Sunday, January 15, 2012

It´s been some time...

How are you my dear friends?

I haven´t write anything for so long.... I didn´t give it up completely, but only a little bit :) there are many great great great blogs from worldwide in english language, and I have nothing special to offer when it comes to our topic. My health state is now very good, my medication helps me a lot and I have lots of situations to deal with that are not related to my rheum. So I don´t have that much ideas for blogging.

But I found a way how to deal with my RA troubles and to do something also for others - I do blog for Slovaks. There is not even a one blog about rheum here! Only one about Sjorgen´s, but nothing more. So I started blogging and I think it´s gonna be a lot succesful. I am also starting to work with Slovak national rheum organization, and that makes me feel that I really do something that is right. I have some new ideas that should improve performance and I´ll do my best to raise awareness about that disease (but I also, I have to deal with it myself first, and decide about staying anonymous and private or not).

I hope this is gonna work. So for now, I don´t have many ideas for my english blog, but I still love yours and I read rss feeds every day :)

Love you ♥

Tuesday, December 27, 2011

Many things happened...

...bad or worse. As for this whole year. And I´m becoming tired of it and my inner environment knows it very well. 

I start to see very clearly connection between my physical and mental state. As things go by in good or normal way - even if I am in big hurry and days are manic (you´ll be suprised, but I love these days. I have no time to think about small, unimportant things and even about my pain, when it´s low) - I´m ok, nothing hurts that much to be limiting for me. But when all goes wrong from my point of view, when I´m under pressure or I don´t feel comfortable at all, rheum takes big advantage of that. 

I know many of you experience that, but I am just discovering those rules of behaving of that stupid stupid stupid disease. 

And what trusts me in that I am right is that I have seen my rheumy last week. My blood tests were really good, much better, CRP was only 9!!! And two months before it was over 50. And I also feel good. Rheumy was really glad, smiling all the time, that she doesn´t see often people get that better from low dose of methotrexate. Also told me that my wrists and knees are a bit more movable since the last time.

So, my disease clinically looks great and under good piece of control, I felt great. Now I´m not ok in my mind and emotions, and my hands, back, hips and feet hurt, I feel tired, I have fever, and not ok at all. 

So things are getting complicated. 

I am thankful to great God to have all of you. I keep reading your blogs in my RSS, also older posts, your facebook pages, twitters... I love that age, because of possibilities. I can´t imagine how lonely I would feel without the internet.

Friday, November 25, 2011

Anonymous?

Hello my RA friends :)

I haven´t write anything for so long just because my school semester ends in few weeks and I have really many tasks to complete, many crative stuff, and sometimes I have really little energy to be creative :)

This evening I was out with my 3 best friends from secondary school - we haven´t seen each other for over 1,5 year and we chat on the internet only rarely. We have been to our favourite "young-ages" ( :) ) places and it was really lovely time.

But that makes me think of difference of being with people that know about my condition, and those that don´t. As for me now, in my current situation and current health state, I consider better to be surrounded by people that know what´s for me and what´s not.

The only people (in my everyday life) that know I have RA is my boyfriend, two my girl friends and my closest family. With them I feel relaxed, because I know that they respect it, and I know what I can expect.
With those my sweet girls I was out tonight, it was different, I felt a bit stressed, it was first time since I don´t feelOK I was out with "someone else" (you know, I´m not very sociable person, I´m happy with my small group of people :)). And for example, we went to tea house and I prayed in my mind for them not to decide to sit on the matresses on the floor (you know, tea house.). And in the end we went to see off one of our friends to the bus station, we were a bit late and girls were almost running through the city. It was like they were trying to kill me :D but I didn´t tell a word, as I don´t want to look like lazy one :) I finally did it somehow, fortunately I took extra pill before going out :)

But the idea of those irrelevant stories is that when I´m surrounded by people that know what´s going on, I don´t have to be afraid that some problem can appear, they care of my comfort, or when something is not ok, I can tell them without any problem. And that´s how it works for now, everyone´s OK with this respect :)

And yes, one of the reasons I don´t want to speak about my RA to other people is that you can´t imagine how few people know about this illness here. Also people from national rheum organisation told me that it´s really bad state with knowledge about what Rheumatoid Arthritis is. I bet, that maybe 90% of the people have no idea, that RA can happen to someone who is not already at least 60. But that´s theme for another, very long blog post :)

Hugh and lots of love :)

Wednesday, November 16, 2011

Big day to celebrate!

