Saturday we went to register my daughter for college classes. We got notice about the registration on Wednesday, luckily we were able to make it there (it's 4 hours away). It ended up an error, so we decided to explore the city instead. It was a good day, all in all. Sunday and Monday also went well although I was sore and really tired.
Some days I wake up feeling good, which for me means just a little fatigue. I have some level of it every day, and some days more than others. Just last week I was lucky enough to have two days in a row with energy. Last Monday I woke up with stiff joints, which sucked because it was a beautiful day out. At least it looked like it from my window. I really wanted to go out but I was too tired and had to save energy so that I could o to the grocery store. Luckily my daughter went with me, but the floor was killer on my hips and legs. Last Tuesday I had IVS and just couldn’t get myself moving but Wednesday I woke up with more energy than usual and it happened again on Thursday and Friday.
So it really does change every day, and I have no control over it. I have tried to rest up for activities, but that did not work out as I had hoped. I try to RSVP for things, but I still end up missing some of those things. Some people get upset over it (I do too) and I have friends that do not invite me places because I have canceled on the too much. It hurts my feelings but I have to remind myself that they don’t know what I deal with and no matter how hard I try to explain it, they will most likely never understand. But I’m glad they will never have to.
It’s tough for me to remember life before the pain, before the fatigue. It’s like a haze that surrounds me, every day I have a choice. I can look to the past or look to the future; I chose the future. Occasionally the past comes calling and I have a down day, I’d be lying if I said I always look on the bright side. I try to I have another blog called “The Bright Side” and a facebook page too, I’m hoping that by reminding myself to be thankful, I will be reminding others. Yeah I know I’m one of those dippy hippies. LOL
My life is unpredictable, and I have less stress about it since I accepted it. It took me a while and I still lapse every now and then; but life goes on.
About Me
- Chrissy
- I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.
Showing posts with label energy. Show all posts
Showing posts with label energy. Show all posts
Tuesday, September 23, 2014
Thursday, September 19, 2013
More mito awareness
It's mito awareness week as most of my friends and family know, but a few still seem wrapped up in their own lives. I'm not really surprised, it happens during CF awareness too. I do not for one second think I am the center of the universe, but it would be nice if some of my loved ones at least acted like they were interested in a cure. For either illness. It isn't as if we only get to pick one charity/disease to champion so I am not sure why it is like pulling teeth to get them to come out to an event or to share a post to raise awareness.
Back to raising awareness...
Mitochondria are in almost every cell in the body, and produce 90% of energy needed by the body to function. When there is a dysfunction in the mitochondria the body is not able to convert food and oxygen to energy. The heart, brain, muscles and lungs, are the most affected by mitochondrial disease because the require the most energy. Someone affected may have strokes, seizures, gastro-intestinal problems, (reflux, severe vomiting, constipation, diarrhea), swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease.
Some of my symptoms overlap with my cystic fibrosis, so I guess in a sense I got a double whammy. Please go to UMDF.org for more information on mitochondrial disease and how you can help. Another good site to check out is mitoaction.org
Back to raising awareness...
Mitochondria are in almost every cell in the body, and produce 90% of energy needed by the body to function. When there is a dysfunction in the mitochondria the body is not able to convert food and oxygen to energy. The heart, brain, muscles and lungs, are the most affected by mitochondrial disease because the require the most energy. Someone affected may have strokes, seizures, gastro-intestinal problems, (reflux, severe vomiting, constipation, diarrhea), swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease.
Some of my symptoms overlap with my cystic fibrosis, so I guess in a sense I got a double whammy. Please go to UMDF.org for more information on mitochondrial disease and how you can help. Another good site to check out is mitoaction.org
Monday, September 16, 2013
Mitochondrial Disease Awareness week
Yesterday was the start of mitochondrial disease awareness week! So I'm going to post every day with some information on what exactly this disease is and what it does to me personally. I am not doing this for sympathy or anything but rather so that people can read and see how mito effects me personally. So to start off, what is mitochondrial disease? According to the United Mitochondrial Disease Foundation (UMDF.org) it is:
"A result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection."
