This past month has been stressful. Most of us have financial problems at least some point in our lives. It is one of the hardest things I find to let God take control of. My practical side takes over and tells me that numbers don't lie and we are where we are and money doesn't fall from trees. (Even though my children seem to think so.) Needless to say things have been tight. EI ran out this month. Living on a shortened budget is difficult as it is but with hockey season and tournaments galore it gets even tighter, plus we had to factor in the cost of medicine for me, which is still the amount of a car payment even after coverage. So add all those factors together and we it becomes a problem.
Anyways, I had to go to the pharmacy and fill a bunch of prescriptions for the family. $2000 worth actually before coverage. Most of which was mine. So I went there and guess what the pharmacist told me......? We hit our pharmacare deductible! NEVER have we hit that number, and with it being January I did not think that that was possible, but they do not run on the fiscal year. It starts over again in April. I did have to pay half still but the rest was covered. So for the next 3 months I don't have to pay! Yay!
Next came the fact that we were welcomed home one evening after hockey to a counter full of groceries! I mean where did that come from? (Yes the door was unlocked, but don't get any ideas because we are going to be more diligent with that.)
And that's not all. I was still wondering how we were going to pay for some upcoming tournaments without going further into the hole (seeing as we had 8 weeks of tournaments in a row), when I get a phone call from the LTD provider and they tell me I am approved and payment will come in 1-3 business days! Praise the Lord!
Thursday 31 January 2013
Friday 25 January 2013
Afraid
I realized something the past couple of nights. I go to sleep afraid. Every time I wake up in the middle of the night and when I wake up in the morning I check....check to make sure I can feel everything properly. I wake up in the middle of the night and many times my hand is numb from the way I sleep. (I think this happens more just because the circulation is having difficulties as it is.) Having said that I stay afraid for those brief moments until I start having feeling back.
The longest I have gone without relapsing is 2 and a half months. In 3 weeks I will be at that point....I don't want to go back there yet. I'm not ready.
The longest I have gone without relapsing is 2 and a half months. In 3 weeks I will be at that point....I don't want to go back there yet. I'm not ready.
Monday 21 January 2013
Blindsided by Reality
I started thinking about last week and how it's differed so much from the past two days. Yesterday I had a normal day. A bit tired....yes, but not really any more than an average person would have. Today I feel pretty good too. I even scrubbed my bathroom, which still took me an hour and I haven't touched the downstairs one, but maybe tomorrow :) I think about how happy I am to have had these days and even though they still aren't normal compared to how I felt before MS, I felt normal. What I'm trying to say is that I think I'm adjusting to my new normal of good days. Even though the good days aren't the same as they were before, they are my new normal. It's kinda like how an 80 year old adjusts to life and knows that they can't do the things they could when they were 20. They adapt.
Last week was tough. Not just because I was recouping from the weekend before but it was hard to have reality hit you square in the face...especially when I had no idea it was coming. After the weekend Monday had come and I was exhausted. Here I was hanging onto hope that everything would be okay because I had made it through the long weekend of hockey with 4.5 hours of sleep the first night and 6 hours of sleep the next 2 nights. Well I was wrong....it took me a week to recover. Things are not the way they were. That wasn't the worst of it though. The thing that took me by surprise the most was when I went to the doctor and was filling out insurance papers for me. The question came back asking when I would return back to work and he said NEVER.
Never is a hard word to hear. I mean that's what I was there for...I was there for him to fill out forms for Long Term Disability and we had already had the conversation that in all likelihood, based on my life and day to day struggles I couldn't go back to work. Hearing it on the other hand at the age of 31 was really tough. I'm not even sure if I've completely processed that yet.
The last thing that happened was only 2 days ago. Working at my son's hockey tournament I was at the silent auction table and was supposed to fill out peoples information on a piece of paper. I had to have my friend who was helping me at the time fill them out for me. However, she was gone for a couple minutes and I had no choice but to attempt it myself. I managed to write out their information as I felt them staring at me, probably wondering what was wrong. In order to write legible it took me about 30 seconds to write their name and phone number. 30 seconds may seem short but think about it. Even pretend how long it takes you to write your name and number. 10 seconds tops?? That was my first experience of actually feeling like people noticed something was wrong with me, without knowing what the problem was.
