A Slow and Steady Journey: Arthritis Update

I’ve been a bit MIA on my blog lately, as life has just been jam-packed full of activities and appointments. Now that I have a bit of time up my sleeve, I thought I’d give an update on my arthritis. For those that haven’t read my previous blogs, I have Seronegative Rheumatoid Arthritis, which developed after I got Reactive Arthritis as a result of getting salmonella. This was back in December 2017 and things still aren’t back to normal, but they are improving – here’s how:

  1. I had a terrible sleep on Saturday night, so much so that I actually only slept for about an hour over the whole course of the night, for no particular reason that I could tell. It was a humble reminder that only a short 7 months ago, I was having to get up every two hours in order to take pain medication to get through the night (and day) without being in excruciating pain. In terms of pain, I have come a long way.
  2. A couple of weeks ago, I had a rheumatology appointment at the hospital to see how I was going. There is still a small portion of active inflammation in my joints (those affected for me are; both ankles, both knees, both elbows and both shoulders), but overall, it has significantly gone down since my first visit with my rheumatologist. In terms of active inflammation, I have come a long way. 
  3. I started driving about 2 or so months ago. That means I had about 6 months without driving and without having any independence. That was hard for me. I still get a sore leg after driving, and the parking isn’t great where I work, so my mum still has to drive me to work and back every day, but I’m driving outside of that, for social events and errands. In terms of driving, I have come a long way.
  4. This week, I had my first physio appointment. I had asked to see a physio as I am still having trouble walking properly, as well as getting the sore leg after driving. It was a great session and he said I haven’t done any damage, but just need to improve my strength – something I already suspected but appreciated hearing. I think back to when this first happened and I couldn’t walk at all on my right leg (where I first got the inflammation). I was then on crutches for about 5 months and have since been using a walking stick. I still have the walking stick, to help when I’m having to stand in the same spot for ages or when I need to walk long distances or generally need some support. In terms of walking, I have come a long way.

I still have a long way to go; I can’t ‘go for a walk’ yet, I’m still using a walking stick, I struggle to stand in the same spot for too long (e.g. showering and cooking), we’re still trying to figure out what treatment will work best for me, I’m still coming off the steroids, I still need to try and lose the weight the steroids caused me to gain, I still get sore if I push my self too hard…. but, I’ve come a long way.

The rheumatologist has said that it’s more than likely that I will be living with this arthritis my entire life, but as long as I take the medication/once we’ve found the right balance, I should be able to live a ‘normal life’.

The physio has tasked me to try ‘pacing’, i.e. with walking, spend a few days trying to figure out how many minutes I can walk at once (I’m doing after work), without pushing myself enough that I need a rest. I then need to calculate the few days together and figure out the average – I’m thinking it will be about 10 minutes. Once I’ve done that, I need walk for that amount of time every day for a week. If everything is going well, add another 10% on for the following week and so on. This concept is based on trying to stop or discourage a cycle of overdoing it and then needing rest, then overdoing it again once you feel better and round and round it goes. What we want, is to build up my strength slowly so I can function on a day to day basis without needing to take a day of rest in between. I also have a few exercises to do, one I can do at my desk at work and the other I need to do at home with an exercise band (pictured).

It is a slow and steady journey, but I am getting there!

 

My Arthritis: An Update

You may have noticed that I did not refer to this post as “Reactive Arthritis” like my previous post, rather “My Arthritis”. That’s because I have apparently surpassed the healing period for Reactive Arthritis and my arthritis has now transformed. Although the rheumatologist has informed me that I don’t fit perfectly into one specific type of arthritis, she said that I am most closely aligned to seronegative rheumatoid arthritis. If you are interested in finding out more about rheumatoid arthritis, take a look at this Arthritis NZ brochure.

When I went to see the rheumatologist, she was able to do an ultrasound on my joints and we not only confirmed that the inflammation is in my knees and ankles but we also saw that it was in elbows, which I was completely unaware of. The inflammation was also in my ankle tendons, rather than the joint, which was interesting to find out as well.

