It's that time again!!! Time for the Energy for Life Walkathon to raise awareness of Mitochondrial Disease and raise money for research for a cure!
This year I am one of 2 co-chairs planning and organizing the walk. No pressure or anything.
Last year I was under the understanding that the team and the individual that raised the most money would be recognized in some way. Evidently I was wrong. BUT since I am helping plan the walk this year, there WILL be recognition of the team and the individual who raises the most money.
Sooooo.... I need your help!!! Last year was a huge success. But we can do so much better!
This year I have 2 goals...
1. To raise more money as a team and as an individual than I did last year.
2. To raise the most money as a team and as an individual than anyone else participating in the walk.
Can you help???
If you would like to join Team Mito*GONE*Driacs and walk with us or be a virtual "walker", please click on the link below and sign up. Then, start getting those pledges!!! It's never too early to start fundraising.
Team page for the Mito*Gone*Driacs
If you would like to donate, please click the bottom of the picture below where it says "click here to donate".
You can also start your own team by going to the main KC walk page here and clicking "Register" on the left side of the screen.
If you would like to volunteer for the walk and either help with planning or running the walk the day of, please email us at EnergyforLifeWalkKC@gmail.com
I will be updating with more information as the walk gets closer.
Thanks!!!!!
Click Here to Donate
Tuesday, June 5, 2012
Sunday, June 3, 2012
Hobbies, businesses, and other fun things to keep me busy
Over the course of the last two years I have had to find things to do to keep me busy. At first I kept very busy playing computer games on facebook - farmville, mafia wars, frontierville, and whatever other "ville"s I could find. Of course, at that time I found no need to find permanent hobbies or other things to keep me busy from the couch or bed because as far as I was concerned, I was going to get better. It was just a temporary situation.
As time went on and I was not getting better, I was getting worse, as well as receiving the diagnosis of an incurable and untreatable disease, I knew I needed to find other things to do to keep myself busy. Facebook games were just not cutting it anymore. I needed a hobby... or ten. Well, I have done just that.
In fact, I have decided to turn a couple of my hobbies into businesses. Whether or not they will be successful is a different story. Successful has a different meaning in this instance, though. I would just like to have enough business to support my hobby, not enough to make a living (although that would be nice).
The first hobby/business I have started is making hair bows. I originally started making hair bows because my youngest daughter, 4 years old at the time, wanted to grow out her bangs (okay, I wanted her to do so also because I thought it would look better). Well, there was no way I was going to do that unless she kept her hair out of her beautiful blue eyes and face. So, I called a friend of mine who makes hair bows for her daughters to see if she could make my daughter a few. Unfortunately, she said she was too busy at the time. So, I thought, how hard could it be.
Well, it turns out, it's not too difficult at all and I actually had fun doing it. After making a bunch of them for my daughter (in which she has now lost half of), I decided to make a few to try to sell. Turns out, they were a big hit. I sold all of the bows I made fairly quickly. So, I ended up spending quite a bit of time, money, and energy on making hair bows and I still do. Here's a few examples...
"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net
"The cure for Mito is living life." - Amanda Perrotta
As time went on and I was not getting better, I was getting worse, as well as receiving the diagnosis of an incurable and untreatable disease, I knew I needed to find other things to do to keep myself busy. Facebook games were just not cutting it anymore. I needed a hobby... or ten. Well, I have done just that.
In fact, I have decided to turn a couple of my hobbies into businesses. Whether or not they will be successful is a different story. Successful has a different meaning in this instance, though. I would just like to have enough business to support my hobby, not enough to make a living (although that would be nice).
The first hobby/business I have started is making hair bows. I originally started making hair bows because my youngest daughter, 4 years old at the time, wanted to grow out her bangs (okay, I wanted her to do so also because I thought it would look better). Well, there was no way I was going to do that unless she kept her hair out of her beautiful blue eyes and face. So, I called a friend of mine who makes hair bows for her daughters to see if she could make my daughter a few. Unfortunately, she said she was too busy at the time. So, I thought, how hard could it be.
Well, it turns out, it's not too difficult at all and I actually had fun doing it. After making a bunch of them for my daughter (in which she has now lost half of), I decided to make a few to try to sell. Turns out, they were a big hit. I sold all of the bows I made fairly quickly. So, I ended up spending quite a bit of time, money, and energy on making hair bows and I still do. Here's a few examples...