So technically:
"Mitochondrial diseases are the result of either inherited or spontaneous mutations in mtDNA or nDNA which lead to altered functions of the proteins or RNA molecules that normally reside in mitochondria. Problems with mitochondrial function, however, may only affect certain tissues as a result of factors occurring during development and growth that we do not yet understand. Even when tissue-specific isoforms of mitochondrial proteins are considered, it is difficult to explain the variable patterns of affected organ systems in the mitochondrial disease syndromes seen clinically."
Mito Action adds:
•Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function.
•The incidence about 1:3000-4000 individuals in the US. This is similar to the incidence of cystic fibrosis of caucasian births in the U.S.
•There are many forms of mitochondrial disease.
•Mitochondrial disease is inherited in a number of different ways
•Mitochondrial disease presents very differently from individual to individual.
•There may be one individual in a family or many individuals affected over a number of generations.
There are many of them, which means there are many different symptoms. But the most common are:
•Poor Growth
•Loss of muscle coordination, muscle weakness
•Neurological problems, seizures
•Autism, autistic spectrum, autistic-like features
•Visual and/or hearing problems
•Developmental delays, learning disabilities
•Heart, liver or kidney disease
•Gastrointestinal disorders, severe constipation
•Diabetes
•Increased risk of infection
•Thyroid and/or adrenal dysfunction
•Autonomic dysfunction
•Neuropsychological changes characterized by confusion, disorientation and memory loss.
My current symptoms:
•Loss of muscle coordination, muscle weakness, muscle cramps, muscle spasms
*Nerve Pain
*Joint Pain (Fingers, toes, knees hips)
*Poor absorption (result, several vitamin deficiencies) added complications due to CF
*Poor Digestion (added complications due to CF)
*Thyroid dysfunction
•Neuropsychological changes characterized by confusion, disorientation and memory loss.
*Liver (unsure if this is CF related or mito related or a combo)
•Fatigue - everyday
*bone pain
On a scale of 1 - 10 today my fatigue is an 8, muscle pain is 3, joint is 6, and nerve is 5. This numbers are my usual range. When I have a good day I still have my symptoms, they might all be below a 5 or I am hiding it. Which I do all too well, according to my husband.
"A result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection."
So technically:
"Mitochondrial diseases are the result of either inherited or spontaneous mutations in mtDNA or nDNA which lead to altered functions of the proteins or RNA molecules that normally reside in mitochondria. Problems with mitochondrial function, however, may only affect certain tissues as a result of factors occurring during development and growth that we do not yet understand. Even when tissue-specific isoforms of mitochondrial proteins are considered, it is difficult to explain the variable patterns of affected organ systems in the mitochondrial disease syndromes seen clinically."
Mito Action adds:
•Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function.
•The incidence about 1:3000-4000 individuals in the US. This is similar to the incidence of cystic fibrosis of caucasian births in the U.S.
•There are many forms of mitochondrial disease.
•Mitochondrial disease is inherited in a number of different ways
•Mitochondrial disease presents very differently from individual to individual.
•There may be one individual in a family or many individuals affected over a number of generations.
There are many of them, which means there are many different symptoms. But the most common are:
•Poor Growth
•Loss of muscle coordination, muscle weakness
•Neurological problems, seizures
•Autism, autistic spectrum, autistic-like features
•Visual and/or hearing problems
•Developmental delays, learning disabilities
•Heart, liver or kidney disease
•Gastrointestinal disorders, severe constipation
•Diabetes
•Increased risk of infection
•Thyroid and/or adrenal dysfunction
•Autonomic dysfunction
•Neuropsychological changes characterized by confusion, disorientation and memory loss.
