Friday, February 25, 2011

Hypermobility and Pregnancy

I am starting to think Elastigirl has nothing on me!
There are certain things I expected during pregnancy - weight gain, aches, tiredness, and the normal pregnancy things.  I didn't expect my joints to go nuts!  I thought I was getting a reprieve from the joint pain because the RA is in remission during pregnancy (that alone calls for a happy dance!).  Well, I was wrong.  Enter the hypermobility.

Officially it is called Ehlers-Danlos Syndrome type 3 (EDS-3).  Basically, it is a biglong name to say that under normal circumstances my joints are very loose.  "Hypermobility just means that you can move some or all your joints more than most people can."

I have know my whole life my joints were very flexible.  I always did great on the flexibility parts of the PE classes - which confused the teachers because I am not an athletic person at all, but I could beat most of the other kids scores on the "sit and reach" box.  I could almost fold in half as long as I didn't let my knees bend backwards on me and kept them flat.  I also knew I had weird knees because other kids would make fun of mine.  They have always bent slightly backwards unless I am paying attention to get them to stop at the normal mid-line point.  My ankles have always been a source of amusement for me because they can fold flat on the floor if I am sitting on the ground, but they are very prone to breaks and sprains, too.

Honestly, I never realized these traits were so weird because my mom has them too (and I recently found out my dad has some of them, just not as many and as crazy).  It wasn't until I went to the rheumatologist and he said something about it (as part of the RA craziness), and my niece was diagnosed with it that I started looking into it. 

The way they diagnose  hypermobility is through the Beighton score.  I will honestly admit, I have no clue what score my rheumatologist gave me, but considering I can do almost everything on this chart, I would say it is pretty high. It is one point for each trait you have on each side of the body, with a total of 9 points possible.  You also have to meet a set of criteria and there are various combination of them.  


Major Criteria

  • A Beighton score of 4/9 or greater (either currently or historically) 
  • Arthralgia for longer than 3 months in 4 or more joints

Minor Criteria

  • A Beighton score of 1, 2 or 3/9 (0, 1, 2 or 3 if aged 50+) 
  • Arthralgia (> 3 months) in one to three joints or back pain (> 3 months), spondylosis, spondylolysis/spondylolisthesis. 
  • Dislocation/subluxation in more than one joint, or in one joint on more than one occasion. 
  • Soft tissue rheumatism. > 3 lesions (e.g. epicondylitis, tenosynovitis, bursitis). 
  • Marfanoid habitus (tall, slim, span/height ratio >1.03, upper: lower segment ratio less than 0.89, arachnodactily [positive Steinberg/wrist signs]. 
  • Abnormal skin: striae, hyperextensibility, thin skin, papyraceous scarring. 
  • Eye signs: drooping eyelids or myopia or antimongoloid slant. 
  • Varicose veins or hernia or uterine/rectal prolapse.
The BJHS is diagnosed in the presence two major criteria, or one major and two minor criteria, or four minor criteria. Two minor criteria will suffice where there is an unequivocally affected first-degree relative.
One of the criteria is ruptured spinal disk (hernia), so I have wondered if the hypermobility didn't contribute to some of that.  Along with all the sprained ankles and wrist problems, too.  Looking at the signs and symptoms is a fun list, too:


