The never ending pain in the back.
I'm still on the fence about switching to a different rheumatology clinic. I went to the one I've been going to on Friday, the nurse practitioner ordered a ton of lab work as well as another MRI, this time on my lower back.
The lab work came back saying that I am not HLA-B27 +, but that genetic marker only pertains to 90% of caucasians with A.S., and I' not 100% caucasian anyway. So it's information, but doesn't really tell us anything. For African American's that genetic marker is only present in about half of the patients with A.S. so there are other genes that contribute to this that just are not known of yet.
My inflammation present in my blood was slightly elevated (as always) and the labs also revealed that I am dangerously low in Vitamin D. I'm to restart taking those supplements as well as now having a prescription dose to take once a week. I need to greatly increase my milk consumption as I know I do best when I drink more milk. This explains a great deal as to why I've gotten every little (& big) cold and flu that's gone around this winter.
I don't know the results of my MRI yet, but will see the nurse in two weeks to go over them. I hate waiting.
The MRI appointment was very frustrating. The technician had no bedside manners. When she asked what my ailment was that brought me in she seemed like she really didn't care what my answer was. And when I replied Rheumatoid arthritis, ankylosing spondylitis she replied with "You're awfully young to have that." To which I just didn't reply anything to her, other than "Well it hits in my family pretty early" I mean, how am I supposed to respond to that? Keep in mind RA effects women in the prime of their lives. I'm almost 30 and this is exactly the age most women with RA start to show symptoms. I've being medically treated for this for the last 3 years, I've got loads of lab work and improvement from medication to back this up, and she wants to stand in front of me and tell me I'm too young? What the heck, that's no comfort. And what does she know anyway, she's a radiology technician, not a rheumatologist!
So the next thing is that she has me get on the table to go into the machine, and she starts explaining to me about this vice looking attachment that is part of the cameras for the MRI machine, and how I'll need to lay on it too. So I give it a shot, trusting her, but thinking - "I'm doing this for my lower back, not my upper spine - this doesn't quite make sense. Anyway, so she tries putting me in the machine and asks if I'm doing OK, I had mentioned at the start that I can sometimes feel claustrophobic, but that I've done OK with getting an MRI scan before. As I'm in there with this vice on my head I can't breath at all. So I let her know that. She curtly asked me after she got me out if it was claustrophobia or something else. I tried explaining to her that the device around my head was pushing my shoulders to push my arms up over my chest when inside and that I couldn't breath from that. To which she replied "I'll have to talk to the radiologist." And she left me laying there waiting. When she came back she said I could do one of two things, have an open MRI that I'd have to reschedule for, or go ahead and try it here without the camera. As if she's responding to it still being a claustrophobia thing. So I said lets give it a try here without the camera and then when I went in I was fine. My arms were able to be down by my side and I could breath normal in there.
While I was in the machine I kept expecting to get updates on how much longer things where going to be. I was in the same machine I was a year ago so I recalling how the other tech was then. That gal kept telling me every 10-15 minutes a time update, which made it a lot easier to handle. I brought my own CD with me because last time I chose a CD from their list and it was a bad idea, the music started to make me freak out. My dear sweet cousin Tracy sent me a couple CD's as a surprise and they came the day before. So I was looking at the total play time and thought this would be perfect. Music I know I'd want to listen to, as well as it being a little bit longer than the estimated time I was told to be in the machine. As I got to the last song she called into me over the speaker saying that the radiologist wanted to do to more scans before I came out, so this all was going to be an additional 20 minutes longer. I said OK thinking the CD would start again from the beginning but it didn't. So between the last couple scans I squeezed my communication ball to speak up and let them know the music stopped. Nothing. So I figured they just wanted to keep going and didn't bother speaking up another time, but it kind of bugged me. I ended up spending the last 15 minutes in the machine counting minutes in my head.
Then when she came back in to get me out, she didn't say a thing. As I was trying to get back up off the table she says, "You can get up now, you don't need to keep laying there." What the heck, I'm struggling to get off, my arms are flailing as I'm trying to shift my weight and counteract the stiffness from laying there for over an hour. I said "I'm trying..." and she turned around to watch but didn't offer any help. Oh, and I should probably mention I was using my cane and had my cane with me. It just was really frustrating all around. At least it's done, now I can find out what my nurse thinks in a few weeks. I pray the scans are informative.
This new nurse is pretty good. She gave me the results of my last MRI which I had only been given a summery of. I'm glad she did too because now I can make copies and carry it to my other specialists as I need to see an endocrinologist and last years MRI showed my ovarian cysts as well as showing that my right ovary is enlarged. I only knew it mentioned my cysts, but not that it said how many were visible, the size of them, or that I was in-fact dealing with an enlarged ovary. I wonder if this recent scan will give more information along those lines. I'm certain my new endocrinologist will want to know these details of my PCOS.
Anyway, so that is my frustrating ordeal with the MRI scan I had done this week. I'm glad I don't need these all the time. I'm glad too for the times when I do get medical professionals who are courteous and kind. But I've got to say that I was so frustrated by the whole ordeal this last time that when I got home I had such a headache I just laid down with a cold towel on my head and cried, & I was thinking about how ridiculous it was for me to be frustrated because I'm the patient, I should be helped, but whatever, at least it's over with. I've avoided writing about it because I don't want to be upset by it. But I do think it needs to be recorded that how a patient is treated is a big deal and she blew it. Especially for those of us with chronic illness. We have to go to so many appointments and have so many procedures done, so when someone is rude it doesn't just feel bad, but it says something about our illness(s) and adds to the stress of having a disease or ailment.
