Cautiously optimistic

I gave myself my second Enbrel injection on Tuesday and I am cautiously optimistic that it seems to be working.  On the other hand, I don’t want to get my hopes up too high, too soon.

My pain levels for the past month to six weeks have been averaging an 8.5/9 and I am sitting at about a 6.5/7 right now, which is a huge improvement for me.  But I’m not sure if Enbrel is the reason I’m feeling so much better.  When I saw my rheumy two weeks ago, she gave me a steroid injection plus I did a week-long prednisone dose pack, the combination of which finally brought down a lot of my joint inflammation – so much so that I lost 10 pounds in less than a week.  I can actually see my kneecaps now!  So, it’s really hard for me to tell if the pain reduction is from Enbrel or from the steroids or a combination of both.

I guess I just need to wait and see, the effect of the steroids will most likely be wearing off within the next week, so if my pain levels start going back up after that I’ll have my answer.  I really, really want the Enbrel to work. 

On another front, I had my diagnostic mammogram last week and the radiologist said he’s pretty sure it’s just a cyst and he’ll do the mammogram and ultra sound again in 6 months to double-check.  But, he and my gyn doc both said it is nothing to be worried about.  One side note – in my original post, I said that it was 2mm, turns out the lady that called me from the imaging center was mistaken, it’s actually 62mm in size, so quite a bit larger than I originally thought.  It’s very deep inside the breast though and not something that I can feel when doing a self exam.  They won’t do anything about the cyst unless it becomes painful or disfiguring.

And the last thing I’m optimistic about this week, I have an appointment with a pain management doctor tomorrow.  I’ve been living with, suffering through extreme amounts of pain for way too long without adequate measures to deal with it.  My primary care doc is not comfortable with prescribing me very much in the way of pain medication and my rheumy doesn’t write prescriptions for pain meds.  So, I definitely need to do something.  Right now, I have a prescription to take one vicodin every 12 hours, which is a joke with the level of pain that I’m dealing with.  I also have lidoderm patches and voltaren gel that I can use topically, but neither of those helps very much.  I am really hoping that the pain management doc will be able to help come up with a plan to control my pain.  I’m pretty sure it’s not normal to spend over a month with your pain level at 8.5/9…..

I’ll keep you posted on how Enbrel is working and what happens with the pain management doc….. Have a great day….

The myth of morning stiffness…

May is national arthritis awareness month. To do my part to raise awareness, I’d like to put a couple of common misconceptions about Rheumatoid Arthritis to rest. Unfortunately, many of these misconceptions are deeply rooted within the medical community itself, so we are fighting an uphill battle. But when you live with an auto-immune disease like Rheumatoid Arthritis, you learn to become your own health advocate. If you don’t educate yourself and fight to ensure you get the best care possible, who will?

Misconception #1 – Everyone with RA has morning stiffness that last for at least one hour, but generally lasts for around 2 hours. While joint stiffness is a hallmark symptom of rheumatoid arthritis, every patient is different. Some people report experiencing stiffness all day, while others report that their stiffness is worse in the evening after they’ve been active and moving around all day. Still other patients report that their stiffness varies from day to day. I fall into the category of all day/all night stiffness most days. Stretching helps a little bit, but within 30 minutes of finishing my stretches, I’m right back to being extremely stiff again and let’s face it, it’s not feasible for anyone to spend their entire day stretching.

Misconecption #2 – RA always presents with hand symptoms. I’m sure everyone has seen the heart breaking pictures of the hands of an RA patient who is in the advanced stages. With the twisted, bent fingers and swollen knuckles. Many rheumatologists will first look at a patients hands to diagnose RA. By no means is RA just a disease of the hands and if a rheumatologist is looking just to the hands to diagnose, he/she is doing you a great disservice; however, this misconeption persists for a reason. At some point in time, RA will progress to the hands in every patient. You may be fortunate enought to have some of your other joints spared, but eventually your hands will be engaged by the disease.

Misconception #3 – The rheumatoid factor (Rh) blood test is the best way to diagnose rheumatoid arthritis. Anywhere from 10% – 35% (depending on the study)of people with rheumatoid arthritis test negative for the rheumatoid factor. There are actually several blood tests that can be used to diagnose RA – the anti-cyclic citrullinated peptide (anti-CCP) is a test that can pinpoint early markers of RA in 90 – 95% of cases, Erythrocyte Sedimentation or sed rate checks for inflamation, and C-Reactive Protien (CRP) is also used to check inflamation levels. Of course, a physical examination of your joints, a medical history, along with x-rays and MRIs are also instrumental in providing a proper diagnosis of rheumatoid arthritis.

I happen to be one of the 10 – 35% of the population that is sero-negative, I test negative on the Rh factor blood test; however, I have severe, highly active RA. Lucikly, I have a rheumatologist who did not rely strictly on lab work to diagnose me.

I hope you’ll stick with me this month as I explore more about rheumatoid arthritis. Let’s educate ourselves together.

If you’d like more information on national arthritis awareness month, check out this great post over at Rheutired – World Autoimmune Arthritis Day

How do you explain what RA feels like to your friends and loved ones???

I’ve been dealing with an incredibly painful, intense RA flare for about 3 1/2 weeks now.  And in the past couple of days, I’ve had the added joy of a fibro flare too.  On that lovely pain scale that doctors like to use, I would have to say for the past week to 10 days, my pain has consistently been hovering in 8.5 – 9 out of 10 range.  And that’s when I’m taking prescription pain medication. 

