More Studies; No Answers
Over the past couple of months, I've been in and out of doctors' appointments, medical studies, etc. It's been very tiresome and one thing I am grateful for is that so far most of my tests has come back negative. Yet, the flip side to this is that doctors are baffled at what is causing my increased medical issues which are:
--increased head pain
--increased abdominal pain
--increased confusion/cognitive issues, including falling for no apparent reason
(Side note: For those of you wondering, my increased cognitive issues is a bit scary. Imagine yourself "wondering" around somewhere, knowing you are suppose to find someone/something, but you just feel "lost" or just not realizing where you are or what time of day it is. My Mom has seen this on numerous occasions).
I had a neurology followup a couple weeks ago and my doctor figured it would be a good idea to have an MRI to see if there were any NF tumors in my brain that could cause any of these symptoms. Those of you who knows me, knows that I absolutely HATE MRIs. Thankfully, I was sedated well and basically wasn't too aware of what was going on around me. However, when the technician gave me the contrast dye, it apparently didn't go in correctly and the second half of the MRI wasn't completed correctly. I was NOT a happy camper when the radiologist called me three days later and told me they had to repeat the second half of the test. Fortunately, I was already going to be at UVA the following day to see my neuro-ophthalmologist, and they were able to squeeze me in that same day. This time, the contrast dye did go in correctly. The MRI results didn't show any new tumors or any changes since five years ago, which is a good thing. So, my neurologist still isn't sure what is causing all this increased pressure, pain, and cognitive issues. We are all dumbfounded, and I'm just tired of all this pain; but again, through it all, I try my hardest to trust God in this.
As if that weren't enough, over the past couple of months, I have once again started to have a lot of swallowing and regurgitation issues. It's been to the point that eating was painful and at times drinking was painful. I went back to my GI doctor at Augusta Health and she seems to believe that despite previous beliefs of my having hiatal hernias as a main cause of swallowing and regurgitation issues, she believes that my esophageal opening is a little too big (based on pictures from previous scope tests) and that could be a cause as well. I have been set up with a couple of tests in December to check this out and to see if any other form of action needs to be done. She's is NOT a believer in medication like Nexium, Previcid, etc, which I'm so glad, because I hate taking those things, and she really doesn't think it well help my case in the long run anyhow. So, we'll have to see how the studies going on the second week in December!
Abdominal pain remains the same. I get relief from the injections for about 6 weeks and then I'm in pain again. It's just a never-ending battle for me and honestly, I'm so tired of having to be admitted as an outpatient, just to get treatment. I go back for another treatment December 7th. I've learned not to ask my doctors "what is causing all my pain?" because I know they are just as frustrated as I am. There HAS to be an answer somewhere, but where? Why can't we find an answer? Where is the answer hidden? Ugh!
I have few days of feeling well, where I can actually do something fun; those days are limited and I savor those days and enjoy it. I enjoy times I can exercise or do other fun activities.
But, most days are rough. And I tend to just sit in my chair, read a book, play on my tablet, etc. I listen to a lot of music, and mostly try to listen to God through the music. I love reclining in my recliner, opening up my tablet to my book I'm reading, putting on my iTunes and listening to music (and, no, I've not yet put on Christmas music yet....) It's so easy to go into despair when you aren't feeling well. You become so wrapped up in yourself and wonder "why", "when?" "how long?", etc more often then one realizes.
I'm so grateful for e-mail, texts, and Facebook, so that I can keep up with friends far and near. I love being able to hear from them and to be able to know how to pray for them and to hear their own testimony of how God is using them. This is my distraction. It doesn't have to be anything big or anything small someone is going through; I'll pray. Yes, my situation (as well as others who have physical issues), is rough, but we all are going through SOMETHING so we suffer (or rejoice) not alone in everything that we do or seek.
So I close by saying thank you for all your prayers on my behalf. Let me know how I could pray for you.
--increased head pain
--increased abdominal pain
--increased confusion/cognitive issues, including falling for no apparent reason
(Side note: For those of you wondering, my increased cognitive issues is a bit scary. Imagine yourself "wondering" around somewhere, knowing you are suppose to find someone/something, but you just feel "lost" or just not realizing where you are or what time of day it is. My Mom has seen this on numerous occasions).
I had a neurology followup a couple weeks ago and my doctor figured it would be a good idea to have an MRI to see if there were any NF tumors in my brain that could cause any of these symptoms. Those of you who knows me, knows that I absolutely HATE MRIs. Thankfully, I was sedated well and basically wasn't too aware of what was going on around me. However, when the technician gave me the contrast dye, it apparently didn't go in correctly and the second half of the MRI wasn't completed correctly. I was NOT a happy camper when the radiologist called me three days later and told me they had to repeat the second half of the test. Fortunately, I was already going to be at UVA the following day to see my neuro-ophthalmologist, and they were able to squeeze me in that same day. This time, the contrast dye did go in correctly. The MRI results didn't show any new tumors or any changes since five years ago, which is a good thing. So, my neurologist still isn't sure what is causing all this increased pressure, pain, and cognitive issues. We are all dumbfounded, and I'm just tired of all this pain; but again, through it all, I try my hardest to trust God in this.
As if that weren't enough, over the past couple of months, I have once again started to have a lot of swallowing and regurgitation issues. It's been to the point that eating was painful and at times drinking was painful. I went back to my GI doctor at Augusta Health and she seems to believe that despite previous beliefs of my having hiatal hernias as a main cause of swallowing and regurgitation issues, she believes that my esophageal opening is a little too big (based on pictures from previous scope tests) and that could be a cause as well. I have been set up with a couple of tests in December to check this out and to see if any other form of action needs to be done. She's is NOT a believer in medication like Nexium, Previcid, etc, which I'm so glad, because I hate taking those things, and she really doesn't think it well help my case in the long run anyhow. So, we'll have to see how the studies going on the second week in December!
Abdominal pain remains the same. I get relief from the injections for about 6 weeks and then I'm in pain again. It's just a never-ending battle for me and honestly, I'm so tired of having to be admitted as an outpatient, just to get treatment. I go back for another treatment December 7th. I've learned not to ask my doctors "what is causing all my pain?" because I know they are just as frustrated as I am. There HAS to be an answer somewhere, but where? Why can't we find an answer? Where is the answer hidden? Ugh!
I have few days of feeling well, where I can actually do something fun; those days are limited and I savor those days and enjoy it. I enjoy times I can exercise or do other fun activities.
But, most days are rough. And I tend to just sit in my chair, read a book, play on my tablet, etc. I listen to a lot of music, and mostly try to listen to God through the music. I love reclining in my recliner, opening up my tablet to my book I'm reading, putting on my iTunes and listening to music (and, no, I've not yet put on Christmas music yet....) It's so easy to go into despair when you aren't feeling well. You become so wrapped up in yourself and wonder "why", "when?" "how long?", etc more often then one realizes.
I'm so grateful for e-mail, texts, and Facebook, so that I can keep up with friends far and near. I love being able to hear from them and to be able to know how to pray for them and to hear their own testimony of how God is using them. This is my distraction. It doesn't have to be anything big or anything small someone is going through; I'll pray. Yes, my situation (as well as others who have physical issues), is rough, but we all are going through SOMETHING so we suffer (or rejoice) not alone in everything that we do or seek.
So I close by saying thank you for all your prayers on my behalf. Let me know how I could pray for you.
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