Night and Day

I'm realizing this morning, as I type slowly with my stupid wrist, that I have different types of flares dependant on the time of day.  In the beginning of all of this, there were some flares that just lasted and lasted, for days, weeks, months on end.  However, as I got my disease under control I notice that they come differently.  For example, I had a night flare last night.  I went to bed fine (some achy muscles due to a long bike ride and gardening, nothing extreme) and proceeded to wake up an unbelievable amount of time in ridiculous pain, and unable to get comfortable.  However, I know that as this day wears on, and my meds kick in, I will start to feel fine.  Tired, but in much less pain.

Then there are the day flares.  I wake up fine, then an ache starts to set in, or worse yet, it comes on sudden.  A screeching immediate pain in one joint, that then may spread throughout my body.  I get immobilized, overwhelmed and tired.  This flare may last for days, but if I can find a fairly comfy position (usually on my back, arms straight at my sides), I can sleep okay.

I've yet to find many triggers for my RA, other than stress or lack of sleep.  I can't find a food that can start a flare, or many environmental factors.  I do know for my health in general, I need to eat balanced, with lots of fruit and veggies, and get some gentle exercise.

I wonder what brings on a day flare, and what brings on a night flare?

Whoa

I just realized that I have had RA for about 9 1/2 years.  That's almost a third of my life.  I know there are folks that have had it for much, much longer.  But, cripes, that's a long time to be in pain.  It's long enough for me to not remember very well how it feels to have a body that isn't RA-ridden.  I'm not feeling down in the dumps about it, or anything.  It was just a shock to realize just how much of my life I've had it.  Maybe that's a good thing?  The not remembering?  I mean, this is really and truly my life now.  I can't imagine waking up without some form of pain, or things being easy.  Even if they were to find a cure tomorrow, I would still have lasting pain and struggles because I have too much damage in too many joints (and too many future surgeries to even think about).  I guess it makes me feel kind of positive to recognize the RA, know that it will sometimes kick my butt, but to also know that I can deal with it.  Whatever it brings.

Mission Accomplished

Okay, so I was feeling pretty cruddy yesterday and today, and I even started writing a post about how "blah" I was feeling.  Then I went for a walk this afternoon, which was my second walk since friday.  Wait just a darn gosh minute there!  Why am I feeling so down when I have started walking again?!?!?  This has been one of my goals for quite a while now.  There had been days when I can barely get around my house, or from my house to my car.  But, my meds have kicked in and a while back I walked home from work (which is indeed close, but an accomplishment none-the-less).

And then on friday the weather was amazing, I had energy and little pain in my ankle.  So, I decided to take the mutt for a walk.  And I did, and it was glorious.  Let me tell you folks, I even cried on this walk.  Then, I did it again today.  I feel awesome, not perfect, but pretty darn awesome.

Walking is my calm.  It gets me where I need to go.  It gets me outdoors, in the wilderness, close to the earth.  Sometimes it stresses me out, when I see a big lynx up ahead, or in situations where my dog feels the need to run after a moose, or get herself caught in an animal trap (this has happened twice.  A serious downer on walks in the woods.  And, I don't mean a park, I mean the forest).  Don't worry, Fran is a real trooper and loves a good bunny to run after. 

I need it, I need to be able to walk, it keeps me balanced.  I don't feel cruddy, I feel good.  I'm walkin' again!

Surgery story, mucus and all

I've been reading all about surgery over here : http://project-jennifer.blogspot.com/, she is another young woman who has had jra and recently received two new hips! She seems to be doing really well (you know, aside from recovering from major surgery. That takes the best out of any of us). Her writing has been bringing up memories of my own replacement surgery. As happy as I am now with my bionic elbow, I'm recalling just how crappy a time that actually was in my life.


I'd had ra for about 4/5 years when I was at a long overdue appointment with my rheumatologist and he told me that I would need a total elbow replacement. I had been back living in Labrador for over a year, working and living my life.


It was such a shock! And, I am not entirely sure why. I had spent years suffering in pain, long periods of time struggling to even touch my face, wash my hair, dress myself, sleep like a normal person. It's not that I had never considered surgery a part of my future, I just hadn't considered it so soon! I was only 25. So, a surgery was scheduled (really quickly, I might add. I guess they considered me some kind of emergency case? Most people wait up to two years or more, I waited about 5 months from referral to a surgeon to the consultation appointment to the actual surgery). I would have to go to another province, and my mom was coming with me to help me perform basic daily tasks.


