Monday, February 24, 2014

My First 6 Months with RA

It's hard to believe it's been 6 months since I found out about my RA diagnosis.  I'll probably never forget the day I got the phone call as I was standing in a super loud Jewish deli in New York with Alli when my GP called to tell my blood tests and symptoms indicated that I had RA and would need to meet with a Rheumatologist to discuss a treatment plan.  In the first days after the diagnosis, I was pretty much in a state of shock and was pretty scared about how it would impact my life, but over the past 6 months I've gotten to the point where, for the most part, I've accepted it. 

I quickly learned that it was best for me to not read about the disease online because there is a lot of scary stuff out there - things like articles on how RA shortens your life expectancy or can impact your heart and lungs or results in being in disabled status/unable to work.  There is some truly scary stuff out there, and while some of it may apply to me, I guess I am in the 'ignorance is bliss' category.  I have a doctor I trust who will tell me what I need to worry about, so I leave the worrying up to her and avoid reading all the scary things out there.

While I have moved towards acceptance of this chronic disease, I still have my bad days.  Days where I get frustrated over my limitations, especially my inability to do any weight bearing activity as my upper body joints are still not doing great.  Besides that, I still can't really wear heels as it puts too much pressure on the joints by my toes.  Not being able to wear heels might not seem like a big deal to others but it bothers me as I feel best and most confident in a pair of heels.  Lastly, I get frustrated over the limitation on the amount of alcohol I can drink each month (I am limited to about 2 drinks/month due to medication I am on that increases the chance of liver damage).  My frustration mostly stems from having to explain why I am not drinking - it's amazing how many people will ask why I am not drinking or jokingly ask if I am pregnant. 

I also get frustrated by the number of drugs I am on.  It feels weird to pull out my bag of pills when staying at others' homes or when I am eating breakfast in a public place.  I have cut out one medication, but am still on 4.  Granted 2 of those are only taken once a week, but it's still a lot.  It seems like every week I am getting a notification from Target that I have a prescription to refill so it's a constant reminder that while I am doing better, my "new normal" is so different than my old one.  Now I have pill bottles on my counter, sharps containers in my dining room as that is where I give my injections and syringes of medication in my fridge. 


This guy is both a miracle and my enemy at the same time.  It's improved my joint paint but causes skin reactions. But the good outweighs the bad.

All in all, I am doing pretty well and I have seen improvement, but I feel like it's sort of an internal silent struggle at times.  I hesitate to talk about it with family and friends or on the blog because I don't want to be that person who is always talking about her health.  The disease is manageable and I am coping with it as well as I can, but it still sucks that it's something that I will have to deal with for the rest of my life.  And it's been tough to deal with it on top of all the other struggles the past year has contained. 

All that said, I'm in a better place, health-wise, than I was 6 months ago, and I expect to be in an even better place 6 months from now.  I expect the skin reactions to go away and my upper body joints to heal a bit more.  But in the mean time, I am thankful that my foot joints have healed enough to allow me to return to running.  My fingers are crossed that my doctor will clear me to start training for a half marathon when I see her in early April!

18 comments:

Kelly (She Wears a Red Sox Cap) said...

It's actually pretty amazing how far you've come from the boot, to running 3 miles and soon doing a 4 mile race! I think you are smart to avoid reading online, I've found online is always full of extremes and it's best for stress level to avoid it- that being said I'm terrible at that in my own life :)
I hope you continue to make good progress and are able to train for a half marathon!

Becky said...

"All that said, I'm in a better place, health-wise, than I was 6 months ago, and I expect to be in an even better place 6 months from now. "

This alone speaks volumes. It absolutely sucks that you have to live with this but I'm proud of you for knowing it's not good for you to look online, and that you're taking smaller steps back towards running, and that even though there are times when you're upset and frustrated with this you are owning it. Love you.

Gracie said...

You have a good attitude, and a lot of our health and well-being is determined mentally. It sounds absurd, but so many studies agree with me! Feeling that you have made progress and are doing better is only going to help you continue to improve.
PS - what about some cute low wedges?

missris said...

I'm so glad you've been able to return to running! And now I'm adding "why aren't you drinking" to the list of things I will never ever ask someone. (Also on that list is "when are you going to get married" and "when are you having kids")

Raquelita said...

