Tonight was awful. I lost my shit completely and now I'm sitting here, once again, wondering what the hell is wrong with me.
This is how it went. 10 year old spills milk, step-dad pulls paper towel out of my hand as if I'm too stupid to clean it up and goes to do it. This pisses me off and I make a comment. He says "I'm just being a parent". I respond "I was fully capable and you just took it". Mood change instantly. 10 year old makes smart ass comment to step-dad. Step dad yells at 10 year old for talking rudely. Not just one sentence though. He goes at him about respect until tears form. I believe this attack is because I pissed off step dad. I jump in and tell him to back off...enough. He says "yeah? you try dealing with him all day", enter my smart ass comment "I would but I'm busy working all day to pay the bills around here". Full out fight now.
Remember, this is at the dinner table, with 3 kids. THIS is NOT who we are. THIS is NOT our family. At least it didn't used to be. I call him a 200 lb. 6 foot 2 bully. He leaves the room mumbling about my newfound level of crazy. I continue to call him a jerk from the kitchen.
Then it hits, and hard. The 10 year old points out that 13 year old step-daughter is crying. Reality check big time. I go to her and say I'm so sorry. I'm so sorry I yelled like that. It's too late though. It's now a memory. A terrible memory I made for her. I'm sure all she wants right now is her mom. Not her crazy ass step mom.
So I ask again, what's wrong with me???? When did I become this person. This monster that screams at the dinner table? When did my spouse become so angry.....he never yells, like NEVER.
I just don't know what to do anymore. The tension in this household is through the roof and it seems like me and my partner don't even like each other lately. I'm not basing that on this one spat. It's been weeks of nasty under breath comments and quick snapping about silly things.
I want to stop being this person. I want to say I'll never yell again. I'll handle this better. I don't even believe myself though, so how could I expect them to? I will do everything I can though to be damn sure I never let myself make them cry again. I never want my children or step-children to be scared or sad with their own parents.
Wow, things are so messed up. So terribly messed up.
I only write this here because I don't know any one who reads this and if judgement is passed on me than so be it. I needed to vent though, I had to get this out because I feel like I'm falling apart. I try so hard to be positive, to be hopeful, to be happy. I can't make it real though lately.
I think all of this change is just too hard for the family. I'm sure tomorrow will be better, I know it will. Tonight though, is bad.
Showing posts with label change. Show all posts
Showing posts with label change. Show all posts
Saturday, July 13, 2013
Monday, June 24, 2013
A proud moment
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
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
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 3, 2013
Clearing customs just got a lot more interesting
This week was my first business trip with my new travel companion...Copaxone. Bringing these syringes with you on a plane requires some pre-work. First, you need a letter from your doctor stating you must travel with this drug, second, you need a prescription label from the pharmacy, third, you need to have the card on the travel case also signed by your doctor and filled out with pharmacy info. If you have all of this, things will be a breeze right? Wrong.
Flying out of Canada into the states went seamlessly. I presented the medication, explained why I had it, let them inspect it, provided the letter, went through the metal detector and moved on to my gate. Flying out of the states back to Canada was a whole different ball game.
First, you have to stand in a completely separate line. The one that's marked for families, liquids, wheelchairs and medications. My co-workers do not know yet that I have MS nor do I want to share it, so this required some interesting excuses and downright avoidance as I separated from the pack. Then, I wait in the longest line ever. I wait, and wait, and wait. I start getting the BBM's. "where are you?", "have you been arrested? :p", "LMAO, what the hell are you doing?". I let them know they are hilarious and they could go ahead to our gate, already creating the excuses (lies) I would feel the need to make up for the line, delay, etc.
My turn. I take off my shoes, take off my sweater, take out my laptop, phones, meds. Place everything in the bins minus the copaxone (it's not supposed to go through the x-ray apparently). I hand the copaxone to the customs officer. Let the fun begin! I get to go through the super cool body scanner first, I pass. Then I wait while they analyze the one syringe I have left. They put it in something that literally makes a rooster sound. I'm not kidding. Apparently this means I AM OFFICIALLY A THREAT TO HOMELAND SECURITY! Now I am important enough for 3 customs officials. The one tells me my medication has 'alarmed' and they will need to check everything.
