Invisible Awareness Week reminder

Since I am still learning about the way RA affects me in my daily life, I can only share very few experiences so far. One thing I do know already, is the effort I need to make to communicate. For example, I told my husband yesterday about the increase in my joint pain. This morning his first question was whether I was in pain today too. The hard part for me was to say yes to his question today. I hate admitting to having pain! I hate to think that I cause him concern, and my first instinct is to say "Oh, I'm ok..." This is one of the issues of this being invisible, that I have to overcome this reluctance to communicate to let your loved ones know how you are, because you don't want to cause them emotional pain...

Need to remember that grace thing today

On Monday I lowered my Prednisone dose again to 1 pil, and I was ok until today. This morning took me by surprise with the pain in in my neck, wrists, stiff fingers, and achy knees.

This is not a complaint, it's a reminder not to take things for granted. It's a reminder that it's days like these need me to stay in the moment, not rush, and have the grace to accept limitations of that moment. And stopping to think about it and write it down are good ways to do just that.

Hearing what I need to hear

Sometimes we hear or see things we need to just at the right time.

I just heard Ted Kennedy Jr. eulogize his father, Senator Kennedy and the story of when after loosing his leg to bone cancer at 12 years old, his dad took him sledding. Young Teddy started crying when he felt he could not climb the hill with his new prosthetic leg, and how Ted Sr. picked him and told him that they will climb that hill even if takes them the entire day trying!

Somehow a thought of a little kid struggling after a loss of his leg to walk up that slippery, icy hill will now be my reminder to accept any limitations that might come my way with as much grace as I can muster and to also persevere within those limitations.

I said with grace. Grace... there are many definitions and I choose "moral strength" and I always hoped and aspired to go trough my life with grace. This was just another reminder for me to not to loose that as my guiding principle.

Week in review

I have not posted since Monday, after my initial Methotrexate dose, well, mainly because there was little to report. This is very good news that I am tolerating this medicine without the worst side effects.

I went to a little Summer gathering yesterday and actually was able to stay for about 2 hours. Of course only non-alcohol beverages for this RA newby, and I do like a glass of red wine on occasion! When my ankle started to ached, I left. But it was nice to be out and even ran into an old friend!

I am still filled with uncertainty every morning, and from time to time sudden pains reinforce that uncertainty.

By the way, Rheumatoid Arthritis Warrior posted about the really poorly researched article on RA published in Women's Day - you should read the article and then see many of our comments - http://www.womansday.com/content/view/full/29515 . Thank Warrior for brining it to all our attention, and so I added my comment titled "This is irresponsible reporting!!" and here is the text of my comment (I think it's good to reiterate it):

You have totally trivialized Rheumatoid Arthritis in this article! It is very disappointing that you may be contributing to potentially there being less real awareness and thus less emphasis on finding real cure for this debilitating disease! Imagine for example, sitting at a dinner table for more than 15 mintues, and then practically not being able to get up because your knees are in so much pain and have so much stiffnes that you have to take a few minutes to straighten them out and then it's like having someone stick needles into your knees when you try to walk and all you can do is shuffle across the floor! And imagine that just few months ago you were running 5 miles a day! Imagine the emotional pain associated with that!

No, this is not just inaccuarte, this is irresponsible! You are undermining the efforts of so many RA sufferers who work very hard to increas the awareness and hope for a real cure in their life-time! You should really consider doing an in-depth article that includes real RA patient stories!!! You should also report on the treatment, how potent the medication is, and the various very serious side effects. You should report on how the quality of life is reduced for the RA patients and their families! How the husbands/wives, parents and children are affected! The increased percentage of RA patients that also suffer from depression due to their RA. Comon!!! Do the right thing!

Whew... Relieved!!

I was apprehensive about what I may experience when I took my first dose of the Methotrexate this morning, but as it turns out, I was OK! No nausea, no feeling tired, no headache... Whew! What a relief!!!

As many others have written, however, I am feeling very fearful much of the time. When I was up last night because my knee was hurting quite a lot, I was feeling much of this fear. It's the unknown of what the next day, or even hour will bring. It's the apprehension when you first get up in the morning wondering if when you step off the bed your ankles and knees will hold you up.

My husband has been really good at not over-reacting and keeping things "real". His sense of humor and remaining matter-of-fact helps me overcome the fear.