Then, a short while later, I came across a woman on Facebook who makes jewelry. A lot of the stuff she makes is for mito awareness. I bought a couple of her items when I realized, again, "I can do that!" So I did. That is now one of my favorite things to do. Here's some of my work...
I have a friend working on a website for me to sell my jewelry. I'll be giving part of the proceeds to mitochondrial disease charities. It will be under the name www.dkjewelryanddesigns.com. It's not up yet, though, so don't go yet. I will definitely be letting everyone know.
Last, but not least, I have started making cakes. I made one for my 13 year old's birthday last November. I got so many compliments and I had so much fun doing it, I decided to try it again. I made a beautiful cake for my best friend/cousin's surprise 40th birthday party. Once again, it turned out great and I received a lot of compliments on both the looks and the taste. And, again, I loved doing it. Lastly, I made some cupcake toppers for my cousin's daughter's birthday. I have put pictures of all of those things below.
I am now trying to turn any and all of these hobbies into businesses. I am excitedly waiting the opening of my website to sell my jewelry and hair bows. I will also be creating a website for my cake making/decorating business. That one, however will be created by me using a program that offers a free website for small businesses for a year. If you're interested in it yourself, go to http://www.intuit.com/free-website-builder/.
I started a website through that program for my jewelry and hair bows, but it will completed by a friend of a friend who's starting his own website building company. He can then use my site in his portfolio. Plus, since I'm going to be donating a portion of the proceeds from the sales of my jewelry to Mitochondrial Disease charities, he can write it off on his taxes. :-)
If you, or anyone you know, is interested in any of the things I mentioned above, please comment here and let me know what you're interested in and I'll let you know how to get it. Or, you can also find me on facebook where I post pictures of all of my available jewelry and hair bows for you to purchase. Robin's Facebook page
That is half of what I do in my spare time. I will post again with the stuff I do that will not make me money and is pretty much just time killers. I will also post as soon as my 2 websites are up and running.
Watch a video of me designing one of my cake Here
"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net
"The cure for Mito is living life." - Amanda Perrotta
Saturday, June 2, 2012
My Screw Up
I screwed up today.
At about noon my 13 y/o daughter had a dance performance. I woke up a little after 9am and we needed to leave around 11:30. We planned on leaving around 11:15am. That way it guaranteed we would be out of here by 11:30. Most people would think that 2 hours and 15 minutes is more than enough time. However, for someone with mito, rushing is not an option. I had to take a shower with my younger daughter as well as start IV fluids.
In addition to that, I needed to eat breakfast. Oh, but that's where I went wrong. I completely and totally forgot to eat breakfast.
When I first woke up I had my wonderful husband bring me a cup of coffee like he does most weekends. I usually drink my coffee for a short time before I then ask him to bring me some breakfast. This morning, however, I completely forgot. I was too busy thinking about the need to shower, what time we needed to leave, how long I needed to get ready, don't forget to start my fluids, interrupted by the non-stop talking 5 year old, etc. etc.
As I got ready my tremulousness and overheating with excessive sweating got worse and worse. I just kept thinking that I was dehydrated and I had too much coffee. So I continued to get ready while shaking like crazy and trying to stay dry, though not successfully, all the while wondering why my body would not settle down. At one point in time my husband even asked me what we were going to do about lunch since we would be there right at the lunch hour. I asked him to fix sandwiches for everyone. And despite this entire conversation about lunch, It still didn't pop into my head that I hadn't eaten anything yet.
My husband finally said, "Did you ever eat breakfast?" before I realized, after some thought, that I had not eaten anything at all. No wonder I was so shaky and sweaty!!! I quickly ate some of the sandwich I was going to take for lunch, but I think it was too late. Since I hadn't eaten I also hadn't taken my pills. So here I am, trying to take my pills and eat something just minutes before we have to leave and I have to exert a lot of energy... more so than I already had.
Well, I think it was way too late. Luckily I did okay long enough to watch my daughter perform. Which was so cool to watch, by the way. I think she needs to get into dance. However, very shortly after her performance I went downhill... fast. My hot flashes started again. My head and all of my extremities felt very heavy. I was sweating again... bad.
We quickly left the carnival where the performance was and my husband took me home. On our way home we stopped to get a chocolate shake because I had started feeling like I needed sustenance but solid food would not work. However, by the time we got home just a short 5 minutes later, I was so nauseous that even a shake was not going to go down well. I went straight to bed, threw a blanket over me, and didn't move for about 45 minutes. If I did, I just knew the vomiting was going to start.