The night before surgery, I started freaking out just a little, oddly enough not about the actual surgery, but of general anaesthesia! I had heard so many terrible stories of hallucinations, it wasn't the thought of pain that scared me, it was the thought of not having control over my mind. An amazing nurse let me cry, told me her survival story and calmed me down immensely. I wish I could remember her name (I'll have to ask my mom), but I am thankful for her. And the nurse that made me laugh about my toes. Laughter really is the best medicine.


So, the surgery went well, and the anaesthesia was actually like having the best sleep of my life. My recovery was pretty good (other than screwing up my meds and experiencing an unbelievably painful afternoon until the dosage was corrected). However, when I went in to have my bandage removed and my incision looked at, blood came flowing out. This is the point where I had to keep it together as my mother was the one about to panic. I'm telling her that it's fine, there's no pain or anything. Meanwhile, I'm thinking, "what the hell?!?!?" So the nurse promptly bandaged me up, good and tight. Now this is where I believe everything went downhill.


My mom and I return to Labrador. En route I set off the alarm at an airport due to the replacement. This, I think, is both cool and disturbing. I have appointments for physio, getting my staples removed, and continued bandage changes. Life seems to be going good. Until I notice some weird stuff leaking out of my arm. A nurse has a look at it, tells me it looks, "a little green" and promptly sends me to emerg. Things progressively get worse from there. I am started on oral and IV antibiotics immediately due to an infected hematoma (remember where I was bleeding and they bandaged me up?), experience vein collapse, and have the most disgusting anything come out of a human body come out of my arm. Now, the number one concern with joint replacements is infection. If the infection gets into the new joint, they have to remove it and put in another one, which is much more difficult than a first replacement. You can see where I start to get worried, right?


But, I perservered. And, the infection didn't go into my joint, it continued draining out in ways that would remind anyone of a horror movie (lets just say the word "mucus" doesn't quite cut it). My infection cleared up and I resumed my physio. I had made it through this nearly month long ordeal. And, I had a shiny new elbow to show for it. No more pain or swelling in this joint, baby!


I can't believe that was nearly 6 years ago. I often don't think about it, but today, all of those fears, and triumphs, are right there. Remembering when I first got my appetite back (with a meal of salmon, naturally), the lovely couple who kept my mom company in the hostel, nurses whose names I cannot remember but who I won't ever forget, and my mom who took care of me. Thanks, mom :)


Hmmm, maybe another day I'll tell the story of my second surgery, in which I was awake, and the surgeon realized that he needed to saw off more bone. With an electric saw. While I was awake. Party time, people!

Greedy

Two posts in one day! I'm getting way ahead of myself....

Anyway, I already have one of these:

Now I would like one of these:

And, one of these:

That's not too much to ask, is it?

I'm having those fears again. Those fears that totally freak me out in the middle of the night when I am all alone. The fear of not being able to take care of a helpless baby due to my stupid RA.

I had a bit of a flare a few days ago, mostly in my hands. Hands that would need to carry and care for a baby. And I can't help but wonder what I will do on the days like that when we do have a baby? There is going to be times when I am all alone with her, and she will need me to pick her up, dress her, feed her.

Sometimes this is really overwhelming. Exciting and eager and happy, but overwhelming. I know that those days are fewer than the good ones, but what do I do on those bad days?

