NOTE: Please check my other blogs (links on right side of page) to read about everything going on. I'm trying to catch up after being too sick to post for several days.
As I try to keep with the original purpose of each blog I'm struggling to make individual entries in each one. Please bear with me, because I feel incredibly sick and shouldn't even be sitting here typing like I am. I'm persevering just the same... just may not be perfect.
This particular blog was created to journal my health, eating, dieting, fitness, etc. as I try to make my way back to good health again. When I first began posting here my health was failing, but I was still able to do nearly all the normal things I would do in a day; cooking, cleaning, shopping, etc. Like my other blogs I wanted to keep a journal to help both myself and others going through similar experiences. Somewhere along the way--I lost my way. As I became more sick, had less energy, when the weakness began to consume both me and my life, the topic here began to change.
Eventually, I will return to the original purpose I had here.
In the meantime, I'll still try to keep it mostly on-topic, peppered with fragments of life that can and does affect my well-being.
In the beginning here my focus was on juicing and vegetarian/vegan lifestyle (for lack of a better word). What I would find out, but didn't know when I began that journey) is that I was anemic. I began juicing to have better health, to obtain good health, and to increase my energy. Well, a few things went awry, though I did make it 17 days on a juice fast. My choice of vegetarian/vegan lifestyle has been a long time coming as I really could care less about eating meat and animal products and find it didn't sit well with me, morally. Not judging anyone else's choices, but simply speaking about mine.
With the anemia I had to switch back to heme iron sources, which is ONLY found in meat (hence the word 'heme'). After two IV iron infusions and a lot of misery, I made my out of anemia. I've not gone back to vegetarian eating because I've still no idea what caused my anemia and didn't want to hurt my body further by aggravating the situation. So far, knock on wood. My iron and ferritin levels are staying within the normal range.
I've recently found out that I'm lactose intolerant. BOY am I! Ugh. So if I eat anything 'diary' it's yogurt, as it's the one exception for most people. So far I think it's an exception for me.
I've had to be very careful with fruit as well, given serious GI issues that have yet to have a cause identified. It's an every day fight among all the others. I've talked about them today on "All Things Ephemeral," which you'll find a link for on the right.
Over the past few weeks my appetite has been MIA. I also experience early satiety. You might think this is a great thing because it will cause weight loss. Well, it's only a good thing depending on what's causing it, and in my case, having come off prednisone recently, my body is refusing to let go of the prednisone weight. This is normal, btw, and I just have to wait it out. Still, not sure why I have zero appetite.
Typically I have a yogurt for breakfast, a banana for lunch, and attempt a normal dinner, which I often can't finish. After I eat I feel weak and sick and have to lay down, praying that it doesn't cause GI issues and rapid stomach emptying, etc. Not fun, I promise.
My arms are aching terribly from typing, so I have to move on and try to make entries in my other blogs (link list on right of page)....
Showing posts with label anemia. Show all posts
Showing posts with label anemia. Show all posts
Monday, April 18, 2016
Tuesday, January 26, 2016
Autoimmune Hepatitis, Myositis, My Life
One more appointment out of the way. One more trip to the lab to get more blood work. More talk of a secondary AI disease (Myositis), and discussion of Paroxysmal Muscle Weakness. All in a day's work, right? All joking aside, it's just movement in the same direction, albeit slowly but surely.
Getting from point A to point B is mind-over-matter now. The excruciating pain in my lower back I'm told isn't electrolyte-related and is part of the "Myositis" issue. My Hepatologist, if I understand correctly, can't make that diagnosis definitive, as it requires a rheumatologist to do so. This can be very difficult, however, unless one is lucky enough to find a rheumy doc who is also a D.O. Now, I won't go into the whole 'what is a D.O.' thing here because it would just take too much time. What I will say is that I prefer D.O.'s over the average M.D. because their D.O. training means they're trained and take the stance of... looking at the whole person, rather than the parts. In other words, they look at the big picture. My GP is a D.O., and every specialist I have to deal with I tried to choose based on whether he/she is a D.O. (such as my cardiologist).
Mind over matter, literally...
I have to WILL myself through every step I take now. The muscles in my lower back literally LOCK into place the second I stand, preventing walking in a normal way... or sometimes walking at all. In other words USING those muscles is almost out of the question. The leg weakness, the arm weakness, I'm told, is also due to the AIH and most likely even more to the myositis. Myositis is not something anyone wants, trust me, and I'm not sure where it will end.
Geting a definitiv diagnosis isn't really going to be so easy. AI diseases are complex, and many of them have to be, in part, a diagnosis of exclusion, though not always. Many autoimmune antibodies aren't found to be present in about 20%-25% of people with AI disease, and the other factors are sometimes hard to catch. When someone spontaneously goes into remission... that makes it more difficult. With aldolase levels elevated again, with the problems with the muscles in my back, etc... it could be easier to get a diagnosis. Not sure.
Eventually, the Aldolase levels could normalize and stay there, though myositis could be rampant. The reason for this is that Aldolase will decrease as muscle tissue is destroyed, so it's not the most reliable predictor for severity or even presence of the disease. Where I'm lucky in this is that I'm being treated for Autoimmune Hepatitis, which includes Imuran/Azathioprine... which is used to treat myositis as well.
"You're Aldolase is elevated AGAIN. And THAT'S while you're on prednisone and Imuran! Imagine what it would be if you weren't."
He's right, of course. The Aldolase levels are elevated but still somewhat lower than before treatment. Maybe we can stop the destruction of muscle before it gets too bad.
