So, since I have already posted today, and I'm really not even feeling like typing, or doing anything for that matter, I'm just going to do a short post this time.
A large part of mitochondrial disease, or any chronic disease for that matter, is the costs involved. A fellow mitovian (someone suffering from mitochondrial disease) wrote a post in her blog about this topic. She did a great job, so I wanted to share it. It fits real well with my theme of this week for my blog, mito awareness. So please take a minute to read her post.
http://mitofamilies.blogspot.com/2011/09/financial-reality-of-mito.html
So, instead of typing a few paragraphs about one symptom, or a set of symptoms that fit together, I'm going to write a list of every little symptom I have due to mitochondrial disease and dysautonomia/POTS. I experience many, if not all, of these symptoms every day.
Extreme fatigue
Muscle weakness
Muscle pain (24 hours a day, 7 days a week; made worse with activity)
Tinnitus (ringing in the ears)
Muscle spasms
Hot flashes
Extreme sweating during the day; night sweats at night
Heat intolerance
Cold intolerance
Increased heart rate with standing/activity
Shortness of breath (especially with activity)
Inability to stand for more than a few minutes at a time (standing longer would cause many of the symptoms listed here, including nausea, tremulousness, elevated heart rate, shortness of breath, and more)
Exercise Intolerance
Nausea
Constipation
Abdominal pain
Difficulty passing stools
Headaches
Migraines
Short term memory loss
Difficulty finding words or inability to think of the words I'm trying to say
Dysmotility - causing the nausea and constipation listed above
Acid reflux
Tremulousness (shaky, especially in the hands)
Irregular heartbeat/rhythm (symptomatic PVCs)
Blurred vision
Bruising easily
Slow recovery from illnesses
Mood changes (depression, irritability, etc.)
Poor balance
Unfortunately, I'm sure there's more but I'm struggling to keep my eyes open so my brain is probably already asleep. However, I've listed 30 of my symptoms for you. I hope that will help you better understand mito, why it is such a serious disease, and how I feel on a daily basis.
If you want to learn more, go to www.umdf.org
Now for a few videos. The UMDF had a contest for the best video for spreading awareness for Mito awareness week this year. Here are the top three videos, starting with the 3rd place winner, then the 2nd place winner, and then the overall winner. As always, I'm begging you to increase your awareness and watch these videos.
2011 Awareness Week Video 5 from UMDF on Vimeo.
2011 Awareness Week Video 3 from UMDF on Vimeo.
I met Kenadee's parents at the UMDF symposium. What a nice couple! As always, they do not deserve this, and neither does Kenadee. They are in my thoughts often. Kenadee is SO precious! I wish her and her family the best.
2011 Awareness Week Video 7 from UMDF on Vimeo.
I just met this little boy's mom on Facebook this week. Another great person. Her 2 1/2 year old daughter is in the process of getting diagnosed with mito now. We also connected because she understands my disappointment in people and is there as well. That is one of the many reasons why I write my blog. Kristi knows that she is not alone in her feelings and now I know I'm not the only one who is dealing with that as well. Thank you, Kristi, for reading and reminding me that I'm not alone in this world. Congrats, Kristi, on winning the video contest.
Congrats to the winners of the UMDF video contest! They were all great videos.
As always, thanks for reading, everybody. My eyelids are now winning the battle. Good night.
Friday, September 23, 2011
Thursday, September 22, 2011
What Mitochondrial Disease Means to Me, Part 3
HOWDY HO!
POOP!!!
Yep, today's post, boys and girls is about, yep you guessed it... poop!
Okay, well, not really. Actually, today's post for Mitochondrial Disease Awareness week is more about the lack of poop, than poop itself.
Most people with Mitochondrial Disease have problems with their GI System; namely GI Dysmotility. What the hell is that, you say? Well, as I'm sure you guessed, I'm going to explain it.
GI dysmotility is where the GI system, from the stomach down to the large intestine/colon, does not move, or does not move at the normal rate. This, as I'm sure you can imagine, causes many problems. Let's start from the top and make our way down. When the stomach doesn't move food through it, it causes multiple problems just from that standpoint alone. Many mito patients have the same GI problems I do, but I will just discuss them in terms of how they affect me. Any time I eat anything, I get full very quickly. I am not able to eat much at a time now a days. If I do eat too much, which is about half of what I used to be able to eat, I will get very nauseous. Even if I don't eat so much that I get nauseous, I will still feel very bloated, uncomfortable, and fatigued for at least an hour after I eat a meal. The act of eating a meal, and then digesting it, is a lot of work for my body. It is a very fine line that I have to walk to eat enough food both with each meal and on a daily basis so that I have the nutrients I need, especially for energy, but yet not too much food so that I am nauseous and also exhausted from having to digest my food. It's funny. Food is supposed to give me energy, so if I don't eat enough, I don't have enough energy, but if I eat too much, I don't have energy. Ha!
Let's move on to the small intestines and colon. Neither of these move fast enough, if at all. This, as you can imagine, causes extreme constipation. A lot of you probably think of constipation as hard, difficult to pass stools. However, it also involves going for multiple days without having a bowel movement. I generally go about once a week, sometimes less than that. As you can also imagine, this causes a lot of pain and bloating. I have abdominal pain a lot. If the stool is not passing because the colon doesn't move, it will sit in the colon and/or small intestine and the longer it sits there, the harder it gets. The harder it gets, the more difficult it is to pass. In addition to that, if stool is not coming out, there's no room for additional food to come in. Which then makes the problem in the last paragraph worse. So, it becomes a vicious circle that gets worse and worse.
