Thursday, October 22, 2009


My musings have been more internal lately. My thoughts have been more about getting back to where I was before I got sick. I wonder how much of it I will be able to do. In my head, I am still same as I was, so it's a bit difficult to reconcile having the thought that I can do whatever I set out to do with the reality that this will have to be adjusted to what I am capabale of doing without pain.

I am not one of those people who relies on some sort of "power of positive thinking", that actually makes me crazy. I need to be in the reality of the now anddeal with things that way! None of this is good or bad, really, it just is.

Thursday, September 17, 2009

More things I learn from animals

I know I have mentioned my animals before, and I will probably do so from time to time, as I find that I can learn much from them.

So, first, a little more about the critters. Dinah is our new cat we adopted last December when she was about 3 months old, which makes her now about 1 year old. She is very sweet and has bonded with everyone in the family, including Sheila our border collie mix. She is very cute and very active, enjoying pouncing on things, catching mice and lizards. She even likes to follow Sheila and me when we go for our evening walks. She hides under cars and in bushes and then jumps out when we're near and pounces on Sheila's tail!

Sheila is an 11-year old Border Collie mix that was a rescue too. She has a very mellow disposition, gentle and very well mannered. She only gets very excited when kids play in the pool, especially when they jump into the pool... She then runs around barking and nipping at them, as though she's trying to keep them from getting in. Perhaps she thinks they will drown? I wish she could tell me. She is a very smart, herding dog, and has her own mind.

Dinah, being a young cat, occasionally will take her pouncing on Sheila a bit too far, I mean a dog can only be sooo patient! The interesting part is that Sheila will snap at Dinah when she's had enough, but not in a hostile or mean way, just a quick little snap which lets Dinah know "hey, enough!" and neither of them takes it "personally".

They have a way of working their relationship without being mean or hostile. They apparently are able to communicate this to each other, even though they are different species! They set boundaries, communicate play time, or just "enjoy" each other as a companion in a quiet coexistance.

So, if two animals, from different species can do this, why can't we? Why is it so hard for us, humans, to express our boundaries with each other without one's feelings being hurt? Or not setting them for fear of rejection? It should be as simple for us as it is for Sheila and Dinah, and yet it isn't. So who's more advanced?

Saturday, September 12, 2009

My neck helper

my RA neck help - sock filled w/rice on Twitpic
Ok, so this photo taken with my cell phone camera may not be the greatest, but this is something a wise massage therapist recommended to me long time ago for neck pain, and it's really coming in handy now. It's a tube sock, preferrably brand new (I stole it from my son's pack :-), filled with just plain white rice and tied on the end with a shoe string (you can use any other tie, just make sure it's microwave safe - non-metallic). I stick it into the microwave on high for about 4 minutes to heat up. Mmmm.... feels so good around my neck, helps ease the tightness and pain of both upper neck and shoulders.

I had to use it pretty regularly this past week, as my neck and right shoulder have really acted up!

Monday, September 7, 2009

What makes me smile

My dog Sheila and my new, just 1 year old cat Dinah are a constant source of pure enjoyment and their interractions often make me laugh out loud! They get me out of my head, and remind me to find pure enjoyment in the little things, like a good roll in the grass, is sometimes all you need to make your day! Or just to kick back and lay down next to each other in a quiet companionship... Right before Dinah pounces on Sheila's tail :-)

Friday, September 4, 2009

RA, Healthcare and Marxism/Socialism

As a newly diagnosed Rheumatoid Arthritis patient, I am even more keenly interested in making sure that people like me, who have so many uncertainties in their lives due to their illness, don't have to worry about whether they will have health care they need whenever they need it.

It really infuriates me when I see and hear people compare the current health care initiative to Socialism and or Marxism. I wonder if the people who make these statements really know what Marxism and Socialism are and if they ever even been to any countries that are governed by Marxist or Socialist ideologies. I was actually born and raised in Communist Poland, so I do have first hand experience of living under a regime that subscribed to the Marxist ideology. Let me tell you about the general conditions of living there as I remember them. I recall that stores had very little quality clothes, so my mom actually made most of my nicer things to wear, and she, my dad, and grandmother would have their work suits and nice winter coats made by a tailor. I remember that for some reason there were always toilet paper shortages, and my mom and I would have to wait in long lines (as in around the entire block) for toilet paper. Other "luxuries" were things like oranges, and other more exotic fruits and vegetables, good alcohol like brandy (vodka was pretty abundant!!), ham and "good" pieces of meat and were nearly impossible to get. My mom had "connections" because being a pediatrician, parents of kids she helped who worked in specialty stores would save some of these "luxury" items for her. I think you get the picture.

But the really scary thing I remember is being warned by my parents and my grandmother not say anything negative about anything regarding the government or how we "got things" or who came over to our house. I remember one time one of my parents' friends suddenly "disappeared" and no one said anything of fear that you may be next.

I also remember the one party elections. People were forced to vote (again, you didn't want to "disappear"), but it was all a joke, as it was a single party system, and there was no opposition! And I also remember these 5-year plans that the government and the propaganda machine would promote to uphold the workers, to keep producing for the betterment of all!!
When I first got to the US, I was amazed by the grocery stores! I have never before seen that much food and that many choices of things (and this 1972)!! And then by department stores and all the clothes!!

So, now, many years after the fall of Communism, when I go back to Poland, things are pretty much same as here with one exception! They kept the socialized health care system! Poland is now a thriving democracy, multi-party system, but they kept the same post service and health care system... And they really know the difference between Marxism/Communism/Socialism and Democracy and Capitalism!So all you who try to scare people by shouting that health care reform with public option is Marxism or Socialism, again, you have NO IDEA WHAT YOU'RE TALKING ABOUT!!! STOP IT!!