So what am I to make of this? Don't know. Just waiting for the definitive diagnoses so focus can be shifted solely on getting these things in remission.
Prednisone tapered another 5mg, Imuran from 50mg/day to 150mg/day.
This is where things get risky. I can't get a cold and need to avoid situations where infection can happen. With my immune system suppressed to this degree, even a cold can land me in the hospital. So precautions must be taken, and I have to pick and choose where and when or if I go in public and take precautions accordingly. I have to stay clear of sick people at all costs.
I can't do a flu shot until I'm off the prednisone, so that will complicate things further. I SHOULD have gotten a flu shot weeks ago, but I had no idea I would need one that badly. Lesson learned.
Bottom line today is that I'm forcing myself to sit here at the table, to type, to keep on keeping on without succumbing to the call of the couch. Yeah, I would like nothing better than to completely veg out on the sofa... or crawl into bed for a long nap. I have no idea what I'm to give in to.
My next bout of research, though I've done a little preliminary, is to see what I can and cannot do with regards to exercise given that I'm most likely dealing with myositis. The commercial grade (gym quality) exercise bike arrived yesterday and isn't put all the way together just yet. No biggie... it will get done, and I need some time to figure stuff out.
OMG... I'm so tired, my muscles ache. But I think this may be due to the increase in Azathioprine. Boy... am I in for a rough ride, I think.
Signing off.... for now.....
Getting from point A to point B is mind-over-matter now. The excruciating pain in my lower back I'm told isn't electrolyte-related and is part of the "Myositis" issue. My Hepatologist, if I understand correctly, can't make that diagnosis definitive, as it requires a rheumatologist to do so. This can be very difficult, however, unless one is lucky enough to find a rheumy doc who is also a D.O. Now, I won't go into the whole 'what is a D.O.' thing here because it would just take too much time. What I will say is that I prefer D.O.'s over the average M.D. because their D.O. training means they're trained and take the stance of... looking at the whole person, rather than the parts. In other words, they look at the big picture. My GP is a D.O., and every specialist I have to deal with I tried to choose based on whether he/she is a D.O. (such as my cardiologist).
Mind over matter, literally...
I have to WILL myself through every step I take now. The muscles in my lower back literally LOCK into place the second I stand, preventing walking in a normal way... or sometimes walking at all. In other words USING those muscles is almost out of the question. The leg weakness, the arm weakness, I'm told, is also due to the AIH and most likely even more to the myositis. Myositis is not something anyone wants, trust me, and I'm not sure where it will end.
Geting a definitiv diagnosis isn't really going to be so easy. AI diseases are complex, and many of them have to be, in part, a diagnosis of exclusion, though not always. Many autoimmune antibodies aren't found to be present in about 20%-25% of people with AI disease, and the other factors are sometimes hard to catch. When someone spontaneously goes into remission... that makes it more difficult. With aldolase levels elevated again, with the problems with the muscles in my back, etc... it could be easier to get a diagnosis. Not sure.
Eventually, the Aldolase levels could normalize and stay there, though myositis could be rampant. The reason for this is that Aldolase will decrease as muscle tissue is destroyed, so it's not the most reliable predictor for severity or even presence of the disease. Where I'm lucky in this is that I'm being treated for Autoimmune Hepatitis, which includes Imuran/Azathioprine... which is used to treat myositis as well.
"You're Aldolase is elevated AGAIN. And THAT'S while you're on prednisone and Imuran! Imagine what it would be if you weren't."
He's right, of course. The Aldolase levels are elevated but still somewhat lower than before treatment. Maybe we can stop the destruction of muscle before it gets too bad.
So what am I to make of this? Don't know. Just waiting for the definitive diagnoses so focus can be shifted solely on getting these things in remission.
Prednisone tapered another 5mg, Imuran from 50mg/day to 150mg/day.
This is where things get risky. I can't get a cold and need to avoid situations where infection can happen. With my immune system suppressed to this degree, even a cold can land me in the hospital. So precautions must be taken, and I have to pick and choose where and when or if I go in public and take precautions accordingly. I have to stay clear of sick people at all costs.
I can't do a flu shot until I'm off the prednisone, so that will complicate things further. I SHOULD have gotten a flu shot weeks ago, but I had no idea I would need one that badly. Lesson learned.
Bottom line today is that I'm forcing myself to sit here at the table, to type, to keep on keeping on without succumbing to the call of the couch. Yeah, I would like nothing better than to completely veg out on the sofa... or crawl into bed for a long nap. I have no idea what I'm to give in to.
My next bout of research, though I've done a little preliminary, is to see what I can and cannot do with regards to exercise given that I'm most likely dealing with myositis. The commercial grade (gym quality) exercise bike arrived yesterday and isn't put all the way together just yet. No biggie... it will get done, and I need some time to figure stuff out.
OMG... I'm so tired, my muscles ache. But I think this may be due to the increase in Azathioprine. Boy... am I in for a rough ride, I think.
Signing off.... for now.....
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Wednesday, January 20, 2016
Another Day, Another...
I'm going to make this as short as possible, but I vowed to make entries here so I can see where I was and when and what was going on at the time. Weight loss isn't going to happen in the midst of weight gain. Some people are very fortunate to not be on prednisone long enough, or have a dosage high enough, to cause too much damage. But for those of us who have to endure this, the hell of having to choose between what happens WITHOUT treatment for AIH and WITH isn't really a choice at all, unless you have a death wish. UNtreated AIH has an average 5 yr survival rate in many cases, and less than 8 when it comes to terms of cirrhosis developing if it's absent at the time of diagnosis. Those are ugly odds. So we take our medipoison and hunker down for a long and rough ride to remission.