I do take medications for these problems. Unfortunately, the medications I'm on right now don't do a whole lot. The Prilosec I take for my heartburn doesn't work all that well because the heartburn is caused from my food not digesting, not because of too much stomach acid. I also take Miralax. It's a non-habit forming laxative that is okay to take on a daily basis for long periods of time. However, all that does is soften the stool. Miralax does not make the intestines move. So, I still can't pass the stool that is now soft. It does, however, help stop the vicious circle that I explained previously.
The last problem with my GI system is muscle tone. The intestines are controlled by the autonomic nervous system. My autonomic nervous system doesn't work due to my dysautonomia. That is what causes my intestines to stop moving like they are supposed to (that movement, by the way, is called peristalsis). That movement is not the only thing that is working when you have a bowel movement, poop, take a crap, drop the kids off at the pool, go number 2, take a shit, take a dump, pinch a loaf, defect, sit on the throne, drop a deuce, or whatever you call it. When you go number 2, you also use multiple muscles in your pelvis to help pass the stool. Think of when you're bearing down, grunting, squeezing, pushing, use the valsalva maneuver or whatever you want to call it. When you are doing that, you are contracting muscles in the abdomen. Well, when you have a disease that causes muscle weakness, ALL muscles are weak, including the ones you might not normally think of.
I also posted awhile ago about my other pelvic issue: pelvic prolapse. That is when the muscles in the pelvic are no longer able to hold up the bladder, uterus, and rectum. I won't go into much more detail than that, because I don't want you all picturing my lady parts. The GI doc(s) will also be testing me for pelvic floor dysfunction, which is highly likely. Here is a tidbit about pelvic floor dysfunction from the American Society of Colon and Rectal Surgeons...
"The process of defecation (having a bowel movement) requires the coordinated effort of different muscles. The pelvic floor is made up of several muscles that support the rectum like a hammock. When an individual wants to have a bowel movement, the pelvic floor muscles are supposed to relax allowing the rectum to empty. While the pelvic floor muscles are relaxing, muscles of the abdomen contract to help push the stool out of the rectum. Individuals with pelvic floor dysfunction have a tendency to contract instead of relax the pelvic floor muscles. When this happens during an attempted bowel movement, these individuals are effectively pushing against an unyielding muscular wall."
Lucky for me, my muscles are weak, so it's not quit an "unyielding" muscular wall.
So, this completes our talk on poop. Thank you for joining me for this informative discussion about dropping the kids off at the pool. If you have been offended in anyway... I don't really care.
Here is the mito video of the day...
This is Pam. She lives in the Kansas City area, not too far from myself. Fascinating story. Fascinating woman. We have yet to meet, but we have talked on the phone.
Since I'm a couple of days behind, I am hoping to post another mito awareness post later today. We'll see how the day goes though.
I didn't post the last couple of days because on September 20th, I was celebrating another year of my life gone by. It is more of a celebration to me now because I am thankful that I am able to celebrate another year of my life that I have lived. I may not be living my life the way I had originally planned, or the way I would like to live it, but I am still living. Sometimes I do forget that, I know. It's not easy to celebrate a life that you did not wish for, but it's getting easier and easier as time goes on to appreciate my life the way it is. It could be worse, my kids could be celebrating my birthday without me.
Today I will be celebrating another year of my wonderful husband's life gone by. He's healthy as a horse. Thank, god. He is the most wonderful man I know. I couldn't have found a better husband. He's not perfect, but I know he tries... even if I do get on him every now and then about things I wish he would do different. I do know that he is still better than any other man I could ever find. So, on that note... Happy Birthday to the best husband and father in the world. I love you, and I will still love you when we're celebrating your 78th birthday.
Okay, well, not really. Actually, today's post for Mitochondrial Disease Awareness week is more about the lack of poop, than poop itself.
Most people with Mitochondrial Disease have problems with their GI System; namely GI Dysmotility. What the hell is that, you say? Well, as I'm sure you guessed, I'm going to explain it.
GI dysmotility is where the GI system, from the stomach down to the large intestine/colon, does not move, or does not move at the normal rate. This, as I'm sure you can imagine, causes many problems. Let's start from the top and make our way down. When the stomach doesn't move food through it, it causes multiple problems just from that standpoint alone. Many mito patients have the same GI problems I do, but I will just discuss them in terms of how they affect me. Any time I eat anything, I get full very quickly. I am not able to eat much at a time now a days. If I do eat too much, which is about half of what I used to be able to eat, I will get very nauseous. Even if I don't eat so much that I get nauseous, I will still feel very bloated, uncomfortable, and fatigued for at least an hour after I eat a meal. The act of eating a meal, and then digesting it, is a lot of work for my body. It is a very fine line that I have to walk to eat enough food both with each meal and on a daily basis so that I have the nutrients I need, especially for energy, but yet not too much food so that I am nauseous and also exhausted from having to digest my food. It's funny. Food is supposed to give me energy, so if I don't eat enough, I don't have enough energy, but if I eat too much, I don't have energy. Ha!