Luckily as the day went on I slowly started to feel better. Laying flat in an air conditioned house and having IV fluids going eventually got me back to a level playing field. However, I learned my mistake. Slow down, think about what you're doing, and always remember to eat!!!
At about noon my 13 y/o daughter had a dance performance. I woke up a little after 9am and we needed to leave around 11:30. We planned on leaving around 11:15am. That way it guaranteed we would be out of here by 11:30. Most people would think that 2 hours and 15 minutes is more than enough time. However, for someone with mito, rushing is not an option. I had to take a shower with my younger daughter as well as start IV fluids.
In addition to that, I needed to eat breakfast. Oh, but that's where I went wrong. I completely and totally forgot to eat breakfast.
When I first woke up I had my wonderful husband bring me a cup of coffee like he does most weekends. I usually drink my coffee for a short time before I then ask him to bring me some breakfast. This morning, however, I completely forgot. I was too busy thinking about the need to shower, what time we needed to leave, how long I needed to get ready, don't forget to start my fluids, interrupted by the non-stop talking 5 year old, etc. etc.
As I got ready my tremulousness and overheating with excessive sweating got worse and worse. I just kept thinking that I was dehydrated and I had too much coffee. So I continued to get ready while shaking like crazy and trying to stay dry, though not successfully, all the while wondering why my body would not settle down. At one point in time my husband even asked me what we were going to do about lunch since we would be there right at the lunch hour. I asked him to fix sandwiches for everyone. And despite this entire conversation about lunch, It still didn't pop into my head that I hadn't eaten anything yet.
My husband finally said, "Did you ever eat breakfast?" before I realized, after some thought, that I had not eaten anything at all. No wonder I was so shaky and sweaty!!! I quickly ate some of the sandwich I was going to take for lunch, but I think it was too late. Since I hadn't eaten I also hadn't taken my pills. So here I am, trying to take my pills and eat something just minutes before we have to leave and I have to exert a lot of energy... more so than I already had.
Well, I think it was way too late. Luckily I did okay long enough to watch my daughter perform. Which was so cool to watch, by the way. I think she needs to get into dance. However, very shortly after her performance I went downhill... fast. My hot flashes started again. My head and all of my extremities felt very heavy. I was sweating again... bad.
We quickly left the carnival where the performance was and my husband took me home. On our way home we stopped to get a chocolate shake because I had started feeling like I needed sustenance but solid food would not work. However, by the time we got home just a short 5 minutes later, I was so nauseous that even a shake was not going to go down well. I went straight to bed, threw a blanket over me, and didn't move for about 45 minutes. If I did, I just knew the vomiting was going to start.
Luckily as the day went on I slowly started to feel better. Laying flat in an air conditioned house and having IV fluids going eventually got me back to a level playing field. However, I learned my mistake. Slow down, think about what you're doing, and always remember to eat!!!
 |
| That's me!!! |
And... as I will try to do all the time from now on... here are my favorite quotes. Most of the time it will be the same couple of quotes. However, I may switch it up from time to time based on my post.
"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net
"The cure for Mito is living life." - Amanda Perrotta
And last, but certainly not least...
To learn more about mitochondrial disease and how it affects people, please go to my page titled "What is Mitochondrial Disease" or go to www.umdf.org
Friday, June 1, 2012
The Q & A of Helping
Maybe I should say "The Q of Helping" instead of "The Q & A of Helping" because I have more questions than I have answers.
I suppose you're wondering what I mean by "helping". Well, let me explain...
I have now been sick for 2 years and 4 months. For the first 6 months of being sick most people didn't realize how sick I was. I also wasn't near as disabled as I am now. Well, then again, yes, I was. I think I just didn't admit it to myself or anyone else. Once people realized how serious my condition is (which took some people over a year and there's others who still seem like they don't have a clue), they started helping us out here and there. I can't say there was an overwhelming flood of support. It's never been anything close to that. However, my parents starting cluing others in to the fact that we could use some help with meals, finances, laundry, house cleaning, running errands, etc. I finally started setting my stubbornness aside after being sick for almost a year and asking for help myself. That took a LOT out of me.
So for about a year and a half now my wonderful husband and I have been asking for help from family and friends with various things here and there. We receive more help than we ask for because both of us have difficulty asking. Luckily we had people, primarily my parents, offer to help here and there when we didn't ask for it.