My current symptoms:
•Loss of muscle coordination, muscle weakness, muscle cramps, muscle spasms
*Nerve Pain
*Joint Pain (Fingers, toes, knees hips)
*Poor absorption (result, several vitamin deficiencies) added complications due to CF
*Poor Digestion (added complications due to CF)
*Thyroid dysfunction
•Neuropsychological changes characterized by confusion, disorientation and memory loss.
*Liver (unsure if this is CF related or mito related or a combo)
•Fatigue - everyday
*bone pain
On a scale of 1 - 10 today my fatigue is an 8, muscle pain is 3, joint is 6, and nerve is 5. This numbers are my usual range. When I have a good day I still have my symptoms, they might all be below a 5 or I am hiding it. Which I do all too well, according to my husband.
Monday, October 17, 2011
Conserving energy
I haven't blogged in a while, mostly because I haven't had the energy. Yeah...that's right. I said "energy". It takes a lot for me to sit down and organize my thoughts here. I have found myself; lately, having to pick and choose my activities a lot more carefully. Here is a list of some of those things that I have to choose between most days:
Things that take energy
1. Getting out of bed
2. Getting a shower
3. Getting dressed
4. Coming down the stairs
5. Getting my medicine together and prepping treatments
6. Going into the kitchen to get something to eat
7. Eating breakfast
8. Cleaning up after breakfast
9. Going to the bathroom
10. Making phone calls
11.Logging in to school and participating
12.Walking back from the kitchen to the sofa.
I think you get the idea (a few of these I have to do more than once). Some days I wake up and can get 5 or 6 things done while others (less often) I can maybe even help out by starting a load of laundry or *gasp* I might have enough energy to spend some time with friends.
I do not consider myself a lazy person, but I'm not sure how many of my friends and family actually get how much energy it takes me to do the smallest task. Yesterday I had to take a shower with my husband, not for anything kinky mind you...but because I couldn't wash my hair. I'm not kidding either. Most people don't really know how bad it is because I honestly don't talk about it much.
I just feel bad about it. Embarrassed. Frustrated. Angry. I would rather not get the looks filled with pity, or they say "What about trying this or that?". My condition isn't something my doctors seem to know much about so, I don't like trying to explain something that even the "experts" have problems understanding.
These things are why when I have the energy I'll take my daughter shopping (even if I have to keep her out of school). This is why when friends or family call and ask for help or say they want to spend time with me--I'll move heaven and earth if I have the energy.
Things that take energy
1. Getting out of bed
2. Getting a shower
3. Getting dressed
4. Coming down the stairs
5. Getting my medicine together and prepping treatments
6. Going into the kitchen to get something to eat
7. Eating breakfast
8. Cleaning up after breakfast
9. Going to the bathroom
10. Making phone calls
11.Logging in to school and participating
12.Walking back from the kitchen to the sofa.
I think you get the idea (a few of these I have to do more than once). Some days I wake up and can get 5 or 6 things done while others (less often) I can maybe even help out by starting a load of laundry or *gasp* I might have enough energy to spend some time with friends.
I do not consider myself a lazy person, but I'm not sure how many of my friends and family actually get how much energy it takes me to do the smallest task. Yesterday I had to take a shower with my husband, not for anything kinky mind you...but because I couldn't wash my hair. I'm not kidding either. Most people don't really know how bad it is because I honestly don't talk about it much.
I just feel bad about it. Embarrassed. Frustrated. Angry. I would rather not get the looks filled with pity, or they say "What about trying this or that?". My condition isn't something my doctors seem to know much about so, I don't like trying to explain something that even the "experts" have problems understanding.
These things are why when I have the energy I'll take my daughter shopping (even if I have to keep her out of school). This is why when friends or family call and ask for help or say they want to spend time with me--I'll move heaven and earth if I have the energy.
Tuesday, July 5, 2011
The truth about batteries
Since my last blog I have been trying to be more honest, and while it is getting easier - I still find myself sugar coating things for people. Its not that they don't understand but sometimes - they don't understand the depth of it (does that make sense) Not that it something everyone understands, hell even the NIH in Bethesda doesn't understand my mitochondrial disease.
