Did I mention that universal healthcare is awesome?

This past week I had two medical appointments. On Monday, I met with my rheumatologist. It was a pretty standard appointment. We're looking at my meds and possibly changing them up. But she didn't want to do any changes until I met with a gastroenterologist, because of our suspicions that I may have irritable bowel syndrome (IBS), to know if any medications need to affect that as well.

On Tuesday, I had my first appointment at the gastroenterology unit at the hospital. I talked with the doctor and she said that she doesn't think my symptoms are caused by IBS. But she acknowledged that having an autoimmune disease increases your chance to develop other autoimmune diseases. As a result, she said that I should get both an endoscopy and a colonoscopy. I'm now on the waitlist to get those both done. 

As I was at the hospital, I was reminded how great it is that I didn't need to pay for the appointment nor the endoscopy/colonoscopy when I get them done. I'm glad we don't need to make a decision about what tests to get because we can't afford to pay for them.

The next steps

I went to my rheumatologist today with Rohan. I told her that I've been feeling great, but she seems to think that maybe it's just the flare has gone away, as the medications are still in my system, since they take a few months to be fully gone. I understand why she thinks that, but, at the same time, I feel better than I have in years. It just seems too unlikely that my flare, which lasted 3+ years, got better at the exact same time as I went off my medications.

But, she wants me to go back on two of my medications. She said that if my pain does flare up again, there's nothing that she can do, as far as prescribing different medications, unless I'm on the highest doses of my medications. She wants me to go back on sulfasalazine and methotrexate. I'm a bit irritated with the methotrexate because I will eventually need to be off it if I want to have children, but she said it's better to be on it now so we can try to experiment with changing things up than if I were pregnant and trying to figure out my pain management. She also said to only go back on the meloxicam if my back pain does flare up. That one has a shorter time between starting to take it and it working.

However, before I resume the sulfasalazine and methotrexate, she wants me to get some testing done. I told her that since stopping the medication, I've been experiencing digestive problems. She thinks that there's a possibility that I have Crohn's Disease. At first, she wanted me to get a colonoscopy, but then she said that I can do a stool sample first and that will tell me if I need to get a colonoscopy to confirm if it is Crohn's Disease. I need to do it before resuming the medications because it might go away when I go back on the medications, assuming it is related. I also need to keep getting my blood tests, but I want one to be when I'm off the medications to see if that makes a difference in the auto-anti-body counts.

So, all up, I think it is good news. I don't think I did qualify for the medications based on my MRI, but the MRI has shown inflammation and damage on the sacroiliac joint on my left side and the joints that are at the sides of your hip. But, thanks to going off the medication, I actually feel like we have an idea moving forward. I found out that I was feeling fine, with the exception of digestive pain. Now, it's basically back to the waiting game, but at least I feel like we're waiting on something that might make a diagnosis clearer and not for her to repeatedly tell me the same thing.


UPDATE: I resumed my medications on the evening of 10 March.

MRI experience

Rohan picked me up after work so that I could go get my MRI. I'm so glad that the place I went to is open late so I could go after work.

The office called me a couple days ago to run through things and told me that the scan would be an hour long. When I got there, the technician realised that my referral said "hip" instead of "hips," so they calculated the time based on just one hip and my SI joints, but I told him that I think she wanted both looked at. So instead of an hour, it needed to be an hour and fifteen minutes. That's a long time to stay still!

I did a pretty good job of staying still, but I was in a lot of pain towards the end. For these MRI scans, they placed a big plastic thing, apparently with coils inside, on my abdomen to pick up the signals to make the images. I don't remember that last time, or when I've had my countless brain MRIs, but he said it's always there. Some places have different ones, though, so it may have been smaller.  At first, that thing was fine on my stomach, but it heats up. After a while, I was feeling nauseated. I think that that plastic thing might be the reason I felt so sick during my previous MRI of my back/hips. (But on a positive side note, no contrast this time!)

In the last twenty or so minutes, I was really struggling. I felt nauseated, my muscles were struggling to stay still, and I was starting to feel a lot of pain from laying on a flat board for so long. I tried to zen out, but that only lasted until about that point. I then just kept trying to breathe through the pain and prayed that God would give me the strength to make it through the rest of the MRI. It was a real struggle!