As a result of my consult with the rheumatologist I’m now on a new treatment plan (unfortunately much larger than I would have liked) called Triple Therapy. This seems to be the standard attack on rheumatoid arthritis and it’s hopeful that it will start helping me. The unfortunate side is that it takes three months to kick in, so I’m also still taking steroids as well. The steroids have certainly added a dramatic amount of fluid weight gain to my body, especially around my face. It’s hard to deal with, but I’m pushing through it knowing that once I’m off the steroids it will eventually go away.

So what does this mean for me now? I have to keep taking the medication – currently, an average of 18 tablets a day (including a couple that my mum is giving me, like turmeric tablets) and in three months time I will see my rheumatologist again for an update. Unfortunately, the Triple Therapy drugs have some nasty side effects, so I have to keep a close eye on them as well and there is also a chance that the disease may spread to my back. I purchased a small notebook to help me keep track of anything unusual because three months is a long time to remember small details!

Due to some of the drugs’ side effects, I also have to get a blood test every month to make sure that everything is okay. It’s a lot to take on, but I’m trying to focus my energy on more positive things like going to social events and reading fun books. It can be hard some days, especially when I’m in pain, but it’s important for me to keep my head high and continue to live life as normally as I can.

If you have any questions about what I’m going through or would like to share your own story – flick me an email, I’d love to hear from you!

It’s time to step back

I have been part of a small team that organises events once every couple of months for young people (talking about topics such as money, gender equality, mental health etc.) for a few years now. I was in charge of taking photos of the events and generally having a creative touch when needed – like occasionally helping out with table ‘conversation starters’. I have thoroughly enjoyed spending my time being a part of the core team that run these events, but its time to step down from the role.

It’s not something I randomly decided – I thought about it for quite a while, but with the news that my health is not going so well, it made me decide that it was time to let go of that responsibility in my life so I can focus on my health.

I’ve always been a person who struggles to say ‘no’ to things. I often take on too much responsibility and it’s not until something goes wrong (like I double book myself) that I step back to see how much I have on my shoulders. Taking a journey of self-awareness means that I am stepping back before things become a problem. I acknowledge that saying ‘yes’ is something that I often do before really thinking about what it means for my life and I am trying to change that behaviour. So, I am taking the first step by stepping down from my role with this group, as a way to care for myself – by freeing up some of my spare time and concentrating on things like learning more about healthy foods that I can eat and reading more books in nature.

Do you take on too much? Think about it next time you say ‘yes’ to something!

Reactive Arthritis: Dealing with Disappointment

I have to say, the feeling of disappointment is not something that I come across often. I often feel frustrated and annoyed in situations that don’t turn out how I would like them to, but disappoint is another story altogether.

Why am I disappointed? Because as you may have read earlier here and here, I was supposed to have a rheumatologist appointment yesterday. I was called a couple of hours before the appointment to say that the rheumatologist had called in sick and we had to reschedule. It may not seem like a big deal to you, but my heart honestly dropped. I was so disappointed. I had been waiting over a month for this appointment, which included taking extra medication to cover me until then. I had also been waiting to hear what I am supposed to do in terms of physio, the expected timeline of this arthritis, how they think I’m progressing and to get a new treatment plan. The direction and course of my life is currently depending on this rhumatolgist, so to hear that my much-anticipated appointment was cancelled, was shattering.

Having the appointment cancelled meant that I also had to call up my doctors and get another prescription, as I had run out of medication on Monday morning. This turned out to be quite a hassle and of course cost me extra money!

