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Friday, March 30, 2012

A tough pill to swallow

This is a pretty long post... bear with me.  Or just skip it.  You won't hurt my feelings.  :-)

Some of you may know that I've been dealing with some lower back pain... Well, I'm finally convinced that I have a firm diagnosis so here's what's been going on with that:

For years now (5 or more) I've had pain in my right hip/lower back.  There doesn't seem to be anything that I do to make it hurt, it just comes on spontaneously in "flare-ups" and when I have an episode, I'll get sharp pain in my right hip for about 2-3 days.  When I'm having this pain, I can't fully straighten up when standing and if I put weight on my right leg, the leg will collapse out from under me.  At first, when I started getting these flare-ups (years ago), they were very infrequent, maybe 2 flare-ups in a year.  But recently they have gotten progressively worse and now I am up to about 3-4 per month.  This means I'm spending about 2-3 days each week laid up in bed with intense pain.  Or rather I WISH I was laid up in bed, but since I'm a SAHM of two very young kids, it's more like I power through the pain with great difficulty.

Since it had clearly become an untenable situation, I finally decided I had better figure out what was going on and if there was anything that could be done to help.  (Ok, I have to give credit where it is due. It was actually Brian who made me do it.  I was going to keep ignoring it and hoping it resolved itself on its own.  Also I wasn't entirely convinced that there was anything that could be done that wouldn't leave me completely incapacitated for a period of time, such as I would be if I had to recover from a back surgery, for instance.  So thanks, honey, for saving me from unspeakable tragedy... this will make sense to everyone else a few paragraphs down.)  So I saw my general practitioner, was referred to an orthopedic surgeon, had x-rays and an MRI done, which revealed 2 herniated disks, an annular fissure, canal stenosis, and inflammatory arthritis in the right sacroiliac joint.  Of all that, the arthritis was apparently the most concerning thing, and was the suspected culprit for the pain.  I was referred to a physiatrist and a rheumatologist.

The physiatrist suggested a steroid injection into the right sacroiliac joint as a means of providing temporary relief until the doctors could determine the exact type of arthritis and get me established on a more targeted treatment plan.  I had that injection performed a week and a half ago and I do suspect that it is helping (I'm not entirely sure yet because I haven't had a flare up since it kicked in, but the fact that I have gone this long pain-free I am taking as a good sign).  The injection can be therapeutic for up to several months, maybe even a year depending on how my body responds to it.

The rheumatologist ordered a bunch of blood work, apparently to rule out certain types of arthritis.  The two most common types of arthritis (rheumatoid arthritis and osteoarthritis) were ruled out, which really only left one plausible option given my profile and symptoms: He diagnosed me with psoriatic arthritis.  I saw another rheumatologist for a second opinion, and she confirmed the diagnosis.

Which means I also have the skin disease psoriasis.

That's right folks, two autoimmune disorders for the price of one.

This was not a diagnosis I was expecting.  I was completely shocked and honestly it scared me.  Basically, in my future I have embarrassing and/or painful skin lesions to look forward to (because psoriasis is chronic and progressive, meaning it only gets worse as you age) and while we're at it, how about some spinal bone deformations, making it possible that I'll end up in a wheelchair (since psoriatic arthritis is a type of artritis that is much more likely to cause deformity).

Ok now wait... everyone calm down and take a deep breath.  It's going to be ok.

Or this is what my doctors told me anyway.  If I was untreated, yes, this is what my prognosis would be: that poor wheelchair-bound girl with the gross rash.  BUT (big but) these are conditions that both respond very well to aggressive treatment.  And the sooner you start the treatment, the better.  (Remember how I said Brian saved me from unspeakable tragedy by making me see a doctor?  There you go.  My hero.  :-D)

Ok so what is this aggressive treatment, you ask.  Well, it's not great.  But it's doable.  That's really the best that can be said for it.  :-/

I will be on a combination of two immunosuppressants (which will weaken my immune system making me susceptible to disease and infection).  One of the immunosuppressants (Remicade, the TNF-alpha inhibitor infliximab) is given as an IV infusion.  I will have to go once a month and sit in their office for two hours (the IV fluid takes time to administer).  I'm still working out who will watch the girls while I'm doing this... I thought it could be my dad, since he has Fridays off, but they don't do IV infusions on Fridays.  (Of course they don't.  That would make things way to easy.)  The other immunosuppressant is methotrexate, which is actually a chemo drug used for certain cancer patients.  This is a serious drug, folks.  Commonly causes nausea (as you would expect with chemo) and mouth ulcers.   They will also have to monitor my liver enzymes while I'm on this drug, since it taxes the liver.  (So I also have to be careful of my alcohol consumption.)  And I was told (multiple times, by multiple doctors, in a very severe tone) that I CAN NOT get pregnant while I'm on methotrexate.  It is a drug that attacks rapidly dividing cells (such as a cancer... or a fetus).  At high doses it causes abortion, but on low doses (as I will be) it causes severe birth defects.

