Last Saturday my husband and I held a fundraising party for United Mitochondrial Disease Foundation (UMDF) called Shopping for a Cure. With the Energy for Life walk coming up I had decided to put together this party about a month ago to try to raise more funds for the walk. I had about 9 or 10 people from various different home/party based sales companies set up in my house to sell their products. They then donated their profits to UMDF. It seemed to have been a success. Quite a few people came and "shopped for a cure".
I knew it was going to be hard work and it would take a lot out of me, just like the walk will in a few weeks. However, I didn't think it would be this bad. Here's that roller coaster I ride again. The party not only created a physical roller coaster, but a mental one as well.
The party itself was great and I had a lot of fun. I think we raised a good amount of money for UMDF and the EFL walk but I won't know exactly how much for another week or so. I felt pretty good the day and night of the party. However, it sent me into a mito crash that I have yet to recover from 5 days later.
I have been sick since Sunday morning and it is now Thursday night. I normally get over a mito crash from too much activity like that within a few days. That's when it's worth it to me. When it's something important to me, like the fundraiser, it's worth it to me to have to be sick for a couple of days. However, 5 days is really pushing it. I can start feeling better any time now!
My main problem is that I haven't been able to eat. Every time I try to eat something with any substance I get very nauseous and/or vomit. That means that my diet for the last 5 days has consisted of orange sherbet, pudding, chicken broth, toast, and crackers. Even the crackers made me nauseous once. The two worst things for a person with mito is infection and fasting. I may not be completely fasting, but it's pretty close considering how few calories I'm taking in each day.
The second downfall of this roller coaster is the emotional side of things. I was so thrilled to have everyone here at my home for the fundraiser. That happiness has completely faded away. Being sick is so lonely. Laying in one spot day after day doing the same thing gets so old. Feeling so sick sucks. The part that makes it suck even more is when friends and family don't call to check up on me to see how I'm doing or to see if they can do anything to help. Luckily my parents are there for me a lot. However, I wish I had friends that would call me to see how I'm doing.
I'm friends with a bunch of people with Mito on facebook. When they post that they're sick or their child is sick they get a ton of responses... "you're in my prayers"..."feel better soon"..."I'm sorry you feel bad." You know, I don't need a ton of responses. Would it be nice to know that a lot of people have me in their thoughts when I'm unable to get out of bed and feeling awful for 5 days? Of course. But what I need instead is less than a handful of responses from my "good" friends.
It is SO hard to be sick. The longer it goes on, the harder it is to handle. But the loneliness and isolation just makes it so much harder to handle. A few months ago I published a post titled "Support through this challenging journey". It explains why support is so important and how critical it is to have support in order to deal with this illness. I found this quote and it says it better than I possibly could. "...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 So it is, then, the lack of support that pulls me down and makes me wonder how I can continue on in this life while feeling the way I do all the time. If it wasn't for my husband and my parents I would have no one that I can truly count on. I am so jealous of those people who have sisters, real and friends who are like sisters. I just wish I had friends who I knew would always be there for me when I really need them. Isn't that what true friends are? If that is the case, I have one true friend.... he's also my husband. I am so thankful for that. I wouldn't be able to get through this without him.
Friday, August 31, 2012
Sunday, August 12, 2012
Still Alive
Yes, I'm still alive. It's been 2 and a half months since my last post. Luckily, it's not because I've been in the hospital, too sick to write, or dead. The great news is that I've actually been too busy to write. That is a great thing for someone who has spent the last 2+ years bored and feeling as though my life is completely useless. The only bad news is that I actually like to write. I like to share my most intimate thoughts and private life with the entire world via the internet. Yes, I'm completely crazy. I'm well aware, so you don't need to remind me. I have, over the last 2 months, thought about writing a blog post more times than I can count. There have been so many times that I've though, "Ooooo... I need to write a blog post about that!" to only forget 5 minutes later because I have so many things taking up space in my brain. You don't have to worry, I'm not going to try to catch up by writing all of the posts I've wanted to write over the last couple of months. But, I do need to catch everyone up. Sooooo... here's the abbreviated version of all of the posts I've thought about writing in the last 2 months but didn't have the time or the energy to do so.
I'm on my own. It seems that that happens more often than not. In this case, I am speaking of the Energy for Life walk. A little over three months prior to the walk I was asked to co-chair the event. I was very happy to oblige. A few weeks later the other co-chair stepped down. I'm okay with it. It's hard work and it'll continue to be hard work up until the walk. However, it makes me happy to not only have something to do but to do something I can feel proud of.. to do something that gives my life purpose.
About 4 months ago I had decided to plan a 5K to raise money for mitochondrial disease charities. Immediately after that decision I was sick for over a month. That made me decide to hold off on the 5K until next year as I needed a full 6 months to plan and I was down to less than 5 after my sickness. I told a couple of people about my plans and got a not so stellar reaction. It was quite obvious that they not only disagreed with my decision, but didn't think I could do it. It's always handy when that happens, (Yes, I said handy) because that just makes me want to do it even more. Makes me want to prove them wrong. Well, I guess now I have my chance. Only in this case I'm doing it with less than 3 months to plan. So, to those of you who doubted me, thanks. Thanks for giving me one more reason to have a successful event.