Diet--meal planning--cooking--eating--and my body's reaction to any of those differ from one day to the next. And by the end of the day my body is NOT my friend. It's another day in prednisone hell and I'm not handling this well for the most part.
I can't define the excruciating back pain that came on board almost two weeks ago. I've felt it before, and it went away quickly when I received 2 IV iron infusions for anemia. So is the anemia back? Why won't any of my doctors test for ferritin again to check this? SOMETHING is causing severe back pain that even prednisone can't touch! That's kind of a big deal since prednisone is often prescribed FOR back pain! What gives? I may end up having to call the hematologist to see if I can get re-tested based on symptoms. It's a simple test done right in his office, and though the results take about 3 days to come back.. at least I'll know if low ferritin and/or iron in my blood is to blame. Because honestly, this sucks worse than the AIH symptoms.
In the meantime, I choose what I eat based on how long or IF I'm able to stand there and cook, make a sandwich, etc. Yeah, it's THAT severe.
It's just another day in my life on planet earth...
Thursday, January 14, 2016
Almond Milk, Shakeology, and DAMMIT I'm sick!
Okay, so not like with a cold or flu, because not only would that make actual SENSE, but it could land me in the hospital with pneumonia; happens to those on immunosuppressants. But today I'm dealing with nausea. Intense nausea. I'm down a couple of cups of my usual coffee quota, and I'm here to tell you that the idea of drinking or eating anything at all is trying to make me yack. No really. Not joking.
I'm going to try, though, you know... having another coffee. Because I'm just hardcore like that. Or ninja. I'll take either.
No shakeology today again. I didn't want to risk another bout of what happened yesterday as my GI tract is NOT happy about something. I have purchased some almond milk in order to nix the diary out of my diet again. Maybe that's wreaking havoc or playing with fire in some ways, so no real reason to continue poking the bear in that respect. Listening to my body has become a skill I've almost mastered. Kind of a have-to skill-set I must say. At least in my case.
Anemia: You guys may remember I had to deal with that and had two IV iron infusions a few months ago to remedy the situation. Prior to the diagnosis I was dealing with horrendous back pain, body pain, nausea, loss of appetite, and several other issues. Now, much of that continued past the IV iron infusions as they were the result of the Autoimmune Hepatitis I have and didn't know I had then. But my backache went away, and some of the nausea. Not all, but it took the edge off. So with the return of a lot of the symptoms I've been dealing with, and considering I now have a bleeding GI tract, maybe my ferritin has plummeted. I hope not, because I re-introduced meat, of all things, back into my diet to help heal the anemia. Heme iron is superior for the body and doesn't require any food combinations or supplements. Once I get my health back on track I'm going back to vegetarian/vegan. It's a moral choice, and also.. I really don't like meat that much.
This nausea is driving me crazy. I have the shakes, sick to my stomach, nausea feeling in the back of my throat, and I have a sore tongue. Oh, and lets not forget that despite the prednisone I'm still on... my appetite left the building like Elvis today. Good grief, I wish my body would make up its mind.
So what to do? Most likely will have to call my hematologist and request ferritin testing again, just to be sure. Just in case.
I'm tired of blood tests, to tell you the truth. I don't mind the needle, etc. I just really hate having to go to the hospital or doctor's office to have it done so often.
Sheesh.
My stomach... ugh.
I'm going to try, though, you know... having another coffee. Because I'm just hardcore like that. Or ninja. I'll take either.
No shakeology today again. I didn't want to risk another bout of what happened yesterday as my GI tract is NOT happy about something. I have purchased some almond milk in order to nix the diary out of my diet again. Maybe that's wreaking havoc or playing with fire in some ways, so no real reason to continue poking the bear in that respect. Listening to my body has become a skill I've almost mastered. Kind of a have-to skill-set I must say. At least in my case.
Anemia: You guys may remember I had to deal with that and had two IV iron infusions a few months ago to remedy the situation. Prior to the diagnosis I was dealing with horrendous back pain, body pain, nausea, loss of appetite, and several other issues. Now, much of that continued past the IV iron infusions as they were the result of the Autoimmune Hepatitis I have and didn't know I had then. But my backache went away, and some of the nausea. Not all, but it took the edge off. So with the return of a lot of the symptoms I've been dealing with, and considering I now have a bleeding GI tract, maybe my ferritin has plummeted. I hope not, because I re-introduced meat, of all things, back into my diet to help heal the anemia. Heme iron is superior for the body and doesn't require any food combinations or supplements. Once I get my health back on track I'm going back to vegetarian/vegan. It's a moral choice, and also.. I really don't like meat that much.
This nausea is driving me crazy. I have the shakes, sick to my stomach, nausea feeling in the back of my throat, and I have a sore tongue. Oh, and lets not forget that despite the prednisone I'm still on... my appetite left the building like Elvis today. Good grief, I wish my body would make up its mind.
So what to do? Most likely will have to call my hematologist and request ferritin testing again, just to be sure. Just in case.
I'm tired of blood tests, to tell you the truth. I don't mind the needle, etc. I just really hate having to go to the hospital or doctor's office to have it done so often.
Sheesh.
My stomach... ugh.