  • Highly flexible fingers and toes
  • Loose, unstable joints that are prone to: sprain, dislocation, subluxation (partial dislocation) and hyperextension (double jointedness)
  • Flat feet
  • Joint pain without inflammation
  • Fatigue, which can be debilitating
  • High and narrow palate, resulting in dental crowding
  • Vulnerability to chest and sinus infections
  • Easy bruising
  • Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
  • Velvety-smooth skin which may be stretchy and is often translucent, with blue veins clearly visible on limbs and particularly in the hands
  • Abnormal wound healing and scar formation (scars may appear like cigarette burns)
  • Low muscle tone and Muscle weakness
  • Early onset of osteoarthritis
  • Cardiac effects: Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse)
  • Unexplained "pins and needles" or numbness in extremities
  • Difficulty regulating own body temperature, resulting in a vulnerability to the cold and heat. Many patients suffer fatigue and dizziness when exposed to hot conditions, eg. having to sit outside on a hot day
  • Severe mouth ulcers. Many patients complain of having several mouth ulcers at any one time. This is believed to be due to tissue fragility and vulnerability to infection
  • Food allergies and intolerances are very common
  • Sensitivity to medications. One of the cruelest aspects of EDS is that many patients experience bad reactions to medications, such as pain killers, making it very difficult to find safe, effective pain management[citation needed]
  • Migraines and headaches
  • Fibromyalgia symptoms: Myalgia and arthralgia


Over Thanksgiving last year we were talking about it at AJ's parent's house and I said something about my thumb will bend to touch my wrist, couldn't they do the same?  None of them could.  Apparently, that was an abnormal thing.  AJ had never seen me do that and his eyes got huge.  Now, I am not allowed to do it in front of him because it freaks him out.  He is scared I am going to really hurt something by doing it, but it doesn't hurt to do it.  It only hurts if I was to leave it like that and have the muscles get tight from staying in that position.

That is where the pregnancy problems come in.  With the pregnancy hormones (relaxin) making everything more stretchy the muscles are being forced to accommodate the joints going crazy.  I had an appointment two weeks ago with the rheumatologist and talked about all this.  I told him my joints were really floppy.  He nodded, examined me, and then chuckled.  He said they were really loose and the would probably get a bit more so as things keep going. Oh, yay!  He also found it interesting that at 6.5 months pregnant I can still lay my hands flat on the floor standing up because my hips and spine are that loose. There isn't anything we can do about it but splint the ones that are really painful - which means I am sleeping in wrist brace at night to keep me from contorting my hands into unusable claws when I wake up. 

I have learned some very interesting things to keep my eye on though for the rest of the pregnancy.  The Hypermobility Syndrome Association has a fun sheet just on pregnancy:
  • Joint and spinal pains may increase during the course of the pregnancy.
  • There is a tendency to premature rupture of the membranes and thus of premature labour and delivery.
  • There is a tendency to rapid labour.
  • There is an apparent resistance to the effects of local anaesthetics is seen in about two thirds of patients and can cause problems for the unwary during epidural anaesthesia or infiltration for repair of a tear of episiotomy.
  • Healing of tear or episiotomy may be impaired and/or prolonged and surgical technique may need to be modified accordingly.
  • She may find lactation and care of the newborn baby more taxing than most.
  • Pelvic floor problems (uterine prolapse etc) may occur in later life so that the practice of post-natal exercises is particularly important.
  • Since JHS follows a dominant pattern of inheritance there is a 50% chance that any offspring will carry the gene, although this does not mean that he/she will necessary develop symptoms of tissue laxity subsequently.
I am worried about the premature labor aspect.  I was born early and luckily, I didn't have any crazy health problems (the kind that put a baby in the NICU), but I was still about six weeks early (and I was a very early surprise to the point that my parents didn't have a crib, diapers, or anything ready).  We are praying Bug stays in until he is already to come out on his own.  I am also worried about the epidural.  I am trying to prepare myself not to have one by using Hypnobabies birthing.  Though, they say not to take the anesthesia class I think we are still going to because I want to know how it will work with the ruptured disk (the ones that are ruptured are the ones the normally put the epidural into), the fact that pain killers don't work on me very well at all, and I just want to know how the heck they work.