It's a new week and we will see how long these good days last. I think my record is 4 so it here goes for a couple more good days! :)
Last week was tough. Not just because I was recouping from the weekend before but it was hard to have reality hit you square in the face...especially when I had no idea it was coming. After the weekend Monday had come and I was exhausted. Here I was hanging onto hope that everything would be okay because I had made it through the long weekend of hockey with 4.5 hours of sleep the first night and 6 hours of sleep the next 2 nights. Well I was wrong....it took me a week to recover. Things are not the way they were. That wasn't the worst of it though. The thing that took me by surprise the most was when I went to the doctor and was filling out insurance papers for me. The question came back asking when I would return back to work and he said NEVER.
Never is a hard word to hear. I mean that's what I was there for...I was there for him to fill out forms for Long Term Disability and we had already had the conversation that in all likelihood, based on my life and day to day struggles I couldn't go back to work. Hearing it on the other hand at the age of 31 was really tough. I'm not even sure if I've completely processed that yet.
The last thing that happened was only 2 days ago. Working at my son's hockey tournament I was at the silent auction table and was supposed to fill out peoples information on a piece of paper. I had to have my friend who was helping me at the time fill them out for me. However, she was gone for a couple minutes and I had no choice but to attempt it myself. I managed to write out their information as I felt them staring at me, probably wondering what was wrong. In order to write legible it took me about 30 seconds to write their name and phone number. 30 seconds may seem short but think about it. Even pretend how long it takes you to write your name and number. 10 seconds tops?? That was my first experience of actually feeling like people noticed something was wrong with me, without knowing what the problem was.
It's a new week and we will see how long these good days last. I think my record is 4 so it here goes for a couple more good days! :)
Saturday 19 January 2013
New Endeavour
Technically I should be napping right now, but oh well:) I always seem to get great blogging ideas when I'm either driving or in the shower. Then when I sit down to write, I can't remember what they were. LOL
I wanted to share with you that I started a team for the MS walk in May. I have never really done anything like this before but I find it very intriguing how you all of a sudden can become an advocate for something you knew you nothing about. When something has entered your life you become much more aware and your heart has passion for that, whether it's something you are encountering on a personal level or something that you are going through because of someone else. I see sides of people I never knew existed, or it's allowed me to have conversations with those I wouldn't normally interact with. Even my kids are becoming advocates for it. The two older boys are going to start some fundraisers for in their school, and are going to join in on the walk. This is something that they will do on their own and for that I am excited. It's exciting to see your kids become passionate about something other than a video game or the latest movie. LOL So that's my "plug" for the MS walk on May 26th in Morden. If you want to join you can go to www.mswalks.ca and then search for a team using my name (Charis Parago) in case you need spelling, and the team name is Grace. You can donate using the same search tools.
I wanted to share with you that I started a team for the MS walk in May. I have never really done anything like this before but I find it very intriguing how you all of a sudden can become an advocate for something you knew you nothing about. When something has entered your life you become much more aware and your heart has passion for that, whether it's something you are encountering on a personal level or something that you are going through because of someone else. I see sides of people I never knew existed, or it's allowed me to have conversations with those I wouldn't normally interact with. Even my kids are becoming advocates for it. The two older boys are going to start some fundraisers for in their school, and are going to join in on the walk. This is something that they will do on their own and for that I am excited. It's exciting to see your kids become passionate about something other than a video game or the latest movie. LOL So that's my "plug" for the MS walk on May 26th in Morden. If you want to join you can go to www.mswalks.ca and then search for a team using my name (Charis Parago) in case you need spelling, and the team name is Grace. You can donate using the same search tools.
Wednesday 16 January 2013
Tired ...Tired of it All
I'm tired. Tired of being tired. Tired of trying. Tired of feeling guilty. Tired of being alone. Tired of trying to figure things out. Tired of being excited about a good day. Tired of trying to be happy all the time. Tired of thinking about the future and how it can only get worse and not better. Tired of holding out on hope. Tired of putting in so much effort for so little accomplishment. Tired of saying..."I'm tired!"