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Monday, September 28, 2015
Post-Haste Nutrition
Well. Sort of. My first scheduled IV iron infusion is this week (Wednesday), and I'm curious to see how my body will respond to this much-needed treatment. While so much is going on, a bigger part of me is intensely hopeful that this, and addressing other issues, will be one of the biggest turning points with my health and happiness (or lack thereof). And trust me, if you don't have good health, having any happiness is something you have to actively seek. I believe happiness should just 'be.' Sounds overly simplistic and unrealistic at first, but all of us know in our heart of hearts that this is exactly the way happiness works.
Dare to dream, dare to move, dare to question absolutely everything that's going wrong; this is what I'm doing now. Even I know that I can't rely on infusions to create happiness. But it's a great place to start.
Clearly my approach with my health has been with the very best of intentions, and the progress of uncovering what needs correcting has been revealed to a point that I have some direction to follow, finally. There on the horizon I can finally see the sun. My next step... is to feel the warmth. THAT'S when I know I'm getting there!
Another recent event was the sleep study, which revealed central sleep apnea. Some speculation has been made that my low vitamin D (which is actually a hormone, btw) is causing a chain-reaction of health issues. Funny thing, though, is that a simple correction of Vitamin D levels won't do the trick. So I'm also having to embark of the sleep apnea thing, and it seems as if it's all very related. No matter, I'll just be a nice, compliant patient and follow all rules of treatment with regards to the sleep apnea, iron deficiency, and vitamin D deficiency. As for the lung issues, heart issues, etc... well those will have to wait until my next appt with my pulmonologist and cardiologist.
My goal is to resolve the issues, get my energy back, and work like hell to get back on top of things again.
As for the f'd up relationship issues, those will be addressed by T, or I will continue to allow what comes naturally; self-preservation.
Stay tuned, because once the post-haste nutrition (IV iron infusion) is administered, and all other treatments are underway, I fully expect to find my courage to FINALLY speak bluntly here again.
It will happen.
Dare to dream, dare to move, dare to question absolutely everything that's going wrong; this is what I'm doing now. Even I know that I can't rely on infusions to create happiness. But it's a great place to start.
Clearly my approach with my health has been with the very best of intentions, and the progress of uncovering what needs correcting has been revealed to a point that I have some direction to follow, finally. There on the horizon I can finally see the sun. My next step... is to feel the warmth. THAT'S when I know I'm getting there!
Another recent event was the sleep study, which revealed central sleep apnea. Some speculation has been made that my low vitamin D (which is actually a hormone, btw) is causing a chain-reaction of health issues. Funny thing, though, is that a simple correction of Vitamin D levels won't do the trick. So I'm also having to embark of the sleep apnea thing, and it seems as if it's all very related. No matter, I'll just be a nice, compliant patient and follow all rules of treatment with regards to the sleep apnea, iron deficiency, and vitamin D deficiency. As for the lung issues, heart issues, etc... well those will have to wait until my next appt with my pulmonologist and cardiologist.
My goal is to resolve the issues, get my energy back, and work like hell to get back on top of things again.
As for the f'd up relationship issues, those will be addressed by T, or I will continue to allow what comes naturally; self-preservation.
Stay tuned, because once the post-haste nutrition (IV iron infusion) is administered, and all other treatments are underway, I fully expect to find my courage to FINALLY speak bluntly here again.
It will happen.
Labels:
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Friday, September 25, 2015
Boo's Juicy Bits, and the Return to Focus
This blog began as a ways and means to talk, often with humor, about health, wholeness, eating, thriving, living, body/mind/soul, and sometimes to share the naughty side of me. It's gotten WAY off-track over the past few months due to declining health. Well, those health issues are being addressed, and treatment begins today/tonight.. and next week. At least with regards to the issues of sleep apnea and iron deficiency anemia.
Getting back on track with posting and sharing here is going to be a major switch in some ways, as I've had to focus far too much on doctor appointments, treatments, and so forth. But I think it's time, you know, to get back to the part of 'living.' Doesn't mean I won't have moments where I vent about my relationship issues, dreams, passions, and the like. It just means that I think since I'm on my way to resolutions for my health issues... it's time to focus on what's ahead.
It just makes good sense.
So what's next with diet, exercise, vibrant physical, mental/emotional health? Well, that's just the thing. Tonight will be the first night I use a CPAP machine, and I already know the one night I used it at the sleep center.. I felt quite different the following day, and I returned to my usual fatigued, miserable self the night after WITHOUT the CPAP. I see much hope in that. And with next week being the first treatment for the iron deficiency.. I'm actually getting excited about seeing things improve over the days and weeks ahead. This is going to be a journey of my life, really.
As my focus shifts to hopeful events, positive outcomes, and anticipation for those things not yet addressed (lung and heart issues), I will also have a lot more focus here.
It's about time, isn't it? ;)
Getting back on track with posting and sharing here is going to be a major switch in some ways, as I've had to focus far too much on doctor appointments, treatments, and so forth. But I think it's time, you know, to get back to the part of 'living.' Doesn't mean I won't have moments where I vent about my relationship issues, dreams, passions, and the like. It just means that I think since I'm on my way to resolutions for my health issues... it's time to focus on what's ahead.
It just makes good sense.
So what's next with diet, exercise, vibrant physical, mental/emotional health? Well, that's just the thing. Tonight will be the first night I use a CPAP machine, and I already know the one night I used it at the sleep center.. I felt quite different the following day, and I returned to my usual fatigued, miserable self the night after WITHOUT the CPAP. I see much hope in that. And with next week being the first treatment for the iron deficiency.. I'm actually getting excited about seeing things improve over the days and weeks ahead. This is going to be a journey of my life, really.
