About 2 months ago I was getting IV therapy, but now I'm not. My PCP is out for medical reasons and the doctor that I saw in her place had absolutely no idea what to do with me. She sent a script in for 1 treatment (with only part of my treatment) for one time. I was pretty upset but I took solace that my doctor would be back in June. I ended up not getting IVs because the pharmacist noted the script was incorrect b/c it had Vitamin K in it and I'm on warfarin. So they wanted to make it with out the Vitamin K; but the doctor did not call them back. That's not all. The doc also prescribed me a new pain meds b/c my old ones don't help much anymore (and I was already take the max. dose)... any way she prescribed it for 400mg but they only do a 500, but the doctor never called them back to correct it (after she had been notified and asked to fix it). So I called to find out if they were scheduling for my doctor and was told she would be back sometime in July.
I called again a few days ago and they say she won't be back until September. SEPTEMBER.
I'm angry. I don't want anyone to jump through hoops for me, but I do think the doctor filling in should be doing more. With out my IVs I am exhausted. My pain feels worse, although I guess I could just be that tired. I don't know anymore. We just got back from a camping weekend, which was a lot of fun. I don't think anyone notice how tired I was. Maybe they did. I don't know.
I enjoy making memories with people I love, so I usually put my pain or fatigue on the back burner to do it; so if I cancel I'm feeling really bad. I'd invite people over but my house is not clean enough and my yard is a freaking jungle. My husband is having his own issues with fatigue and will be going in this week for a sleep study. I hope he gets help one of us should have energy.
This weekend my daughter is coming to visit for Father's day, and think I'll need they wheel chair more b/c of the fatigue that the pain.
About Me
- Chrissy
- I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.
Showing posts with label fatigue. Show all posts
Showing posts with label fatigue. Show all posts
Wednesday, June 17, 2015
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.
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