World Autoimmune Arthritis Day!

Greetings!

I would like to invite you all to come join me for a live blog chat/ interview from 7 P.M. to 8 P.M. EST for World Autoimmune Arthritis Day.  Because it covers several countries and time zones, the event starts on May 19 and runs until May 21st.  There will be many, many features.  Here is a little intro video for it.  Here is the official YouTube event video.  

This link brings you to the home page for World Autoimmune Arthritis Day!  The page puts it this way:

 "Have you registered yet for World Autoimmune Arthritis Day 2014 (WAAD14)?  WAAD14 is 100% ONLINE, which means you can join the convention from anywhere there is an internet connection.  It is designed for ALL people to attend, regardless of location and physical lim itations- all you need is a computer.

The convention site is built just like you are at a physical convention site, with booths to visit, Exhibition Halls, live Presenters (via "Live Chats"), and specialty features, such as this years' major event: A Day in the Life of an Autoimmune Arthritis Patient where patients can invite supporters to 'walk in my shoes for a day' by participating in challenges that mimic those faced by patients on a daily basis. " 

I was a part of this event two years ago.  This non-profit was brand new back then.  They have come a long way!  The founder, Tiffany, realized quickly after her initial diagnosis that people did not understand autoimmune arthritis at all, and that everyone seems to equate it to osteoarthritis.  While the two couldn't be more different, it takes educating people to make them understand it.  This reason is also why I blog.  It started out as a way to vent, until I realized that I was helping people.  I can assure you, that is NOT what I expected, but it's pretty cool!  :)  Anyway, please join me!  If you can't join me, there are many other people who are also doing live chats and interviews.  You have the opportunity to have questions answered.  It's volunteer run, and really has become quite the event.  Please join us if you can!  The registration info is below.  I hope that you can join us!

$5.00 USD Pre-RegistrationEntrance Fee to Live Event

May 19^th 6am ET/USA-May 21^st 5am ET/USA

& Access to Booths & Resources through May 31^st

$7.00 USD Entrance Fee During Live Event

May 19th 6am ET/USA-May 21st 5am ET/USA

& Access to Booths & Resources through May 31^st

FREE to Skip the Live Event

Access to Booths & Resources from May 21^st at 5am ET/USA through May 31^st

Our last hospital visit. Ugh.

I've had a few days to ponder and mull now.  I still feel a little numb, and just exhausted.  My Facebook friends know most of this, but I didn't want to leave anyone out.

I had emailed the nurse practitioner at our rheumies office last Monday, in preparation of our visit that Thursday and Friday.  She spoke to the doctor, and we all agree that she needed a new swallow study done.  Emily had told me that she feels like there is a bubble in her throat when she tries to swallow.  Hmmm.  Since she had started to get stuffed up again (on antibiotic number 2 for the month), I mentioned that, as well as the headaches she has been having.  I assume they are either from the sinus infection from hell or maybe from the growth hormones.

I wasn't going to tell her about the upper GI until right before.  I asked for Xanax for her.  She never uses that stuff except for medical testing.  She just freaks out.  It's bad.  I guess that everyone thought I was overreacting.  Nope!  It was supposed to be outpatient at 11, but knowing how difficult it would be to get us out on time, they made it inpatient at 11:30.  She woke up on Friday morning to the nurse telling her it was time to go downstairs for the test.  She got herself so worked up that she almost hyperventilated.  She cried for a good hour.  She didn't calm down until someone finally got her a 1/2 a Xanax, but it was too late by then.  She was rescheduled for 3:30, though no one told the scheduler downstairs.  We were discharged at 1:30, so we had time to kill.  We couldn't really leave, and since she couldn't eat, we tried to avoid all of the food places.

They told me to give her another 1/2 Xanax around 3.  Despite having one full Xanax in her, when they took her back she still had another hour meltdown.  I can't blame her.  She has no control, no say in any of this.  It sucks.  If I didn't suspect it was bad, I never would have pushed.

After she finally calmed down, she worked with them to help herself.  She asked to be slightly elevated.  I watched the barium start to go down, then back up, several times.  At one point, I thought the camera was showing something else, or glitching.  Nope.  What it basically showed is that she has, as the nurse practitioner emailed it, "Her study showed severe reflux and little motility of her esophagus."  Hmmm.   I suspected as much, but it still hurts to see it.  At the moment, that is really all that I know.  This is in conjunction with her patulous esophagus, which if you missed it, means that the muscles at the base of her esophagus have dilated and spread away from her stomach.  .  Well, this explains why she doesn't eat.