Let's move on to the small intestines and colon. Neither of these move fast enough, if at all. This, as you can imagine, causes extreme constipation. A lot of you probably think of constipation as hard, difficult to pass stools. However, it also involves going for multiple days without having a bowel movement. I generally go about once a week, sometimes less than that. As you can also imagine, this causes a lot of pain and bloating. I have abdominal pain a lot. If the stool is not passing because the colon doesn't move, it will sit in the colon and/or small intestine and the longer it sits there, the harder it gets. The harder it gets, the more difficult it is to pass. In addition to that, if stool is not coming out, there's no room for additional food to come in. Which then makes the problem in the last paragraph worse. So, it becomes a vicious circle that gets worse and worse.
I do take medications for these problems. Unfortunately, the medications I'm on right now don't do a whole lot. The Prilosec I take for my heartburn doesn't work all that well because the heartburn is caused from my food not digesting, not because of too much stomach acid. I also take Miralax. It's a non-habit forming laxative that is okay to take on a daily basis for long periods of time. However, all that does is soften the stool. Miralax does not make the intestines move. So, I still can't pass the stool that is now soft. It does, however, help stop the vicious circle that I explained previously.
The last problem with my GI system is muscle tone. The intestines are controlled by the autonomic nervous system. My autonomic nervous system doesn't work due to my dysautonomia. That is what causes my intestines to stop moving like they are supposed to (that movement, by the way, is called peristalsis). That movement is not the only thing that is working when you have a bowel movement, poop, take a crap, drop the kids off at the pool, go number 2, take a shit, take a dump, pinch a loaf, defect, sit on the throne, drop a deuce, or whatever you call it. When you go number 2, you also use multiple muscles in your pelvis to help pass the stool. Think of when you're bearing down, grunting, squeezing, pushing, use the valsalva maneuver or whatever you want to call it. When you are doing that, you are contracting muscles in the abdomen. Well, when you have a disease that causes muscle weakness, ALL muscles are weak, including the ones you might not normally think of.
I also posted awhile ago about my other pelvic issue: pelvic prolapse. That is when the muscles in the pelvic are no longer able to hold up the bladder, uterus, and rectum. I won't go into much more detail than that, because I don't want you all picturing my lady parts. The GI doc(s) will also be testing me for pelvic floor dysfunction, which is highly likely. Here is a tidbit about pelvic floor dysfunction from the American Society of Colon and Rectal Surgeons...
"The process of defecation (having a bowel movement) requires the coordinated effort of different muscles. The pelvic floor is made up of several muscles that support the rectum like a hammock. When an individual wants to have a bowel movement, the pelvic floor muscles are supposed to relax allowing the rectum to empty. While the pelvic floor muscles are relaxing, muscles of the abdomen contract to help push the stool out of the rectum. Individuals with pelvic floor dysfunction have a tendency to contract instead of relax the pelvic floor muscles. When this happens during an attempted bowel movement, these individuals are effectively pushing against an unyielding muscular wall."
Lucky for me, my muscles are weak, so it's not quit an "unyielding" muscular wall.
So, this completes our talk on poop. Thank you for joining me for this informative discussion about dropping the kids off at the pool. If you have been offended in anyway... I don't really care.
Here is the mito video of the day...
This is Pam. She lives in the Kansas City area, not too far from myself. Fascinating story. Fascinating woman. We have yet to meet, but we have talked on the phone.
Since I'm a couple of days behind, I am hoping to post another mito awareness post later today. We'll see how the day goes though.
I didn't post the last couple of days because on September 20th, I was celebrating another year of my life gone by. It is more of a celebration to me now because I am thankful that I am able to celebrate another year of my life that I have lived. I may not be living my life the way I had originally planned, or the way I would like to live it, but I am still living. Sometimes I do forget that, I know. It's not easy to celebrate a life that you did not wish for, but it's getting easier and easier as time goes on to appreciate my life the way it is. It could be worse, my kids could be celebrating my birthday without me.
Today I will be celebrating another year of my wonderful husband's life gone by. He's healthy as a horse. Thank, god. He is the most wonderful man I know. I couldn't have found a better husband. He's not perfect, but I know he tries... even if I do get on him every now and then about things I wish he would do different. I do know that he is still better than any other man I could ever find. So, on that note... Happy Birthday to the best husband and father in the world. I love you, and I will still love you when we're celebrating your 78th birthday.
Tuesday, September 20, 2011
What Mitochondrial Disease Means to Me, Part 2
I am going to try my hardest to type tonight. The last couple of days have been filled with my number one symptom, the symptom that I will talk about in today's installment of "What Mitochondrial Disease Means to Me": FATIGUE.
Fatigue is the number one symptom of mito. Let's go back a bit and discuss what mitochondrial disease is. Think back, waaaaay back to biology class. It wasn't too long ago for me since I'm so young and all, but it may be a little bit more difficult for you oldies out there. Mitochondria are in almost every cell in the human body (red blood cells and one other that I can't remember right now do not contain mitochondria). Mitochondria produce the energy that cells need to do their "job". They convert the oxygen we breathe and the food we eat into energy, otherwise known as ATP. Therefore, if some of the mitochondrion are not working, the cells will not have the energy they need to do what they need to do (i.e. lung cells help us breath and transport oxygen to our blood, muscle cells help us move our bodies, breathe, etc.)