Hello again :)

The reason I didn´t write for so long is that I´m feeling really well :) and I also have thousands of tasks to do for school and job. But it´s soon over, I have only 4 weeks left to the end of this challenging semester and then I´ll have some more time :)

Tomorrow I start 6 days-off to enjoy my boyfriend and my BFF (both of them study in different towns, so we´re together only very little..) and right tomorrow we have big holiday at Slovakia.

For me and some people here in country, it´s biggest holiday during the year (except Christian holidays). The holiday is called "The day of fighting for Freedom and Democracy" and we celebrate 17th November 1989 - the Gentle revolution. It was non-violent revolution of students against communist government of Czechoslovakia. Unless it was peacefull revolution, it was violently supressed by police in Prague (capitol of Czech republic) and also in Bratislava (capitol of Slovakia). Few days after that about 400 000 of people met each evening and were ringing with keys or lighting candles, all in peace and quiet, wanted to change the system. They wanted end of communism and democratic elections. After many many events, communism was over and in June 1990 there were first democratic elections.

After 22 years situations are changing and soon there will be need to make something similar... but that´s another story :)

Thank you for reading this, and on 17th November make a little thankful memory to our parents who did that for us :)

Big hugs and enjoy also your weekend!

Tuesday, November 8, 2011

Methotrexate helps (probably) :)

Today was a very lazy and long day... Yesterday I was so full of energy that I couldn´t believe it. I made so many tasks for school and work I haven´t for very long time. But today it´s completely different, I had to fight with myself only to sit at office for some time. Waking at 5:45am for school is really killing me :)

During the day I called my Rheumatologist and that was really good news! My CRP went to only 20 (to compare with last months´ 55) and liver  & kidney test are also OK, after month of methotrexate (I take smallest dose - 7.5mg, but so far, without side effects, except of one time throwing up - morning next day after taking pills - and achy tummy when it is empty). The only problem is light anemia, but that´s not a big deal :) She told me that results are good and it is great that since taking those pills it doesn´t go any worse and we have to keep on trying this treatment for 2 months. I like her so much :)

I celebrated that with small shopping :D I bought LOVELY blouse that went from 17€ to 5€, perfect buy :) and I stopped at one jewellery (watching wedding rings) and found the one I was dreaming of for so long!!!
Aren´t they loveliest stuff you´ve ever seen? I tried it on my hand and it fits perfectly to my lovely engagement ring and looks so luxorious and glamorous... oh. I didn´t wanted to put it off my hand! I won´t have a sleep at night, I still see them in front of my eyes :) My BF also likes it... I hope they will be ours (no matter the extreme price :-/)

Hugs from RA lady :)

Saturday, November 5, 2011

How I happened to be there :)

Well, that´s my first post :) I was hasitating with writing it for about 3 weeks, because I really don´t know how to begin :) probably I should start in a very classic way and tell few words about me and my story :)

I live in Slovakia, small country in central Europe. Maybe that will be the benefit of my blog, I can show you how the medicine system works here in small, ex-socialistic country (it does very well at all, as for me). My story to became RA Lady started some years ago... maybe 3, when I started to complain about pain in my knees joints, but it was nothing serious. 1 year later my GP sent me to Rheumatologist, to make sure I´m ok. Pain was still not any bad, only in knees.

It got much worse this year, while I studied one semester in Sweden. I should enjoy it as a student, but it was, unfortunately, time of many bad events and hard times. On April my feet started to hurt after walking, and also without walking, my toes did hurt a lot. I thought it was all just because of wearing very flat shoes that I love.

On august, it went really much worse. My knees, feet and hands were very painful and I was sooo tired every day. My GP made blood tests and found very high RF, so he sent me to my rheumatologist. She sent me to X-rays, but results were OK. She agreed that some of my joints are inflammed, but she couldn´t give me a diagnose without fulfiling some critiria. So I was about month on diclofenac, but that didn´t help at all. In October I was on blood tests again and the results were really scaring :) my RF was over 500 and CRP and aCCP were really very high.

There was no doubt I have rheumatoid arthritis. The day of my diagnosis is also the World arthritis day :) I was ready for that result, because I was reading about it a lot, and I felt I´m really not OK. I was partly "happy" that I have diagnosis, because we knew what´s going on and we can work on making it better. I trust my rheumy, she´s very friendly and explains me everything we talk about. She always makes a lot of time for appointment with me.

Now I am on methotrexate 7,5 mg and diclobene. My RA doesn´t go worse, but not also better. My knees hurt still a lot, and the same with my hands. But I strongly hope it will be better soon :) I have to go a long way with accepting the future and possible restrictions in my life, but I will do it all with great people around me and with perfect support of woldwide bloggers :)

Now, when I have my first article out, I hope it will be easier for me to write more often :)

And one more thing... EXCUSE my bad English and mistakes I do...