Dilemma and Goal-Achievement!

So, we are leaving for a much needed vacation on friday and my dilemma is this:  I'm due to take my humira shot next thursday (in the middle of vacay) and we are going to be driving/camping.  Should I take the needle with us in a cooler and risk the temperature getting all wonky and possibly ruined, or should I just leave it and take it when I get home?  If I left it home, I would be taking it a week and a half late.  I'm pretty inclined to leave it at home, but am a bit worried that that extra week and a half would put a painful damper on our vacation.

I wish planning a summer road trip didn't also mean having to plan around refrigerated meds!

To end on a positive note, I am beyond pumped about this holiday!  Initially we were planning a trip for the end of august, but due to work commitments, we are now leaving in a couple of days.  The sooner the better, I say.  This holiday couldn't have come at a better time: work is beyond hectic, we've had to deal with no running water, then no hot water at home.  And, to top it all off, our car died (which would have really sent our vacation into a tail-spin as that was our way of gettin' outta here).  But, the car is fixed, and due to my beloved, we have glorious, running, hot water :)  Yay for showers!

So, on friday, we are headed out to Gaspesie, a peninsula in Quebec.  For a fish-lover such as myself, this is going to be a heaven.  AND, folks, I will be fulfilling a goal that I had made for myself a couple of years back!!!  I had read this book and totally loved it.  It was funny and made me absolutely determined to someday hike the Appalachian Trail.  Well, the International Appalachian Trail starts in Gaspesie!!!!  I'm actually going to get to hike on it!  I can't wait!

Love/Hate Relationship

No matter how long you have been injecting yourself, how many needles have pierced your skin, it always sucks to have to do a shot.  There it sits on my table, taunting me, warming up to room temperature to hopefully not sting too much.  I don't even want to really know what's in it, cause I'm pretty sure that would freak me out.  It's not even the needle sharpness that hurts, it's the med itself.  Grrr.

Go away, you stupid needle!  No, wait, come back.  As much as I want to never see you again, you are helping me (in your own sick, twisted way).  At this point I wouldn't be walking without you.  I guess you are doomed to be a part of my life for the time-being.  Sigh.

Testing, Testing

So, I did something kind of stupid, yet interesting over the weekend.  Bear with me here.  I had been reading over and over how anti-inflammatories can affect your chances of getting pregnant (preventing the implantation of the blastocyst).  I've been taking anti-inflammatories and I'm still not pregnant.  I know that it hasn't been very long, we're in our fifth month of trying now.  But, what if it is making a difference?  What if the five months turns into eighteen?  Or something?  So, without doctor knowledge, I stopped taking my diclofenac and took acetaminophen instead.  A combination of expired acetaminophen (discovered later) and acetaminophen for arthritis.  Yeah.

So, the friday evening and saturday went pretty good, I went for a walk and everything.  But sunday turned bad.  And monday morning was a crazy beast who was repeatedly slapping and punching me everywhere on my body.  I hadn't experienced such global pain since my diagnosis days.  Needless to say, when I had my breakfast monday morning, it was accompanied by a diclofenac.

Now, I'm just annoyed.  I know I need the diclofenac, or some kind of strong med.  Is it terrible that I don't want to take prednisone, not just for the unhealthy side-effects, but the aesthetic ones too?  Is that ridiculously shallow of me?  I've never taken pred, but it is one of the safer drugs to take in pregnancy, and I'm pretty sure it would give me relief.  Thoughts??

Monday, Monday

Blah, blah and flare.

So, after only having a one-day weekend (working on sunday) I'm back at work for a thankfully short week.  Having just the one day off has drained me beyond belief!  I cannot wait for that glorious four-day weekend to sleep and just plain relax.  And, maybe eat.  I like to do that sometimes, too.  And walk my dog, poor girl has only played frisbee in the backyard lately.  Though she did get to go ice-fishing yesterday.  Without me.  While I had to work on a sunday.  Is it ridiculous to be jealous of my dog?