As my focus shifts to hopeful events, positive outcomes, and anticipation for those things not yet addressed (lung and heart issues), I will also have a lot more focus here.
It's about time, isn't it? ;)
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Tuesday, September 22, 2015
PART 1: IV infusion... here's to more energy and lack of major symptoms?
So I got the call yesterday that my labs confirmed the iron deficiency and that I will be scheduled for an IV infusion. It will take about 30 minutes for the infusion (not bad), and another 30 mins for observation for any reactions...which can be quite severe/dangerous (anaphylactic shock). Then I have to go for a second treatment one week later, then it's observation from there to watch for any declines in ferritin, and also to see if the levels are increasing to where they should be.
I'm really hoping this will take care of the awful fatigue and other symptoms, which may not be all due to the ID/IDA with all the other issues going on. It will be nice to have my body temp in a more normal range where I don't feel as if I'm freezing all of the time. My temp at the doctor's office yesterday was 96.0*F.. it's been running very low like that for some time, I'm assuming, from the ID/IDA.
Let's just say... these are all steps in the direction of obtaining better health.
I'm really hoping this will take care of the awful fatigue and other symptoms, which may not be all due to the ID/IDA with all the other issues going on. It will be nice to have my body temp in a more normal range where I don't feel as if I'm freezing all of the time. My temp at the doctor's office yesterday was 96.0*F.. it's been running very low like that for some time, I'm assuming, from the ID/IDA.
Let's just say... these are all steps in the direction of obtaining better health.
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Monday, September 21, 2015
Infusion Confusion and Various Other Junk and Stuff
One step at a time. How many times have I said that statement? Well, I'm still in the process of figuring things out. Or, at least the doctors are figuring things out. Either way, though progress looks slow, it's still progress. I'll take it.
Saw the hematologist this morning. He ordered new labs to re-check my ferritin level so we can proceed with addressing the low iron/ferritin. The levels have to be re-checked to confirm that the problem is still there, and if it is (which he suspects) he wants to address it with IV therapy (iron infusion). It will take 2 treatments, one week apart. Then once the treatments are done my ferritin/iron levels will be monitored over time to make sure it doesn't begin to drop again. They won't have my lab results back until later this afternoon, and if it shows low ferritin again.. they'll make an appointment for the IV infusion. Could be worse! Some folks have to have an actual blood transfusion if it gets too bad! Mine isn't that bad, thank goodness.
Pulmonary issues still to go. Have to do the breathing test, which I'm assuming is because of the "Mild, scattered scarring" in my lungs. Which I don't understand at all and try not to think about too much. It's all still up in the air at the moment as to where my pulmonologist will take things. We will see. Just hoping the chronic cough I have is just the low iron.
Still in the wait-and-see phase.
Now... about those damn dreams again!.......
Saw the hematologist this morning. He ordered new labs to re-check my ferritin level so we can proceed with addressing the low iron/ferritin. The levels have to be re-checked to confirm that the problem is still there, and if it is (which he suspects) he wants to address it with IV therapy (iron infusion). It will take 2 treatments, one week apart. Then once the treatments are done my ferritin/iron levels will be monitored over time to make sure it doesn't begin to drop again. They won't have my lab results back until later this afternoon, and if it shows low ferritin again.. they'll make an appointment for the IV infusion. Could be worse! Some folks have to have an actual blood transfusion if it gets too bad! Mine isn't that bad, thank goodness.
Pulmonary issues still to go. Have to do the breathing test, which I'm assuming is because of the "Mild, scattered scarring" in my lungs. Which I don't understand at all and try not to think about too much. It's all still up in the air at the moment as to where my pulmonologist will take things. We will see. Just hoping the chronic cough I have is just the low iron.
Still in the wait-and-see phase.
Now... about those damn dreams again!.......
Thursday, September 10, 2015
You found a what?
Well, yesterday's appt did NOT go the way I expected. At all. Not. At. All.
So I went for my follow-up appointment with my pulmonologist yesterday, mostly to discuss chest CT and sleep study results. The minor part is that they found 'mild sleep apnea.' Ok. Then he went on to discuss the lung nodule...and something else they found on the CT.
Doctor F stated that the lung nodule was slightly larger, but it also is "Very strange looking." He went on to explain that there is a "Tubule" attached to the nodule that the radiologist says "May" be due to an impacted/clogged something-or-other-that-I-can't-rember due to my inability to sleep work a f*ck! Sorry for the potty mouth, but it's true. Anyway, the nodule is odd and he said he has to "Think about it a bit..." and may possibly do another CT scan, only with contrast this time. He's not sure, because he doesn't know what to make of the findings.
Then he said there is another nodule... 1.9 x .5 cm... in my breast. Well K den.
Next week I have to have another mammogram, and they're insisting they MUST have the last one that I had first, the imaging. I'm a little spooked by this. No one is telling me the characteristics of the nodule, and now I understand why the imaging center flat refused to give me a copy of the report... that was finished the day after my CT. Normally.. I have no issues getting copies of lab or imaging reports.
I also have to see a hematologist (possibly) for the anemia, because the colonoscopy and EGD did NOT show any causes of the anemia. I will start Rx iron pills today or tomorrow, though. Hoping I can tolerate those.