So, when I’m in this much pain, I often struggle with how to effectively communicate to my friends and loved ones exactly how much pain I’m really in.  Because I’ve been dealing with this type of pain for so long, I just push through the pain and do what needs to be done.  And I think because I do this, at times, the amount of pain I am in or level of disability I am experiencing is underestimated by some of those around me.

This was clearly illustrated to me this weekend when my significant other sprained his ankle on Saturday evening.  On Sunday, he thought I should take care of him – bring him something to eat, something to drink, bring him his laptop, oh I need my charger, can you make me a sandwich, I’m hungry…. And I was in so much pain, all I wanted to do was lay on the couch and do nothing.  It was very difficult for me to deal with.  I am a very giving person, so I had a difficult time telling him no.  But I did finally get to a point  where I had to explain to him that I was in pain and I could not keep getting up and down, and waiting on him.  Everytime I stand up, my knees scream at me….really not something I want to experience over and over again.

I’ve sprained my ankle several times.  I don’t know how to break it to you sweetie, but I would gladly trade that pain for what I’m dealing with.  For some reason, he didn’t like that…..he felt like I was trying to compare my pain to his, that I was trying to out-do him….

I guess I’m still looking for the right way to explain what the pain of an RA flare feels like to friends and love ones……

If you have any suggestions, or if you have something that has worked for you, please share in comments…..

What to say, what not to say…..

As someone who has lived with with a chronic, invisible illness for a quarter of my life, I think I’ve become a bit of an expert at dodging backhanded compliments and those insensitive comments that people seem to say without even thinking about it. Some days it just amazes me how insensitive friends and loved ones can be. The ones who are supposed to be lifting us up, supporting us, understanding…..

I read a couple of great blog posts this week that deal with this issue. Tracy Rydzy at Living with Chronic Pain has a great post What NOT to say to someone in chronic pain. And for a view from the other side of the fence, Toni Bernhard at Psychology today has a post on What those with chronic pain or illness Do want to hear.

Both of these posts offer some great input on things to say or not say to someone dealing with a chronic illness. It can probably be summed up in a few words: be tactful, be considerate, walk a mile in our shoes, think before you speak….

Draining day…..

Today was quite the day…..it started with a call from the imaging center where I had my mammogram done last week. They asked me to come back in for a diagnostic mammogram of my left breast next week. I have an undefined 2mm mass at 12 o’clock on my left breast. Something that wasn’t there last year. Let me be completely honest here, I freaked out when I got this call. Then I made myself take a few deep breaths and think logically. 2 mm is very very tiny. And I have rather large breasts. This is probably nothing at all. Most likely due to the size of my breasts, they weren’t able to get a clear mammogram and after the diagnostic mammogram and ultra sound next week I will get a clean bill of health, but I’m still a bit freaked out. I shed a few tears….and am still a little bit scared. It’s only natural, right?

But, hey, the fun didn’t stop there. I had an appointment with my rheumatologist this afternoon. And it was full of excitement and surprises. Fun fact #1 – my rheumy told me that I had the worst symptoms she has seen all week! Not a distinction I really wanted to have. Fun fact #2 – my RA diagnosis has been upgraded from moderate to severe, highly active/progressive. That is basically the worst RA diagnosis you can have as far as I know. I was diagnoses a less than two years ago and I’ve gone from having palindromic rheumatism to inflammatory arthritis to mild/moderate RA to moderate RA and now it’s severe RA that is highly active/progressive. I don’t like the way this is trending. Fun fact #3 – at 41 years old, I filled out the paperwork to get a handicap tag for my car. I find this highly depressing, but necessary. My knees are so bad that I really can’t walk very far anymore. Fun fact #4 – I finally got a referral to a pain management doctor!! YAY!! and I already have an appointment for May 10th. Fun fact #5 – I will be starting Enbrel within the week. Fun fact #6 – my rheumy is having a baby in 2 months and isn’t coming back after she has her baby. This is something she has failed to mention before today. So I have to find a new rheumy very quickly. Boo!!!

So a little bit of good and a lot of not so good today. Overall, I really just wanted to tell the universe that my plate is full, I can’t take anymore. I am putting out the no vacancy sign. Closed for business. No mas! I feel like going to bed, pulling the covers over my head and staying there for a week or so. I’ll see you when I come out…..

First blog…..a little about me

Hi! I have been living with Rheumatoid Arthritis for the past 2 1/2 years and Fibromyalgia for about 11 years now. Since my RA diagnosis, I have found a ton of support from blogs and online support groups. And one of the underlying themes I’ve seen is that writing about your struggles and disease is a great way to deal with it and to come to terms with things.

I’ve always been a writer, but have gotten away from it some in the past several years. And now with the progression of my RA, I find it difficult to spend much time actually writing, with a pen and paper. I have so much pain and swelling in my hands and wrists that holding a pen for very long and writing is very painful for me. I had originally planned to just journal my feelings, but for that reason, I decided to do a blog.

I hope to share my struggles, triumphs, feelings, musings, my ups & downs…. I don’t want this to be just a place to complain about how bad my RA is, but I’m not going to sugar coat things either. This will be the real deal – no holds barred. I hope you’ll take the journey with me.