At the same time, she has spent 30 days on Augmentin and 10 days now on Clindamyacin, and she is still sick.  She had an x-ray last week that showed she is still gunked up, so the ENT is working on getting an authorization from rheumie to get this expedited so they can culture her and suck out the junk up there.  I really, really think she needs to be on a prophylactic antibiotic.  Then maybe we could stop IViG, and maybe not have to sleep over the hospital every month.

But, wait!  There's more.  I have noticed for the past couple of months that her ALT (muscle enzyme) has been a tad elevated.  I'm no longer the one to panic at the first sign of trouble, so I've just been keeping an eye on it.  However, Monday her thighs hurt badly- like a 6-7 on the pain scale.  That could mean that her dermatomyositis is also coming back, which would mean adding Prednisone back in.  We really, REALLY don't want to do that.  It makes me so sad.

If all of that wasn't enough, they ran her cortisol levels on Thursday morning before she had any of her hydrocortisone.  A normally functioning adrenal system will have a count of 10 or higher.  She was only at 1.3, so the hydrocortisone stays for now.  And the final kicker was the email from camp that she is on the wait list for both sessions.  At least we had a few good months.  Hopefully this will all pass quickly.  I guess we need to find a set Gastroenterologist now.  We've seen a couple before, but mostly as favors to our rheumies.  We don't really have anyone set.  Hopefully endo will be able to help her more with the cortisol, and ENT will see her fast to help her sinuses.  Please pray that all of this comes together just right.  Thank you.

Pain management and coping techniques

Pain Management and Coping Skills

Pain management has been somewhat of a hot topic lately.  Since I am on a little vacation, now seemed like a great time to talk about it.  When one has chronic pain, one needs to figure out what works for them to help deal with it.  We have found several things through the years.

Baths and water activities

Emily loves her baths.  Warm baths have a way of taking some of the tenderness out of sore joints and muscles. Sometimes we use epsom salts, which are known to help quite a bit.  Sometimes we use a scent that she really likes, like lavender.  Sometimes we use arnica oil, which is also really good for drawing out pain.  On really bad days she will use the epson salts in combination with an oil.

Water activities, like aquatherapy or water aerobics, are also quite helpful!  The joints are supported better by the water, causing less pain but a harder workout.  Many people that won't do a traditional workout will at least go walk around in the pool.  It is especially useful for people that have severe osteoporosis in their knees.

Paraffin baths

There's nothing like hot wax to help take the inflammation out of the hands.  Paraffin baths come in a variety of sizes, some with adjustable heat settings.  We have also found that you can add things into the wax, such as soothing oils.  We added some lanolin and essential oils to ours.  The longer you can hold the heat in, the better it will work.  It can be used for hands and wrists or feet and ankles.

Essential oils

Yes, we were very skeptical at first.  We really did not put much faith into them to begin with.  I know children that need morphine.  While they really needed it and it wasn't really by choice, it was an option that I did not want presented!  Lidocaine patches have worked for others in the past, but they did not work for my children.  We were running out of options, so we thought we would take a chance.  I still cannot believe how well the doTERRA Deep Blue works!  We use many oils now for many things, but our favorites are definitely the Deep Blue, and their headache blend, Past Tense.  Emily has a lot of headaches lately, partly because of her cortisol levels, partly because of the new hormones, and partly because of the sinus pressure the poor kid has in her head.  The two oil blends have helped her more than anything.  Also, the Deep Blue took her knee pain down to almost nothing.  (Please feel free to PM me if you are interested!  I am NOT a salesperson, but I can sell them if you are interested.)

Biofeedback and psychology

I had never heard of biofeedback before, but it's actually pretty cool.  When I was a kid, I was involved in every possible theatre class and production around.  My wonderful music and drama teacher in high school taught us relaxation techniques.  I tried to teach them to Emily, but, well, my last drama class was 1991.  I searched for apps, but at the time I couldn't find them.  I kind of let it go as a lost cause, until we started seeing our pain management doctor.  She is NOT the type who wants to push pills.  Quite the contrary; she did not want to add pills.  She decided to send us to biofeedback and psychology both.  Child psychologists are not the easiest to find, but child psychologists who deal with chronic pain patients seemed to be even more difficult.  We finally found one, but we had a 2 month wait to be seen.  We squeezed biofeedback in around psychology.  This was the coolest thing!