Luckily, the next available appointment was Friday (could have been worse). It is, unfortunately, the most difficult day for me to take time off in regards to work, but after chatting with my manager, she said it was fine for me to take the time off. Later that day, however, (same day as the cancellation and rescheduling) I get a notification that the Friday appointment is now also cancelled and they’ll have to get back to me with another time. I feel for the rheumatologist lady (as she must be pretty sick to take the whole week off), but again, my heart drops. How long am I going to have to wait? What happens with the medication that I’m on? Do I keep taking it? Am I walking properly with my crutches? Should I be doing more exercises to help with the healing? The questions could go on forever.

They got in contact with me today and the new appointment is March 1st – too far away for me to stay on the medication that I’m currently on. That means that I not only have to wait another two and a half weeks to see the rheumatologist (to hear her pivotal decisions about my life), but I also have to visit my doctor again (more money!!) to get more medication and potentially change medication until my new appointment.

With every notification or phone call, I have felt disappointment. It has been hard for me to deal with, as my emotions have overwhelmed me. Having had time to process what has happened and now that I have booked in to see my doctor, I am trying to overcome the disappointment and keep myself focused on the future. Luckily, my best friend and I just booked three days away together over Easter and that gives me someone positive to look forward to! I am struggling at the moment, but becoming self-aware involves figuring out my emotions and right now, I know that planning ahead for something positive is the best thing for me to do. So, with that in mind, I need to plan three days worth of meals so we can do one supermarket shop and then relax for the whole Easter weekend. Got any ideas? Flick a message my way.

For those that are interested, the blog image is a picture of my newly purchased book, Self-Care for the Real World, I’d totally recommend checking it out!

Reactive Arthritis: An update

For those that have been reading my blog, you’ll already be aware that I’ve been living with Reactive Arthritis for 6 weeks now. For those that want to catch up, go here.

I thought I would give a quick update on how my Reactive Arthritis is going. As I said in my previous blog, I was (and still am keen) to read real-life experiences that people have had with their Reactive Arthritis, rather than read a bunch of medical stuff that may not relate to me.

Since the end of my previous blog, I have gone back to work on a part-time basis. I may be sore and tired but I’m so glad I was finally able to get back to work this week – even if it has only been a few hours a day. This whole experience has been incredibly challenging and unfortunately, I still have a way to go in terms of getting better. However, for now, I’m enjoying being somewhat useful again. Big ups to my workplace for being so understanding and supportive through this. As ironic as it sounds, I’m quite a lucky gal 💁🏻‍♀️

As stated in my previous blog, I have a rheumatologist appointmnet in a couple of weeks and they will determine whether or not I remain on my current treatment plan or move me over to a more intense plan. Unfortunately, since my last blog, the Reactive Arthritis has spread to my left knee and ankle as well. I went back to hospital for the fourth time to get more tests done and they decided to up my steroids once again and asked that I wait for the rheumatologist appointment before looking at a completely different treatment plan. Having taken bloods during this visit, they informed me that I was positive for the HLA-B27 gene.

Human leukocyte antigen B27 (HLA-B27) is a protein located on the surface of your white blood cells and is a genetic marker for autoimmune diseases such as arthritis.

Human leukocyte antigens (HLAs) are proteins commonly found on white blood cells. These antigens help your immune system identify the differences between healthy body tissue and foreign substances that may cause infection. Although most HLAs protect your body from harm, HLA-B27 is a specific type of protein that contributes to immune system dysfunction. The presence of HLA-B27 on your white blood cells can cause your immune system to attack those otherwise healthy cells.

It’s interesting that I wasn’t tested for this earlier, but I’m glad I know now. Regardless of this new information, I still have to wait for the rheumatologist appointment, but having this knowledge on board may or may not affect their decision for my treatment plan.

I am currently living life with less pain, on the whole. The swelling in both knees seems to be very slowly going down and I’m starting to need less pain medication by the day. That doesn’t stop me from needing to walk with assistance (crutches) and I still drip with sweat when I’m up and moving around too much. My body aches, but I no longer cry throughout the night in pain. There is a current heatwave here in NZ, so having inflamed legs doesn’t help with the overheating, but there’s not much we can do about that!

