Saturday, February 20, 2010

A busy few months!

It's amazing how much can happen in a few months, how life can completely change, morph into something you didn't imagine happening for years, if at all.

Six months ago when I was sitting on the couch day after day, in excruciating pain, not bothering to get up to get food because it hurt so much or to do anything all day besides have a hot shower, a cup of tea and lay on the couch watching bad daytime T.V. I could never have imagined being where I am today.

I was stuck in a rut. 

I had no money but wanted to live out of home to preserve my independence. 

I was a bit of an emotional wreck. I was coming to terms with having a chronic illness that was out of control. I felt I had alienated my friends over the last few years due to a bad relationship I was in at the time. 
I felt I had no one, that no one would want me and that I had been dealt a pretty rough hand.

But I have since made a fairly big decision. I've decided not to let pride get in the way of life.

In August last year it took me 3 hours to walk about 100 metres.
It was pouring rain, I was at Footscray train station with people all around me, i had tears streaming down my face.

In 3 hours, 3 people asked me if i was okay.
I wasn't but I didn't want their pity or their help. I am extremely stubborn you see. 
I was even going to attempt to drive home. It was only a 5 min drive I told myself. i just wanted to get home.
I'd turned on my car.

Then a lady came up to me and said-

"You can't drive, turn off your car. My aunty is a nurse I will call her or an ambulance." 

I said call her, I will call my parents.

My parents came and picked me up. I had managed to sleep in my car for the hour it took them to get to me. One steriod injection and three days later I was feeling okay. Just okay.

I have no problems now admitting that I need help. I do.
If i can't go out, I tell my friends I can't and I find something that I can do at home that I enjoy.
I still push myself too far sometime but I realise it much earlier and make changes.
There is no point making life harder than it has to be. It is already hard enough.

I had left my previous Rheumatologist who was useless, and had found a new one who was great but I was unable to get onto new, much needed medications due to the previous Rheumy being VERY slack with sending my doctors records to me. 

2 months, lots of calls and lots of waiting later I was finally able to apply to start a Biologic medication. All the other medications I had been on before had failed or I was unable to tolerate due to severe side effects so this was kinda my last resort.
I now have to inject myself once a week. It has been 3 months since I started the new medication. 
It worked from the day I took it. The nurse who came to my house to help me for the first 4 injections was blown away with how well I was doing.

Six months ago I could barely walk, in January I was waterskiing!

Life can change. There are ups and there are downs. I am just taking it one day at a time. 
Enjoying life. 
It might help that I have a new romance in my life, but thats just an added bonus.

I found this quote and feel it sums up how I am feeling today and of late.....

“Remember that not getting what you want is sometimes a wonderful stroke of luck.” 
- The Dalai Lama

4 comments:

  1. Hello!

    I recently started following your blog and completely forgot to introduce myself :) Then realized that I might seem like a stalker creep cause i didn't write any comment and my blog profile doesn't tell much about me. I'm fairly new to these blog thingies so I'm still a bit confused how these things work :D (for example I didn't figure out if I can send private messages, probably not)

    Anyways, I really enjoyed reading these blog posts you've written^^ You seem to be a really nice person :) I'm 21-year-old girl living in Finland. I too have rheumatoid arthritis (diagnosed March 2009) so I'm fairly new to the disease and coping with it. Especially reading this blog post affected me strongly. Taking it one day at a time is really important though I must admit I sometimes still forget that.

    Umm, anyways, it's nice to meet you Candi! :) I hope I don't seem like a stalker :D

    Greetings from Finland!

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  2. Thanks for your comment Heidi.
    You don't seem like a stalker, blogs are an excellent way to learn about other people whilst still remaining anonymous.

    I think you can send private messages but I am not sure how either!
    Comments are fine with me!

    I am glad my blogs have had an influence on you, if I help only one person with what I write (after myself) then it is all worth it. I just personally enjoy getting my thoughts and feelings out of my head :)

    So you live in Finland, what sort of medical system is there in Finland? Do you have lots of expenses covered by the government or do you have private health cover or do you pay for your expenses yourself?
    What stage is your RA at? What meds are you on? Do you find them helpful?
    Sorry about all the questions, feel free to answer all or none, I am just curious :)

    I am a member of http://ywasg.com/forum/ which is a young womens arthritis forum.
    Young as in not elderly- so there are lots of women at different stages in their RA. Take a look, it might be of some help to you also :)

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  4. Your blogs do have an influence on me :) I don’t really know other people with RA, and being young I’d like to get to know especially young people with RA. So it’s really nice to read these things you write and I’ll also check out that blog you mentioned :) In the city I live in I don’t think we have that kinda support group. There is this RA foundation but it seems young people aren't very active in it.

    It’s okay to ask me questions, I answer them willingly:)

    I come from a familyline filled with RA and psoriatic arthritis so I guess it was kind of easy to guess that I’d get that too at some point. A year and half ago (summer -08) my left knee got achy. I actually went to see a doctor after the pain had been going on for a month or so. The doctor didn’t really react, just said I’d probably hurt my knee while jogging or something like that and just told me to rest. So I did that, kept on living as the pain wasn’t too bad, the bad thing is I got too used to the pain and didn’t worry about it much for a long while. During Christmas time my other knee as well as my elbows, wrists, ankles all got swollen and achy. That made go to the doctor again, then rheumatologist and voilá, I was diagnosed with RA. When I look back to that time when my knee first started hurting, I wish I’d reacted earlier. Now I notice I ended up telling my story from the very beginning :D

    The system in Finland is pretty good for a RA patient. I go to a public rheumatologist which means that getting an appointment can be a bit difficult. There are private rheumatologists too but being a student and not having much cash prevents me from using that option. Getting an appointment for public occupational therapist or physiotherapist is much easier though. Here RA patients can get some equipment almost for free, for example after talking with my occupational therapist I got scissors, bottle/ jar opener, finger splints and stuff like that and I only paid the appointment fee.

    What comes to meds, here our health insurance covers most of the expenses (72 % of a medicine’s price and in some cases 100%). And after one has spent about 700 euros to meds during a year our health insurance covers almost all medicine expenses for the rest of that year. Unfortunately that is the reason why they are very strict about prescribing biological meds right away, they’re so expensive, not cheap for government. Biological meds are given if traditional ones don’t work or if RA is very severe. How are these things arranged in Australia?

    Currently I’m taking sandimmun neoral (100 mg), reumacon (150 mg), prednisolone (5 mg plus) and extra calcium daily as well as methotrexate (12,5 mg plus folic acid) once a week. I have tried some other traditional meds too but side effects were too severe for me to continue taking them. Currently my Arthur is being more active again, especially knees, fingers and ankles have been troublesome lately. They increased my meds some weeks ago so now I’m hoping they’d work better soon :) If increasing my current meds doesn’t work, I hope they’d prescribe me biological meds next. RA has affected my fingers the most, I use splints a lot these days.

    I really got carried away, I wrote like a maniac it seems :D sorry about that^^

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