The lab work came back saying that I am not HLA-B27 +, but that genetic marker only pertains to 90% of caucasians with A.S., and I' not 100% caucasian anyway. So it's information, but doesn't really tell us anything. For African American's that genetic marker is only present in about half of the patients with A.S. so there are other genes that contribute to this that just are not known of yet.
My inflammation present in my blood was slightly elevated (as always) and the labs also revealed that I am dangerously low in Vitamin D. I'm to restart taking those supplements as well as now having a prescription dose to take once a week. I need to greatly increase my milk consumption as I know I do best when I drink more milk. This explains a great deal as to why I've gotten every little (& big) cold and flu that's gone around this winter.
I don't know the results of my MRI yet, but will see the nurse in two weeks to go over them. I hate waiting.
The MRI appointment was very frustrating. The technician had no bedside manners. When she asked what my ailment was that brought me in she seemed like she really didn't care what my answer was. And when I replied Rheumatoid arthritis, ankylosing spondylitis she replied with "You're awfully young to have that." To which I just didn't reply anything to her, other than "Well it hits in my family pretty early" I mean, how am I supposed to respond to that? Keep in mind RA effects women in the prime of their lives. I'm almost 30 and this is exactly the age most women with RA start to show symptoms. I've being medically treated for this for the last 3 years, I've got loads of lab work and improvement from medication to back this up, and she wants to stand in front of me and tell me I'm too young? What the heck, that's no comfort. And what does she know anyway, she's a radiology technician, not a rheumatologist!
So the next thing is that she has me get on the table to go into the machine, and she starts explaining to me about this vice looking attachment that is part of the cameras for the MRI machine, and how I'll need to lay on it too. So I give it a shot, trusting her, but thinking - "I'm doing this for my lower back, not my upper spine - this doesn't quite make sense. Anyway, so she tries putting me in the machine and asks if I'm doing OK, I had mentioned at the start that I can sometimes feel claustrophobic, but that I've done OK with getting an MRI scan before. As I'm in there with this vice on my head I can't breath at all. So I let her know that. She curtly asked me after she got me out if it was claustrophobia or something else. I tried explaining to her that the device around my head was pushing my shoulders to push my arms up over my chest when inside and that I couldn't breath from that. To which she replied "I'll have to talk to the radiologist." And she left me laying there waiting. When she came back she said I could do one of two things, have an open MRI that I'd have to reschedule for, or go ahead and try it here without the camera. As if she's responding to it still being a claustrophobia thing. So I said lets give it a try here without the camera and then when I went in I was fine. My arms were able to be down by my side and I could breath normal in there.
While I was in the machine I kept expecting to get updates on how much longer things where going to be. I was in the same machine I was a year ago so I recalling how the other tech was then. That gal kept telling me every 10-15 minutes a time update, which made it a lot easier to handle. I brought my own CD with me because last time I chose a CD from their list and it was a bad idea, the music started to make me freak out. My dear sweet cousin Tracy sent me a couple CD's as a surprise and they came the day before. So I was looking at the total play time and thought this would be perfect. Music I know I'd want to listen to, as well as it being a little bit longer than the estimated time I was told to be in the machine. As I got to the last song she called into me over the speaker saying that the radiologist wanted to do to more scans before I came out, so this all was going to be an additional 20 minutes longer. I said OK thinking the CD would start again from the beginning but it didn't. So between the last couple scans I squeezed my communication ball to speak up and let them know the music stopped. Nothing. So I figured they just wanted to keep going and didn't bother speaking up another time, but it kind of bugged me. I ended up spending the last 15 minutes in the machine counting minutes in my head.
Then when she came back in to get me out, she didn't say a thing. As I was trying to get back up off the table she says, "You can get up now, you don't need to keep laying there." What the heck, I'm struggling to get off, my arms are flailing as I'm trying to shift my weight and counteract the stiffness from laying there for over an hour. I said "I'm trying..." and she turned around to watch but didn't offer any help. Oh, and I should probably mention I was using my cane and had my cane with me. It just was really frustrating all around. At least it's done, now I can find out what my nurse thinks in a few weeks. I pray the scans are informative.
This new nurse is pretty good. She gave me the results of my last MRI which I had only been given a summery of. I'm glad she did too because now I can make copies and carry it to my other specialists as I need to see an endocrinologist and last years MRI showed my ovarian cysts as well as showing that my right ovary is enlarged. I only knew it mentioned my cysts, but not that it said how many were visible, the size of them, or that I was in-fact dealing with an enlarged ovary. I wonder if this recent scan will give more information along those lines. I'm certain my new endocrinologist will want to know these details of my PCOS.
Anyway, so that is my frustrating ordeal with the MRI scan I had done this week. I'm glad I don't need these all the time. I'm glad too for the times when I do get medical professionals who are courteous and kind. But I've got to say that I was so frustrated by the whole ordeal this last time that when I got home I had such a headache I just laid down with a cold towel on my head and cried, & I was thinking about how ridiculous it was for me to be frustrated because I'm the patient, I should be helped, but whatever, at least it's over with. I've avoided writing about it because I don't want to be upset by it. But I do think it needs to be recorded that how a patient is treated is a big deal and she blew it. Especially for those of us with chronic illness. We have to go to so many appointments and have so many procedures done, so when someone is rude it doesn't just feel bad, but it says something about our illness(s) and adds to the stress of having a disease or ailment.
Labels: Ankylosing spondylitis, Arthritis, MRI, RA, Rheumatoid Arthritis
posted by Celestial Freak @ 3/12/2009 01:20:00 PM
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