A weird side effect of using crutches is that my hand gets pins and needles in it. My right hand is the one I have been more dependent on over this period of six weeks (as most of the time it has only been my right leg needing the support) and it came as a surprise to me when it started to feel a bit odd. It turns out I’ve been hitting a nerve in my arm that in turn creates pins and needles in my hand, mostly in my pinky. Just a warning in case it’s happening to you – it may be because of your crutches!

Out of curiosity, some things that I am doing to help with my Reactive Arthritis are:

  • Trying to avoid as much sugar, gluten and dairy as possible
  • Eating pineapple (a natural anti-inflammatory)
  • Taking pro-biotic tablets to counteract the antibiotics I am taking
  • Taking turmeric tablets and making pumpkin soup with turmeric powder
  • Sleeping with ice packs under my ankles and damp cloths on my knees to help keep me cool
  • Drinking enough water throughout the day

If you have any questions about how I am going or have any handy tips, feel free to message me! I will update you once I have seen the rheumatologist.

P.S. The blog image is a Tropical Smoothie I made using fresh pineapple, a fair trade Huckleberry banana, some Homegrown orange juice and a tropical Juicie. The straw is from CaliWoods.

How Reactive Arthritis took reign over my Summer Holidays

When I was first diagnosed with Reactive Arthritis, I did what most doctors hate and went straight to the internet for answers. I wasn’t looking for medical opinions, however – I was looking for personal experiences so I knew what to expect.

So, what is Reactive Arthritis and how did I get it?

Reactive Arthritis is an inflammation of the joints and you get it after having an infection in the bowel or genital tract. The day before my inflammation had started, it was confirmed that I had salmonella – a type of food poisoning. To read more about Reactive Arthritis, take a look at this brochure from Arthritis NZ and to read more about salmonella, take a look at this brochure from the Ministry of Health NZ.

How did it all start?

Some could say the timing was a blessing, others not so much. I caught the salmonella at the start of December and it lasted around two weeks. The original day I came home early from work due to feeling sick, was also the day that my dog passed away. It was sudden and heartbreaking – with putting her down as the only humane option at the end of the night.  I will never forget those moments when she closed her eyes and you could finally see her at peace, no longer panting in pain or confusion. My heart, it still aches.

Due to this traumatic event, I wasn’t taking too much notice of my poor health. Nevertheless, once I had been tested and it was confirmed that I had salmonella, I was told to just keep on keeping on and that I wouldn’t be getting any medication to help. At that point, I didn’t mind, as I could feel that it was finally coming to an end. Little did I know, that Reactive Arthritis was coming my way!

How did it ‘reign over’ my Summer Holidays?

I write this post four and a half weeks since I first experienced symptoms and I still have a long way to go in terms of healing – just so you get an understanding of how long this process has been.

I originally woke up one Saturday morning with a sore jaw and a sore ankle. Thinking that these two things could not be related and not being in too much pain, I went about my day. It was an early Christmas for my family as I was to fly out to France the following Friday 22nd December for my summer holidays (although, it would be winter in France). Over the course of the day, I battled with the dregs of my salmonella and the beginnings of inflammation in my left jaw and right ankle. Over the course of the next 24 hours, the pain got worse and my ankle was starting to be noticeably swollen. A friend had come over and she took me straight to A&E. The diagnosis was not straightforward, unfortunately, and I was sent home with the suspicion of Reactive Arthritis and a prescription for low dose painkillers and low dose steroids.

I am unable to take anti-inflammatories, which is something quite important to note (as it changes the whole course of action in terms of healing when it comes to things like Reactive Arthritis).