This is when I see my worst nightmare. One co-worker, who thought he was being the only nice one, waiting for me 20 feet away, watching everything. CRAP!!!!
They take me to the side. I have a choice, I can be patted down here or taken to a separate room. "Let's just do this", I say, I am NOT having this guy wondering what's happening as I'm escorted away. I am groped and patted almost everywhere by a female officer while standing, get this, "arms out like an airplane". This is for sure a new pic on my co-workers I-phone. My laptop is swabbed, my phones are swabbed and my shoes are swabbed. Then I am swabbed. "Clear, clear, clear, clear". They finally give me my shoes back, thank God, because I was barefoot on an airport floor, ewwww. Then I have to re-pack everything I had strategically originally packed in my carry on, which was more than it could handle in the first place. This, by the way, is a lot harder then you think when your hands are shaking uncontrollably and your brain has temporarily frozen.
When all was said and done, they thought that would be the appropriate time to ask why I need this medication. I answered "because I have MS". Hearing myself say those words, going through the embarrassment of this screening and realizing that I was eventually going to have to tell someone at work, was a burning reminder that this is true. This is my life now. Not one day seems to go by anymore that I don't have to accept that everything....everything has changed. Everything, has gotten harder.
Flying out of Canada into the states went seamlessly. I presented the medication, explained why I had it, let them inspect it, provided the letter, went through the metal detector and moved on to my gate. Flying out of the states back to Canada was a whole different ball game.
First, you have to stand in a completely separate line. The one that's marked for families, liquids, wheelchairs and medications. My co-workers do not know yet that I have MS nor do I want to share it, so this required some interesting excuses and downright avoidance as I separated from the pack. Then, I wait in the longest line ever. I wait, and wait, and wait. I start getting the BBM's. "where are you?", "have you been arrested? :p", "LMAO, what the hell are you doing?". I let them know they are hilarious and they could go ahead to our gate, already creating the excuses (lies) I would feel the need to make up for the line, delay, etc.
My turn. I take off my shoes, take off my sweater, take out my laptop, phones, meds. Place everything in the bins minus the copaxone (it's not supposed to go through the x-ray apparently). I hand the copaxone to the customs officer. Let the fun begin! I get to go through the super cool body scanner first, I pass. Then I wait while they analyze the one syringe I have left. They put it in something that literally makes a rooster sound. I'm not kidding. Apparently this means I AM OFFICIALLY A THREAT TO HOMELAND SECURITY! Now I am important enough for 3 customs officials. The one tells me my medication has 'alarmed' and they will need to check everything.
This is when I see my worst nightmare. One co-worker, who thought he was being the only nice one, waiting for me 20 feet away, watching everything. CRAP!!!!
They take me to the side. I have a choice, I can be patted down here or taken to a separate room. "Let's just do this", I say, I am NOT having this guy wondering what's happening as I'm escorted away. I am groped and patted almost everywhere by a female officer while standing, get this, "arms out like an airplane". This is for sure a new pic on my co-workers I-phone. My laptop is swabbed, my phones are swabbed and my shoes are swabbed. Then I am swabbed. "Clear, clear, clear, clear". They finally give me my shoes back, thank God, because I was barefoot on an airport floor, ewwww. Then I have to re-pack everything I had strategically originally packed in my carry on, which was more than it could handle in the first place. This, by the way, is a lot harder then you think when your hands are shaking uncontrollably and your brain has temporarily frozen.
When all was said and done, they thought that would be the appropriate time to ask why I need this medication. I answered "because I have MS". Hearing myself say those words, going through the embarrassment of this screening and realizing that I was eventually going to have to tell someone at work, was a burning reminder that this is true. This is my life now. Not one day seems to go by anymore that I don't have to accept that everything....everything has changed. Everything, has gotten harder.
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