Maybe it isn't as amazing with adults because many adults have their minds set that this will not work.  (That is what our specialist told us, anyway.)  They talked.  Emily was hooked up to monitors.  Yeah, really.  They attach sensors to the sweat glands, and then show you how nervous or calm you are on the screen.  The great thing is that we could see that when we mentioned broccoli, her stress level shot through the roof.  (Seriously.  It's bad.)  However, after learning a few techniques, she could also see her stress level go down.  The cool thing about that is she could see how she could calm herself down.  The great thing is that these are techniques that she can use for the rest of her life.

Movement

I know- nobody wants to hear it.  I know I don't.  But it's true.  The days that I don't move, I tend to hurt more.  The days I make myself go to the gym, I have more energy and feel better.  If you can strengthen the muscles around the bad joints, the joints will have better support and hurt less.  Besides, we all know it is when we stop and try to re-start that we hurt the most.  Emily has to play on the Wii Fit at least three times a week.  I try to hit the gym as often as I can.  And I kick Zach outside to play with his friends.  

I have an amazing friend, also from high school, who has lupus.  She has had more back surgeries than  I can bear thinking about.  She is running marathons.  Yeah.  She totally puts me to shame.  I've been thinking lately that if she can do it, I can do it.  Right?  Maybe in time....

Stress Balls

For our hands we use stress balls.  Squeezing them can help to relieve some of the discomfort.  It's also good therapy.  Using your hands as much as possible is very helpful.  It can be hard when your hands are aching, but even wiggling them is good.  

Any activity is good activity! 

Free time!

I apologize for my slacking off when it comes to posting.  I am finally on summer break from school!  It's been a very tough semester.  I actually failed a class and then got a B in my other class.  I don't approve of either, but I've had quite a bit to adjust to.  I didn't even realize that it was stress until the semester was almost over.  I'm praying this doesn't kill my honor society status!

If we were the type to give up, we would have given up on growth hormone quite a while ago.  However, we stuck with it and she finally got it!  It has been about 2.5 weeks.  The down side is that she has had a major headache from it, so we agreed to skip a few days to see if the headache would go away.  We are hoping that when she re-starts it, her doctor will approve a lower dose, and then gradually move back up.  We have already seen some of the benefits:  improved sleep, for one thing.  It is also supposed to strengthen bones, which is wonderful considering that all of the years of prednisone can cause osteoporosis and brittle bones.  I know that this is the right step; we just have to find the right mix here.

She has another sinus infection.  If you read the last post, you may recall that we had a runaround trying to get her into the ENT for a swab and suction.  She ended up getting better spontaneously on her own before we could get the authorization.  Now she's sick again.  She just had 30 days on Augmentin.  She was sick again after a few days.  Now she is on Clindamyacin again.  I have another call into the ENT.

The other bit of Emily news is that, while we were at our pediatrician's office, she tells me that her throat is "bulging" again.  Apparently it is difficult for her to speak, and to eat.  The eating is hampered, but she also has too much reflux coming up, too.  None of the usual meds seem to be helping, so I emailed our doctor to let them know in advance.  This is a hospital week.  It should be interesting.  They are supposed to test her cortisol levels to see if we can start dropping hydrocortisone, and now they will also run an upper GI to see what is up with her throat.  Also, she has been telling me this week that her muscles are bugging her.  That could be from the growth hormone (we are hoping!), but it may not be. The last two visits I noted that her muscle enzymes were elevated.  Not a huge amount, but definitely increased.  I am hoping this will be just a fluke.

Zach is doing pretty well.  Now that he's had a steady supply of Enbrel he is doing better most days.  He's had a few days with a lot of back pain, a couple with knee pain, but overall he is good.

