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.

When life throws a curveball...

The past few months have been crazy. Just after deciding I was going to get back onto my health routine, I found out that my mom needed to have a quadruple-bypass and I needed to go back to the US for a while. (She's doing great now!)

In order to try to maximize my time spent with my family when I got to the US, I spent almost all of my time before I left working on my studies, so my exercise program took a back seat. Then I was in the US for three weeks and couldn't do my bike and all of my time was spent with family or doing the uni stuff that I needed to do, so I didn't do any physio exercises either.

I got back home about a week and a half ago. I took a few days to recover from jet lag, but I've been back on my health plan for a week.  I bike three days a week, do my physio exercises twice a week, and maybe do my physio on the weekend as well, but I didn't this weekend because we did a lot of walking around and I was physically exhausted. Can you tell which days I bike? (My statistics are from Google Fit and "Heart Points" were made in collaboration with the World Health Organization)

  

I'm still in quite a lot of pain, although it's been a 4-6 on the scale listed below, which I now use to explain my pain level to those who don't understand chronic pain. It's mostly been discomfort or moderate pain, but I have taken panadiene a few times so that I was able to curb the pain enough to sleep. When I'm in a flare, it can get somewhere between an 8 and a 9. (Which you'll note by looking at the tips under the scale, that giving birth without pain medication is an 8, so imagining going through that, or worse, for months at a time instead of the amount of time labour usually lasts!) I'm just glad that it's now Spring in Australia and so my pain will be going down because it's always worse in Winter.

My trip to the US also reinforced just how important it is to have someone supportive when you're dealing with this type of chronic pain. My husband wasn't able to travel with me this time, but he makes such a difference. It is really hard for people to understand invisible illnesses, but he is so incredibly helpful and supporting!

Painsomnia

I always thought that insomnia was horrible. But now I have painsomnia and that's so much worse. It's when you can't sleep because you are in too much pain. Usually during flares, sleep is the only time I really get relief, but now it's so bad that I can't sleep. I even took panadeine, but there hasn't been any relief. :(

Falling off my health plan and hopes to get back on!

I keep forgetting to write this post but I wanted to for my own records.

A few months ago now, I fell off my health plan. I had a cold for a long time, followed by an outpatient procedure to replace my Implanon. Then I became uncontrollably dizzy. I thought that maybe it was a reaction from replacing my Implanon and would get better in a couple days, so I waited a while before I went to see my GP. But after a week, I was still dizzy on a regular basis. I made an appointment with my GP, but that was for almost a week later.

I finally got there and she said it couldn't have been from my procedure but it's not uncommon to have dizziness after having a cold, although it had been a while since my cold. It didn't seem to be from a cold so she wanted to check out a few things. She took my pulse and blood pressure, both while sitting and standing. She said that my blood pressure looked normal but my pulse was really high. She wasn't sure what was causing it and had me get blood tests and an ECG and come back to her to get the results in a week. In the meantime, she gave me a prescription for a medication used for patients with vertigo and told me not to exercise or do anything strenuous since my pulse was already really high! I went back and all of the tests came back normal, which really isn't surprising for me. It seems to always be the case that I feel sick and the tests come back normal. (Hence being a medical anomaly!)

I continued taking the vertigo meds and my GP gave me a form to go to an inner ear test if the dizziness continued. She said to give it a week and then get the inner ear test done if it didn't get better. Luckily it did, after a few days! I'm now trying to get back into exercise again. I managed to get to 30 minutes once last week and tried a different time, but had too much back pain and had to stop after 5 minutes. I managed to do 35 minutes last night and my physio exercises.

I've also started a uni course and, hopefully, that helps me set up a routine. Our scale also is pretty dead (it doesn't give consistent readings, sometimes a difference of 5kg in a matter of seconds) because we used to keep it in the bathroom. But now we've ordered a different one online and that should arrive sometime in the next few days. This time we won't make the bathroom mistake! I know I've gained back a lot of the weight I had lost over the last year, but getting a new scale will let me figure out what my weight really is and let me set more accurate goals. I've been experiencing more back pain since falling off my health routine, but hopefully that will get better as I restart my health routine.

