I was called last week saying that the rheumatologist wanted to see me again. After rescheduling from Wednesday because I had a cold, I went in today. I was so excited because I was having tremendous pain in my back from switching medications.
She was happy to find out that my hands and feet were feeling better from the steroids, but not that my back was hurting again. It's been hard for her to try to diagnose because every time it seems to be different because my pain is either in my extremities or in my lower back. (No kidding!) But this time it was clearly my lower back! I haven't been able to do pretty much anything the past few days. I've been curled up in pain and taking a lot of hot baths and using heat packs. Plus lots of panadol but not nurofen because that would destroy my stomach lining. Basically it's been a hard time in our house because all of the added stress of taking care of me and the house falls on Rohan. Good thing we don't have kids yet!
She told me to go back on my anti-inflammatories, so I took one as soon as I got home. Hopefully those will be working again soon. I'm also supposed to finish up my steroid regimen and then stop taking them, which is for another week and a half. The steroids were supposed to be short term and I wasn't supposed to take them with the anti-inflammatories because they can cause major stomach problems, but I'm weaning off them so it'll be fine.
She wants to me go get an X-ray of my back and then let her know when that's been done. Depending on the result, I have a couple options for my drugs. She first wants to see if I qualify to get these really good injection drugs. But they cost $20,000 so it's important that I actually qualify for them because we definitely don't have that kind of money! If my back isn't that bad yet, she may put me on Sulfasalazine. It's a drug used for rheumatoid arthritis. It can have a lot of side effects and I'd need to have regular blood tests, like every month or so. It usually takes a few months until it starts working, though.
After I get the X-ray, I'll just need to call and she can tell me over the phone which path she wants me to take. She already gave me the prescription for the sulfasalazine as well as all of the regular blood tests that I'll need. In that case I won't need to see her again until October. Hopefully this will be the answer!
Sunday, 26 June 2016
Thursday, 23 June 2016
What do I do since I'm unemployed? Mostly go to the doctor.
I had to get a blood test today. It's hard to force yourself to get out of bed when you know that's what you have to do today. Ugh!
But I did get there. I was supposed to go to Belconnen so I could give Rohan his wallet that he forgot at home, but I started walking there and felt really sick. I've been unwell and disoriented feeling for the past few days. I think it's from a cold, but I'm also on different medication so I'm not sure. I got less than 1/4 of the way there and knew I couldn't make it. Thankfully cardless cash is a thing, so he can still get lunch at some farewell thing.
Knowing I couldn't make it, I instead turned around and went to the pathologist at the Florey Medical Centre. Luckily I can get my blood work taken anywhere and it's bulk billed and sent the same. Isn't Medicare great?
I actually think I had the best experience getting my blood drawn that I ever have! I warned her that my veins are difficult and she actually listened and used a butterfly needle. She couldn't feel a good one in my right arm, so she went to my left and got one first try! It wasn't even painful, just a bit of stinging. She said my blood was coming out slow, but she got the two needed vials without them dying out! Yay!
Hopefully these test results will let us know something more. I'm also going to the rheumatologist on Monday because they called me on Tuesday asking if I could come in. They couldn't say why because the receptionist didn't know because of confidentiality, but she did say that my rheumatologist said it wasn't urgent. I guess I'll find out on Monday.
But I did get there. I was supposed to go to Belconnen so I could give Rohan his wallet that he forgot at home, but I started walking there and felt really sick. I've been unwell and disoriented feeling for the past few days. I think it's from a cold, but I'm also on different medication so I'm not sure. I got less than 1/4 of the way there and knew I couldn't make it. Thankfully cardless cash is a thing, so he can still get lunch at some farewell thing.
Knowing I couldn't make it, I instead turned around and went to the pathologist at the Florey Medical Centre. Luckily I can get my blood work taken anywhere and it's bulk billed and sent the same. Isn't Medicare great?
I actually think I had the best experience getting my blood drawn that I ever have! I warned her that my veins are difficult and she actually listened and used a butterfly needle. She couldn't feel a good one in my right arm, so she went to my left and got one first try! It wasn't even painful, just a bit of stinging. She said my blood was coming out slow, but she got the two needed vials without them dying out! Yay!
Hopefully these test results will let us know something more. I'm also going to the rheumatologist on Monday because they called me on Tuesday asking if I could come in. They couldn't say why because the receptionist didn't know because of confidentiality, but she did say that my rheumatologist said it wasn't urgent. I guess I'll find out on Monday.
Sunday, 19 June 2016
We found the source of the inflammation! (and other things)
I called the rheumatologist on Thursday and they had a cancellation on Friday so I went the next afternoon. I wasn't very optimistic because I've had enough disappointment from lack of results that I'm starting to lower my expectations.