After awhile the offers for help slowly went away. We have also slowly decreased the amount that we ask for help. So here's where the questions come in....
Since this is a chronic, life-long illness, are we supposed to figure out how to live without the help and support of our family and friends?
If so, how long do I have to be sick before I'm supposed to know how to do it without support?
What makes 6 months ago or a year ago different from now?
If I'm just as sick now (or in a couple of months since this thing can be such a roller coaster) as I was a year ago, why is there a ton of support from family and friends then but not now?
Am I bad for still asking for help?
Was I supposed to stop asking at some point in time? Once again.. when? When do the etiquette books say is the appropriate time to start taking care of yourself and your family when your seriously ill? Oh, wait, that's probably not in the etiquette books, is it?
On another note... Why do I have to feel so bad about asking for help?
How many times should I hear "no" before I stop asking that particular person? If they're never able to help, should I still ask even if I know what the answer is going to be?
I don't WANT to ask for help! I HATE asking for help. That's the last thing I want to do. I would MUCH rather just do it myself, but I CAN'T!!! I'd much rather have my husband do it, but he can't do everything all the time. There are some things that we could not ask for help with because it's not a necessity. However, I want the best for my kids, even if I am sick. Doesn't everyone? Why do my kids have to sacrifice because I'M sick. They're not the ones who're sick.
Sometimes I just want to give up... like now. I'm tired of asking for help when I know people don't want to do it. I'm tired of having to ask people over and over again to only hear that they're too busy or can't help for whatever other reason when some of the time I know it's just because they don't want to.
My husband and I have both said that we just want to say "screw it!" and do everything on our own. If that means me taking care of my 5 year old daughter by myself when I'm not feeling well, then so be it. The one and only reason why we don't want to do that is because that means our daughters would have to deal with the consequences. (less or no extra-curricular activities, taking care of me more often, etc.)
In the end, we won't stop asking for help because we want the best for our daughters. However, it sure would make life easier if we didn't have to.
I suppose you're wondering what I mean by "helping". Well, let me explain...
I have now been sick for 2 years and 4 months. For the first 6 months of being sick most people didn't realize how sick I was. I also wasn't near as disabled as I am now. Well, then again, yes, I was. I think I just didn't admit it to myself or anyone else. Once people realized how serious my condition is (which took some people over a year and there's others who still seem like they don't have a clue), they started helping us out here and there. I can't say there was an overwhelming flood of support. It's never been anything close to that. However, my parents starting cluing others in to the fact that we could use some help with meals, finances, laundry, house cleaning, running errands, etc. I finally started setting my stubbornness aside after being sick for almost a year and asking for help myself. That took a LOT out of me.
So for about a year and a half now my wonderful husband and I have been asking for help from family and friends with various things here and there. We receive more help than we ask for because both of us have difficulty asking. Luckily we had people, primarily my parents, offer to help here and there when we didn't ask for it.
After awhile the offers for help slowly went away. We have also slowly decreased the amount that we ask for help. So here's where the questions come in....
Since this is a chronic, life-long illness, are we supposed to figure out how to live without the help and support of our family and friends?
If so, how long do I have to be sick before I'm supposed to know how to do it without support?
What makes 6 months ago or a year ago different from now?
If I'm just as sick now (or in a couple of months since this thing can be such a roller coaster) as I was a year ago, why is there a ton of support from family and friends then but not now?
Am I bad for still asking for help?
Was I supposed to stop asking at some point in time? Once again.. when? When do the etiquette books say is the appropriate time to start taking care of yourself and your family when your seriously ill? Oh, wait, that's probably not in the etiquette books, is it?
On another note... Why do I have to feel so bad about asking for help?
How many times should I hear "no" before I stop asking that particular person? If they're never able to help, should I still ask even if I know what the answer is going to be?
I don't WANT to ask for help! I HATE asking for help. That's the last thing I want to do. I would MUCH rather just do it myself, but I CAN'T!!! I'd much rather have my husband do it, but he can't do everything all the time. There are some things that we could not ask for help with because it's not a necessity. However, I want the best for my kids, even if I am sick. Doesn't everyone? Why do my kids have to sacrifice because I'M sick. They're not the ones who're sick.
Sometimes I just want to give up... like now. I'm tired of asking for help when I know people don't want to do it. I'm tired of having to ask people over and over again to only hear that they're too busy or can't help for whatever other reason when some of the time I know it's just because they don't want to.