The mitochondria are the little batteries/power houses of the human cells. They can be found in every cell except the red blood cell. The number in each cell varies depending on how much energy demands. (Think of it like having a pack of M & M's. All the M & M's in the pack are energy, but because I have two mutations the brown and the orange are defective. Each cell depending on energy needs is like a pack of M & M's, so some times the bag/cell has 25% defective mitochondria while the next bag/cell could have 60%.)
Most energy production happens inside the mitochondria, so you can imagine that people with mutated mitochondria get fatigued easy. And how easy varies on a day to day basis. One day getting out of bed is a chore while the next I can go grocery shopping. Additionally one day my digestive system has enough energy to work correctly and the next day - it doesn't. This link explains it much better than I could:
So even though it sounds far fetched that I'm not feeling well two hours after you saw me doing fine; it happens. I'm not lying to get out of hanging out, create drama, to cause problems, or to get things my way. Seriously. I have enough drama from the cells in my body - I don't need or want more.
There are several different mitochondrial diseases, with mine the doctors won't give me any specific name. The reason? My two mutations are rare, so rare that one of them is completely unique to me. So they don't know what to expect and neither do I. I have had symptoms since I was little, but no one realized it. I was clumsy and had poor balance. At 16 I started having noticeable muscle spasms. At 21 NIH figured out that it was not 1 but 2 mitochondrial mutations causing all the problems (IN addition of course to my cystic fibrosis). Now at 34 I have muscle aches, cramps, pain, fatigue and spasms; I don't absorb nutrients the way I'm supposed to. While People with CF have problems absorbing fat and fat soluble vitamins; I got a double whammy and have problems absorbing lipids, fat soluble vitamins, water soluble vitamins, and minerals needed to help my body function. (This is why sometimes I get confused and/or forget things) And they don't know whats next. Honest. I don't want to be sick, and I'm not being dramatic, but the doctors really have no idea what symptoms could be next. They do know that it is progressive, having a genetic progressive disease stinks but I find myself more afraid of the progressive genetic disease that keeps me and the doctors guessing. When I was diagnosed with CF they told me that with the proper care there is no reason I couldn't live to be 40. When I was told about my mitochondrial disease I was told that I may be in a wheel chair by 40.
Why am I putting this in my blog? So that people can read it and understand, hopefully; that I don't want your manufactured drama, your rumors and lies, and I don't want your pity. I want to live life, help my friends and family with real problems. I want to love (as sappy as that sounds) and not get hung up on the little things, and I want that for everyone else too. And I'm also putting this in my blog to get it off my chest, as it has been bothering me for the past few days.
The mitochondria are the little batteries/power houses of the human cells. They can be found in every cell except the red blood cell. The number in each cell varies depending on how much energy demands. (Think of it like having a pack of M & M's. All the M & M's in the pack are energy, but because I have two mutations the brown and the orange are defective. Each cell depending on energy needs is like a pack of M & M's, so some times the bag/cell has 25% defective mitochondria while the next bag/cell could have 60%.)
Most energy production happens inside the mitochondria, so you can imagine that people with mutated mitochondria get fatigued easy. And how easy varies on a day to day basis. One day getting out of bed is a chore while the next I can go grocery shopping. Additionally one day my digestive system has enough energy to work correctly and the next day - it doesn't. This link explains it much better than I could:
So even though it sounds far fetched that I'm not feeling well two hours after you saw me doing fine; it happens. I'm not lying to get out of hanging out, create drama, to cause problems, or to get things my way. Seriously. I have enough drama from the cells in my body - I don't need or want more.
