My name is Jennifer Thatcher and I was diagnosed with Juvenile Rheumatoid Arthritis at 13 years old, which was 17 years ago – gee I feel old.
I am writing this blog post as there are a few newbies out there and I hope this helps them along their way. The sad thing is there will always be newbies out there as unfortunately I will not be the last to get RA.
Once upon a time RA was difficult to treat but with all these new drugs RA can be manageable and sometimes even go into remission.
When I was first diagnosed I was put on aspirin, then as the years went by I was put on many anti-inflammatories. As my arthritis became even more active I was put on my first Disease Modifying Anti-Rheumatic Drug (DMARD), Methotrexate. This helped to treat the RA for a while, then again the disease activity started up again and I was put on Plaquenil and then later on Arava. After all these failed I started my first Biological Disease Modifying Anti-Rheumatic Drug (BDMARD) which was Enbrel. This gave me some relief for a while but again became ineffective. So at the moment I am on my dream drug Orenica! So with trial and error I have found a treatment that makes it possible for me to work full time and be able to enjoy having fun with my husband and friends.
It can be frustrating at times when a drug does not work and unfortunately as everybody is different not every drug will work or even work the same, and the same with the side effects. So continue to work with your doctor for the best solution for YOU. If it helps, note down how you are feeling including any pain and fatigue and if you experience any side effects. Be as open with your doctor as you can because even the smallest detail might help your doctor get you on the right treatment. So please do not give up hope. As research continues they find more advanced drugs and better treatments for RA. Once there was just Aspirin and now there is a whole range of different drugs.
Another frustrating thing of the medications is a lot of them take some time to work. Most DMARD and BDMARD’s can take up to 3 months to work. Where the anti-inflammatory drugs and corticosteroids work nearly instantly. The side effects of the drugs can be scary but you need to be able to discuss this with your doctor and weigh up the benefits and risks associated with the new drug. When I first went on Enbrel the side effects did scare me and I had to have a few tests to make sure I was able to start taking the drug. Once I saw what the drug could do for me after discussing this with my doctor I knew it was the right decision for me. I was able to go back to the gym (bike riding only mind you) and to aqua aerobics. Once Enbrel’s effects wore off on me and my site reactions were getting rather large and the tingling in my legs and feet started I knew it was time to move on to my next drug. So after discussions with my doctor we decided on Orencia. I have had fantastic results with this drug and have been on it for over a year. My side effects are not severe, with only a stuffy nose and tiredness after the infusion and are usually gone by the next day. I have also got another great team member on my side to help me with my RA and that is my infusion nurse that gives me Orencia – bonus! When dealing with RA you must keep in mind that you are trying to slow the progression of the damage done to your joints. Also you want to stop any progression to any other organs. So being patient helps but when in pain and fatigued this can be hard. Having a support group around you is very helpful.
Growing up my parents were fantastic and now my husband is my rock. Possibly the reason he is so good is because he grew up with his mum and dad having arthritis. He is usually the one telling me to slow down and to think about how much I am doing and how it will affect me the next day/next week. He usually cooks my dinner, takes me anywhere I need and is very helpful getting lids off, lifting heavy things and reaching in low and high places. But best off all he is my strength, listening post and best friend when I am not doing well. But when I think back to previous loser boyfriends I am glad I met them and moved on. As much as it hurt at the time I know they would never be what I need them to be now. I only have a few close friends but they are the best and very supportive. I did have many friends in high school but possibly people I would not share my deepest secrets with or my health problems. Now the friends I have are people I can really rely on. I have been known to take them into the doctor’s appointments with me when they have driven me, as I could not drive at the time. Some have had the pleasure of dropping over to find me in my PJ’s but I knew it would be OK. We just sit around chat, eat and watch movies when I am not doing so well. I don’t do the party scene anymore as I need my more than 8 hours sleep. So friends might go but you will know who the keepers are and they truly are your friends.
Restricted mobility can become a real issue for people trying to live with arthritis. By mobility I mean when your illness impacts on the lower half of your body, affecting tasks like walking, sitting/standing and balance. You may not be able to walk distances or for long periods and stairs can become a real challenge. Even the type of seating may affect you going to certain places.
Isolation can become a big problem for those with restricted mobility. And it can stop a person getting out and about to do everyday tasks or just enjoy yourself. It is worthwhile being aware that isolation can lead to depression. Especially young people don’t like being a burden to others. Their life is no longer their own. Life has to be planned and it is very hard to be spontaneous. It can also lead to problems with self-esteem and self-worth.
Joint pain coupled with access and mobility issues in some people can lead to one questioning life. Dealing with everything might just be too much for some people to bare, especially if the arthritis or pain isn’t well controlled.