Thursday, September 3, 2009

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...

Wednesday, September 2, 2009

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.

Saturday, August 29, 2009

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.

Sunday, August 23, 2009

Gotta keep moving

Although the day started a bit rough with achy ankles and, oh joy, raging perimenopausal hormons kicking in, it is ending on an up-note.

It did take me quite a while to finally get off the couch and get moving. I finally went grocery shopping by almost noon, which is very late for me! But that was the best I could do, so that was that.

And then I went to The Plunge, which is an indoor pool is located in Mission Beach. It's has been restored (it was originally built in the early 1900's) and is part of a sports club now. The water is warm, and the south wall has a mural painted by Wyland, famous marine life artist, depicting Orcas playing in the ocean. It's beautiful! I swam laps for about 25 minutes and it helped stretch out the old joints and improve my attitude, which was in need of improvement. The dry suana after the swim was an added bonus.

So with renewed energy and spirit, I even made some spaghetti for dinner, and hubby added his special touches to the sauce to make it delicious, as I can't seem to get the taste just right! And now for some blueberries and frozen yogurt for desert. Like I said, day is ending much better than it started!

Friday, August 21, 2009

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 - . 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!

Monday, August 17, 2009

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!

Sunday, August 16, 2009

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!

Saturday, August 15, 2009

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:
- looks very promissing! I won't try to summarize here, you should read all this information to fully understand what is being done.

Friday, August 14, 2009

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.

Thursday, August 13, 2009

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!

Tuesday, August 11, 2009

The beginning

Like so many others, I want to document pretty much from the beginning my Rheumatoid Arthritis story. I know there are millions of us, but until I was told I may have it, I really didn't know anything about it, I didn't really know anyone who had it, so I thought I would add to the already many personal stories, mainly to get the word out and raise the awareness.

In retrospect, the beginning was at the start of this year, I think it was in February when I woke up in the middle of the night with such extreme pain in my left shoulder and right wrist that I had tears in my eyes, and I have a pretty high pain threshold, so my husband was so shocked that he took me to the emergency room. I had been training for months for a triathlon, so I thought it was caused by having gone swimming and then pulling something pushing myself onto the the deck of the pool when getting out. The ER doctor gave me some pain killers, that really didn't do much, took X-rays that didn't show anything, and concluded that I had carpal tunnel in m wrist!!

Later that morning I went to see my family doctor who has been taking care of us for years, and he gave me a cortisone shot into the shoulder and concluded that the ER doctor was totally wrong about the carpal tunnel diagnosis. We agreed this was most likely a training injury, so he recommended the usual, ice and ibuprofen and rest for few days. Needless to say, the cortisone really helped me overall, and in a few days I resumed my training. My triathlon was in March, so I didn't want to waste any time with my training. I was doing really well, running up to 4 - 5 miles 3-4 times a week, biking, swimming. Long work outs on weekends that involved 9 mile bike rides together with either 2 mile runs or 1,000 meter swims. As the 15th of March approached (day of the Pasadena Triathlon), I was starting to have a bit of pain in my right shoulder, but took some more ibuprofen and figured once I completed the Tri, I would then relax and slow down and let things heal.

I completed the Triathlon, which was my first ever, and a goal I set for myself for my 50th birthday which was in June. It was a 5K run, 15K bike, and 150 M swim. I made it in 1 hour 31 minutes!

Shortly after, I started having pains in my fingers and wrists and in my right foot/toe joint. I went to my favorite Orthopedist and we agreed that this was probably caused by all the training, and the hands hurt from gripping the bike handle bars and changing gears during the bike part of the triathlon, as I really pushed myself very hard! She sent me to Physical Therapy and suggested more ibuprofen. She also took x-rays and MRI of my foot, but all it showed was some inflammation. So I went. Allie, my physical therapist had me use the paraffin wax treatment and worked on my hands and foot. But I was not getting better, and actually I started to have pain in my knees, and then my right shoulder got much worse, and then my left ankle... and so I returned to my Orthopedist and she got concerned and decided to have me get blood tests. Of course when I heard that I freaked a bit. She (yes, my orthopedist is this amazing Egyptian woman!) mentioned "Rheumatoid Arthritis" as one of the possibilities. I immediately went online to better understand what this was, and freaked even more! I mean, I was planning to train for the next Triathlon! I needed to get a new job (I was laid off in February 09)! I don't get sick! My husband and I have been taking Tango lessons that I want to keep up with! I don't sit still! I was going to be this 50-year old cougar in perfect shape, defying the age number, and challenging all these age conventions together with my 50-year old sister-in-law (who by the way ran her first marathon on her 50th birthday in May)! I eat healthy, I take care of myself, I work hard! I am not supposed to get something like this! And I came to a complete stop! I could not even walk my dog!

Well, when I went in to get the blood test results, the bad news was right there on the report. The orthopedist got on the phone and called her rheumatologist friend to see me that week. She hugged me and we both had tears in our eyes! She knew I was dismayed by this. I went to the rheumatologist that Friday, and we discussed all the options, but first she ordered more blood work and X-rays in order to narrow down her diagnosis, since she thought another possibility may be lupus (even worse!).

So, in the meantime, she gave me steroids to bring down the inflamation, which has been great! I finally have relief from the pain in my hands and and knees. I am continuing with physical therapy for now, as my shoulder and ankle are still hurting.

Thursday of this week (8/13) is the day I go back for my complete diagnosis an review of the lab work and x-rays from the rheumatologist and a plan for what's next.

So this brings me up to date, and I will continue from here on where this journey takes me...