Now the big, fat, giant wait. Again. Seriously?
I'm nervous about the mammogram, obviously, but the worst part is T's attitude. He is just mostly put out because I wanted him to give me a ride there, to be with me while I have this screening. He basically complained, meaning it was an inconvenience. I simply told him, never mind... I will take myself! I certainly don't need some whining, self-absorbed, watch-checking complainer coming with me on THE SCARIEST and most stressful test to-date. Mr. Indifference needs to keep his distance, because what I need right now is far from whining, complaining, etc.
Yes. It's time to be a little pissed about this. And I am.
Dammit!!
So what of the heart, home, a place where my soul can feel uplifted, rejuvenated, allowed to grow and breathe and soar? Dunno. Still waiting on that one, I guess. Dealing with the anemia is a start. PC doc is referring me to a hematologist to see what the cause is.
Dammit again!
*sigh*
So I went for my follow-up appointment with my pulmonologist yesterday, mostly to discuss chest CT and sleep study results. The minor part is that they found 'mild sleep apnea.' Ok. Then he went on to discuss the lung nodule...and something else they found on the CT.
Doctor F stated that the lung nodule was slightly larger, but it also is "Very strange looking." He went on to explain that there is a "Tubule" attached to the nodule that the radiologist says "May" be due to an impacted/clogged something-or-other-that-I-can't-rember due to my inability to sleep work a f*ck! Sorry for the potty mouth, but it's true. Anyway, the nodule is odd and he said he has to "Think about it a bit..." and may possibly do another CT scan, only with contrast this time. He's not sure, because he doesn't know what to make of the findings.
Then he said there is another nodule... 1.9 x .5 cm... in my breast. Well K den.
Next week I have to have another mammogram, and they're insisting they MUST have the last one that I had first, the imaging. I'm a little spooked by this. No one is telling me the characteristics of the nodule, and now I understand why the imaging center flat refused to give me a copy of the report... that was finished the day after my CT. Normally.. I have no issues getting copies of lab or imaging reports.
I also have to see a hematologist (possibly) for the anemia, because the colonoscopy and EGD did NOT show any causes of the anemia. I will start Rx iron pills today or tomorrow, though. Hoping I can tolerate those.
Now the big, fat, giant wait. Again. Seriously?
I'm nervous about the mammogram, obviously, but the worst part is T's attitude. He is just mostly put out because I wanted him to give me a ride there, to be with me while I have this screening. He basically complained, meaning it was an inconvenience. I simply told him, never mind... I will take myself! I certainly don't need some whining, self-absorbed, watch-checking complainer coming with me on THE SCARIEST and most stressful test to-date. Mr. Indifference needs to keep his distance, because what I need right now is far from whining, complaining, etc.
Yes. It's time to be a little pissed about this. And I am.
Dammit!!
So what of the heart, home, a place where my soul can feel uplifted, rejuvenated, allowed to grow and breathe and soar? Dunno. Still waiting on that one, I guess. Dealing with the anemia is a start. PC doc is referring me to a hematologist to see what the cause is.
Dammit again!
*sigh*
Friday, September 4, 2015
Where this will lead... eventually
Note: Remember, if you're seeking to know all that's going on with me... don't forget about my other two blogs... All Things Ephemeral and Where Fireflies Dream. See the bar on the right for the links.
Okay. So, why is this blog vastly different than what I set it out to be? Easy to explain that one-- my damn life got complicated and things ended up in a tangled mess. They still are, but... since this blog is basically about health, heating, and diet/way of eating... you can't really have those things addressed in a static background that includes no signs of life. What I mean by that is... your attitude, actual health, quality of life (or lack thereof), emotions, personal environment, emotional state, and more.. has EVERYTHING to do with success or failure.
History keeps it all in check. There is some documented history here of where I began and where I am, both all important to the end result. It's really quite simple in that the journey is still the journey, no matter how many paths I've strayed onto while heading in a particular direction. Nothing is EVER a straight line in life---until you die. ;p
I'm still on the path to improving my health, to finding myself again, to reclaiming what is mine (my life). I may have stopped to rest on occasion, but I'm still on that journey and will NOT give up until I find that momentum, the right path. Progress, no matter what it looks like, is still progress.
I don't see any reason to think that I won't be anything but successful in this. I will be. I do need to exercise patience as I deal with the Iron Deficiency Anemia, Grade 2 Diastolic Dysfunction. But I can do that.
... Sorry to cut things short here, but I'm utterly exhausted.
More later.....
Okay. So, why is this blog vastly different than what I set it out to be? Easy to explain that one-- my damn life got complicated and things ended up in a tangled mess. They still are, but... since this blog is basically about health, heating, and diet/way of eating... you can't really have those things addressed in a static background that includes no signs of life. What I mean by that is... your attitude, actual health, quality of life (or lack thereof), emotions, personal environment, emotional state, and more.. has EVERYTHING to do with success or failure.
History keeps it all in check. There is some documented history here of where I began and where I am, both all important to the end result. It's really quite simple in that the journey is still the journey, no matter how many paths I've strayed onto while heading in a particular direction. Nothing is EVER a straight line in life---until you die. ;p
I'm still on the path to improving my health, to finding myself again, to reclaiming what is mine (my life). I may have stopped to rest on occasion, but I'm still on that journey and will NOT give up until I find that momentum, the right path. Progress, no matter what it looks like, is still progress.
