As I've been reading up on RA one of the things that is consistently stressed on every website and in every article I've read is the importance of support from family, and having family well informed on what is going on in my life will help me emotionally. I know you all have busy lives, but this disease has become such a huge part of my every day life I want to share with you what I'm going through, and I'm hoping it will really help me to know there are people I can talk to when I'm having a bad day or week.
I am in no way doing this to make anyone feel sorry for me, I just want to be treated normally and make people more aware what RA can do.

Thursday, October 9, 2008

In the begining

After a year of mystery aches and pains, a general practitioner who couldn't figure out what was wrong with me, and being on a mild steroid (prednisone) for the better part of the year I was finally referred to a Rheumatologist, who unofficially diagnosed me with Rheumatoid Arthritis (RA) on my first visit, with the official diagnosis confirmed at my follow up appointment. Because I was pregnant at the time of my diagnosis, treatment couldn't be started until after the baby was born, with the chance that if I nursed the hormones in my body may keep me feeling decent enough to put off treatment for a few month. I continued taking prednisone for the remainder of my pregnancy, about 4 weeks after Jack was born I had a serious physical crash, I had to wait 4 more weeks to get into the Rheumatologist to discuss a treatment.

In the few weeks I waited life was pretty hard for all of us, there were several days I had to send my boys away to be taken care of by family and friends. Andy had to help me get dressed, I spent so many days on the couch, I was unable to do simple daily tasks like peeling bananas, walking up the stairs, driving a car, picking up my kids and dressing myself. It felt like the absolute longest 4 weeks of my life.

When I did finally get to the doctor he started me on a very aggressive treatment that same day, which involves taking several pills a day and giving myself a shot once a week. I started noticing a difference after a couple weeks, a minor difference, but at that point any change for the better was exciting! It's been almost 7 weeks since starting my treatment and every week I notice improvements. I still have bad days, and every day I have aches, but it's slowly getting easier to deal with.

That in a nut shell is what's gone on so far.I'm just grateful for everyday that I can get out of bed and take care of my family, play with my boys, walk up the stairs and all the other daily tasks I never even gave a second thought to. I tend to get a little too excited when I can peel a banana or open a jar. Things I don't think anyone ever thinks they'll take for granted!

I'm to the point where I can pick the boys up again, I can play with them on the floor and make dinner. But everyday I think about this disease, I'm lucky enough to have Andy by my side every step of the way. He has been the greatest support for me, he's been so patient and willing to take over caring for the boys on my harder days.
Someday I plan on living close to home, and I may need your help. :) Lucky you!

I thought since Silas and I both will be dealing with this for the rest of our lives you all should be doubly aware! :) I'm also grateful that since I have to have RA, I at least have it now. There are so many treatment options that can make it possible for me, and others with RA, to live normal and fulfilling lives. And everyday that I keep thinking about how much better it's getting the less I think about the uncertainties of the future, which can be a little scary.

I probably won't update this very often, maybe on a weekly basis, or if something "big" happens. But there are links you can click on to learn more about RA. We (I think I can speak for Silas as well) can use all the understanding and support you can offer.

5 comments:

Unknown said...

What a wonderful way to share with us! It humbles me and makes me think of all the little things I should be thankful for. You are so strong and still have such a great sense of humor. I hope you will continue to update this blog often and hopefully you'll continue to feel better in the coming weeks as a result of this treatment.
Love you!

Silas said...

Great blog Kiz. It's sometimes hard to talk to people about something like this because they don't really understand what it's like. I am greatful that I am finally on something that is taking care of the pain. I remember just over a week ago when I got excited showing Robyn that I could move the knuckle of my thumb again. Sadly I almost feel like crying writing about it. It is so easy to take these things for granted it's true. I went for months without being able to play much with my boys, help with chores. Robyn had to help me get my shoes and socks on sometimes. I had to train myself to tie my shoes with different fingers so as to avoid as much pain as possible. I wasn't able to write without pain, and being at work was a nightmare because no matter how hard I tried to get them to understand the pain I had, when it was not something they could see, they couldn't understand.
I'm sad yet glad that we are going through this at the same time. I think it is odd that we have this at the same time, but one of the greatest comforts any one can have in life is someone else who understands. Keep up the blog! I will peek in now and then. Love ya!

Joleen said...

I don't know what to say. I am actually moved to tears. If it were possible, I would do this for both of you. I love you.

Robyn said...

Thanks Kiz. I was just thinking that Andy and I should start a blog about living with spouses who live with RA. Just kidding. I really appreciate you starting this blog. We will definitely keep up with the blog.

Andy said...

I'm sure we can swap some stories next time we get together. :-)