I was glad that Rohan was there to drive me home instead of me needing to take the bus. My nausea and pain kept getting worse. We did end up going to the grocery store before going home and my pain was actually feeling a bit better as I walked around. But I was still in enough pain that I wanted to take panadeine as soon as I could.

I took panadeine with dinner, but I'm still in a lot of pain. My lower back is sore; my hips are sore, on the sides and the front bit; and my hand/feet are feeling arthritic. I'm not really nauseated, though, so that's a plus! Hopefully the panadeine, along with a good night's sleep, will help me feel better for tomorrow. I'll find out the results of my MRI when I see my rheumatologist next week.

Off my medications

I was very nervous about going off my anti-inflammatory medications. Previously when I had done it, I was in no pain beforehand but then excruciating pain when I went off my medications. This time I was already in pain, so I thought it would be so much worse. I thought I wouldn't be able to move within days, but it hasn't been that way at all! I'm feeling the same, if not better, in my back. My hands and feet are definitely feeling it, which is something I completely forgot about, but they aren't too bad overall.

As this blog is primarily a record for me so I can look back on how my health has changed, I've written a day-to-day post of what happened, using the notes I created as it was happening. I looked back on the previous MRI post and I said that I was in excruciating pain within days, but I didn't say how each day progressed to that. I wanted to be much more precise this time.

Monday 18 Feb

My TENS machine broke over Christmas, so I called them last week to get a replacement, as it was still under warranty. I was extremely happy to find it arrived on Monday since I was going off my meds on Tuesday and I didn't know how much pain I would be in.

Tuesday

I stopped taking my anti-inflammatory medications, as well as those associated with them, in the morning. I wasn't sure how quickly I would get a reaction, so I had Rohan help me put on my TENS machine before we both went to work. Since I had it attached, I figured that I would turn it on, even though my pain wasn't any more than usual. It ran for about an hour, before shutting down. I had it on a timer, so I thought nothing of it until I tried to turn it back on. It wouldn't turn on. I thought that maybe the battery was dead, but changing the battery when I got home didn't fix it. I still need to call them back. But the good news was that I could use my old TENS machine with the new leads from the one they sent me and it worked fine. I took Panadeine at bedtime.

Wednesday

I put my TENS on as soon as I got to work and I needed to run it for most of the day. My fingers, wrists, and feet started to hurt. As soon as I got home, I found some silly putty stuff that I have from an old trade show that my mom and I went to. Playing with that helped. We had bible study and I had my TENS on and I played with the silly putty the entire time. I also noticed that I was having heartburn, but figured that was from stopping the associated medication, as one- pantoprazole- is used for heartburn/indigestion. I took a Panadiene at bedtime.

Thursday

I brought my TENS to work with me, but wasn't going to put it on unless my back was so sore that I needed it. I didn't end up putting it on. My hands were really sore for a few hours, so I played with my silly putty during that time. They seemed to be hurting less throughout the day, which seems to fit with what rheumy was describing as how an inflammatory disease works. My jaw also hurt all day, but the severity of the pain came in waves. I felt achy all over, but it felt more like the flu than anything with my back/hips. They felt mostly fine. I was still having quite a bit of heartburn, so I decided to resume the pantoprazole, as that doesn't affect inflammatory markers anyway.

Friday

I had very little pain all day and didn't bother with putting on my TENS machine. After work, I met Rohan at the Multicultural Festival. I only had to sit down a few times during our time there and it was more likely due to my backpack than pain from my disease. I had some heartburn issues, so I had a quick lie down when we got home before people were coming over for book club. After my nap, I was even able to help clean up a bit before book club. Rohan started feeling achy, so that's why I thought it was some sort of bug I had, rather than a result from going off my medications. Apart from being achy, that's when I realised that I am probably feeling better than I usually do on my medications. That was also the first night that I didn't need panadiene to lower the pain to a level where I could sleep.