My husband and I have both said that we just want to say "screw it!" and do everything on our own. If that means me taking care of my 5 year old daughter by myself when I'm not feeling well, then so be it. The one and only reason why we don't want to do that is because that means our daughters would have to deal with the consequences. (less or no extra-curricular activities, taking care of me more often, etc.)
In the end, we won't stop asking for help because we want the best for our daughters. However, it sure would make life easier if we didn't have to.
Friday, May 18, 2012
Support through this challenging journey
Just as the physical part of this disease is a roller coaster, so is the mental/emotional aspect.
I hate it that everyone thinks that the cure all for the mental/emotional hardships caused by serious/chronic illness is having a positive attitude. I am always hearing "keep a positive attitude!" Or, even better, "I have a friend who's mom's brother's daughter's cousin has terminal cancer but she's keeping a positive attitude." Well, that's great. I'm glad for your friend's mom's brother's daughter's cousin. However, that's not me. I'm not usually a glass half full kind of person. I know that's not the way everyone thinks I should be, but they're not me. I'm me. I am living my life. I'm the one dealing with the shit that comes along with Mitochondrial Disease, chronic illness, and chronic pain.
I'm happy for those people out there who can be positive even when dealing with illness. Everyone's different. You know, I started to type reasons why Sarah Smith might be positive when I'm not. However, I'm not going to go there. It is what it is. Everyone's different. Everyone's experience is different. Someone else might deal well with a similar situation. However, it's just that, similar. Not the same. I may have the same disease as someone else who's being positive about their situation, but that doesn't mean we're in the same situation. A teenager may be able to have a more positive attitude because they haven't lived as much of their life or they don't have to feel guilty for not being there for their kids. Okay, I said I wasn't going to go there, but I did. Dammit.
It all comes down to, I am who I am and I'm doing the best I can with what I've got.
Despite all of this, as you can kind of tell by my post Insights and Revelations, I have had more of a positive attitude recently. Maybe I wouldn't describe it as a positive attitude as much as just moving on and living my life. Or maybe it's just the lack of depression. That's a plus.
One thing that I don't think I discussed in that post is the realization that I'm in this alone. A lot of people might read that and say, "no you're not!". However, in the long run, yes, I am. Even if I'm not, I have to think of it that way. For the past 2 years I have relied on family and friends to help me get through this, despite always being such an independent person throughout my life. I thought I needed those people to help me get through this. Well, I may need people to help me get through this but I can't rely on it.
Not only did I feel like I needed the support and help but I also almost expected it. I have just thought, at times, that because I was sick and going through such a horrible, life changing, event, I should get help from the people who love me... my family and my husbands' and even some friends. However, this expectation has caused me a lot of mental anguish because I did not get what I expected. As I have been very grateful for the help I/we've received, I have also been very upset by the help that we haven't received. I have needed to change my thought process. I have to be thankful for the help we receive and realize that I can't make people help and/or care. (I know some people say they care even though they don't do jack to show it and to them I say "prove it." Seeing us once or twice a year at family events does not show that you care.)
I've discussed the effects people have had on me throughout my disease numerous times on this blog. Every time I do I find that I can't really explain why people have such a profound effect on me... positive or negative.
Well, yesterday I was perusing the web and came across a website called "Friends of Jaclyn". Jaclyn is a young girl who was diagnosed with a malignant brain tumor. The Northwestern University's Women's Lacrosse team "adopted" Jaclyn as an honorary member (she also played Lacrosse before she got sick). It had such a profound affect on Jaclyn that her parents created this foundation to get other college teams to "adopt" children dealing with severe illnesses.
I thought this was such a great idea. There was one statement that really stood out to me...
"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net
That statement explains why I need the love and support of friends and family so desperately and why, when I haven't received it, it has bothered me so much. Another statement made on their website is, "Jaclyn's relationship with the players - her adopted sisters - had a positive effect on her happiness and health."
People don't realize how much of an effect the love and support of others can have on a person, especially someone with a life altering illness. And especially someone like me who has always loved being around people and helping people.
I am trying my hardest to adapt to this new life of mine and to adapt to living it without help. That's easier said than done. The help and visits have diminished again recently. It's not the help I need. It's not the help I miss. It obviously makes a difference in our lives if we have others helping us with the kids, chores, errands, and finances and we can really use that help sometimes. However, we have been figuring out how to do it on our own. We can't rely on others the rest of our lives.