Where I do one of those "meme" things for the first time ever

I found this on http://chronicbabeclub.ning.com/. It was pretty insightful reading about others' experiences, many similar to my own, some different. Those who live with chronic/invisible illnesses certainly know the misunderstanding, and sometimes condescension, that comes with it. I feel things like this can really open up dialogue and create awareness. Here I go.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: late 2001
3. But I had symptoms since: early 2001 (lucky early diagnosis).
4. The biggest adjustment I’ve had to make is: learning my limitations.
5. Most people assume: that I have osteoarthritis, that it's the same as the pain in their knee.
6. The hardest part about mornings are: getting out of bed and standing up.
7. My favorite medical TV show is: House!
8. A gadget I couldn’t live without is: hmm, does a laptop count as a gadget? If not, the electric can opener.
9. The hardest part about nights are: finding a comfy position and not getting stuck in it.
10. Each day I take 3 pills & vitamins (except on tuesday, when it's 13. And the needle I take every two weeks).
11. Regarding alternative treatments I: love massage therapy and acupuncture.
12. If I had to choose between an invisible illness or visible I would choose: this depends on my mood. It would be nice to have people automatically see my disability, but it must be difficult to have the potential of constantly being defined by it.
13. Regarding working and career: I can currently manage my full-time job (which involves a lot of sitting and breaks when I need it), but need to lie down when I get home.
14. People would be surprised to know: that I may not love my situation, but I have accepted it. Having RA is a part of my life now (a pain-in-the-behind part, but still).
15. The hardest thing to accept about my new reality has been: currently not being able to walk to work. It's so close! And getting pregnant. I just want to jump right into that. Alas, that cannot be done.
16. Something I never thought I could do with my illness that I did was: I once jogged for 25 minutes straight. I was high on happiness after that :)
17. The commercials about my illness: bug me like crazy. Yeah, it's just that easy for the pain to go away. Or the deformed/missing joints. Or the scars. Or the mobility aides.
18. Something I really miss doing since I was diagnosed is: dancing for hours :( Being able to touch my head/face like a normal person.
19. It was really hard to have to give up: dreams of things that I would be able to do in my life. Things that involve being physical: most yoga positions, learning how to rock climb. In general, just being physically strong and capable.
20. A new hobby I have taken up since my diagnosis is: blogging :)
21. If I could have one day of feeling normal again I would: Have a full, active day, and not pass out at the end of it.
22. My illness has taught me: to celebrate what I CAN do.
23. Want to know a secret? One thing people say that gets under my skin is: "but you're so young!" or, "yeah, I have a bad knee, too". I'm actually not that statistically young for RA. And I don't have "creaky" joints. My immune system is attacking and destroying many of my joints.
24. But I love it when people: tell me how strong they think I am. It's really sweet :)
25. My favorite motto, scripture, quote that gets me through tough times is: life is good.
26. When someone is diagnosed I’d like to tell them: that I am here to offer support and help and a shoulder to cry on, if they need it.
27. Something that has surprised me about living with an illness is: just how much daily pain I can take. I have to say, it's pretty impressive what I do anyway, while being in horrendous pain (not to brag, or anything ;) ).
28. The nicest thing someone did for me when I wasn’t feeling well was: so many things. Between my mom and my boyfriend (and many other folks), I have been taken care of to no end: cleaning, dishes, dressing me, washing my hair, travelling with me to surgery, cooking for me, literally carrying me into the house :), asking me if I am alright, and most importantly, asking me if I need anything :)
29. I’m involved with Invisible Illness Week because: I actually just became aware of this too late. Next year I'd like to get more involved.
30. The fact that you read this list makes me feel: really good. And hopeful :)

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

I've had a rough couple of days, RA-wise.

I had been doing super well. Minimal pain lasting about a week. The Frankenstein/Hunchback of Notre Dame walk was not quite as noticeable. But, the RA monster has returned with a vengeance. In the ankle, shoulder, wrists and elbow :( Not to mention lovely side-effects from meds. Needless to say, I'm feeling a little negative. But, I don't want to. I want to feel positive. So, despite the pain, despite the med-induced nausea and fatigue, I'm going to think about positive things:

Road trip camping on a beach. The sound of the waves and sleeping on soft sand was just enough to erase the millions of mosquitoes:

Living in a part of the country with views like this:

The only form of exercise I can do these days :) :

Great friends who let me hold their really, really cute babies!:

All in all, life is pretty sweet. Sometimes you just need a little pick-me-up telling you that. So, maybe I have to hold down a job, but when I get holidays, they are filled with nature and amazing experiences shared with someone I love. I may not live in a cool, convenient city, but the wilderness and beauty around me far outweighs any convenience. Maybe I do walk like Frankenstein/Hunchback, but, boy can I ride a stationary bike! And, maybe I don't have my own babies yet, but I have many friends who do, and are all too happy to share the love and squishy-time :)

I feel better :)

Okay, so I am very new to the world of blogging. It's been something I've been thinking about for a while. I've come to realize it may be just the forum to meet women who are going through the same issues that I am. I hope it works :)

I have had very aggressive rheumatoid arthritis for the past 9 years. In that time, I have been on countless medications, have had many ups and downs, faced big mobility issues, and have had two surgeries (one total elbow replacement, and one resection to FIX that replacement. Fun times). My disease has not been under control lately, and I'm aiming to fix that.

See, here's the thing: I've got babies on the brain. Big time. Ask my boyfriend, he'll tell you :) And the thing with rheumatoid arthritis (aka RA) is that you can't just get pregnant any ole time. There has to be planning, around meds, flares, surgeries, etc. So, I'm really hoping to find other women in the blogosphere that knows what I am going through (and other cool people, by the way. I do have other interests: food, the environment, books, movies). So, I know you're out there, lets support each other, mmmk?