A trip of a lifetime. That is what my husband, my 2 daughters, and I had the first 2 weeks in July. When we returned I couldn't wait to tell the entire world about our trip. It is probably best that I didn't get around to it, because I would've probably rambled on about our trip while showing you pictures all while you yawn and think "is she done yet?". Nobody wants to sit through a slideshow of 100+ pictures of someone else's vacation while that person rambles on about every single detail. I will keep it short... Our plan was to take 2 days to drive to Florida. However, on our way, my husband's father called to let him know that his grandma had passed away. So we took a detour through Maysville, KY for 24 hours to pay our respects. When we finally made it to FL we stayed with my wonderful step-brother and his family for 5 nights, during which we swam, celebrated Independence Day, ate great food, played at Universal Studios, and had a lot of laughs. Following that, we drove to the other side of FL to stay in my husband's boss's condo for 4 nights. The condo was right on the beach and gave us an absolutely gorgeous view from the 8th floor. While there we spent 2 days at the beach, one day at Hollywood Studios, and one day at Walt Disney World. I wish I would've remembered/had time and energy to write about our trip right when we got home. There are so many wonderful memories to tell as well as tips for the disabled traveler. If anyone wants to hear my tips for the disabled traveler, let me know and I'll make a post about it. If I know there are people interested, I'm more willing to write about it. As far as the wonderful memories, I will just tell you my favorite. My daughter's birthday was only 4 days after we went to Disney World Magic Kingdom. My sister-in-law suggested that we get her a button that says it's her birthday. That was the best thing we did. Every disney employee told her happy birthday and when we watched the parades (one during the day and the electric light parade at night) about 50% of the characters looked directly at her and said "Happy Birthday!" It brought me to tears just about every time. It almost did as I'm telling the story. There couldn't have been a better birthday present for a little girl turning 6 who loves the Disney princesses.
The start of a business. At the beginning of the summer I posted about turning my hobbies into businesses. Unfortunately, the walk has taken up almost all of my time. However, I am trying to get my website completed in the next week or two. I'm very excited for that.
Health, or lack there of. I was very amazed at how well my body held up while we were on vacation. My body did, however, let me know that I wasn't being nice to it by the end of the trip. The 2 day drive home was not fun with muscle pain, fatigue, headache, and nausea. I didn't complain much, though, because I was so thankful that it all held off until the last day of the trip and then the drive home. However, my health has not been great since the trip. About every 3 months the medication I am taking to keep my GI system moving stops working. I've been through countless different medications since my motility drastically slowed about a year ago. The most recent medication I've been on quit working right before we left for our trip. I won't give you all the details of my bowel movements over the last couple of weeks. Alright, hold the applause. I will just tell you that for a couple of weeks I looked like I was 7 months pregnant and I was having the exact opposite problem of what I normally have in regards to the movement of my lower GI system. Thanks to a fellow mito friend, my GI doc diagnosed me with small bowel bacterial overgrowth (sbbo). You see, my GI doc is good at faking like he knows a lot, but in reality, he is fairly clueless about motility issues and completely clueless about mitochondrial disease. So, I said "thanks to a fellow mito friend" because she suggested that I may have sbbo. I then asked my doc about it after he speculated for a few minutes about what could be wrong with me without mentioning sbbo. After asking me a few questions he then agreed that it could be that. He ordered an xray and stool sample. Once those come back negative he will know that it's sbbo (even though I'm already sure it is), and I will start antibiotics.
In addition to all of the above, I've been to the Lake of the Ozarks twice, once with the entire family and once with just my husband for some much needed R&R, as well as the zoo. I decided a few months ago that I needed to start living by my favorite quote, "The cure for mito is living life" by Amanda Perrotta. So that's exactly what I'm doing.
So that covers all of the things that I've done or have happened to me in the last 2 months that I've wanted to blog about. There are plenty of other things I've wanted to blog about but those all had to do with thoughts and feelings. With school starting in a couple of days I will have more time and once the walk is over I will have a lot more time. Hopefully my business will be at least somewhat successful and it will keep my busy through the winter months.
Until next time... I leave you with a few questions to ponder.
Do your friends and family know that you love them? How do they know? Do you tell them or just assume they know? Do your words say "I love you" but your actions say "I could really care less about you"?
I'm on my own. It seems that that happens more often than not. In this case, I am speaking of the Energy for Life walk. A little over three months prior to the walk I was asked to co-chair the event. I was very happy to oblige. A few weeks later the other co-chair stepped down. I'm okay with it. It's hard work and it'll continue to be hard work up until the walk. However, it makes me happy to not only have something to do but to do something I can feel proud of.. to do something that gives my life purpose.