But the one thing that helps me far more than doing chores or running errands for us is the comfort of knowing that I'm not going through this alone. Having people to talk to. Having a distraction from the pain, fatigue, nausea, etc. etc.
Nothing cheers me up more than being able to visit with friends and/or family and knowing that they're here for me. Whenever the "help", which includes people coming over just to visit, diminishes, I notice myself loosing hope. I notice myself getting depressed over having to deal with this disease that has drastically changed my life. I think about all the things I am missing out on. I start thinking about the future or lack there of.
So for anyone wondering why I have bitched about people not being there for me, read the quote from Jaclyn's family again and hopefully you'll understand. Needing support while going through a debilitating disease is a lot different from needing support while going through other difficult times in your life. In most cases, those times will pass (divorce, loss of a job, etc.). This will not pass. If it does, it'll be because I've passed.
"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net
(As a reminder... I am not speaking to any one specific person (or 2 or 3). I am just speaking in general. So if you read this post and think I'm talking about you specifically, I guess maybe you should give some thought as to why you feel that way because I wasn't thinking of anyone in particular.)
I hate it that everyone thinks that the cure all for the mental/emotional hardships caused by serious/chronic illness is having a positive attitude. I am always hearing "keep a positive attitude!" Or, even better, "I have a friend who's mom's brother's daughter's cousin has terminal cancer but she's keeping a positive attitude." Well, that's great. I'm glad for your friend's mom's brother's daughter's cousin. However, that's not me. I'm not usually a glass half full kind of person. I know that's not the way everyone thinks I should be, but they're not me. I'm me. I am living my life. I'm the one dealing with the shit that comes along with Mitochondrial Disease, chronic illness, and chronic pain.
I'm happy for those people out there who can be positive even when dealing with illness. Everyone's different. You know, I started to type reasons why Sarah Smith might be positive when I'm not. However, I'm not going to go there. It is what it is. Everyone's different. Everyone's experience is different. Someone else might deal well with a similar situation. However, it's just that, similar. Not the same. I may have the same disease as someone else who's being positive about their situation, but that doesn't mean we're in the same situation. A teenager may be able to have a more positive attitude because they haven't lived as much of their life or they don't have to feel guilty for not being there for their kids. Okay, I said I wasn't going to go there, but I did. Dammit.
It all comes down to, I am who I am and I'm doing the best I can with what I've got.
Despite all of this, as you can kind of tell by my post Insights and Revelations, I have had more of a positive attitude recently. Maybe I wouldn't describe it as a positive attitude as much as just moving on and living my life. Or maybe it's just the lack of depression. That's a plus.
One thing that I don't think I discussed in that post is the realization that I'm in this alone. A lot of people might read that and say, "no you're not!". However, in the long run, yes, I am. Even if I'm not, I have to think of it that way. For the past 2 years I have relied on family and friends to help me get through this, despite always being such an independent person throughout my life. I thought I needed those people to help me get through this. Well, I may need people to help me get through this but I can't rely on it.
Not only did I feel like I needed the support and help but I also almost expected it. I have just thought, at times, that because I was sick and going through such a horrible, life changing, event, I should get help from the people who love me... my family and my husbands' and even some friends. However, this expectation has caused me a lot of mental anguish because I did not get what I expected. As I have been very grateful for the help I/we've received, I have also been very upset by the help that we haven't received. I have needed to change my thought process. I have to be thankful for the help we receive and realize that I can't make people help and/or care. (I know some people say they care even though they don't do jack to show it and to them I say "prove it." Seeing us once or twice a year at family events does not show that you care.)
I've discussed the effects people have had on me throughout my disease numerous times on this blog. Every time I do I find that I can't really explain why people have such a profound effect on me... positive or negative.
Well, yesterday I was perusing the web and came across a website called "Friends of Jaclyn". Jaclyn is a young girl who was diagnosed with a malignant brain tumor. The Northwestern University's Women's Lacrosse team "adopted" Jaclyn as an honorary member (she also played Lacrosse before she got sick). It had such a profound affect on Jaclyn that her parents created this foundation to get other college teams to "adopt" children dealing with severe illnesses.
I thought this was such a great idea. There was one statement that really stood out to me...
"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net
That statement explains why I need the love and support of friends and family so desperately and why, when I haven't received it, it has bothered me so much. Another statement made on their website is, "Jaclyn's relationship with the players - her adopted sisters - had a positive effect on her happiness and health."