I don't see any reason to think that I won't be anything but successful in this. I will be. I do need to exercise patience as I deal with the Iron Deficiency Anemia, Grade 2 Diastolic Dysfunction. But I can do that.
... Sorry to cut things short here, but I'm utterly exhausted.
More later.....
Labels:
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diastolic dysfunction,
emotion,
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Saturday, August 29, 2015
Damn thing won't stop beeping
Day 2 with the heart monitor, and it just won't stop beeping. Okay, so there are pauses, but there have been SO many... I didn't get this many when I had SVT, AFib, and atrial flutter. Weird. For those who don't know how an event monitor works, you basically wear a portable EKG that comes with a monitor that records everything your heart does, and a wireless communicator that sends the information to the monitoring center. Yes, you're actually monitored the entire time, 24/7, by real people. This is not the same thing as a Holter monitor where you have the recorder only.
So when an 'event' occurs, one that you know of, you hit the button at the top of the monitor to mark the EKG, then the communicator asks what happened (palpitations, chest pain, shortness of breath, etc.), then it asks what you were doing when it happened (nothing, walking, exercising, etc.). And whether or not you FEEL what happens, 'they' know..and it's recorded anyway and uploaded to the monitoring center's software.
When I speak of 'beeps,' there are actually 2 that happen during the event. The first beep says something is happening and being recorded (blinking green light goes solid)...which takes approximately a minute, and the second beep says that event has been marked and is being uploaded (alternating blinking green and blue lights). Nothing on the communicator asks you to state what happened or what you were doing because, if you didn't push the button, you're not aware anything happened anyway.
Basically, it beeps often when I'm standing, and it beeps nearly every time I bend over to pick something up off the floor. It's also been beeping while laying down (like last night), and also when I'm just sitting and talking to someone. This is not the way this usually goes for me, so I don't know what it's picking up. Possibly PVCs, which most people have and aren't often aware of. Thing is... I've never had a monitor go off as much as I have the past 24 hrs. I have to wear this for 4 days, and it's procedure as a one year follow-up after a cardiac ablation. It's meant to make sure episodes of the arrhythmia(s) aren't happening and determines wether or not the ablation(s) was/were successful or not.
Now, I have iron deficiency anemia, and it's NOT being treated. So that could possibly explain anything my heart is doing. Or it could be something related to the Grade II Diastolic Dysfunction I've recently be diagnosed with. Not sure. Honestly, I first thought I had a defective monitor, but the monitoring center ALWAYS knows if something's wrong and calls to recalibrate or decide if they need to send another monitor. So far, no calls. This is good in that nothing serious is happening. ;)
I know. Blah blah blah. I will get to more personal matters later on.
So when an 'event' occurs, one that you know of, you hit the button at the top of the monitor to mark the EKG, then the communicator asks what happened (palpitations, chest pain, shortness of breath, etc.), then it asks what you were doing when it happened (nothing, walking, exercising, etc.). And whether or not you FEEL what happens, 'they' know..and it's recorded anyway and uploaded to the monitoring center's software.
When I speak of 'beeps,' there are actually 2 that happen during the event. The first beep says something is happening and being recorded (blinking green light goes solid)...which takes approximately a minute, and the second beep says that event has been marked and is being uploaded (alternating blinking green and blue lights). Nothing on the communicator asks you to state what happened or what you were doing because, if you didn't push the button, you're not aware anything happened anyway.
Basically, it beeps often when I'm standing, and it beeps nearly every time I bend over to pick something up off the floor. It's also been beeping while laying down (like last night), and also when I'm just sitting and talking to someone. This is not the way this usually goes for me, so I don't know what it's picking up. Possibly PVCs, which most people have and aren't often aware of. Thing is... I've never had a monitor go off as much as I have the past 24 hrs. I have to wear this for 4 days, and it's procedure as a one year follow-up after a cardiac ablation. It's meant to make sure episodes of the arrhythmia(s) aren't happening and determines wether or not the ablation(s) was/were successful or not.
Now, I have iron deficiency anemia, and it's NOT being treated. So that could possibly explain anything my heart is doing. Or it could be something related to the Grade II Diastolic Dysfunction I've recently be diagnosed with. Not sure. Honestly, I first thought I had a defective monitor, but the monitoring center ALWAYS knows if something's wrong and calls to recalibrate or decide if they need to send another monitor. So far, no calls. This is good in that nothing serious is happening. ;)
I know. Blah blah blah. I will get to more personal matters later on.
Tuesday, August 25, 2015
I did the most disgusting thing yesterday
As confessions go, I have to say that facing the radical diet changes I'm facing, I thought it was time to step out on that ledge and test the waters. Now, I've been working on a vegetarian/vegan diet for a few months, which means strictly no meat (easy for me) and trying to avoid dairy at all costs. The latter has been difficult because they put milk, whey, etc. in just about everything, even potato chips. WTH? Not that I need to eat potato chips, because I definitely don't, but it's shocking how much dairy is in processed foods. Now, the flip side to this is... I've become exceedingly sensitive to dairy, and trust me when I say it's best I spare you the details. But even without the details let's just say that a plant-based diet is the right diet for me. Now... having said that, let me add a big, fat 'however' to the mix. Yeah. We all get ourselves into trouble with the 'however,' issues.. don't we?
