I'm taking advantage of my sleepless nights and writing another entry-
So I had several appointments this week but ended up cancelling almost all of them because of being sick, flaring up, and just different symptoms. However, there was no way I was going to cancel my appointment I had yesterday (Thursday 12/18) for any reason. I was so determined to make the trip out of town to see this doctor because I had previously cancelled on him before, due to being in the hospital, and this appointment was long overdue. Fortunately, I made it! My anxiety was building up and I was nervous to see what he was going to say. (To refresh your memory: I saw the Nurse Practitioner who works under him, the week prior but was really unhappy with how the appointment went and the suggestions that she had for me.)
By happy chance, he sincerely apologized for the way the appointment went and how I wasn't happy with it. After sharing some laughs, jokes, fun, & cookies, we started talking more about everything that has changed since I last saw him and discussing things one by one. We ordered some more testing for the Mitochondrial Disease (Mito), discussed and continued the Mito cocktail, and discussed previous test results and other symptoms, that wait for it... are symptoms of Mito, and further prove his theory that I have this disease. We also talked about the "risky-ish" medication that I just recently started and how some patients with Mito have worsening symptoms on this specific medication. Over the course of the next several weeks, we will keep a watchful eye for certain signs, and already have a back-up plan in place in case this happens. But, hopefully it won't and I will be one of the few lucky patients who are able to tolerate this medication well, despite the Mito.
For those of you who may not understand what Mitochondrial Disease is, if you would like, you can learn more about this disease by clicking HERE! In a gist, Mito is a dysfunction of the mitochondria. Mitochondria is inside almost every cell in your body. Its job is to produce 90% of the energy your body needs to sustain life. When the mitochondria fails to do its job, less energy is created, therefore cell injury/cell death can follow, resulting in possible organ system failure. The most common damage occurs to the cells of the brain, skeletal muscles, respiratory, endocrine, heart, liver, & kidney systems. There are many symptoms of Mito that spread acro ss the board. The "red flag" for this disea se, is when the patient presents with issues in more than 3 organ systems.
On a different note, we discussed the results of some scans I previously had done. It showed more progression of some of my other illnesses and showed signs of other new issues I didn't know I had. This was pretty disappointing, due to just how much was going on and how much showed up. A comment was made that if I were able to have MRIs done and we did one, it would probably show even more issues and more things going on because it gives a better look than the CT scans do. Obviously, the progression is affecting me. I can feel it, and I can tell, and my symptoms are obvious effects of it. In a couple weeks, I will have my appointment again with my Rheumatologist to further discuss options and what to do next.
That's my update for today's appointment! Until next time my friends!
"You gain strength, courage, & confidence by every experience in which you stop to look fear in the face. You are able to say to yourself 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do." -Eleanor Roosevelt.
So I had several appointments this week but ended up cancelling almost all of them because of being sick, flaring up, and just different symptoms. However, there was no way I was going to cancel my appointment I had yesterday (Thursday 12/18) for any reason. I was so determined to make the trip out of town to see this doctor because I had previously cancelled on him before, due to being in the hospital, and this appointment was long overdue. Fortunately, I made it! My anxiety was building up and I was nervous to see what he was going to say. (To refresh your memory: I saw the Nurse Practitioner who works under him, the week prior but was really unhappy with how the appointment went and the suggestions that she had for me.)
By happy chance, he sincerely apologized for the way the appointment went and how I wasn't happy with it. After sharing some laughs, jokes, fun, & cookies, we started talking more about everything that has changed since I last saw him and discussing things one by one. We ordered some more testing for the Mitochondrial Disease (Mito), discussed and continued the Mito cocktail, and discussed previous test results and other symptoms, that wait for it... are symptoms of Mito, and further prove his theory that I have this disease. We also talked about the "risky-ish" medication that I just recently started and how some patients with Mito have worsening symptoms on this specific medication. Over the course of the next several weeks, we will keep a watchful eye for certain signs, and already have a back-up plan in place in case this happens. But, hopefully it won't and I will be one of the few lucky patients who are able to tolerate this medication well, despite the Mito.
For those of you who may not understand what Mitochondrial Disease is, if you would like, you can learn more about this disease by clicking HERE! In a gist, Mito is a dysfunction of the mitochondria. Mitochondria is inside almost every cell in your body. Its job is to produce 90% of the energy your body needs to sustain life. When the mitochondria fails to do its job, less energy is created, therefore cell injury/cell death can follow, resulting in possible organ system failure. The most common damage occurs to the cells of the brain, skeletal muscles, respiratory, endocrine, heart, liver, & kidney systems. There are many symptoms of Mito that spread acro ss the board. The "red flag" for this disea se, is when the patient presents with issues in more than 3 organ systems.
On a different note, we discussed the results of some scans I previously had done. It showed more progression of some of my other illnesses and showed signs of other new issues I didn't know I had. This was pretty disappointing, due to just how much was going on and how much showed up. A comment was made that if I were able to have MRIs done and we did one, it would probably show even more issues and more things going on because it gives a better look than the CT scans do. Obviously, the progression is affecting me. I can feel it, and I can tell, and my symptoms are obvious effects of it. In a couple weeks, I will have my appointment again with my Rheumatologist to further discuss options and what to do next.
That's my update for today's appointment! Until next time my friends!
"You gain strength, courage, & confidence by every experience in which you stop to look fear in the face. You are able to say to yourself 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do." -Eleanor Roosevelt.