We are going to try the Paleo diet.  I am definitely going to try the Whole 30 on the advice of two friends.  While Emily is one of the pickiest kids in the world, and she would rather starve than eat broccoli, I am hoping that if I lead by example, they will follow.  I really feel like this could help, but if I push, then I have no chance.  I am not looking for a cure or a miracle; I'm not setting us up for a fall.  However, I see correlations with food myself.  I know that soda makes me more tired, it breaks me out, and I feel yuck.  I recently realized that is the same for most sugar.  I feel worse when I eat certain things.  I had chips this weekend and now I hurt everywhere.  I'm almost positive it's from the chips.  So, perhaps if we cut all of that out, things will be better.  The essential oils have been amazing, too!  There is an oil for everything!  Our favorite is doTERRA's Deep Blue.  Especially when we use a friend's concoction and add more wintergreen and frankincense to it.  Amazing!  Now I see that many of my migraines were from my neck.  It's been a fascinating couple of months!

I am hoping for a calm summer since we didn't get to do anything fun last year.  This year I am hoping that we can go out on Friday's to do fun stuff!  After this week...  I will try to post from the hospital when we know more.  Take care!

Little update

I can't believe how long it has been since I blogged!  Since last I wrote, we have seen the ENT to discuss a plan for the next time she gets sick.  The plan has been that we call ENT when she gets sick to get her in for a culture.  I really wanted them to culture so we could figure out what antibiotic would actually work. While they are in there, they want to suck out the extra crap that seems to never leave her sinuses in her forehead. I'm so over trying different antibiotics and her still getting sick when we stop.   Unfortunately, that time is now but it hasn't all lined up.  They sent the authorization to the wrong fax number, then when our rheumies got it, they only could make out half.  Hopefully since we are at our rheumies now, that will get situated.  She also recently saw endocrinology and had her growth stim test, which she failed miserably.  We have an MRI scheduled for next week to rule out pituitary problems before we start growth hormone.


As of today, Emily has the go ahead from our rheumies to STOP PREDNISONE!!!!!  That is HUGE!!!  She has been on this steroid consistently since October 12, 2010.  She has come a long way!  She started on 42mgs.  She was on the liquid, which is 15 mgs per 1 teaspoon (5mls).  She was on 7mls twice a day, and currently she is on 0.2mls.  I told the doc's that I would prefer to taper, so it will be a week or so before she is fully off.  I am sooooooo excited!!!  So is she!  At this point, the risk outweighs the benefit.  I showed our rheumie the cortisol levels from the growth stim test, and she was floored at how low they still were, despite hydrocortisone twice a day.  The down side is that we have to increase hydrocortisone temporarily, but it is only temporary.  She is still on a plethora of other immune suppressors, but eliminating one is a good start!  No other news today, but if anything else has changed we will know by tomorrow.  Her MRI is set for next Friday, so hopefully we can coordinate ENT before that.

Zach had an appointment today, too.  We have been fighting to get his Enbrel for over a month now.  Thankfully I tend to hoard medicine a bit, so we had some extra.  I've been spreading them out, giving it to him every six or seven days, instead of twice weekly like it's supposed to be.  Apparently it showed.  Our rheumie and nurse practitioner both noted that he has more back pain and tenderness than he should.  If his back is still that bad in 3 months at his next appointment he will have an MRI to see why.  They also pointed out that he is hypermobile.  That is one of those things that I don't (yet!) know much about.  All I know from my fellow JA mom's is that it can be quite painful, and it can cause enthesitis, which is basically like inflammation of the tendons.  Sounds like a good time, eh?  Poor kiddo.  Obviously, all of this shows that he is NOT ready to go off of Enbrel.  In fact, we are also going from Methotrexate pills to the injection.  I am really hopeful that once we get his Enbrel back on track, he will start to do better.  Through the week it's hard to remember that he has arthritis, too.  These are always painful reminders.

I'm doing pretty good.  I'm finally off of Medrol (like Prednisone).  The only down side to that is the neuropathy coming back, along with the joint pain.  While my rheumy feels that my Sjogren's may turn into something else, his nurse practitioner is hopeful that it will not.  I'm choosing to think she is right.  :)  In truth, aside from my right hand going numb every morning, and my one bum shoulder, the worst is the chronic fatigue.  I am always sooooo tired.  That aside, I am holding up well.  I'm thankful that my symptoms are mild enough that they don't prevent me from doing what I need to do.

And that is that.  I will try to find the time to update after the MRI and other important appointments.  Thanks for following!  :)

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!

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!