I admire you so much for writing so openly about your experience with your diagnosis here. It would get frustrating to have to constantly explain why you're not drinking, and I understand about heels and confidence.

Carolina John said...

I'm glad you're taking such a positive mental approach now! Dealing with the initial diagnosis brings on a serious shock factor. But then when you settle into the new reality it's easy to stay scared.

Nora said...

Definitely fingers crossed on the half-marathon clearance/training. That would be so huge and exciting for you, I know.

For whatever it's worth, you're always welcome to talk to me about any struggles you're facing. Health stuff is a very real thing and I get it now more than ever. Always cheering for you and rooting for you! You've handled all of this with such grace. You're an inspiration :)

Jeanie said...

It seems like yesterday and forever-ago you got this diagnosis. I'm so impressed by how you have learned to incorporate this into your life and live with it -- not liking it but not fighting it, either. Working with it, I think, is the best way to work through it. And it must be such joy to run again -- even for a bit.

I think your post will greatly help others who may happen across it and are dealing with the same thing -- as well as those confronting other significant chronic diseases and trying to get their brains around how to go about it. I'm so proud of you.

Stephany said...

Stay away from the Internet! I feel like it's just FILLED with bad news and horror stories. (Hence my fear of getting my wisdom teeth removed, ha.) So I'm glad you're stepping away from that and just following what your doctor tells you to do.

It SUCKS that you have this, it really, really does, but I like your adjusted attitude. I think the fact that you're able to run again is (maybe?) helping with this, getting those endorphins flowing and all that! I'm glad things are getting better on the RA side of things, and that you're slowly becoming accustomed to your new normal.

Abby said...

I will never forget the day you were diagnosed either. I felt so helpless to you.

You have handled this so well, better than I would have. There is a lot I scary info out there - however, if you research ANY Disease/condition - you will find the most awful/worst-case-scenarios.

I am so relieved you've found a good Rheum. And I'm especially relieved you are able to run again!

Abby said...

I also am sickened that people make jokes about you not drinking - ask If your pregnant. Some people have no tact.

zara may said...

I love your blog
followed
http://minimaysi.blogspot.co.uk/

Jolene - EverydayFoodie said...

That would be so wonderful if you could start training for a half marathon!! You definitely have come so far, and you have such a positive attitude. I would find it difficult to be on a lot of medications too - I'm always thinking that/wondering if there is something natural (food or herb or something) for each of the drugs we have on the market.

Nilsa @ SoMi Speaks said...

I don't think you're in the "ignorance is bliss" category at all. There are tons of scary things that can happen out there. Walk out your front door or get in your car and think of all the bad things that can happen to you. If we let ourselves dwell on the possibility of bad things happening, we'd lock ourselves inside and rot away. As you said, you know what you need to know. You know it can get worse, but you are also hoping it will actually get better. Funny how life works like that sometimes, eh?

I am still amazed at how quickly life can seemingly change. I know you were dealing with some pain in your fingers and the stress fractures in your feet. But, it wasn't a lifetime of suffering ... 6 months, maybe a little longer? And like that, you're then diagnosed with RA. I know it can (and does) happen to anyone, but it's harder to watch/believe when it's someone you know. I think you've done an amazing job of acknowledging the hard stuff while simultaneously working on accepting it as your new normal. Can't wait to see where you are six months from now!

Redhead Running said...

So happy to read that progress is being made. Sending big hugs!

Amber said...

I'm so glad that things are getting better for you and it's becoming a bit of your "new normal" even though it's certainly not your ideal normal or one you would choose. I'm sure there are people out there who will stumble on your blog and be encouraged to read about your journey with RA so I think you should keep talking about it!

The Many Thoughts of a Reader said...

I'm glad you are doing better!

Kyria @ Travel Spot said...

I agree with Gracie; your good attitude will get you far. I see a lot of people who get depressed over their injuries and it can become a downward spiral. I think you are on the right track and have a great outlook on it. You are going to have some times where it overwhelms you, or is frustrating, and that's okay; that's normal. But you know that you have a ton of people out there rooting for you!

Did you do your race yet? If so, I hope it went well! It's so exciting that you are back to running again!