Happy Memorial Day! Or, Happy Memorial Day weekend! I hope you’re all having a lovely weekend. Mine has been kind of a blur when I stop to think about it. What did I do anyway? Yesterday I went with my parents to visit my grandparents who are buried at Fort Snelling National Cemetery, as well as my aunt at Lakewood Cemetery and my other grandparents at Crystal Lake Cemetery in Minneapolis. I don’t go to cemeteries that often but whenever I do, I’m always glad I went. I love how peaceful they are and how they give you a chance to stop and really remember those you love and the part they played in your life. It’s sad, but comforting as well, I think.

We don’t get out to Fort Snelling that often because it’s kind of out of the way, but I was really glad we went. I still miss all of my grandparents very much; I think I actually miss them more as time passes. I especially miss Nana and Papa, who we visited at Fort Snelling yesterday. My grandma, “Nana,” suffered terribly from rheumatoid arthritis herself until her death. She was such a strong woman though, in so many ways. She always wanted to do things and go places and keep learning in life despite being in so much pain and increasingly disabled from the RA. She also always encouraged me and the rest of her grandchildren to live the same way and to not take life for granted. “Get your education!” she always said. Even though she used to drive me crazy sometimes (she was an opinionated Italian from New Jersey), I admire her immensely. She was her own independent person and most importantly, she was a loving, caring woman who selflessly gave so much to those she loved. All of the work I do to support funding for arthritis research, arthritis advocacy, and arthritis awareness I do not only for myself and the friends I know who also have the disease, but I do it for my grandma. I grew up watching her suffer so much from RA, yet she didn’t let it drag her down. She deserved to have a pain-free life, as do so many others living with the disease today.

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Advocacy Summit 2011

News!   I decided to throw caution to the wind (and the remaining few dollars I have) and register for the 2011 Arthritis Advocacy Summit in Washington, D.C.   The summit is February 28 – March 2nd.  I’m really excited but also a bit nervous. I’ve never been to DC before.  Despite going all alone and not knowing anybody, I’m sure it will be an incredible experience.  I hope.  Now I just have to figure out how to pay for it.  Actually, I don’t want to jinx myself but I applied for a travel stipend which, if I “win” it, I’ll get $1,500 to go toward travel expenses.  I find out tomorrow if I get it.  I really hope I do because money is tight and it would help out so much.  I was on the fence about going this year due to the large pile of debt I’m working hard to pay off, but I really don’t want to wait another year.  Cross your fingers I get the stipend!

In other arthritis news, there isn’t much news.  I’m still off prednisone (I think it’s been at least a month), so that’s great.  I’m still staying off caffeine and I think that’s helping to keep the inflammation at bay.  I’ve been trying to take fish oil capsules at least once a day to also help battle inflammation.

Today is her birthday

I can’t believe another year is gone and it’s already my birthday again. Crazy! It’s also crazy to think that a year ago today I had a synovectomy on my right ankle (what a nice birthday present, eh?). The surgery was not a great success and my ankle (both actually) is still in a lot of pain and I’m very limited in how much and how long I can stand and walk.

After 2.5 years of living with the agony and worry of inflamed and intensely painful ankles, I felt such relief when I found the orthopedic ankle surgeon who performed my surgery. I thought that finally this hell would end and I would be on my way to healing and recovery. However, now a year later, it seems this is not the case.

My ankles (both are painful and inflamed) are a bit better and the right one is a little better, but nowhere close to being normal and pain-free. I recently got the name and number of an orthopedic doctor from my rheumatologist, however I have seen this orthopedic doctor once before and he referred me to my ankle surgeon. My rheumatologist suggested that I see him again, now post-surgery, and see what he says and that maybe something else can be done. I’ve been meaning to call and set up an appointment for two weeks but I either keep forgetting or maybe it’s just subconscious hesitation.

Over the last two years of this mystery-ankle-nightmare, I’ve seen so many different doctors, specialists, orthopedic doctors, podiatrists, physical therapists, etc. How can this “problem” be so difficult to correctly diagnose and treat? My ultimate fear is that it is indeed arthritis-related and the pain and inflammation and disability will be permanent (which means not being able to walk or function like a normal person ever again).

I know I can’t give up yet I can’t even begin to express how exhausted and tired I am with trying with this. Life has turned into a giant schedule of doctor’s appointments with conflicting, confusing answers or no answers at all. Do I want to get back into this “game” of musical doctors again? I’ve been in pain yet limping along fairly well since returning from France in May, trying to occupy my mind and time with other distractions. I know the situation can’t stay like this though. So yes, I will give the doctor a call and set up an appointment, although I fear that once again I will only get no answers or the wrong ones.

On a positive note, I seem to be tolerating the Orencia pretty well. I haven’t had any serious side effects or any side effects at all, it seems. My immune system is quite weak and frankly is pretty shitty lately – hence my weird sinus sickness and now nasty cold. Let’s hope the Orencia kicks in soon and kicks the inflammation right out of my poor little ankles. That’s right, I said “poor little ankles.” They used to be little, anyway.

So yes, today is my birthday. Each year I find birthdays to be more depressing and weird than the previous ones. Maybe that’s normal? I don’t know. Tonight my family will go out for dinner to celebrate not only my birthday but my dad’s as well (his birthday is today too). It will be nice to go out together and it will be a relief to not have the fear of surgery looming ahead. The best birthday gift would be to have normal, healthy ankles again, but I don’t think I’ll get that, unless some miracle happens. However, friendship, love, support and understanding from the people in my life would be a close 2nd, I’d say. Or maybe even better than good ankles.