Wednesday, November 27, 2013

And then there were three

A few years ago I started to notice some things about myself.  I was turning pretty white when it got cold, I would get random pains bad enough that I almost drove us off the road a few times, and chronic fatigue.  The fatigue was bad, really bad.  I didn't have time to deal with it, so I pretty much just ignored it for a while.  Until my shoulder decided to rebel.  And then my knee stopped working for a few days.  Then my hips started popping every day, and aching often.  And my ankles started to feel like glass shattering when I would stand up.  Eventually I brought it up to my doctor.  He quickly dismissed me.  He did a fast strength test on my hands and decided I was fine.  After all, I was too young for Rheumatoid Arthritis, despite having two children with Juvenile Arthritis.  Since it really took a lot for me to say anything at all, and my symptoms weren't bad, I didn't really argue.  I told him that I was pretty used to being invincible but something was starting to happen to me.  I told him I felt like we had to catch it before it got bad because I don't have time to be sick.  He nodded politely and sent me on my way. 

Eventually I gave up.  He wasn't listening.  By this time I had new stuff- my right hand was going numb every single morning, and my right foot would go numb when I was about due for my vitamin B shot.  Eventually I noticed it would still go numb after my shot.  Then my hands started "cramping".  That started to affect my work and my schooling.  I knew it was time to move.  I finally got myself a new primary care doctor, with a little urging from several JA friends.  I guess at this point you could say that I wanted to be tested but I didn't really believe I had anything serious going on.  I mentioned my kids' illnesses to the new doctor, but I didn't tell her I suspected RA for me.  When I started telling her about my hands she immediately asked if I had been tested for it.  I explained that our old doctor didn't feel it was possible.  She actually listened.  I felt totally comfortable with her.  It was nice!

Even though she felt that I probably had the start of it, I still dragged my feet on seeing a rheumatologist.  My labs weren't pointing clearly to anything in any direction, and I still didn't feel like I was bad.  I finally made myself go two weeks ago.  My rheumatologist was hoping that steroids would do the trick and it would disappear.  He said that he sees about one person a week that has such a mild case that steroids alone kick it out and they never come back.  I hoped I would be that case!  Nope.  My shoulder is about 50% improved, but my wrists tonight are aching enough to keep me up.  My knee is still not happy.  So, they also ran additional labs.  They ran a few that I hadn't seen before.  I didn't really have time to look at the prescription, but we talked about it Monday.  I tested positive for both Sjogren's tests.  And suddenly it all makes sense.  The neuropathy, the lighting bolts I sometimes feel shooting down my arm, my anemia, and even my thyroid are likely all related to it.  And then there is the leaky eye that I thought was a blocked tear duct.  That is most annoying.  I have made my peace with it over the past 24 hours.  At least I have some answers.  We are going to try Plaquenil to see if it helps.  It may take 4-6 months to kick in, but if it helps to keep me from getting really sick it is worth a shot.  The PA said that because I don't have high inflammation counts I will not likely see deformities or even a lot of degeneration of the joints.  I guess if I have to have RA, this would be the way to go.  I'm a little sad, but I am determined to stay on top of it and beat it.  My kids have been such examples for me.  I have to be strong for them.  

I still have like the best family ever.  That really helps to keep me sane.  My kiddo's are all amazing in their own way, and I cannot even believe how much I love and like my husband.  I still consider myself blessed.  Just burdened.  :p  

I am spending the next two days cooking!  I hope that everyone has a wonderful Thanksgiving!  Take care & God bless!

Thursday, November 14, 2013

Lots to be thankful for

Sometimes it hits me how surreal our life is.  Sometimes I realize how not-normal our "normal" is.  Sometimes I feel worried, scared or nervous about how our kids are doing, but then we walk through this cancer ward and it really puts things into perspective.  We see mothers crying in the hallway because their children are given a terrible prognosis.  Children that look more ill than any old person that I have seen are not even allowed to leave their rooms for fear of germs.  These are the days where I really embrace all that we really have.  Our home life is better than probably 80-90% of families out there.  I love being home with the kids more; I rarely have to raise my voice.  We all feel happy when Ash comes home from school or Kevin comes home from work.  That is how it should be, but I suspect it is rare for many other families out there.  I don't just love my family- I like them, too, and we enjoy each other.

Today has been a really good day at the hospital.  I feel like we've gotten some answers.  While Zach's ankles are still not great, and he has a bad spot in his back, he's doing pretty well overall.  We were talking and thinking back to when one of the doctors here first looked him over at camp.  He was a mess.  He had huge red sores (plaque psoriasis) all over him.  It was horrible.  Enbrel has given him a chance at a normal life in multiple ways.  Thankfully, 2 years down the line it is still helping him.  We got him a prescription for physical therapy because I'm not sure how to help his pain when he is walking a lot or playing hard.  I have some ideas, but I know that his issues are different from mine and what works for me may not for him.  I'm hoping that will help him to gain some endurance, too.  Otherwise he is doing very well!

We established that Emily's Pulminary Function Test came back with no problems, so that is great.  I thought it would be okay, but one can never be sure.  I spoke to the doctor at length about how her pain levels don't seem to jive.  She still hurts a LOT, and it keeps her from wanting to do much of anything.  We agree that some of it is her age with the hormones starting, some of it is muscle memory, and the adrenal insufficiency isn't helping.  We also discussed the growth problems and how growth hormone may be the key to calming her pain down.  To put this into perspective, I am 4', 9.5" tall.  I have been this height since I was 10.  Emily will be 12 on December 6.  She is 4', 1.5" tall.  I don't want her to be doomed to shortness, but I also believe that those cells not regenerating are storing pain in the nerve endings.  If her joints are good, and her muscle strength is good, then it makes sense.  Some of it is that she needs to stretch more.  We have discussed this often; I know that she is trying, but I think we need to switch it up a bit.  Her knees were bright red for months.  Today they actually looked good, but they still hurt.  I've been telling her that I think her IT bands are tight.  They just need to be stretched and she'll feel better.  It's so hard to get her to want to move.  In any case, I will take this to our previous appointments.  I think that the hydrocortisone is helping quite a bit, so hopefully she will start to feel even better from that soon.  It's a slippery slope but I have hope that soon this will all be easier for her.

One good thing is that this doctor really sees why we need endocrinology.  It makes me feel less like a paranoid, over-reactive mom.  I really try hard not to be like that.  I try to approach things with as much distance as I can, and from a clinical approach.  It can be hard, but I put a lot of thought into everything before we make decisions.  Em & I talk about it, and then Kevin & I talk about it.

As far as I know, tomorrow should just be a fast release home, but we shall see.  Sometimes things sneak up at the last second.  I still have to give our doctors here a copy of her 24 hour urine test that nephrology ordered.  It's all over the place.  Almost every section is flagged.  We see nephrology and pain management next week, and we are awaiting an appointment with endocrinology closer to home.  The endo that we saw once is leaving the hospital, and since it was two-three hours away we wanted to find someone close.  I will let y'all know how those appointments go.  I am praying endo will see her very soon!!!

*Friday note:  Dropping to 0.3mls of steroids!!!  She has been consistently on steroids with no break since October 2010.  Again, she started at 42mgs, which was about 7mls twice a day.  UGH!!!!!  She has come a long way, but finally there is an end in sight!  WOOT!!!  This is exciting!