Winter 2018

I feel like it's time for a health update. I have been doing surprisingly well, which I'm hoping is due to my health and lifestyle changes and not that it's been a milder winter.

I've now lost somewhere between 15 and 20 kilos and I can wear my favourite boots and zip up my winter jacket again, neither of which I could do last winter! I also tried on my off-season clothes and found that I could actually zip a pair of my favourite jeans that are my goal size. They're still not very comfortable and I still have a ways to go with my weight and health, but it's progress. Unfortunately not much has happened over the last few weeks because I've had a cold/cough and couldn't exercise. But now I only have a slight cough and need to get back to my exercising, although I may need to ease myself into it now!

My back pain has been much less than before. I still have back pain, but nothing anywhere close to last year unless I've been overexerting myself. I don't take panadeine very often and I haven't cried from pain in a while. Part of that is the exercising/weight loss and part of it is that I got a TENS machine a few weeks ago. My friend with the same disease as me said that I might want to look into it and, after the pain I had in April, I decided to get one. Well, my mum bought me one because she's pretty great like that. :) It's amazing and allows me to have the mobility to do things I would otherwise struggle with, like helping to clean for our rental inspection last weekend! (and more fun things like going out somewhere and not needing cushions for my chair or a heat pack/electric blanket!)

I went to see my rheumatologist a couple weeks ago and with my decrease in pain and having the TENS machine, we decided that I don't need the other medicine I've been trying to qualify for the last two years. That means no x-ray this year! (and my blood tests have gone down to every 3 months instead of every month!) I may need that medicine in the future, but we'll cross that bridge when we come to it. In the meantime, I'm just glad that losing weight, doing physio exercises, and having a TENS machine have all meant less pain for me on a daily basis.

Tears of pain

The last couple days have been horrible for me. Last night was the first time this year that I've cried because the pain has been so overwhelmingly painful. Two nights ago, I was having trouble sleeping because my brain wouldn't stop running a mile a minute and the pain made it even harder to fall asleep. Eventually, I did fall asleep and I was able to help out with creche at church on Sunday.

I felt fine during creche and was able to help out pretty well. Then we went to Westfield to pick up some things, including lunch to bring back to our friends' house. As we were leaving Westfield, I was in so much pain. I knew that I couldn't go to our friends' house for lunch, so I stayed at home when we went to drop off our stuff from Westfield. I turned my heat blanket on high and took a nap after finishing my lunch.

I started feeling a bit better in the afternoon, although I remained on the heat blanket on high all afternoon. Then it all got worse that evening. It seems to be that the immense pain no longer sneaks up gradually, but explodes like a bomb. I started whimpering in pain, so Rohan grabbed me some panadeine, which my rheumatologist prescribed for me for when my pain gets really bad. It eventually helped, but after about an hour or so of me crying while holding onto Rohan for emotional support. He said he's never seen it this bad and wanted to take me to the hospital, but I knew there's nothing they can do if my rheumatologist, who I've been seeing for a few years, can't even figure it out. Plus I don't think it's been as bad as it got last year, because there were times that the pain made me cry while I was at work, but Rohan obviously wasn't there during those times.

I didn't start having these sorts of pains until much later into winter last year, though. We're only about a month into autumn now! I can't imagine how I'm going to get through this year if the pain is already this bad. I don't have another appointment with my rheumatologist until 30 May, so hopefully it doesn't get too much worse. I've been hoping that the exercise, weight loss, and physio would help, but so far I'm not sure. Although I guess it could be that I'd be in even more pain if I wasn't doing them. I'm just at a loss of what to do other than keep continuing with my exercises and stay on the heat blanket when I'm not exercising. I think my rheumatologist will have me do another x-ray when I see her and base the next step off of that. I guess we'll be hoping for a bad enough x-ray to qualify. Again. Third time's the charm, right?

I can do a bridge again!

I've been trying to lose weight and get healthier for a while now but my back has started hurting and I was getting more worried about trying to get better before the winter, which is usually the worst part of the year for me. I decided that it was the perfect time to try my exercise bike while my back hurt, after all, that's the reason we went with buying a recumbent bike. To my surprise, it actually made my back feel better! I thought it was just that it wouldn't make it worse. A few days later, I watched an old episode of Catalyst that was about chronic pain and it explained how the body tells the brain that it's in pain and that exercise actually helps. I wasn't alone in thinking this! Although I haven't had an appointment with my rheumatologist since I started regularly exercising to see her thoughts on exercising relating to my specific chronic pain from sacroiliitis.