People don't realize how much of an effect the love and support of others can have on a person, especially someone with a life altering illness. And especially someone like me who has always loved being around people and helping people.
I am trying my hardest to adapt to this new life of mine and to adapt to living it without help. That's easier said than done. The help and visits have diminished again recently. It's not the help I need. It's not the help I miss. It obviously makes a difference in our lives if we have others helping us with the kids, chores, errands, and finances and we can really use that help sometimes. However, we have been figuring out how to do it on our own. We can't rely on others the rest of our lives.
But the one thing that helps me far more than doing chores or running errands for us is the comfort of knowing that I'm not going through this alone. Having people to talk to. Having a distraction from the pain, fatigue, nausea, etc. etc.
Nothing cheers me up more than being able to visit with friends and/or family and knowing that they're here for me. Whenever the "help", which includes people coming over just to visit, diminishes, I notice myself loosing hope. I notice myself getting depressed over having to deal with this disease that has drastically changed my life. I think about all the things I am missing out on. I start thinking about the future or lack there of.
So for anyone wondering why I have bitched about people not being there for me, read the quote from Jaclyn's family again and hopefully you'll understand. Needing support while going through a debilitating disease is a lot different from needing support while going through other difficult times in your life. In most cases, those times will pass (divorce, loss of a job, etc.). This will not pass. If it does, it'll be because I've passed.
"...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net
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| Mighty Mitochondria!!! (I'm sure that's not what mine look like) |
(As a reminder... I am not speaking to any one specific person (or 2 or 3). I am just speaking in general. So if you read this post and think I'm talking about you specifically, I guess maybe you should give some thought as to why you feel that way because I wasn't thinking of anyone in particular.)
Monday, May 14, 2012
Mito Awareness Video
This is a video made by someone on the "Mito Families" page on Facebook. It's somewhat of a support group for anyone dealing with mitochondrial disease; whether they're caring for someone with it, have a loved one suffering from it, or dealing with it themselves. It is a wonderful group.
This video is AWESOME! Please take a few minutes out of your day to watch it.
This video is AWESOME! Please take a few minutes out of your day to watch it.
Thursday, May 10, 2012
Knocking on wood
In the last couple of posts I have discussed how sick I have been. I'm going to change it up a bit....
I have felt, dare I say, good for the last few weeks. Can you believe it? I know I can't. I was so sick for a month. I had a few days within that month that I felt just okay, but I was really sick for the large majority of it. Now, I have actually been feeling better than just okay; I have actually felt good for what I believe has been about three weeks.
I just don't understand this disease. Part of me says "Who cares what the reason is? I feel good. Just accept it and enjoy it." However, the other part is waiting for the ball to drop... for the shit to hit the fan... for the other shoe to fall. I even broke into tears when talking to my husband one night because I feel so good. I know. That probably doesn't make much sense. I was crying because I know it won't last. And for you, "keep a positive attitude" and "have hope" people out there, I do. The difference is, I'm also realistic. I have been living with this disease long enough now to know what my body does.
Today I had to test my body a LOT. I had to pick up my daughter from school because she was not feeling well. (A migraine. Poor thing. I know how that feels and I felt sooooo bad for her. This was worse than any others she had.) I knew I was going to have to use more energy than normal taking care of her. When I got to the school, my chair lift would not go down. I tried and tried and it just kept sticking in the same spot. So I had to walk into the school to get her. Then I had to take her to the doctor. I hadn't taken her yet for these migraines because they have all gotten better with a couple of hours of rest and advil. Well, my wheelchair lift didn't work there either.
A lot of people think the wheelchair is just to save me from having to walk. Oh, it helps with a lot more than that. Imagine taking your child to the doctor. You have to walk from the car into the building. Then you have to stand at the front desk to sign her in. Then you go sit back down until they call your name (so there's walking from the desk to the waiting room and sitting down and then getting back up again). When they call your name you stand at the desk while they make sure all of your information is correct and have you pay the copay (standing for 3-5 min.). From there you go back to the waiting room to sit back down. Then they call your child's name and you have to get out of the chair and walk back to the room and sit down again. Now this doesn't always happen but I was getting up and down out of my chair to go to the sink to get my daughter a cool paper towel to put on her forehead. Then there's, of course, the walk back to the car.
See, if I had the use of my wheelchair, I could have avoided using energy for all of that walking, standing, and up and down out of chairs. It makes a HUGE difference, especially if I have to do it at multiple places.