Ok so if the universe was not already telling me that I can not have any more children, now it's screaming it at me.  Very sternly, through the mouths of doctors.

The other not so great thing about this treatment plan: I will likely be on it (or something similar) for the rest of my life.  Both psoriasis and psoriatic arthritis are chronic.  So it is never going away.  And my rheumatologist has expressed to me that it would not be worth the risks (mainly the wheelchair part) to come off the drugs.  So.  Yeah...  Bummer.


That's all.

Cheers to those of you who actually made it through all of that and are still reading.  :-D

Wednesday, March 28, 2012

Ellowyn is a walker!

Ellowyn's first steps were actually over a month ago.  But I wouldn't have called her a walker until just this past week.

I remember when Mira started walking, it was nothing, nothing, nothing and then all of a sudden she was walking laps around the island in the kitchen.  Ellowyn has been very different: she's learned to walk very gradually, just a little bit of progress at a time.  First it was walking while holding my hands, then while pushing a toy, then while holding just one hand, then she'd take the two steps to cross the gap between the couch and the coffee table, then she'd walk 3-5 steps back and forth between Brian and I, etc...

Anyway, this past week she has really decided that walking is where it's at.  She will initiate walking on her own (this is new; previously, I would get her started and then let her go) and she now does almost as much walking as she does crawling.  She's still pretty wobbly, but when she falls she gets back up again and tries some more.

I'm SO ready to be done with the crawling phase.  Walking makes so many things WAY easier.  Running errands, I don't always have to carry/wear her.  Going into public bathrooms, I don't have to worry that she'll put her hands all over the floor.  She can carry things across the room, which makes her happy.  When I pick her up now, she will stand to meet me making it easier for me to get a good hold on her.  AND OH the parks!  Parks with a crawler are just nowhere near as fun as parks with a walker.  

Ok enough words.  Here's the goods:

This one is a bit long, but I thought it was cute... maybe I'm the only one.  

Thursday, March 22, 2012

Mira went camping! (Again)

You may remember that last October, Mira went on her first camping trip.  Well, she and Brian really had a great time and so they decided to do it again.

This time they went with my parents and my sister and camped for two nights at Guadalupe River State Park.  Ellowyn and I stayed home again.  With Ellowyn still not quite walking and still putting everything she gets her hands on into her mouth, I thought it might be a bit too soon for her.  And I'm not a big fan of camping anyway (all the work of being at home with none of the conveniences), so truthfully I was glad to have the excuse to bow out.  I got a lot done too, having only one baby to wrangle, so that was a nice bonus for me.

Anyway, that park is beautiful and perfect for young kids.  They had so much to do, they could easily have stayed longer.  I wasn't there, so I can't tell any specific stories, but I think the pictures speak for themselves...

The science center

Bird watching at the bird blind.


She learned how to throw a frisbee!

Kissing the booboos away.  (I think the frisbee hit her finger when she was trying to catch it.)


Wednesday, March 7, 2012

Weigh in - 5 months

This month I seem to have hit a breakthrough.  After two months of no progress, this month I've lost 5 pounds.

I'm only working out 3 times a week, but they are more intense than previously.

But the big difference this month is that Ellowyn has weaned herself so I am no longer breastfeeding.  I had heard from several sources that, while some women find that breastfeeding aids weight loss, others have the reverse effect and their body clings onto those fat stores in order to fuel the milk production.  I think I am probably one of the latter.

In addition to that, with Ellowyn weaned I no longer have any reservations about cutting my caloric intake way down.  And I'm finding that easier to do, since I'm not as hungry as I used to be when I was lactating.  I'm not actively counting calories, but I am being mindful to avoid high-calorie foods.  I think my goal for next month will be to get serious about calorie counting again.

Anyway, I'm feeling really good that I seem to be back on track.  All along, I had a hesitant timeline in the back of my mind: that I'd like to lose the 30 pounds in less than a year.  I'm feeling like that goal may actually be attainable.

I lost 5 pounds this month. Since I started 5 months ago, I've lost 12 pounds, putting me 18 pounds away from my goal of losing 30 pounds.