There are several different mitochondrial diseases, with mine the doctors won't give me any specific name. The reason? My two mutations are rare, so rare that one of them is completely unique to me. So they don't know what to expect and neither do I. I have had symptoms since I was little, but no one realized it. I was clumsy and had poor balance. At 16 I started having noticeable muscle spasms. At 21 NIH figured out that it was not 1 but 2 mitochondrial mutations causing all the problems (IN addition of course to my cystic fibrosis). Now at 34 I have muscle aches, cramps, pain, fatigue and spasms; I don't absorb nutrients the way I'm supposed to. While People with CF have problems absorbing fat and fat soluble vitamins; I got a double whammy and have problems absorbing lipids, fat soluble vitamins, water soluble vitamins, and minerals needed to help my body function. (This is why sometimes I get confused and/or forget things) And they don't know whats next. Honest. I don't want to be sick, and I'm not being dramatic, but the doctors really have no idea what symptoms could be next. They do know that it is progressive, having a genetic progressive disease stinks but I find myself more afraid of the progressive genetic disease that keeps me and the doctors guessing. When I was diagnosed with CF they told me that with the proper care there is no reason I couldn't live to be 40. When I was told about my mitochondrial disease I was told that I may be in a wheel chair by 40.
Why am I putting this in my blog? So that people can read it and understand, hopefully; that I don't want your manufactured drama, your rumors and lies, and I don't want your pity. I want to live life, help my friends and family with real problems. I want to love (as sappy as that sounds) and not get hung up on the little things, and I want that for everyone else too. And I'm also putting this in my blog to get it off my chest, as it has been bothering me for the past few days.
Monday, November 23, 2009
Something else...
Well the title is because I just got a new diagnosis the other day (Friday). First off my doctor gave me hell (in her own way) for skipping IV therapy so much. So I explained to my primary that I have been feeling like crud. I skipped about 3 weeks and my CK went up to just over 2200; and after getting lipids for a week it was down to just over 1500. She asked what was going on so I told her all my symptoms as of late; and she said "Hmmmm". (LOL)
She called the nurse in and had me lie down. She took me blood pressure and pulse; she had me sit up and she took BP and pulse again; and finally she had me stand and got the info. The nurse helped me sit back down and left the room to go talk to the doctor.
In comes the doctor and she is talking, but honestly my head was pounding and I couldn't pay attention. Really all I could make out was "you have POTS Chrissy" and "new medicine to help".
So I came home and looked it up...
What is Postural Tachycardia Syndrome?
Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadeness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age.
Doctors aren't sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS, but the current thinking is that they are the result of abnormalities in the sympathetic nervous system (which is responsible for decreasing muscle tone and increasing heartbeat in reaction to situations of stress or emergency) or the parasympathetic nervous system (which does the opposite) or both .
(taken from http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm)
And...
The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.
(http://www.dinet.org/pots_an_overview.htm)
So...that explains a lot for me! December 1st I have a colonoscopy and endoscopy scheduled. I'm a little worried but they say it will help my digestive problems be diagnosed. My problems are too different from "standard" (their words not mine) CF digestive problems; and with my mitochondrial disease...well they just don't know. So getting these tests done will help figure out the puzzel that I am! (HA!)
She called the nurse in and had me lie down. She took me blood pressure and pulse; she had me sit up and she took BP and pulse again; and finally she had me stand and got the info. The nurse helped me sit back down and left the room to go talk to the doctor.
In comes the doctor and she is talking, but honestly my head was pounding and I couldn't pay attention. Really all I could make out was "you have POTS Chrissy" and "new medicine to help".
So I came home and looked it up...
What is Postural Tachycardia Syndrome?
Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadeness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age.
Doctors aren't sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS, but the current thinking is that they are the result of abnormalities in the sympathetic nervous system (which is responsible for decreasing muscle tone and increasing heartbeat in reaction to situations of stress or emergency) or the parasympathetic nervous system (which does the opposite) or both .
(taken from http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm)
And...
The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.
(http://www.dinet.org/pots_an_overview.htm)
So...that explains a lot for me! December 1st I have a colonoscopy and endoscopy scheduled. I'm a little worried but they say it will help my digestive problems be diagnosed. My problems are too different from "standard" (their words not mine) CF digestive problems; and with my mitochondrial disease...well they just don't know. So getting these tests done will help figure out the puzzel that I am! (HA!)
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