I've cut out dairy and meat, and I like that. A lot. It works for me. However...I may have to add fish back into my diet due to the anemia I'm trying to resolve in hopes that it won't take MONTHS for it to resolve. And for the record, I know and have been assured that the anemia is NOT from having a plant-based diet. I understand the difference between heme (meat, etc.) and non-heme (beans, peas, lentils, kale and other green leafy veggies, raisins, etc. etc.) iron and what I have to do to ensure proper absorption of that non-heme iron (vitamin C helps with absorption). And it takes 2-4 years of a totally STRICT vegan/vegetarian diet for iron stores to become depleted. By 'strict' I mean.. absolutely no meat, dairy, and no processed foods whatsoever. Processed foods are often supplemented with iron (wheat, bread, pasta, etc.). Most anemia is due to a health issue or bleeding. We've no idea what's causing mine yet.
So, about that totally disgusting thing I did yesterday....
I ate a couple of bites of meat. Ham, which I was opposed to eating even before I went to a plant-based diet. It. Was. SO. Disgusting! It actually tasted like someone had given me pieces of salt-infused leather to eat! Never again!
I have to try fish this week sometime. I should have done it already, but I've been putting it off because, honestly, the idea just grosses me out like you wouldn't believe. And back when I did eat meat, salmon was probably my favorite fish. Over time, however, I got to where I didn't like it anymore. Honestly, it isn't hard AT ALL for me to not eat meat. I don't ever crave it, and it just tastes and feels wrong in my mouth.
So the meat experiment was an epic failure. I'm okay with that. More than okay. I now have to see what happens when I try to eat salmon or other fish. So exactly what's that about??....
Well, salmon is a source of heme iron, and one I may be able to tolerate until my doctor gets to the bottom of this whole anemia thing. It's not safe to self-supplement with iron as it can cause great harm to your health if you're not getting the correct dose. It's not something you want to mess with. Foods with iron are a great way to keep anemia at bay IF your health is normal. But you can't replenish your iron stores with food when you're anemic, and when you do get supplements from your doctor, and even if your anemia is so bad you require transfusions, it STILL takes a very long time to correct iron deficiency anemia. Many say it takes about a year.
I've no idea yet how bad my anemia is. My doctor just looked at my labs and said I'm anemic then set about to find out WHY. The first usual suspect is hidden bleeding, and we've found no source yet. The small intestine isn't accessible during EGD and requires the little pill camera to see what's going on in there. Not sure we'll go that route, but it's a possibility. Another issue that can cause it is bone marrow disorder. Not sure we're going there either. But something is certainly causing me to have anemia, and in the meantime.. I can begin taking in a little heme iron and making sure I supplement any non heme sources with a form of vitamin C.
.... I can tell you this, however... I am NOT going to experience the meat thing again. Seriously. Yuck! Not sure I can even do fish, but.. we're certainly going to find out.
I've cut out dairy and meat, and I like that. A lot. It works for me. However...I may have to add fish back into my diet due to the anemia I'm trying to resolve in hopes that it won't take MONTHS for it to resolve. And for the record, I know and have been assured that the anemia is NOT from having a plant-based diet. I understand the difference between heme (meat, etc.) and non-heme (beans, peas, lentils, kale and other green leafy veggies, raisins, etc. etc.) iron and what I have to do to ensure proper absorption of that non-heme iron (vitamin C helps with absorption). And it takes 2-4 years of a totally STRICT vegan/vegetarian diet for iron stores to become depleted. By 'strict' I mean.. absolutely no meat, dairy, and no processed foods whatsoever. Processed foods are often supplemented with iron (wheat, bread, pasta, etc.). Most anemia is due to a health issue or bleeding. We've no idea what's causing mine yet.
So, about that totally disgusting thing I did yesterday....
I ate a couple of bites of meat. Ham, which I was opposed to eating even before I went to a plant-based diet. It. Was. SO. Disgusting! It actually tasted like someone had given me pieces of salt-infused leather to eat! Never again!
I have to try fish this week sometime. I should have done it already, but I've been putting it off because, honestly, the idea just grosses me out like you wouldn't believe. And back when I did eat meat, salmon was probably my favorite fish. Over time, however, I got to where I didn't like it anymore. Honestly, it isn't hard AT ALL for me to not eat meat. I don't ever crave it, and it just tastes and feels wrong in my mouth.
So the meat experiment was an epic failure. I'm okay with that. More than okay. I now have to see what happens when I try to eat salmon or other fish. So exactly what's that about??....
Well, salmon is a source of heme iron, and one I may be able to tolerate until my doctor gets to the bottom of this whole anemia thing. It's not safe to self-supplement with iron as it can cause great harm to your health if you're not getting the correct dose. It's not something you want to mess with. Foods with iron are a great way to keep anemia at bay IF your health is normal. But you can't replenish your iron stores with food when you're anemic, and when you do get supplements from your doctor, and even if your anemia is so bad you require transfusions, it STILL takes a very long time to correct iron deficiency anemia. Many say it takes about a year.
I've no idea yet how bad my anemia is. My doctor just looked at my labs and said I'm anemic then set about to find out WHY. The first usual suspect is hidden bleeding, and we've found no source yet. The small intestine isn't accessible during EGD and requires the little pill camera to see what's going on in there. Not sure we'll go that route, but it's a possibility. Another issue that can cause it is bone marrow disorder. Not sure we're going there either. But something is certainly causing me to have anemia, and in the meantime.. I can begin taking in a little heme iron and making sure I supplement any non heme sources with a form of vitamin C.
.... I can tell you this, however... I am NOT going to experience the meat thing again. Seriously. Yuck! Not sure I can even do fish, but.. we're certainly going to find out.
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