But this led to working out a workout plan for myself. I go on the bike every Monday, Wednesday, and Friday and read a chapter of the Harry Potter series. (I started reading it again for the Pottermore book club, but I'm really far behind.) Each chapter takes about 30-45 minutes for me to read on my bike, so that's the perfect amount of time. On the other days, I do the exercises that the physiotherapist suggested last winter to help build up the muscles around the affected joints.

Since September, I've lost about 13kg, although I don't know the actual number because my first weight measurement was with shoes at the zip line in Singapore with a different scale and we didn't buy ours at home until a month later. But I try not to focus on the numbers with my weight or measurements.

It's the little things that make me happy and motivated. For example, my anxiety and depression have decreased, I can sit on top of the stepladder and my hips don't get stuck in the handle, I look down and my stomach doesn't stick out further than my chest, except when I've just eaten, I've bought new clothes as some of my clothes were too big, and I even fit in some of my old clothes that I haven't fit in for about two years. But yesterday I reached another goal that I had. I could finally do a bridge again. I don't know how long it's been since I've been able to do it, but it's been a goal that I've had in the back of my mind. I was so proud of myself that I could do it! And I did it a few times so I know it wasn't even just a fluke!

Recap of 2017 and January 2018

Since I haven't posted on here since July and this blog is supposed to be a reminder for me about how I'm doing medically, I figured I should probably post an update.

This past year was a year from Hell for me medically. It was by far the worst year I've had with my back pain. I was in crippling pain from around May. Previously, it's been bad, but not this bad, and I get better once winter is over. That wasn't the case this year. I was in excruciating pain until sometime in November. (For those State-side, that's late Spring.)

I was constantly using an electric blanket or heat pack to help ease the pain. I could barely sit up and some days I spent a large portion of the day struggling to concentrate or trying to stop myself from crying because the pain was so unbearable. I could no longer help with creche at church, as I could barely move, let alone take care of small children, and I couldn't paint my nails, which was sometimes the only joy my depression would allow me to feel. Everything was hard work and it put a strain on every aspect of life and added additional stress to Rohan. I'm so incredibly blessed that he takes the "in sickness" part of our vows so seriously as that's definitely been tested.

Gradually I started feeling better and, in September, I started doing what I could to try to get healthier. I had been putting on weight since moving to Australia permanently, but being near immobile made it worse. I started out with walking part of the way to work. It was pretty far, so I took the bus most of the way, but instead of transferring, I walked the last 1.5 kms. When I could, I'd walk that to and from work and, if I was really up for it, sometimes I'd walk with Rohan home from work, which was another 2+ kms. We also bought a recumbent exercise bike so I could ride that and it wouldn't hurt my back, at least not any more than it already hurt. I've lost a bit of weight, and am no longer obese (yay!) but I still have a long way to go until I'm a healthy weight.

Everything was looking fine come Christmas. My job's contract ended in December and I didn't have a job lined up yet, but I was going to replace that walking to/from work with walking to the lake near our house. But then January came. I had a flare-up with my back pain a few weeks ago, which I think may have been from a sudden drop in temperature that night. I went to see my rheumatologist for a check-up a couple days later and she decided to change one of my medications. It took much longer than she had anticipated for my pain to get better after starting on methotrexate, so she thought maybe this would help. I'm now on moxicam instead of celecoxib. That flare-up went on for two weeks or so, which I'm guessing is from the change in medication. My back is only a bit sore now. Like uncomfortable but not too bad.

I had about a day after my back flare-up until I came down with a cold, which luckily only lasted for a couple days. I was then healthy again for about two days before contracting food poisoning. (Which coincidentally was 1.5 days after a job interview for a research project on food poisoning, so cue the conspiracy theories!) I'm just now recovering from that.

This year hasn't been off to a great start so far, but, hopefully, it will turn around and be a better year than the last one!