Restricted access to public transport, housing, shopping centres etc can be very frustrating and upsetting for many people.
- Not being able to get on the bus because it has steps. This applies to all public transport and taxis.
- Not being able to visit friends because their houses have stairs, etc.
- Not being able to access shops because of steps, narrow aisles, stock cluttering the aisle, no raised or comfortable seating (cafes restaurants) etc.
- Losing ones independence.
We as consumers need to make the community aware of our needs. Everyone, regardless of age, ability or disability have equal rights and we all have feelings. I personally won’t make purchases from any shops that I can’t or have trouble accessing. I will go somewhere that respects my rights as a person as far as choice. Everyone needs to be valued.
After being diagnosed with juvenile rheumatoid arthritis when I was 12 years old, I didn’t realise what an impact the disease would have on my teenage years and more so, that it would be a life long condition I would have to deal with.
Being an independent and positive natured person, I learnt to deal with my condition in my own way. Of course my family were there every step of the way and that was enough for me then. Having to go to school each day was a good thing, it kept me busy and active. My school friends found it difficult to understand what I was going through and I did not talk much about it during school. It was like a secret illness. Even though my symptoms were obvious to everyone, not may people asked, they just accepted it, and so did I.
After finishing high school I started working as a graphic designer and that was a busy time. I loved it and found that now I was getting older, my colleagues understood me and I could talk about it more easily. My condition was ingrained into my daily life and I found ways of doing things to make it easier. I was independent.
Having one or two relationships was also a confidence boosting thing, it boosted my self-esteem. I felt good and my life was ticking along.
During my mid 20’s my joints started giving me lots of pain and over a four year period I underwent two knee replacements and two hip replacements. The first operation was a scary experience, the following two were much easier and by the fourth I was bossing doctors and nurses around!
These replacements made my daily life much easier and I was still my confident self, always being told “you are so positive” and “you are so brave”. I didn’t need any help from anyone. My arthritis was not going to “take over”. I felt so confident with how I conducted myself that I was encouraged to enrol in a self-help management leader course, run by Arthritis Vic. I had experienced so much and thought I could help others. The course was not as easy as I thought it would be and actually helped me more than I thought.
Years passed and I was still feeling independent, living by myself and eventually meeting my future husband. My mother-in-law even joined Arthritis Vic because of me, thinking I may get some benefit from the newsletters. So I always knew Arthritis Vic was there, but I still had the feeling that if I let myself be vulnerable and mix with other arthritis sufferers, it would “break” the confidence bubble I had been living in all this time. I did not want to see people worse off than me, people that I might be like one day, people complaining about pain.
Then, about 2 years ago my mother-in-law showed me an article about the “Young Women’s Arthritis Support Group” (YWASG). At the time I was not very happy with my specialists, was not moving ahead in my treatment and my arthritis was not great. I thought, maybe I should call them, who knows what may come of it. So I did. I spoke to Sue and it was amazing. She asked me about my condition and it felt wonderful to have someone understand exactly what I was about. I got off the phone feeling really positive and excited about meeting some of the other ladies from the group. I met up with them a month later at a restaurant and it was a great experience. I could ask them about their conditions and talk about the little intricacies of having arthritis; the funny day-to-day tasks we all find hard, the medications they were taking and the specialists they were seeing. I could see they were on top of their treatment, so I got a recommendation to a new rheumatologist.
I arrived home and my husband could see I was happy. I was bursting to tell him how it went.
I had survived my first support group! I was not depressed or negative after being around these people, I was humbled and excited about the future. They were lovely ladies, each with their own unique story, and it was nice to share mine with them too.(remove comma)
My new rheumatologist turned out to be wonderful, putting me on a new drug trial which has been fantastic. I am still involved with YWASG, getting together with the women every few months and also helping design the YWASG website, which we hope will turn into a wonderful community where women can come to chat with others about their life.
So, my advice for anyone who is wondering about joining a support group? They are not as scary as you think! Do it in your own time. I believe it is important to be independent and a support group may not be something you will ever need. I don’t ‘need’ YWASG, but it is very nice to be part of a group where I can meet new people and share my life experiences. Knowing that I may be able to help someone, even in a small way, just by talking to them is a great feeling.
Stiff Chicks is the blog of the Young Women’s Arthritis Support Group of Victoria (Australia). We have plans to provide regular posts with information about living with arthritis, news about treatments, stories from our members and more. We are getting everything set up right now, and recruiting help from our members to write content, but we expect to start posting weekly in a few weeks from now.
We hope you will enjoy the blog, and look forward to making many new friends.