Hours after my initial visit to A&E, my mother had to take me back, as the inflammation was getting worse and I was becoming less able to put pressure on my foot, making it hard to walk. They sent us to the hospital for more testing and I was thankfully able to grab a wheelchair while we were moving around for different tests. After some bloods, an X-ray and after they took some fluid out of my right ankle (unpleasant experience, but necessary), they confirmed that it was Reactive Arthritis and I was told to continue the treatment that was prescribed to me at A&E. Within 48 hours I was back in the hospital, via an ambulance, due to how much pain I was in. I was thankfully prescribed better painkillers and was given a few extra days of steroids. They told me to visit my doctor before the end of the week as a checkup. At this point, it seemed like they assumed I would still be making it over to France at the end of the week – boy, were they wrong.

Friday came along and I had to cancel my plane tickets. It was a hard decision but I wasn’t improving and knew that it was the smart idea to cancel rather than reschedule at this point (thankfully I did, seeing as I am still in the healing process a month later). It was time to visit my doctor. He saw me walking along on my crutches, unable to put any pressure on my right leg and instantly knew that the dosage of steroids I had been given were not high enough. He increased the dosage and warned me about the dangers of being on the higher dosage – your body becomes dependant on them and it can be super dangerous to suddenly stop taking them. There are also way higher chances of getting an infection, as well. Within a day, I already felt better. However, over the next 48 hours, I then began to feel worse. It had spread to my knee and it was excruciating to bend my leg.

Having done our online research, we could see that it wasn’t unusual for the inflammation to spread. A few days later, however, I was in too much discomfort to ignore that things seemed like they were getting worse. We went back to my doctors (not my usual one, as he was on annual leave) and the doctor sympathised with my pain and gave me longer lasting painkillers, but said there was nothing else he could really do to help. We went for a blood test as a precaution and by the next morning, I was back in the hospital. Apparently, the blood test I did post my doctor visit didn’t look too great, so he called me up and sent me to the hospital ASAP, thinking I could have an infection. We did more blood tests at the hospital and thankfully I didn’t have an infection. They mentioned that they thought I would have been successful in my healing at this point, but my knee and ankle were still quite swollen. Luckily, my left jaw had gone from painful enough that I could only eat liquids or extremely soft foods to being able to eat relatively normal and only have sporadic belts of pain.

Seeing as my knee had the most inflammation, the doctors decided to drain some fluid out of it – like they had done the previous week with my ankle. They warned me that it increases my chances of infection, but can also be really helpful. Around half a cup later, my knee was not as full. They did some more tests and decided to also inject a steroid directly into my knee. This was extremely painful and I wasn’t expecting the doctor to take the needle and in and out a few times to “make sure she was getting it in the right spot”. Despite the pain, I appreciated both attempts to help my knee, as these actions seemed to help show progress in my healing. My father has rheumatoid arthritis and seeing as I was taking much longer to heal than they thought, we had to double check that they had not misdiagnosed me. I had X-rays of my jaw, pelvis, both hands, both knees and both feet. Thankfully, the results came back clear.

I spent the next three days in the hospital, getting out just in time for New Year’s Eve – not that that meant much to me at the time. It has been two weeks since my stay in the hospital and I am still in pain, which changes on a daily basis. I am getting more sleep than I was a month ago, although I cannot wait until I can sleep through the night. I went for a check-up at the doctors last week and he has suggested that I continue on my current treatment plan of steroids until I visit the rheumatologist in mid-February, so they can make an official analysis. I am seeing a very slow positive progression of the swelling but the pain is still quite prevalent.

So, how did Reactive Arthritis take reign over my holidays? Well, I had to take the last week of work off in December, I spent two weeks unable to walk and two weeks still on crutches and bed rest, I’ve had to take the first week off work in January and I’m still in the process of healing. I essentially had no holidays. I am, however, extremely grateful to my mother who has taken care of me this whole time and to all my friends and family who have visited me in the hospital or at home. It’s amazing how times like these show you people’s true colours and makes you appreicate all of those around you.

I hope to update you all on my progress over the next month. Please don’t hesitate to get in contact if you have any questions!