Saturday

We spent most of the day at the Multicultural Festival and my pain was mostly bearable. I only had to sit down a few times, which is often what would happen when I was in my meds, as well. My feet were really sore by the end of our time there, which Rohan said they should be after the amount of walking we did, but they were a different type of sore than overuse causes. It is sort of like they don't feel quite connected in the way they should. Like the joints and areas between the bones were loose. I was also sort of waddling around, which is something I do when I'm in more pain. I took a nap when we got home, but that resulted in my hands becoming sorer. I was still able to play a board game with Rohan that evening, though.

Sunday

We had church at a different campus than usual, due to flooding at our campus. That church doesn't have any cushions, but I brought mine in to use. I was able to sit on those for the whole service and I didn't need to go and try to attach my TENS. After church, I did have Rohan help me to put it on before we went to the city, though. Unfortunately, it was very hot and I was sweaty, so the pads kept coming off and, as a result, the TENS machine didn't work for most of the day. I had to sit down quite a bit as a result. After we had our fill at the Multicultural Festival, we went back to Belconnen to do Pokemon Go Community Day. Surprisingly, I was able to do a couple hours, even though my TENS wasn't working. I did need to sit down a few times, though. When we got home, I took a bath and then laid on the couch with our heat blanket all evening. All of the walking was definitely catching up with me. My back and feet were sore, but my feet felt arthritis sore. I didn't need panadiene to sleep.

Monday

I could feel as soon as I woke up that my muscles and joints were extra sore from this weekend. I also had to do extra walking because my bus stop was closed and I needed to go to the florist for my boss, so my back was really sore. But the pain was uncomfortable, not unbearable. I ended up realising when I got home that I forgot to pack my TENS, so I'm glad I didn't need it. My back got worse at the end of the day, but the weather changed rapidly from sunny to rainy, so I wasn't sure if it was related to my medication, overuse this weekend, or the changes in weather. I was also very hyper, likely due to some of my uni stuff being available and fixing an issue I had with EndNote, but that meant I had the energy to go on my exercise bike, even if it was a short ride. I made it about 20 minutes. I stopped mostly because I had increasing discomfort. It wasn't painful levels yet, but I wanted to stop before I pushed myself too far. That evening, I also looked at my old blog post from when I tried to go off my meds previously and I realised that I have gotten further than last time, plus I didn't have excruciating pain! I did need to take a panadiene before bed.

Tuesday

My pain was manageable and I didn't need to put my TENS on. I was having trouble breathing when I first got to work. Everyone said it was hot in the office for some reason, so I just assumed that's what it was. We had a staff meeting, in which I changed the chair to one better for my back, and it was colder in that room and I could breathe fine. It wasn't until I got home and we were eating dinner that I saw the box of pantoprazole, that we had to buy over the weekend, that I realised that I forgot to add my heartburn medication to that week's pill case. The issues with breathing, which was exasperated by the heat, was mostly caused by the fact that I hadn't taken my heartburn medication. Rohan and I also discussed going back on the meds. The plan was to go back on them as soon as my MRI was over. However, as I've been feeling better than before I went off the medications, we're going to wait until I talk to rheumy to see her views on going back on the medications or not- unless the pain actually does become unbearable. I suspect I'll go back on one because of my hands/feet, but probably not all three. We'll find out when I see her on 5 March. I've also decided that I want to get a blood test before I go back on the medications so we can see what my inflammatory markers are like without the medications. I know that the medications are still in my system, although less than before, but it might give us an idea of if/how much the medications are helping.

Wednesday-current

My pain has pretty much been the same every day. I have discomfort, but it is not usually unbearable and it is not worse than usual. I went to see a physio on that Wednesday, because of an injury from falling about two weeks ago, and he warned me that the MRI should see some wear and that is normal as you age. I guess we'll see how it's interpreted by the technicians and my rheumy. Other than that, days have been the same with minor changes. On Thursday, I was home sick with some sort of bug. On the weekend, I pushed myself further than I should have and I was exhausted on Monday, but I still tried to do too much, which included the exercise bike. I had to take panadiene at dinner and then rest on the electric blanket. This evening is my MRI. It's going to be an hour long and I won't find out any results until I see my rheumy in the fifth.

The Medical Anomaly Strikes Again!