But my feelings of fear and apprehension are also somewhat eased by being surrounded by health care providers that have delivered care, good judgement, and nurture. My primary care doctor, who has been our family doctor for many years has helped with his usual support and just being there when, for example, I changed insurances and needed immediate referral. The physical therapist has been supportive, working hard to keep me mobile and flexible, and also sometimes just talking about her cousin who also has RA, and how she's coping. My rheumatologist has so far shown herself to be well informed, answering all my questions and being clear with the diagnosis and treatment. And then this afternoon, I got a call from my orthopedist who originally started to suspect that I may have RA, just to see how I was doing, if I liked my rheumatologist, what the treatment was, and to call her any time and keep her updated on how I am doing! I was truly touched!

Ok, and I know that in my last post I mentioned my mom. Well, I finally talked to her last night and gave her the news. She did get a bit emotional at first, but I managed to steer her to a more clinical aspects of the discussion, which worked well. When I was able to get her to put the doctor hat on and talk about the medicines and x-ray results it went better. So, last milestone completed!

Last day before the first Methotrexate dose

I live in one of the most fabulous places in the world! Southern California, sun, beach, surf! Doesn't get much better than that.

After the family brunch and grocery shopping, put on my bathing beach, threw my bike in the back of the wagon, drove to one of our beach cities, and then rode the bike to the beach and on the boardwalk. Also sat on the beach for a bit and walked into the ocean. The water was warm, for Pacific Ocean, anyway. And then rode the bike back to the car, and went home. It's actually easier for me to ride the bike than walk, because walking hurts my ankle a bit.

I figured since tomorrow I have to take my first Methotrexate dose, I would spend today really doing the things I really enjoy and get some excercise in case the next few days are tough.

I have been reading from various people that the initial side effects may include being nauseated, tired, and even migranes.

One more thing I need to do today, and that is to finally tell my mom about this. I have not yet told her, because, well, because I was not ready for her reaction. Our relationship is a bit complicated. She tends to over dramatize. Even though she spent her life in the medical industry, when it comes to her immediate family, she looses her objectivity. When my son was about 2 years old and we were at her house, he fell and split his lip, and we needed to get him stitched up, and she totally lost it! So now you may understand why I've been dreading it.

Anyway, stay tuned!

Sangrias and stem cells!!!

Yesterday started a bit slow after lowering the steroid dose day before, but my friend M and I had a major attitude adjustment at lunch over Tapas and Sangrias!! So although my ankle, wrists and fingers are a bit more stiff, it didn't affect having really good time and enjoying a bit of a naughty afternoon. Thanks M.!!

This positive attitude adjustment was just what I needed! And it kept on when we went to T's High School reunion later that evening. Took some Ibuprofin before leaving, and even wore my high heel wedges! Met a woman at the reunion who is working at one of the local research hospitals and is actually working in the stem cell area. It was difficult to have a meaningful conversation over Margaritas and loud music, but she did mention that there is work being done with stem cell and autoimmune diseases. So this morning I started looking into it, and found the NIH (National Institute for Health) Stem Cell Information site specifically addressing Stem Cells and Autoimmune diseases and the progress being made in this area: http://stemcells.nih.gov/info/scireport/chapter6.asp
- looks very promissing! I won't try to summarize here, you should read all this information to fully understand what is being done.

Things I'm learning about my meds

Yesterday I was told to lower the Prednisone dose to 2 pills (10 mg) from 3, and this morning I noticed a bit of difference already, so I did some more in depth reading on the various side effects. Turns out that even after taking it for a short time, as in seven days, you start building dependency on the drug, so you can't just stop taking it all together and need to reduce gradually. Given that Prednisone gives you a bit of euphoria, the other potential effect of reducing the dose, is depression. So it explains why I woke up a bit more sluggish this morning.

I suspect that once I have breakfast and take my 10 mg. dose I will perk up again! But I better not get too used to this, as I will eventually have to go off prednisone completely.

Monday I will start my weekly Methotrexate and we'll see how that goes.

Final diagnosis

So today, August 13, 1009 at 9:20 am, was the day and time I got the final diagnosis based on the more detailed lab work and X-rays. Dr. K confirmed that it is Rheumatoid Arthritis, and not Lupus, which was the other possible diagnosis. One piece of good news is that the X-rays showed no joint damage!

I am going to continue with Prednisone for the next few weeks while I will now also start the initial dose of methotrexate with the goal of allowing methotrexate to take effect and then reducing and finally eliminating Prednisone. This is the clinical part.

And so the journey is on. I was dreading the finality of this moment, as in a way there is no turning back now, no denial, and I need to take this head on!