So, I have Mitochondrial Disease with deficits in Complex I and III. What the hell does that mean, you say? Well, the mitochondria use a 5 step process, or 5 complexes, to convert oxygen and nutrients into energy (ATP). If even one of those complexes does not work, the whole process gets screwed up. It's like a power plant. I can't be too specific because I don't know exactly how a power plant works, but I do know there has to be steps to the process of creating power. If one or more of the machines in a power plant break down, the power plant is not going to be able to produce power, or at least not very well or not as much of it. That is the same thing that happens in Mitochondrial Disease.
Another analogy I've heard is to imagine running your whole household all day with a AA battery. You wouldn't get very far. There wouldn't be enough light for your kids to do their homework. The stove or microwave wouldn't heat up enough to fix dinner. You wouldn't be able to watch the news on TV to increase your knowledge of what's going on in the world.
Since I'm discussing fatigue in this post, lets use the battery analogy again. Try using a watch battery to power a Power Wheels car. It wouldn't get very far. Well, I'm the Power Wheels and I'm using a watch battery.
This watch battery is, however, rechargeable. But, as you can imagine, even fully charged, it still doesn't get the Power Wheels very far. That's me. I can do a limited amount of activity. However, it doesn't take long at all before I have to recharge.
When I get up in the morning, my body takes awhile to get going (my battery/engine needs to warm up). I can usually get myself some coffee, then rest. After 20 minutes of rest, I will go fix myself an easy breakfast, get my pills, eat it, then I'm ready to rest again. Once again, after 20-30 minutes, I'm ready to brush my teeth, get dressed, put my contacts in, and sometimes even make the bed before I have to rest again. I am able to get out and about. However, just driving makes me tired and weak. Most people don't realize how many times you have to move your right foot from one pedal to the other in the course of a 20 minute drive.
This, in addition to my weakness (which will be the subject of another post) and pain, is the reason why I use an electric wheelchair. I am able to walk, but walking takes a LOT of energy. I'd rather save my energy that I would use walking to use doing other activities. Sometimes I use my chair not to save energy, but because I've already used too much.
I thought my wheelchair would upset me, make me feel embarrassed, and I wouldn't want to use it unless I absolutely have to. However, I am so thankful for it. It is so nice to be able to conserve my energy for things I enjoy doing by using my wheelchair. Even getting around the house in it helps me save so much energy for me to use to do other things like cleaning up, or spending time helping my daughters with their homework. I am so happy to have such a huge fatigue-reducing device that I am not embarrassed by it at all. Instead, I am thankful that I can "stand" and talk to people for more than 2 minutes because I am actually sitting.
The best way to describe the way someone with Mitochondrial Disease feels in regard to energy is by sharing "The Spoon Theory" with you. If you haven't read it before, please do so now. It will also help you understand why I will sometimes say that I am "out of spoons for the day", or "making the bed this morning took up too many of my spoons."
So please take some time to read the spoon theory by clicking HERE.
In addition to my posts about how mito affects me, I will be posting videos everyday about Mitochondrial Disease or people dealing with it.
Fatigue is the number one symptom of mito. Let's go back a bit and discuss what mitochondrial disease is. Think back, waaaaay back to biology class. It wasn't too long ago for me since I'm so young and all, but it may be a little bit more difficult for you oldies out there. Mitochondria are in almost every cell in the human body (red blood cells and one other that I can't remember right now do not contain mitochondria). Mitochondria produce the energy that cells need to do their "job". They convert the oxygen we breathe and the food we eat into energy, otherwise known as ATP. Therefore, if some of the mitochondrion are not working, the cells will not have the energy they need to do what they need to do (i.e. lung cells help us breath and transport oxygen to our blood, muscle cells help us move our bodies, breathe, etc.) So, I have Mitochondrial Disease with deficits in Complex I and III. What the hell does that mean, you say? Well, the mitochondria use a 5 step process, or 5 complexes, to convert oxygen and nutrients into energy (ATP). If even one of those complexes does not work, the whole process gets screwed up. It's like a power plant. I can't be too specific because I don't know exactly how a power plant works, but I do know there has to be steps to the process of creating power. If one or more of the machines in a power plant break down, the power plant is not going to be able to produce power, or at least not very well or not as much of it. That is the same thing that happens in Mitochondrial Disease.
Another analogy I've heard is to imagine running your whole household all day with a AA battery. You wouldn't get very far. There wouldn't be enough light for your kids to do their homework. The stove or microwave wouldn't heat up enough to fix dinner. You wouldn't be able to watch the news on TV to increase your knowledge of what's going on in the world.
This watch battery is, however, rechargeable. But, as you can imagine, even fully charged, it still doesn't get the Power Wheels very far. That's me. I can do a limited amount of activity. However, it doesn't take long at all before I have to recharge.When I get up in the morning, my body takes awhile to get going (my battery/engine needs to warm up). I can usually get myself some coffee, then rest. After 20 minutes of rest, I will go fix myself an easy breakfast, get my pills, eat it, then I'm ready to rest again. Once again, after 20-30 minutes, I'm ready to brush my teeth, get dressed, put my contacts in, and sometimes even make the bed before I have to rest again. I am able to get out and about. However, just driving makes me tired and weak. Most people don't realize how many times you have to move your right foot from one pedal to the other in the course of a 20 minute drive.
This, in addition to my weakness (which will be the subject of another post) and pain, is the reason why I use an electric wheelchair. I am able to walk, but walking takes a LOT of energy. I'd rather save my energy that I would use walking to use doing other activities. Sometimes I use my chair not to save energy, but because I've already used too much.