Anyway, I'm noticing that my RA seems to flare a few days before my next shot of humira is due.  It's like my body has run out too quick, or something.  I wonder if this is just a coincidence, or if it is actually the case?  I had always assumed the reason I took the meds every two weeks was because it stayed in my system that long.  I suppose it is like any other med, sometimes they just don't cut it.

What I wouldn't give.....

....for a rheumatologist.  I live in no-rheumy land, and it kinda sucks.  One comes up occasionally, but my last appointment (a good year and a half ago) was incredibly brief and he basically slapped me on the hand for not taking enough meds.  I don't know about anyone else, but this method does NOT work for me.  I usually make do, I have a pretty up-to-date gp and I'm pretty savvy with getting myself ed-u-ma-cated.  But, sometimes you just want to talk to someone whose main focus is RA.  I have so many questions and concerns about getting/being pregnant with this disease.  I think I just need a lot of comforting right now.

Anyone else have issues with seeing a rheumatologist?

1 step forward, 700 steps back

So, I am trying to make preventative plans to manage my disease for when I actually get pregnant and everything seems to come back and bite me in the butt! I've always heard that turmeric is great for inflammation, and recently read about turmeric tea here : http://meghantelpnerblog.com/.

Then, I thought, "I drink a green smoothie nearly everyday. Why don't I just add it to my smoothie?" And, I did, that very morning. I also started making plans to really up my drinking of juniper tea (it grows wild here) during my future pregnancy. This stuff is the shiz-nit. I've heard that they (you know, "they" being the medical establishment) are actually studying it as a treatment in cancer patients.

So, I got to the office (what? Am I supposed to be working at the office?) and started googling these things, just checking them out, reading all about their lovely benefits, when I get down to the contraindications: to be avoided while pregnant. What?!?!? But, what about my plan? I know that the majority of women go into remission while pregnant, but that doesn't usually happen until the second trimester or so. What about the first few months of no meds?

So, my question is: are there any natural anti-inflammatories out there that can be safely used while pregnant?

The post that contains way tmi about my cycle

*Warning! TMI alert!! Apologies in advance to Mike, who may be the only guy who reads this blog. Well, Dom may occasionally read it, but trust me, he gets waaaayyyyy more details :)


Hey, remember that movie with Katherine Heigl? The funny one in which she got knocked-up? What was it called? Oh yeah, "Knocked Up". Well, let's just say that the title does not apply to me.

That's right, I'm not pregnant :( Boo!

I'm surprisingly alright (having some disappointed moments, but still), mostly due to thinking like this:

1. The pill hasn't totally screwed me up, cycle wise. I was scared that I would be one of those women who didn't get her period for like, six months or something after stopping the pill. Not the case. Score for regularity!

2. I thought trying for a baby would be out in February, what with future daddy being away for a month and all. BUT, with a slightly shorter cycle than expected, we may not miss out. Pending super-strong swimmers, of course.

3. Humira is actually working. I cannot remember the last time I wore my ankle brace. Life is not perfect, but I hobble way less these days. Not being pregnant gives me a chance to keep taking humira for a while longer, get even better, and have a healthier pregnancy. Sweet.

4. An additional month to get mtx out of my system. Just in case there are some lingering bits clinging on to my liver, or kidneys, or fat cells. Maybe I can work on those fat cells a little, while I am at it.

5. Not being huge as a house for one of bestest's weddings in Newfoundland :) At which I am standing. If I got pregnant right away now, I'd be 6 1/2 months at the wedding, which sounds a bit more reasonable for travelling and fitting into a dress.

Ummmm, that's about it. That is all the positivity I can muster right now. Which is pretty damn good, if you ask me.

Today is a beautiful day. Today I walked home from work.