Monday 7 January 2013
New Year Update
The New Year has begun! The kids are back at school and quite a bit has happened. We made it through the holidays though and now it's time to take down the tree. Yes it's still up! LOL
So over the holidays I started taking my injections. I chose Copaxone because it has almost no side effects but it is a daily injection. I remember receiving the box in the mail which basically included all of the packaging like carrying cases, needle clipper, info dvd, etc. As strange as this may sound, it was hard to see that box. For one it was way more involved and bigger than what I thought. There was even a box with a key to lock your meds in if you have little kids or people who might get into it. It was just another step to saying that this is real. I remember feeling angry as I went through it's contents. However taking the actual needle when the time came didn't seem to be as disturbing. A nurse from Matlock came out and trained me on how and where to use the injections. We practiced on a special piece that was included in the package I received. Surprisingly the needle itself doesn't even hurt, but the medicine does once it's in. That first day was extremely mild and since then there are times when it hasn't faired quite as well and it hurts quite a bit or will get swollen and red, but that is still all normal. So overall this seems to be agreeing with me. What people don't know or don't understand is how this medication works. Many people ask me if I'm feeling better now, even my own doctor asked me this question:) These meds only reduce your chances of having another relapse. It DOES NOT improve your symptoms! It may help some people a bit but that is not the main reason for the drug. It reduces the relapse rate by 30% and reduces the severity of a relapse if or when you should have one. The downside is that it takes 6-9 months to get into your system and almost a year to really start working.
What does that mean for me? Right now I am on another medical leave, as I can't seem to beat this fatigue thing! I also have lasting remnants of numbness in my hands and that worsens when I over exert myself, which doesn't take much! I was having sharp shooting pains in my hands this past week and I get dizzy a bit when I'm overtired as well. The problem is consistency. There is none.
I am thankful for a doctor who understands and is extremely helpful. He knows what it can be like and understands that fatigue is a very real issue. I try to make life at home as normal for the everyone and really need to work on making use of my time when I feel up to it. Shawn and the boys have been awesome and it's a bit scary to see this as a new normal for life, but I'm sure we will adjust as we have so far.
Right now we need prayers for finances LOL I have two weeks of EI and then I need to get approved for disability through work in order to get subsidized for the rest of my medical leave. EI only covers you for 15 weeks. And for the insurance company to approve our medication. We received a $0 refund from the medication, but I am hopeful that it is just a matter of paperwork that needs to be worked out. Having said that getting approved for disability subsidy and sorting things out with the insurance company can be a timely thing, so we need to cover our finances until that is all sorted out.
Thank you all for your words of encouragement, your thoughts and your prayers! Happy New Year:)
So over the holidays I started taking my injections. I chose Copaxone because it has almost no side effects but it is a daily injection. I remember receiving the box in the mail which basically included all of the packaging like carrying cases, needle clipper, info dvd, etc. As strange as this may sound, it was hard to see that box. For one it was way more involved and bigger than what I thought. There was even a box with a key to lock your meds in if you have little kids or people who might get into it. It was just another step to saying that this is real. I remember feeling angry as I went through it's contents. However taking the actual needle when the time came didn't seem to be as disturbing. A nurse from Matlock came out and trained me on how and where to use the injections. We practiced on a special piece that was included in the package I received. Surprisingly the needle itself doesn't even hurt, but the medicine does once it's in. That first day was extremely mild and since then there are times when it hasn't faired quite as well and it hurts quite a bit or will get swollen and red, but that is still all normal. So overall this seems to be agreeing with me. What people don't know or don't understand is how this medication works. Many people ask me if I'm feeling better now, even my own doctor asked me this question:) These meds only reduce your chances of having another relapse. It DOES NOT improve your symptoms! It may help some people a bit but that is not the main reason for the drug. It reduces the relapse rate by 30% and reduces the severity of a relapse if or when you should have one. The downside is that it takes 6-9 months to get into your system and almost a year to really start working.
What does that mean for me? Right now I am on another medical leave, as I can't seem to beat this fatigue thing! I also have lasting remnants of numbness in my hands and that worsens when I over exert myself, which doesn't take much! I was having sharp shooting pains in my hands this past week and I get dizzy a bit when I'm overtired as well. The problem is consistency. There is none.
I am thankful for a doctor who understands and is extremely helpful. He knows what it can be like and understands that fatigue is a very real issue. I try to make life at home as normal for the everyone and really need to work on making use of my time when I feel up to it. Shawn and the boys have been awesome and it's a bit scary to see this as a new normal for life, but I'm sure we will adjust as we have so far.
Right now we need prayers for finances LOL I have two weeks of EI and then I need to get approved for disability through work in order to get subsidized for the rest of my medical leave. EI only covers you for 15 weeks. And for the insurance company to approve our medication. We received a $0 refund from the medication, but I am hopeful that it is just a matter of paperwork that needs to be worked out. Having said that getting approved for disability subsidy and sorting things out with the insurance company can be a timely thing, so we need to cover our finances until that is all sorted out.
Thank you all for your words of encouragement, your thoughts and your prayers! Happy New Year:)
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