I have read several sites and forums about breastfeeding and EDS-3.  I wish I had booked marked them, but it seems to be a consensus that it is going to be a bit more difficult.  Great. Not exactly what I wanted to hear on top of the RA very probably making its ugly return.  I am working on surrounding myself with other moms who are breastfeeding and working on staying very positive about the whole thing.  I even got the track from Hypnobabies about Breastfeeding Success.  Like everything else with this pregnancy, I am not making any firm commitments on how things are going to go.  I am working on setting myself up for a successful birthing and breastfeeding, but I am still going to have to give in if my body says, "Hey, this just isn't working right."

I have had to be really careful about certain things lately.  I can't put my hands at certain angles or they get really stiff. My knees are going further back than they normally do and it is causing pain in the knees, hips, and back.  If you see me looking like I am about to topple over it is because my knees and hips aren't locking in place, frustrating, but normal.  It has also meant that walking really hurts and is exhausting!  Some days it is all I can do to get around.  I am very thankful that AJ is so supportive in all of this because he really helps me get around.

I am also really really tired lately.  I am not sleeping well because things hurt, but not sleeping makes them hurt more. It is a fairly vicious cycle, but luckily my OB is really working with me and trying to find something to help me sleep or stay asleep.  I have been listening to a Hypnobabies track for sleep and even made a playlist from Baby Einstein: Lullaby Classics.  These things help to get me asleep, but I can't stay asleep. 

EDS-3 isn't that uncommon.  The statistic I have seen is that 1 in 10,000 to 15,000 people have it.  I just feel like there isn't much known about it.  Also, all the really informative sites seem to be out of the UK.  I wish there was more information, but because it isn't a treatable condition with some very expensive drugs it seems to be mostly ignored.  I guess this post has two purposes : education and to remind me what will probably happen during any future pregnancies.  

I am very thankful for this pregnancy and for the doctors who have been working with me during it.  It is very easy to want to whine and complain about things going on that aren't fair, but these things are part of life.  I am thankful that things have been as easy as they have been because they could have been a lot worse - RA flares and wobbly joints on top of the crazy 20 weeks of severe morning sickness.  Pain I am learning to handle, or at least deal with.  

I know there is a very high likelihood that Bug is going to inherit the hypermobility (hopefully though not to the extreme), and I want to know as much as I can on what to look out for.  I will probably be a little fanatical about having him checked for different parts of it just so we know, especially if he starts having certain symptoms on the main list.

Wednesday, February 23, 2011

What is Our Baby Bug?

It looks like we are in for lots of trains, planes, 
trucks, robots, rockets, dirt and bugs! 

AJ and I are both totally excited about this news!  I think our families are just as excited! It is the first grandson on AJ's side and the first grandbaby on my side.  We have had fun trying to figure out just how nerdy we can make this little boy before he is even here. 

We do have a name picked out.  We are 95% +/- 5% confident about the name (have I mentioned I am married to an engineer?), and yes, this is how I have been telling people.  I am not publishing the name, but we are freely telling people face to face.  As long as they understand we reserve all rights to change it if he gets here and it just isn't who he is.  We are still calling him "Bug" most of the time when we talk about him.  It takes me by surprise when someone else who knows his name uses it.  I have this double-take moment of  "Wait, who is that, oh yeah..." 

I am thankful we gravitated towards more gender neutral things when we were planning!  It did take two anatomy scans to get this information, but we finally got it.  He already has a stubborn little personality.  It is funny when we have to go to get a check up for him.  He wants nothing to do with the doppler or ultrasound wand, and moves as far as possible from it.  At 27ish weeks (I can't keep track of where we are to save my life) he is fairly wiggly.  He has already kicked AJ in the head which cracked me up!  AJ was trying to see if he could hear him because the baby book said at this point we might be able to, but Bug wasn't thrilled about Daddy's big head pushing on his space and he kicked him right in the cheek.

Monday, February 14, 2011

Happy Valentine's Day!

Universal's Islands of Adventure 2/1/07
Thank you for sharing this roller coaster of an adventure with me.  You are the best!  
I love you!