This is something I have not done in a long, long time. In fact, I have not done it from my new workplace, that we moved to in November. What would take just over ten minutes, took me at least 20. But, I'll take it. AND, it was more awkward than it was painful (though, I must say I was happy to get home!). Could it be that the humira has kicked it? Methinks :) I felt a real sense of independence again today. I've been so used to my legs getting me where I need to go, the loss had been hard. But, they got me where I needed to go today.

A beautiful day, indeed :)

Practicing Patience

I don't think I ever would have qualified as a "patient" person. And, that is no more truer than now. When you are trying NOT to get pregnant, you think you ovulate waaaayyyy too often. When you ARE trying to get pregnant, all you can think is, "once a month???? I have to wait a whole month?!?!?!? ARGH!!!!!!"

In better news (and to distract myself), my RA has taken an upswing again today. I must say, I feel alright :) I did have a pretty big flare last week, which I am blaming on the bipolar weather we have been experiencing in Labrador. It really seems as though stopping the mtx has not had too big of an effect on my system, and also that maybe the humira is starting to kick in. I still don't know if I am up for a snowshoe....but I have hope :)

Oh! And, I am starting a conversational beginners French class tonight! I'm finally doing something it!

Okay, I'm glad that I just reminded myself that there is plenty going on in my life, other than trying to have a kid :)

Jumping on the bandwagon

So, as usual I have been trolling through some of my favourite blogs and am noticing a theme. Many folks are doing recaps of their past year. Now, this gave me a realization this morning, as I sit here reading and drinking my (mostly) decaf coffee: perhaps this is an exercise I should also engage in. With my focus (read: obsession) with having a baby, and all of the positive things that will come from that, I forget the amazing things that have happened this past year. Here are some of my highlights:

1. We bought a house!!! I just realized that we moved in a year ago yesterday!!! I love this house dearly, but with my new ankle issues, I'm struggling a little with it being a split-level. But, that was part of the appeal for me, several sections, but each not too far away. Loves ma house.

2. My in-laws came up to Labrador for the first time! We had a great visit, did some hiking, built a deck, ate a lot of bbq, introduced our families, generally an awesome time :)

3. Spent lots of time with great friends. Always essential. Critical, even.

4. I got appointed on the Provincial Advisory Council on the Status of Women. Aside from just being awesome in general, this appointment gives me the opportunity to see my bestest in St. John's. Who has a mini-bestest that I like to poke :)

5. Road-trip!!! In two weeks we covered about 5000 km, 5 provinces, 5 ferries, saw lots of wildlife, ate obscene amounts of seafood, got a flat in the middle of nowhere and I slept in a tent with my cutie :)

6. I stopped mtx!!!! Gimme a high-five! No, don't do that, it'll hurt my wrists. Let's do it mentally. This one makes me supremely happy for a couple of reasons: baby-makin' and no more grossness.

7. Family for Christmas!! My in-laws came again, this time with my brother-in-law and his girlfriend (from Mexico!). It was touch and go whether we would actually get snow for them to play in, but Mother Nature pulled through :) Ski-dooing, hikes, snowshoeing, sliding, it was an exciting time to be at our place :) Nothing better than a full house for Christmas (this is especially awesome when you own a split-level).

8. We decided to have a baby :) AND, being told by an ob/gyn that I am healthy enough to have a baby, despite my RA. That was my all-time fear. That appointment was pretty magical for me :)

I know that waaaayyyy more things have happened over the past year, and I am probably forgetting some pretty important ones. However, this is what is in my head right now. I know I am always wishing time away, and that is not cool. It's good to just live in the present, after all, it is where you are right now. Sometimes, though, it is good to do some reflection, to see where you came from.

Yay!

So, my last dose of methotrexate is done. Over. Finis. You can call me one happy girl, indeed :) AND, it turns out that I am not the disease-ridden monster incapable of bearing and caring for children. Nope, as it tuns out, my first appointment with our ob/gyn was amazing and he was very confident in my health and impressed with our plan and research. Basically, he said, "go have a baby!"