I thought my wheelchair would upset me, make me feel embarrassed, and I wouldn't want to use it unless I absolutely have to. However, I am so thankful for it. It is so nice to be able to conserve my energy for things I enjoy doing by using my wheelchair. Even getting around the house in it helps me save so much energy for me to use to do other things like cleaning up, or spending time helping my daughters with their homework. I am so happy to have such a huge fatigue-reducing device that I am not embarrassed by it at all. Instead, I am thankful that I can "stand" and talk to people for more than 2 minutes because I am actually sitting.
So please take some time to read the spoon theory by clicking HERE.
In addition to my posts about how mito affects me, I will be posting videos everyday about Mitochondrial Disease or people dealing with it.
Sunday, September 18, 2011
What Mitochondrial Disease Means to Me, Part I
I posted that exact statement on Facebook tonight. I am doing the same thing on FB that I'm doing here for Mitochondrial Disease awareness week. I am so honored to see that multiple other people who are dealing with mito reposted, word for word, what I said about pain and mito. To me, that just reiterates how true it is and how many people are going through exactly what I am. It is so sad to me, though, that many of those who reposted it are mothers of children with mito who have to see their child in pain all the time. I am thankful that I am the one in pain everyday, 24 hours a day, and not my children.
As an emergency room nurse, I never truly understood those in chronic pain. Instead of looking at the patient, I would look at the amount of pain meds on their medication list and immediately form an opinion of them. Considering that our patients had to tell us what medications they take on a daily basis almost right after they tell us their name, that opinion I formed based on their medication list ended up being my first impression of them. I didn't take the time to think about why they take all of those pain medications. I would immediately have a poor opinion of them because they "want to take narcotics".
Well, I have news for the old me, and any other ER nurse out there who looks down on or forms a poor opinion of people on pain medications, especially narcotics... We don't want to take narcotics to relieve our pain, we have to.
I have tried everything. I have tried heat, ice, non-narcotic pain relievers, icy-hot, massage, relaxation techniques, screaming expletives, over the counter pain relievers, hitting myself in a part of my body that I don't have pain so I won't think about the pain I do have, and, of course, eating excessive amounts of ice cream and pizza (and a bunch of things that I can't remember). They all work, but not enough. When my pain is a 6 on a 1-10 scale, almost all the time, those things just don't do it.
I think if pain was my only problem, I may be able to make all of those things combined work. However, as you'll see over the course of the next week, pain is far from my only problem. Fatigue is my biggest problem secondary to pain. And, as anyone with pain will tell you, pain is always 10 times worse when you are fatigued. In addition to that, pain can be tolerated well when experienced in short periods of time. But, my pain never goes away. I am thrilled if I can get my pain below a 2 or 3.
Pain can be anywhere. My pain is just about everywhere. Well, really, it's just in one place... my muscles. However, muscles are everywhere. As I can say that I have pain in 75% of the muscles in my body, my pain is bad in just a few places. Of course, I say "just a few" like it's not that many, then I start to list them off and it definitely sounds like more than "just a few". My worst pain is in the back of my neck and head which causes a headache all over if I don't keep it under control, my pelvic muscles, upper legs, and butt... oh, excuse me, gluteus maximus. Every now and then I have pain in my back, chest, abdomen, and upper arms. That pain is not as constant as the pain in the areas I mentioned first. You may notice that I walk a bit different than I used to. That is because of both the pain and weakness equally.
My pain gets worse with any activity, as does almost all of my symptoms. Because of that, and the fatigue, my pain gets worse as the day goes on. Evenings and night are not so great for me, unless I am well medicated. And even then, I am sometimes still in a lot of pain.
I am very lucky, thanks to the recommendation of my mom, to have an excellent pain doctor. He is my second. He is caring, funny, and very intelligent. He even knows a bit about mitochondrial disease. I don't have to argue to get him to change things because they're not working. I am not nervous prior to my appointments and I leave there happy. That doesn't happen very often with doctor's appointments.
My pain meds have been working fairly well as of late. There are times that they don't work, though. That's just going to happen.
So, if you are the type of person who tends to judge people for being on narcotic pain medications, please try to change that. I, as well as many people with chronic pain, am not trying to get high. I am only trying to decrease the amount of pain I'm in so I can go on with my life as best as possible. And this is coming from someone who's been on both sides.
With each of these posts this week, I will be posting a video about mitochondrial disease. Enjoy!
Tuesday, September 13, 2011
Mitochondrial Disease Awareness Week
I have been doing my part to raise awareness as well as money for the United Mitochondrial Disease Foundation. They use the money raised for research to help find a better treatment, a cure, and to help train doctors about mitochondrial disease since there are so few mito specialists.
I have been working diligently to raise money for our team for the walkathon. A saying that I always go by is, "You can't bitch about something if you're not going to do something about it." I feel that if you have a problem, do something to solve it. If you don't, you have no room to complain about it. There's not much I can do about the things I have been going through over the last couple of years. I have, however, done everything I can do. I pushed and pushed for a diagnosis when I knew I didn't have one, or the right one. Now that I have a diagnosis, there isn't much I can do about the way I feel on a daily basis. There's definitely nothing I can do to cure my disease. However, there is something I can do to help the people who can find a treatment and/or cure, or other things that help people with mito.