But I actually got results! The MRI showed that I have grade 2 sacroiliitis in my left sacroiliac joint. What that means is that there is inflammation between two of my pelvic bones on my left side. That doesn't really explain the pains in my hands and feet, though.
So we found the source of the inflammatory markers in my blood, but not quite the answer. She decided that we should change medications to try to figure out the joint pain in my hands and feet. So I have a new medication to take. She prescribed me some steroids for the next 20 days, starting with four pills a day and reducing by one pill every 5 days. She also told me to stop taking the anti-inflammatory because the steroids should take care of the pain and both medications can cause stomach pain and nausea. I need to get a blood test in about a week and then we'll see what medication she wants me to keep taking. I might change again but the medicine she was thinking about has a lot of side effects so she wants to be sure.
I've changed my medicine but it's only been a couple days so it's hard to tell if the pain is less in my hands/feet yet. It seems like they're feeling better and my lower back is hurting more, but it's hard to tell at this point.
On a somewhat side note, before prescribing the steroids, she asked if I was thinking of having kids soon. Obviously some medications aren't suitable for that. I told her it would be at least a few years and asked her if whatever disease I have is likely to impact fertility. She said probably not as long as we start working now on figuring out what it is and controlling it.
Then I went home and read over the report of the MRI. They said that they incidentally discovered that I may have polycystic ovarian syndrome in my right ovary and that I should follow up clinically. My rheumatologist said nothing about it, so I'm glad that I got a copy of the report for my records. I'll follow up with my GP soon. I've also read up on it online and the symptoms seem to be consistent with my experiences. But I just saw the word 'infertility' everywhere and that made me worry. Rohan and I want to have kids someday and adoption is a long and difficult process and we're against doing in vitro.
But I'm glad that I have this time now to work on finding my diagnosis with the autoimmune disease and if I have polycystic ovarian syndrome before we try to have kids. I've had enough medical problems that I don't want the possibility of being infertile to sneak up on me in the future as well. I'm also glad for medicare so that I don't have to pay for all of these tests to find out what's wrong. So thank you tax payers of Australia!
But I actually got results! The MRI showed that I have grade 2 sacroiliitis in my left sacroiliac joint. What that means is that there is inflammation between two of my pelvic bones on my left side. That doesn't really explain the pains in my hands and feet, though.
So we found the source of the inflammatory markers in my blood, but not quite the answer. She decided that we should change medications to try to figure out the joint pain in my hands and feet. So I have a new medication to take. She prescribed me some steroids for the next 20 days, starting with four pills a day and reducing by one pill every 5 days. She also told me to stop taking the anti-inflammatory because the steroids should take care of the pain and both medications can cause stomach pain and nausea. I need to get a blood test in about a week and then we'll see what medication she wants me to keep taking. I might change again but the medicine she was thinking about has a lot of side effects so she wants to be sure.
I've changed my medicine but it's only been a couple days so it's hard to tell if the pain is less in my hands/feet yet. It seems like they're feeling better and my lower back is hurting more, but it's hard to tell at this point.
On a somewhat side note, before prescribing the steroids, she asked if I was thinking of having kids soon. Obviously some medications aren't suitable for that. I told her it would be at least a few years and asked her if whatever disease I have is likely to impact fertility. She said probably not as long as we start working now on figuring out what it is and controlling it.
Then I went home and read over the report of the MRI. They said that they incidentally discovered that I may have polycystic ovarian syndrome in my right ovary and that I should follow up clinically. My rheumatologist said nothing about it, so I'm glad that I got a copy of the report for my records. I'll follow up with my GP soon. I've also read up on it online and the symptoms seem to be consistent with my experiences. But I just saw the word 'infertility' everywhere and that made me worry. Rohan and I want to have kids someday and adoption is a long and difficult process and we're against doing in vitro.
But I'm glad that I have this time now to work on finding my diagnosis with the autoimmune disease and if I have polycystic ovarian syndrome before we try to have kids. I've had enough medical problems that I don't want the possibility of being infertile to sneak up on me in the future as well. I'm also glad for medicare so that I don't have to pay for all of these tests to find out what's wrong. So thank you tax payers of Australia!
Thursday, 9 June 2016
MRI- back
A couple months ago, I was told that I needed an MRI of my back so I got put on the waiting list. They don't tell you how long the waiting list is, but I got a call on Wednesday asking if I'd be able to come in the next day. I was free, so I went down to Canberra Hospital yesterday. I made sure to leave plenty early because I had to transfer buses and it takes over an hour to get down there. Plus my appointment was at 1:30 so I wanted to make sure I had time to eat when I got there. I ended up spending almost the whole day there.