About 4 months ago I had decided to plan a 5K to raise money for mitochondrial disease charities. Immediately after that decision I was sick for over a month. That made me decide to hold off on the 5K until next year as I needed a full 6 months to plan and I was down to less than 5 after my sickness. I told a couple of people about my plans and got a not so stellar reaction. It was quite obvious that they not only disagreed with my decision, but didn't think I could do it. It's always handy when that happens, (Yes, I said handy) because that just makes me want to do it even more. Makes me want to prove them wrong. Well, I guess now I have my chance. Only in this case I'm doing it with less than 3 months to plan. So, to those of you who doubted me, thanks. Thanks for giving me one more reason to have a successful event.
A trip of a lifetime. That is what my husband, my 2 daughters, and I had the first 2 weeks in July. When we returned I couldn't wait to tell the entire world about our trip. It is probably best that I didn't get around to it, because I would've probably rambled on about our trip while showing you pictures all while you yawn and think "is she done yet?". Nobody wants to sit through a slideshow of 100+ pictures of someone else's vacation while that person rambles on about every single detail. I will keep it short... Our plan was to take 2 days to drive to Florida. However, on our way, my husband's father called to let him know that his grandma had passed away. So we took a detour through Maysville, KY for 24 hours to pay our respects. When we finally made it to FL we stayed with my wonderful step-brother and his family for 5 nights, during which we swam, celebrated Independence Day, ate great food, played at Universal Studios, and had a lot of laughs. Following that, we drove to the other side of FL to stay in my husband's boss's condo for 4 nights. The condo was right on the beach and gave us an absolutely gorgeous view from the 8th floor. While there we spent 2 days at the beach, one day at Hollywood Studios, and one day at Walt Disney World. I wish I would've remembered/had time and energy to write about our trip right when we got home. There are so many wonderful memories to tell as well as tips for the disabled traveler. If anyone wants to hear my tips for the disabled traveler, let me know and I'll make a post about it. If I know there are people interested, I'm more willing to write about it. As far as the wonderful memories, I will just tell you my favorite. My daughter's birthday was only 4 days after we went to Disney World Magic Kingdom. My sister-in-law suggested that we get her a button that says it's her birthday. That was the best thing we did. Every disney employee told her happy birthday and when we watched the parades (one during the day and the electric light parade at night) about 50% of the characters looked directly at her and said "Happy Birthday!" It brought me to tears just about every time. It almost did as I'm telling the story. There couldn't have been a better birthday present for a little girl turning 6 who loves the Disney princesses.
The start of a business. At the beginning of the summer I posted about turning my hobbies into businesses. Unfortunately, the walk has taken up almost all of my time. However, I am trying to get my website completed in the next week or two. I'm very excited for that.
Health, or lack there of. I was very amazed at how well my body held up while we were on vacation. My body did, however, let me know that I wasn't being nice to it by the end of the trip. The 2 day drive home was not fun with muscle pain, fatigue, headache, and nausea. I didn't complain much, though, because I was so thankful that it all held off until the last day of the trip and then the drive home. However, my health has not been great since the trip. About every 3 months the medication I am taking to keep my GI system moving stops working. I've been through countless different medications since my motility drastically slowed about a year ago. The most recent medication I've been on quit working right before we left for our trip. I won't give you all the details of my bowel movements over the last couple of weeks. Alright, hold the applause. I will just tell you that for a couple of weeks I looked like I was 7 months pregnant and I was having the exact opposite problem of what I normally have in regards to the movement of my lower GI system. Thanks to a fellow mito friend, my GI doc diagnosed me with small bowel bacterial overgrowth (sbbo). You see, my GI doc is good at faking like he knows a lot, but in reality, he is fairly clueless about motility issues and completely clueless about mitochondrial disease. So, I said "thanks to a fellow mito friend" because she suggested that I may have sbbo. I then asked my doc about it after he speculated for a few minutes about what could be wrong with me without mentioning sbbo. After asking me a few questions he then agreed that it could be that. He ordered an xray and stool sample. Once those come back negative he will know that it's sbbo (even though I'm already sure it is), and I will start antibiotics.
In addition to all of the above, I've been to the Lake of the Ozarks twice, once with the entire family and once with just my husband for some much needed R&R, as well as the zoo. I decided a few months ago that I needed to start living by my favorite quote, "The cure for mito is living life" by Amanda Perrotta. So that's exactly what I'm doing.
So that covers all of the things that I've done or have happened to me in the last 2 months that I've wanted to blog about. There are plenty of other things I've wanted to blog about but those all had to do with thoughts and feelings. With school starting in a couple of days I will have more time and once the walk is over I will have a lot more time. Hopefully my business will be at least somewhat successful and it will keep my busy through the winter months.
Until next time... I leave you with a few questions to ponder.
Do your friends and family know that you love them? How do they know? Do you tell them or just assume they know? Do your words say "I love you" but your actions say "I could really care less about you"?
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