I continue to be a medical anomaly as I still make no sense to the medical profession. I went to the rheumatologist today to get the update on whether or not my x-rays qualified for the medication and our next steps, depending on their results. I had Rohan go with me today because I wasn't sure I would be able to handle the emotional toll that this is taking on me, especially after she told me last time that she isn't sure if the medications are even working!

I found out that my x-rays did not qualify again. That's really no surprise. I wasn't expecting that they did and I didn't want to hold out hope only to be let down again. But rheumy also explained that my inflammatory disease is basically the opposite of what it usually is. Usually, people with inflammatory diseases feel worse when they first wake up and feel better after they've moved around. Mine is fine when I wake up, but gets worse throughout the day, especially when I walk around a lot. Weather also doesn't usually affect inflammatory diseases, but my pain is so much stronger in winter and when the weather changes rapidly. This week, it changed from 40C (104F) to 18C (64F) back up to 40C (104F) in a matter of three days. That was excruciating.

Because of the difference in my illness and typical inflammatory diseases, she's not actually sure that the biologics (the medication that my x-rays were trying to qualify for) would even work. But, since the x-rays didn't qualify and I couldn't qualify the other way, she wants to try to put me on a different (although similar) medication. Qualifying for this one requires certain results from an MRI scan, so I need to get an MRI taken of my lower back/hips. This one has more promise as my previous MRI did show something, just not quite enough, and was in 2016. My pain has gotten so much worse than it was then, so, hopefully, that is a good sign for trying to qualify. I also brought up my question of if going off my medications would make the MRI more likely to show the inflammation. She said that the studies have been mixed and she would never normally tell someone to go off their meds, but she gave me the go-ahead to try to do that and see if it helps. She said to wait about two weeks after I stop taking those meds to get the MRI. The medications stay in your bloodstream for about 3 months, but she said two weeks should be enough to see a change. I have another follow-up with her in one month to then see how my MRI went.

I'm going to call tomorrow to get an MRI appointment before I go off my medications. I'm not sure how soon I will be able to get one and I don't want to be off my medications for longer than I need to be. I'm really worried about the pain because I tried going off of them back in 2016 when I was in minimal pain with them and wasn't sure if I needed them. Now I'm in extreme pain with them, so this might be unbearable.

So fingers crossed or please send prayers/positive thoughts, depending on your beliefs. The next few months will be hard ones!

On a side note: today marks 11 years from my brain tumour diagnosis and tomorrow is 11 years post-op!

Medical frustrations

I went to the rheumatologist on Wednesday and was very frustrated. I wanted to write a blog, but Wednesday was when I could finally apply for Australian citizenship, so I was busy with submitting that form and I didn't want to ruin my happiness at getting it submitted.

This time, I was determined to talk to my rheumatologist about what the heck is wrong with me and my concerns about the possibility of having EDS. I know I have hypermobility and I relate to many of the things that I've read about it online. She doesn't think that I have EDS, as it's generally genetic and no one in my family has it, but she does think that some of my pain is due to hypermobility.

She also talked about my bloodwork. Every time she makes sure that I wasn't sick when I got it taken. It's always the same answer. No. I know that I can't get it taken when I'm sick because my inflammatory markers will be higher, which isn't indicative of my normal levels. But she said that my bloodwork has not gotten better with any of my medications. If anything, it has gotten worse over time.

It's exactly as it sounds. My medications may NOT be doing ANYTHING! So I've been spending hundreds, if not thousands, of dollars over the last few years, not to mention the side effects and impacts of taking the medications and having regular blood tests.

The next step is for me to have another x-ray, as it's been two years since my last one, to see if I finally qualify for biologics this time. Fingers crossed and prayers that I do! Biologics would mean that I am able to stop taking my other rheumatology medications and they are pregnancy-safe, which is good for when we do want to try for children.

If I don't qualify, we aren't sure where we'll go from there. While it's possible to get biologics without qualifying, they would cost about $10,000 a year, which just isn't feasible. Especially when I am so young, so, hopefully, have a lot more years to live! Plus she said there's about a 30% chance that they won't work. There are now other ways to qualify, but, unfortunately, or maybe fortunately, I don't qualify any of the other few options for a secondary qualification. Those include things like psoriasis or IBS.