Other than raising money, I am also trying to raise awareness. No one, including doctors and other medical personnel, knows what mitochondrial disease is. If a doctor has heard of it, they don't know much about it other than the name. Everyone knows what a pink ribbon stands for, but how many people know what a green ribbon stands for? How many people know what mitochondrial disease does to a person?
Because of this, I will have numerous posts over the course of the next week and a half titled "What mitochondrial disease means to me." It will be just that. I will be letting all of you in the blogging world know what mitochondrial disease is and how it affects me on a day to day basis. I'm even pretty sure that a good portion of my family and friends don't even know all of the ways mito affects me.
So tune in over the next couple of weeks and learn a few things about mitochondrial disease. Please.. if you do anything for me this year, learn what mito is to me.
And one more thing.... This is another reminder about the Energy for Life Walkathon this Saturday, September 17th. I set my team goal to $5000. Our team is currently at $2855. Please help me reach our goal. Go to Robin Jones' personal donation page and click "Donate" or go to Team CTS page and pick another team member to donate to. Thanks for your help!
In response to a comment, and more.
I want to respond to a comment left by an anonymous person on my last post. However, I felt it important enough to put it in a post and not a follow up comment.
I have copied and pasted the comment here so you won't have to go back to look at it....
Anonymous said...
Is there a support group that you can join? Also, is there any volunteer organization that you could get involved with that could help you refocus some of the energy that you do have?
I think in terms of your disapointment with people you sound like you could benefit from a support group/therapist and that is probably some of what you are trying to do with your blog but perhaps it is time to accept that the people who are disappointing you are not going to change but you can change and stop choosing to be disappointed by them.
Doesn't sound like you are in a great spot and I don't envy your position.
As my last few posts have pointed out, I am having problems dealing with people recently. I have felt let down over and over again in the last couple of years since I started getting sick.
I want to explain a few things about me. I am a people person. In addition to that, I am a very independent person. You wouldn't think so based on the person I am now and the things I write on here, but deep down inside, I am. Both of those qualities have made all of this so difficult on me.
I do agree with you, anonymous, that I need to quit trying to change everyone else and instead change myself. I do need to learn to stop being disappointed by people who continue to disappoint me over and over again. Unfortunately, that's easier said that done. Yes, I could go see a therapist. (Actually, I have been kind of looking for a good one recently.) There aren't any mito support groups in town since it's such a rare disease. I am, however, starting a class in a couple of weeks titled "Living Well with a Disability".
However, I am reminded almost everyday how much people let me down. Here's why. As an independent person, I never had to ask for help before. Even if I needed it, I found a way to take care of it on my own. Now, whether I want to or not, I cannot take care of much of anything on my own, including myself. I can't take care of my kids, myself, my patients (which I don't have anymore, but you get my point), my house, or my husband. I am so independent, I can't stand asking for help. BUT... I desperately need it. I need it everyday. Therefore, everyday, when I need help, and don't get it, I am reminded of the people who have let me down over the last couple of years.
As I said, I am a people person. I am reminded everyday of all of the friends I have lost and the friends and family who are too busy to visit as I sit in my house everyday, alone and lonely. I can't get out and do things because I only have enough energy to take care of my kids for 2 hours after school, and help with stuff in the evenings (bath, etc.).
I am trying. I do try to stay positive. Obviously it's not working. However, I am successful in keeping myself from getting really down/depressed about the situation I'm in. There are many days that all I want to do is lay in bed and feel sorry for myself all day. There are many times that I just want to cry and cry. However, I have not been doing either. I get up everyday and take care of myself and my kids when they get home from school, no matter how awful I feel, physically or mentally. No matter how nauseous, in pain, weak, or tired I am, I still get up and around and take care of myself and my kids everyday. So, with the amount of mental energy it takes for me to just get through my day while feeling horrible, physically and sometimes mentally, I don't have a lot left over to be overly positive about things I just don't feel very positive about.
Thank you, anonymous, for reading my blog and leaving your comment. I appreciate every point of view and side of the story.
I have copied and pasted the comment here so you won't have to go back to look at it....
Anonymous said...
Is there a support group that you can join? Also, is there any volunteer organization that you could get involved with that could help you refocus some of the energy that you do have?
I think in terms of your disapointment with people you sound like you could benefit from a support group/therapist and that is probably some of what you are trying to do with your blog but perhaps it is time to accept that the people who are disappointing you are not going to change but you can change and stop choosing to be disappointed by them.
Doesn't sound like you are in a great spot and I don't envy your position.
As my last few posts have pointed out, I am having problems dealing with people recently. I have felt let down over and over again in the last couple of years since I started getting sick.
I want to explain a few things about me. I am a people person. In addition to that, I am a very independent person. You wouldn't think so based on the person I am now and the things I write on here, but deep down inside, I am. Both of those qualities have made all of this so difficult on me.
I do agree with you, anonymous, that I need to quit trying to change everyone else and instead change myself. I do need to learn to stop being disappointed by people who continue to disappoint me over and over again. Unfortunately, that's easier said that done. Yes, I could go see a therapist. (Actually, I have been kind of looking for a good one recently.) There aren't any mito support groups in town since it's such a rare disease. I am, however, starting a class in a couple of weeks titled "Living Well with a Disability".