Smiles :)

Blessings

As much as I hate this disease, as much as I want to kick it to the curb, as much as it has destroyed and will keep destroying my body, and testing my sanity, it could be much worse.

On top of the unbearable pain, the stiffness, the change in quality of life, the planning months in advance for something so natural, the fear of what my future holds, the worry about what I am getting my partner into, there is one thing that has never been a worry:

I could also be in financial ruin like so many others with my disease. Or unable to access medications to manage my ra.

Some medications can cost up to (and maybe even beyond) $25,000 a year. Seriously.

And, I have it all covered. All of it. My medications, travel to see specialists (where I live, I have to fly at least 1 1/2 hours to get to a rheumatologist/orthopedic surgeon), everything.

I am a member of an Aboriginal group that has self-governance and provides amazing non-insured health benefits. No co-pay, no claims, if my doctor is recommending it, it is most often covered entirely. If the medication is deemed okay by Health Canada, then it is a go. My mother has traveled with me for up to a week to help me post-surgery. Plane tickets, accommodations, food, both of us covered.

I had always planned to come back to Labrador after school (which was also fully covered: travel, tuition, books, living expenses. Seriously.) and give back to the communities. And I have. This is my home, and it has given so much to me.

I may have a crazy, crappy disease, but I am so, so lucky. And, I am so, so thankful.

Blargh!! And Rowr!!!

Ew, ew, ew, methotrexate sucks!! I can't wait to be done with this vile medicine (for you four readers who don't know, it's a low-dose chemo)! AND, I just realized that I am only weeks away from stopping it! Gimme a woot!

I took it last night, and already feel a mouth sore cropping up. Yuck. And ow.

So, soon, no more nausea, mouth sores, med induced fatigue (I'm guessing fatigue is a part of my life, not just from meds), and having to drink gallons of water to flush it through my system. I do like water, but it's overwhelming to drink so much when you feel icky.

For my dose of positivity to get me out of this methotrexate fog, I have another physio appointment this afternoon :) I think it will basically just be me telling her that I love my ankle brace. Did I mention that I love my ankle brace? Cause I do. Here are some pictures that make me happy:

We grew sunflowers in our backyard! Really!:

Cute boy with yummy fish. Life does not get better:

She never looks straight at the camera! It's a little dark, but isn't she cute?:

Walking? What a strange concept :)

Soooo, I finally got my long-awaited appointment with the physiotherapist last week. My goal was to get an ankle brace to provide some much needed stability to my left ankle. And that is exactly what I got in the form of this:

www.aircast.com/index.asp/fuseaction/products.detail/cat/1/id/6


Awesome!

Hopefully I will be getting my custom-made orthotics this week as well, and I'm really hoping that with the two of them combined (plus meds kicking in, please?) I'll be able to go for walks!! Imagine that! Or, even just walking down the road to work!

It's too much. I can't handle it.

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

Babies, babies, oh my!!

It's starting to feel really real. The whole baby thing. Not that it didn't feel real before, but something has been solidified. We had an appointment with my regular doc yesterday with the focus of informing him of our plan, asking a few questions, and asking for a referral to an ob/gyn (with whom I already have an appointment!!! Fast work, indeed!).

Now, it's not like I'm expecting the pregnancy to automatically be difficult, or scary. But, I want to be prepared in case it is. What if I'm not in the high percentage of women whose RA gets better? What if it gets worse? What meds are safe to take? Any??? I just want a good established relationship with an obstetrician BEFORE I get pregnant to avoid any delays when I get pregnant.

I just spent an afternoon in the company of some great women, and especially, some great kids. It was really nice getting the phone call from the doctor's office with my appointment date, then going back out and seeing these cuties and thinking, "this could be me, soon" :) Now I get to spend an evening with some great friends, good food, and one rockin', stompin' baby.

Happiness :)