So, after picking her up from school, taking her to the doctors office, and picking up her prescription (which was easier said than done but I won't go into that long drawn out story), I should have been in the bathroom vomiting followed by laying next to my daughter complaining of the same excruciating headache she had.
However, lucky for me, that wasn't the case. My muscles were twitching. My pain was raising rapidly. And my muscle weakness and fatigue were increasing as the day went on. But it shouldn't have been increasing... it should have hit me like a ton of bricks.
What the hell???? I don't get it! I'm not doing anything different that I know of. I'm not even on the mito cocktail. I quit taking that when my GI problems got bad awhile ago because I was struggling to get enough food down besides trying to get 5 pounds worth of pills down as well. (okay, that's a bit of an exaggeration, but it was a lot of pills)
I'm not making any changes, why am I better? Who cares, right? As long as I'm better.... Why ask why? Try Bud Dry. (budweiser did their job however many years ago with that damn bud dry commercial because every time I use that sentence "Why ask why?", in my mind I say "try bud dry"... props to you budweiser)
So for now, I'm just living my life to its fullest and enjoying this time I have feeling almost human.
I have felt, dare I say, good for the last few weeks. Can you believe it? I know I can't. I was so sick for a month. I had a few days within that month that I felt just okay, but I was really sick for the large majority of it. Now, I have actually been feeling better than just okay; I have actually felt good for what I believe has been about three weeks.
I just don't understand this disease. Part of me says "Who cares what the reason is? I feel good. Just accept it and enjoy it." However, the other part is waiting for the ball to drop... for the shit to hit the fan... for the other shoe to fall. I even broke into tears when talking to my husband one night because I feel so good. I know. That probably doesn't make much sense. I was crying because I know it won't last. And for you, "keep a positive attitude" and "have hope" people out there, I do. The difference is, I'm also realistic. I have been living with this disease long enough now to know what my body does.
Today I had to test my body a LOT. I had to pick up my daughter from school because she was not feeling well. (A migraine. Poor thing. I know how that feels and I felt sooooo bad for her. This was worse than any others she had.) I knew I was going to have to use more energy than normal taking care of her. When I got to the school, my chair lift would not go down. I tried and tried and it just kept sticking in the same spot. So I had to walk into the school to get her. Then I had to take her to the doctor. I hadn't taken her yet for these migraines because they have all gotten better with a couple of hours of rest and advil. Well, my wheelchair lift didn't work there either.
A lot of people think the wheelchair is just to save me from having to walk. Oh, it helps with a lot more than that. Imagine taking your child to the doctor. You have to walk from the car into the building. Then you have to stand at the front desk to sign her in. Then you go sit back down until they call your name (so there's walking from the desk to the waiting room and sitting down and then getting back up again). When they call your name you stand at the desk while they make sure all of your information is correct and have you pay the copay (standing for 3-5 min.). From there you go back to the waiting room to sit back down. Then they call your child's name and you have to get out of the chair and walk back to the room and sit down again. Now this doesn't always happen but I was getting up and down out of my chair to go to the sink to get my daughter a cool paper towel to put on her forehead. Then there's, of course, the walk back to the car.
See, if I had the use of my wheelchair, I could have avoided using energy for all of that walking, standing, and up and down out of chairs. It makes a HUGE difference, especially if I have to do it at multiple places.
So, after picking her up from school, taking her to the doctors office, and picking up her prescription (which was easier said than done but I won't go into that long drawn out story), I should have been in the bathroom vomiting followed by laying next to my daughter complaining of the same excruciating headache she had.
However, lucky for me, that wasn't the case. My muscles were twitching. My pain was raising rapidly. And my muscle weakness and fatigue were increasing as the day went on. But it shouldn't have been increasing... it should have hit me like a ton of bricks.
What the hell???? I don't get it! I'm not doing anything different that I know of. I'm not even on the mito cocktail. I quit taking that when my GI problems got bad awhile ago because I was struggling to get enough food down besides trying to get 5 pounds worth of pills down as well. (okay, that's a bit of an exaggeration, but it was a lot of pills)
I'm not making any changes, why am I better? Who cares, right? As long as I'm better.... Why ask why? Try Bud Dry. (budweiser did their job however many years ago with that damn bud dry commercial because every time I use that sentence "Why ask why?", in my mind I say "try bud dry"... props to you budweiser)
So for now, I'm just living my life to its fullest and enjoying this time I have feeling almost human.
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