However, I am reminded almost everyday how much people let me down. Here's why. As an independent person, I never had to ask for help before. Even if I needed it, I found a way to take care of it on my own. Now, whether I want to or not, I cannot take care of much of anything on my own, including myself. I can't take care of my kids, myself, my patients (which I don't have anymore, but you get my point), my house, or my husband. I am so independent, I can't stand asking for help. BUT... I desperately need it. I need it everyday. Therefore, everyday, when I need help, and don't get it, I am reminded of the people who have let me down over the last couple of years.
As I said, I am a people person. I am reminded everyday of all of the friends I have lost and the friends and family who are too busy to visit as I sit in my house everyday, alone and lonely. I can't get out and do things because I only have enough energy to take care of my kids for 2 hours after school, and help with stuff in the evenings (bath, etc.).
I am trying. I do try to stay positive. Obviously it's not working. However, I am successful in keeping myself from getting really down/depressed about the situation I'm in. There are many days that all I want to do is lay in bed and feel sorry for myself all day. There are many times that I just want to cry and cry. However, I have not been doing either. I get up everyday and take care of myself and my kids when they get home from school, no matter how awful I feel, physically or mentally. No matter how nauseous, in pain, weak, or tired I am, I still get up and around and take care of myself and my kids everyday. So, with the amount of mental energy it takes for me to just get through my day while feeling horrible, physically and sometimes mentally, I don't have a lot left over to be overly positive about things I just don't feel very positive about.
Thank you, anonymous, for reading my blog and leaving your comment. I appreciate every point of view and side of the story.
Wednesday, September 7, 2011
Where Did Everyone Go? Part II
This evening I had a nervous breakdown of sorts. "Oh, whatever, she's exaggerating," you say. Well, not by much I'm not. Let me explain...
I am titling this Where Did Everyone Go? Part II because I titled a post "Where did everyone go?" almost a year ago. In that post I discussed how everyone was so helpful, but it was slowly going away. Well, that was nothing.
Over the last few months the amount of help we have received has decreased drastically. Don't get me wrong, I didn't expect it to last forever. Or did I?
With two kids, one of which being pretty young still, it is difficult for my husband to do everything that needs to be done on a daily basis. I know what you're probably thinking.... (I'm practicing my mind reading here) "It's just like being a single dad. Lots of people do it." However, he not only has to take care of our two kids, but he has to take care of me as well.
I saw the help slowly wearing off a couple of months ago. So, I decided to try to hire someone. I have done a little bit of searching. However, I was encouraged by multiple people that that wasn't necessary. Those people said they could do it so I don't have to. My dear husband doesn't want to spend the money (after all, it's a lot of money... and we just stopped paying for daycare for my youngest one since she just started Kindergarten). So I've put off a strenuous search for a caretaker. I am now finding that I need one.
School started a couple of weeks ago. My oldest started 7th grade; first year of middle school, with 2 advanced classes. My youngest started Kindergarten. She comes home on the bus at 3:30pm instead of coming home with Chris at 5:30pm. The older helps take care of the younger. Or that was the plan. She has had so much homework and studying to do that she not only needs my help with, but prevents her from helping me with her sister. So, at 3:30, both of my daughters are home, and Chris doesn't get home until at least 5:30. I know 2 hours doesn't sound like much, but it's the toughest 2 hours of the day for both myself and my 5 year old. I generally hit a wall by 5 o'clock at the latest. And when I hit a wall, I hit a wall. I have zero energy, my brain just about completely stops working (no helping with 7th grade homework, I can barely help with Kindergarten homework), I generally get a headache, and my muscles decide that they are done for the day. And yes, I eat a good sized, healthy snack in the afternoon. So, every afternoon when the kids are home has proven to be very tough on me. As soon as Chris gets home, I generally go straight to bed and he has to bring my dinner to me there.
I finally saw a GI doc last week. (no, I'm not completely changing the subject. I promise. I'm not that ADD.) She ordered 3 tests, none of which are extremely easy to do. Two of the tests are this week (Wed. and Fri.) at a hospital 25 minutes away. The first test will probably last about 3-4 hours, plus another hour of driving there and back. Then, as soon as I get home, I will have to take care of the kids, despite the fact that I will probably hit my 5 o'clock wall by 3 o'clock. Then, on Thursday, I have a meeting at the elementary school at 2:30. I will then have to come home to get my youngest taken care of to then get out again to pick up my oldest from choir practice. On Friday, I have another test at the same hospital, 25 minutes away. Next week I have a colonoscopy. I am worried that because of the prep and test, I will need help just getting around and taking care of myself the day before, of, and after the colonoscopy.
I know that doesn't sound like much to you healthy people out there. To me, it sounds completely awful. My main fear is that doing all of this myself will set me back. If Mito patients do too much, and overdo it, we can possibly not recover from the setback it causes.
Unfortunately, what other choice do I have? I have 1, maybe 2 people I feel comfortable asking for help right now. There are a couple of people I feel comfortable asking for help if it's something very small. But when it comes to taking care of me the day before, of, and after my colonoscopy, who's going to do that? My wonderful mom #2 (step-mom) is going to care for me the day of.
It's not just the tests and doctor's appointments that I'm on my own for. It's the everyday stuff.... taking care of the kids 5 days a week by myself, getting stuff done around the house, etc. My husband's doing the best he can. He gets a lot of stuff done at night, but he can't help me with anything during the day. He has already had difficulty getting his 40 hours in over the last couple of months because he's had to help me so much.