So, for the time being anyway, I'm stuck taking medications that may or may not do anything, may have long-term impacts on my health, cost a lot of money, have blood tests, and still be in pain! She wants me to stay on my current medications until we know if I'll finally qualify for biologics. Then we'll decide if they are going to change or what we will do. I'll be going back in February, so, hopefully, I'll have some good news then, but I'm not holding my breath!

How do you define a disability?

Defining a disability is something that I have been struggling with for the last few years as my health deteriorates. A few years ago, I definitely wouldn't have said I have a disability, but it has become more of a question over a years. Should I write on forms, such as job applications, that I have a disability? I don't get any sort of government support and I'm able to do most things, but I am often in a debilitating amount of pain and I do have to go to doctor appointments and specialist appointments much more than the average person. But the stigma against disabilities has often caused me to refrain from stating that I do have a disability. While it is illegal to discriminate based on a disability, that doesn't mean that it doesn't happen through people's internal bias.

Having an invisible disability and being able to "pass" is both a blessing and a curse, although mostly a curse. I am able to hide it to reduce some discrimination, but it also means that there is a lack of understanding and compassion from the general public and those that aren't really close to you. People don't see my disability or my pain and, therefore, have a hard time grasping it. 

I look like a healthy 20-something-year-old woman. I can see, I can hear, I have all my limbs, and I'm not wheelchair bound. They don't realise the amount of pain I deal with on a daily basis. The amount of pain I deal with on a reasonably good day is probably more than what most people would take as a sick day. But I don't have the luxury to take sick days due to my pain. If I tried to take even just the really bad days off, I wouldn't be able to keep a job because I wouldn't have enough sick days and I'd be taking too many days without pay. I have to keep those sick days for visits to the doctor or times I get a cold or flu, which are plentiful thanks to being on immunosuppressants! 

Last year my pain got so bad, that there were days that I literally just cried while at work because it was unbearable. Pain medication didn't work. I had a heat blanket, but that only helped so much. There were times that I had the conversation with my husband that I thought I would even want to go to the extreme of paralysis from the lower back down if it would stop my pain. The only thing stopping me from going to the ED during those flares was knowing there was nothing they could do to stop the pain. But most people don't see that and, therefore, they can't understand it, even if they wanted to.

This is my favourite pain scale. On my worst days, it gets somewhere between an 8 and 9.  It also has the reference for people that childbirth without drugs is an 8, so my pain often gets worse than childbirth. On a really good day, my pain is a 3, but most good days are a 4.

While those with invisible disabilities may be able to "pass" and don't always get overt discrimination, we deal with discrimination on a different level. I say that I'm sore and tired, but people will respond that "everyone is sore and tired." "You're too young to be sick." "You're too young to take that many medications." But disabilities don't discriminate. Sure, some are more common with older age, but different disabilities can happen at any time. I currently take four different medications just for my autoimmune disease, and that's not counting my medications for mental health issues or my vitamins, one of which is needed to be taken alongside one of my autoimmune medications. Two of those four medications are immunosuppressants and one is actually a medication used in chemotherapy. Yup, that's right. I take two pills of chemotherapy every week, yet people think it "can't be that bad." I just need to exercise more and eat healthier. But would you say that to someone who had cancer or was in a wheelchair? Probably not, but if people can't see it, they have trouble believing it.

But this post isn't a pity party. I'm not writing it to get sympathy or to complain about my struggles and pain. But I want to spread awareness. There are different types of disabilities. Some are all of the time, some have flare-ups, and some have a roller coaster of unpredictable ups and downs. Mine tends to be seasonal, as I'm barely able to do anything without crippling pain but summers I almost feel like a normal person, although with pain like I'm a couple decades older, rather than in my 90s. But summer also means that I am often able to push my limits a bit more and that means a longer recovery time. It also means not knowing where my boundaries will be on any given day or time and needing to live with the consequences of it I try to push myself. But I hope that through this post, I can continue to spread awareness, especially for the International Day of People with Disability, so that people can understand different types of disability and have more compassion for those with a disability, even if that disability isn't visible.

Here's a link to my Pinterest board that shows some more examples of the struggles a person with an invisible disability faces.