, no, there aren't really spiders. Man, I'm telling you though, I swear they're there sometimes. I'm watching tv, minding my own business and along they come. They crawl out from my hairline and down onto my forehead and then start to party. I jump, brush the imaginary buggers away, and back they come. Please someone explain this one to me.
The thing that get's me about all these things is they are all related to MS. I even googled sensation of spiders on skin and low and behold, there it was, commonly experienced by people with MS. Get out of here!!!! The ear thing, apparently not so common, but it's got to do with a muscle spasing out by my ear drum and "sometimes experienced by those suffering from multiple sclerosis". Hot spots...MS. Restless legs...MS.
I try not to look up too much info anymore on this disease because I have had enough with scaring myself but I do look up what I experience. I do this because I need to know I haven't lost all my marbles...yet. I am still shocked every time to find out that, yes, that applies to MS.
I guess it makes sense, if you have a disease that messes up how your brain sends messages to your body then it really could make it feel anything. I read where one woman said it felt like someone was tearing off her toenails. Her neuro said she just had to remember that they "weren't really". Comforting? Not really. I hope no one tears off my toenails anytime soon, I'd rather deal with the spiders.
It never ceases to amaze me how this disease can affect every part of my body, yet the only thing actually wrong with me (test wise) is my brain... and a bit of my spine. I always figured if my arm hurts, something's wrong with my arm. If my sight is blurred, something is wrong with my eye. You get the point. Apparently, that is no longer the case at all.
New strange stuff...
I have this spot on the side of my upper right thigh that gets hot. Really, really, hot! Not to the touch though (I had my boyfriend feel it) but it is definitely freakin' hot! It last a short time and goes away. This started a few days ago and happens quite a bit in a day.
I heard, yes, heard, a vibration in my right ear. It got louder and louder and louder to the point that I did enter the realm of panic. I could do nothing for the few minutes it lasted. Then, it just stopped. Just like that. Weird.
Restless legs. Okay, these are driving me absolutely bat shit. When I'm driving I have to kick off the shoe that is on the leg I'm not using and actually kick that leg constantly and at one point even had it crossed over the one that was trying to operate a vehicle. The one driving just had to suck it up so I didn't kill anyone. I have a 2 hour commute most days and this has become hell. Sitting on a couch can only happen for 20 minutes or so max before I go bonkers trying to ignore the crawling feeling shooting up and down both legs and have to jump up and walk it off.
And finally, my absolute favourite...I have spiders crawling on my forehead. I'm serious here. Okay, no, there aren't really spiders. Man, I'm telling you though, I swear they're there sometimes. I'm watching tv, minding my own business and along they come. They crawl out from my hairline and down onto my forehead and then start to party. I jump, brush the imaginary buggers away, and back they come. Please someone explain this one to me.
The thing that get's me about all these things is they are all related to MS. I even googled sensation of spiders on skin and low and behold, there it was, commonly experienced by people with MS. Get out of here!!!! The ear thing, apparently not so common, but it's got to do with a muscle spasing out by my ear drum and "sometimes experienced by those suffering from multiple sclerosis". Hot spots...MS. Restless legs...MS.
I try not to look up too much info anymore on this disease because I have had enough with scaring myself but I do look up what I experience. I do this because I need to know I haven't lost all my marbles...yet. I am still shocked every time to find out that, yes, that applies to MS.
I guess it makes sense, if you have a disease that messes up how your brain sends messages to your body then it really could make it feel anything. I read where one woman said it felt like someone was tearing off her toenails. Her neuro said she just had to remember that they "weren't really". Comforting? Not really. I hope no one tears off my toenails anytime soon, I'd rather deal with the spiders.
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