I just don't know what to do. Do I try harder to find someone to hire to help me and then have to struggle with finances again because we can't afford it. (at least not the amount that I really need help) Do I just suck it up and do it myself feel like shit, physically and mentally, all the time? I don't know what to do.
In addition to that, it's really starting to get me down again. Once again, I'm lonely and with feeling like I don't have any help or anyone to ask for help, I feel alone in addition to lonely.
So, after a busy day today of running errands, taking care of the kids when they got home, and dealing with major problems with the pharmacy (one of the errands I ran, and my husband ran... twice), the thought of doing everything I have to do this week put me into a partial nervous breakdown; crying, hyperventilating, etc. It wasn't pretty.
And now... I'm too tired to keep typing, or to keep my eyes open for that matter. No pretty pictures this time... sorry.
I am titling this Where Did Everyone Go? Part II because I titled a post "Where did everyone go?" almost a year ago. In that post I discussed how everyone was so helpful, but it was slowly going away. Well, that was nothing.
Over the last few months the amount of help we have received has decreased drastically. Don't get me wrong, I didn't expect it to last forever. Or did I?
With two kids, one of which being pretty young still, it is difficult for my husband to do everything that needs to be done on a daily basis. I know what you're probably thinking.... (I'm practicing my mind reading here) "It's just like being a single dad. Lots of people do it." However, he not only has to take care of our two kids, but he has to take care of me as well.
I saw the help slowly wearing off a couple of months ago. So, I decided to try to hire someone. I have done a little bit of searching. However, I was encouraged by multiple people that that wasn't necessary. Those people said they could do it so I don't have to. My dear husband doesn't want to spend the money (after all, it's a lot of money... and we just stopped paying for daycare for my youngest one since she just started Kindergarten). So I've put off a strenuous search for a caretaker. I am now finding that I need one.
School started a couple of weeks ago. My oldest started 7th grade; first year of middle school, with 2 advanced classes. My youngest started Kindergarten. She comes home on the bus at 3:30pm instead of coming home with Chris at 5:30pm. The older helps take care of the younger. Or that was the plan. She has had so much homework and studying to do that she not only needs my help with, but prevents her from helping me with her sister. So, at 3:30, both of my daughters are home, and Chris doesn't get home until at least 5:30. I know 2 hours doesn't sound like much, but it's the toughest 2 hours of the day for both myself and my 5 year old. I generally hit a wall by 5 o'clock at the latest. And when I hit a wall, I hit a wall. I have zero energy, my brain just about completely stops working (no helping with 7th grade homework, I can barely help with Kindergarten homework), I generally get a headache, and my muscles decide that they are done for the day. And yes, I eat a good sized, healthy snack in the afternoon. So, every afternoon when the kids are home has proven to be very tough on me. As soon as Chris gets home, I generally go straight to bed and he has to bring my dinner to me there.
I finally saw a GI doc last week. (no, I'm not completely changing the subject. I promise. I'm not that ADD.) She ordered 3 tests, none of which are extremely easy to do. Two of the tests are this week (Wed. and Fri.) at a hospital 25 minutes away. The first test will probably last about 3-4 hours, plus another hour of driving there and back. Then, as soon as I get home, I will have to take care of the kids, despite the fact that I will probably hit my 5 o'clock wall by 3 o'clock. Then, on Thursday, I have a meeting at the elementary school at 2:30. I will then have to come home to get my youngest taken care of to then get out again to pick up my oldest from choir practice. On Friday, I have another test at the same hospital, 25 minutes away. Next week I have a colonoscopy. I am worried that because of the prep and test, I will need help just getting around and taking care of myself the day before, of, and after the colonoscopy.
I know that doesn't sound like much to you healthy people out there. To me, it sounds completely awful. My main fear is that doing all of this myself will set me back. If Mito patients do too much, and overdo it, we can possibly not recover from the setback it causes.
Unfortunately, what other choice do I have? I have 1, maybe 2 people I feel comfortable asking for help right now. There are a couple of people I feel comfortable asking for help if it's something very small. But when it comes to taking care of me the day before, of, and after my colonoscopy, who's going to do that? My wonderful mom #2 (step-mom) is going to care for me the day of.
It's not just the tests and doctor's appointments that I'm on my own for. It's the everyday stuff.... taking care of the kids 5 days a week by myself, getting stuff done around the house, etc. My husband's doing the best he can. He gets a lot of stuff done at night, but he can't help me with anything during the day. He has already had difficulty getting his 40 hours in over the last couple of months because he's had to help me so much.
I just don't know what to do. Do I try harder to find someone to hire to help me and then have to struggle with finances again because we can't afford it. (at least not the amount that I really need help) Do I just suck it up and do it myself feel like shit, physically and mentally, all the time? I don't know what to do.
In addition to that, it's really starting to get me down again. Once again, I'm lonely and with feeling like I don't have any help or anyone to ask for help, I feel alone in addition to lonely.
So, after a busy day today of running errands, taking care of the kids when they got home, and dealing with major problems with the pharmacy (one of the errands I ran, and my husband ran... twice), the thought of doing everything I have to do this week put me into a partial nervous breakdown; crying, hyperventilating, etc. It wasn't pretty.
And now... I'm too tired to keep typing, or to keep my eyes open for that matter. No pretty pictures this time... sorry.
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