I've had plenty of MRIs before because of my brain tumour history. I've probably had close to a dozen. This one started off normally. I changed into scrubs and laid down at the MRI table. It felt much longer than the brain scans, but I figured that different parts of the body just take different amounts of time. (I had a full body one when they found my tumour but I was unconscious that time.) Most of the way through they gave me an injection of contrast, which again is normal.
But then I started to leave the MRI. I got dressed and on my way out of the hospital I started feeling sick. I felt disoriented and queasy. I made my way to the main lobby and sat there for a bit. Realizing it might be a while until I felt alright, I messaged Rohan. It wasn't letting up and I started feeling feverish as well. I asked if he could come get me because I was worried about trying to take the bus, especially with the transfers, in my current state. I figured being at a hospital was best in case something did happen.
He was able to leave work early (even though he was in a meeting. Isn't he the bestest?) and go get the car to pick me up. I think I finally got home about 2 hours after the MRI and I still felt sick all night. I'm not sure if it was because of the contrast or because the MRI felt really shaky and I have bad motion sickness. It was my first MRI outside of the University of Michigan hospitals, so it's hard to know what the difference was. I just know that it was not an experience I'd like to relive so I hope that the pain was at least worth it and shows something that will lead to my diagnosis.
Random pictures:
I've had plenty of MRIs before because of my brain tumour history. I've probably had close to a dozen. This one started off normally. I changed into scrubs and laid down at the MRI table. It felt much longer than the brain scans, but I figured that different parts of the body just take different amounts of time. (I had a full body one when they found my tumour but I was unconscious that time.) Most of the way through they gave me an injection of contrast, which again is normal.
But then I started to leave the MRI. I got dressed and on my way out of the hospital I started feeling sick. I felt disoriented and queasy. I made my way to the main lobby and sat there for a bit. Realizing it might be a while until I felt alright, I messaged Rohan. It wasn't letting up and I started feeling feverish as well. I asked if he could come get me because I was worried about trying to take the bus, especially with the transfers, in my current state. I figured being at a hospital was best in case something did happen.
He was able to leave work early (even though he was in a meeting. Isn't he the bestest?) and go get the car to pick me up. I think I finally got home about 2 hours after the MRI and I still felt sick all night. I'm not sure if it was because of the contrast or because the MRI felt really shaky and I have bad motion sickness. It was my first MRI outside of the University of Michigan hospitals, so it's hard to know what the difference was. I just know that it was not an experience I'd like to relive so I hope that the pain was at least worth it and shows something that will lead to my diagnosis.
Random pictures:
I got to wear booties with my scrubs, which was cool.
I got a pretty big bruise on my right arm from where they injected the contrast. It's probably one of the biggest I've had when you consider they got the needle in the first try. It's also a lot more painful than many bruises I've had. Usually I like to poke them because I oddly like the feeling and I read online that it helps them heal faster. But I tried to poke this one or at least rub it and it's too painful! (I moved my hair tie up in the first picture to try and make look better. It was hard to focus my camera on the bruise.)
Also I took was taking my medicines this morning and thought I'd share a picture. This is part of why I feel like I'm an old lady. How many 26 year olds need to take this many pills every day?
Tuesday, 7 June 2016
Physiotherapy
Last time I went to the GP, he suggested that I went to a physio. I called the University of Canberra clinic, which he suggested. They said they didn't bulk bill and that I could go to the student led clinic for cheaper. I went there yesterday. Then I realised that my health insurance would have covered my physio and made it even cheaper, but oh well.
The physio asked some questions about my pain and stiffness as well as testing some of my joints on my hands and wrists. He couldn't come up with much. He said that usually when people come they have specific injuries but mine hasn't gotten to the point where I have specific pain. It's usually more of a discomfort than a hurt now that my medicine is kicking in again.
He ended up giving me a few exercises and ideas that can help with the pain. They're mostly variations of what I've already been doing. Things like stretching my hands under hot water. Hopefully they'll help. He wants me to go back in two weeks, but it'll be a different physio because the students change. I'm not sure if I'll end up going back again or not.
The physio asked some questions about my pain and stiffness as well as testing some of my joints on my hands and wrists. He couldn't come up with much. He said that usually when people come they have specific injuries but mine hasn't gotten to the point where I have specific pain. It's usually more of a discomfort than a hurt now that my medicine is kicking in again.
He ended up giving me a few exercises and ideas that can help with the pain. They're mostly variations of what I've already been doing. Things like stretching my hands under hot water. Hopefully they'll help. He wants me to go back in two weeks, but it'll be a different physio because the students change. I'm not sure if I'll end up going back again or not.
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