The Bible in 90 Days Challenge - Week 6 - Oh, the Poetry

This picture really struck me as I was looking for something to sum up this week's readings.  It is at the Western Wall in Jerusalem and he is reading the Psalms.  I think it struck a chord with all that is going on in the world, God is in and above it all.  In some weird way his picture reminds me of how many people are doing the same thing all over the world.  That as I am struggling to get through Job and the Psalms, there are other people reading the same things and fighting their own fights with these books.

I have such a hard time reading poetry.  It isn't something I enjoy on any level, and I really try not to do it often.  I think this week has been a real struggle for me because of that.  To get through Job I switch from using my Kindle version of the ESV to Bible Gateway's NLT.  I hate that I had to do that, but I knew if I didn't cut myself that slack then I was much more likely to just give up or just skip it.  Neither is a legitimate option, but I wrestled with both for a few days before I made the switch.  

Then came the Psalms.  Oh, good grief!  150!  Really!!!  I questioned if I was going to make it through them.  Then I decided that I just couldn't make it through them.  So, since we went out of town this weekend, I let myself not be as bothered with them.  I was willfully deciding I didn't want to read the Psalms.  Well, that didn't work out so great for me.  Because I decided I was going to make it through them, but now I was behind - 80 Psalms behind.  

I decided to take small chunks at a time.  It helped, some.  But, as I read more of them I started hearing the lyrics to all kinds of songs in them.  I would read a verse and a song would pop into my head.  That is when it started to become more enjoyable.  I started reading them looking for lyrics to songs I knew.  That helped a bunch more.  I even found the passage that my priest in Gainesville says before every sermon, "Let the words of my mouth and the meditation of my heart be acceptable in your sight, O LORD, my rock and my redeemer." - Psalm 19:14  That was a neat thing to find for me!

I am still technically behind as of right now because I need to read today's Psalms, but I have already spent some time playing catch up this morning.  I am going to do another chunk when I stop for lunch and then later this afternoon.  I just really wanted to get this post done and link up so that I wouldn't forget or Mom's Toolbox close the posting before I got to it.  Getting behind isn't something I am proud of, but I know I do it to myself by not sticking with the commitment I made.  I am very thankful that there is grace in all of this and I do have the ability to catch back up.  I encourage anyone reading along to have faith and stick to this journey!

Monday, February 7, 2011

The Bible in 90 Days Challenge - Week 5 - Not Job!

Wow!  This challenge is going a lot faster than I thought.  I passed the 30 day point this last week, and it is neat to know that I am a third of the way through the Bible.  I am really glad to be out of the genealogy and histories from last week.  Though, this week we started Job.  I know this book serves a purpose, but I really don't like reading it.  I know a big part of that dislike is because it is in poetry form and that is not my favorite reading material.  So, I am going to press through it, but mildly grumble about it until I am done with it (how very Job-like). 

On a happy note - I read Esther!  I LOVE this book!!!!  It is one of my favorites and I was surprised it was in today's readings.  I wasn't really thinking when I saw I was supposed to read the end of Nehemiah into Job, and I just forgot this great book was tucked in there.  I even went back to check the reading list to make sure I was supposed to read it today.  Yay!

Reading Ester today makes me want to watch "One Night with the King" or "VeggieTales - Esther, The Girl Who Became Queen [VHS]" .  I have very happy memories of both these versions.  I am not sure why this book stands out so much to me, but it does.  I think some of it is just her faith to stand up for what is right against all odds, and I really want to emulate that characteristic.  I also love when her uncle gives her this response "And who knows but that you have come to your royal position for such a time as this?” (Esther 4:14b)  It is a long the same lines as Spiderman's "With great power comes great responsibility."  Both of those lines are ones that echo deep in my heart.

I hope this week has been an enjoyable one for those who are keeping up with this challenge, and if you aren't a part of the 90 day challenge I still encourage you to jump in with us!  You can do it! You can find out more on Mom's Toolbox.

But, if you are looking for some other reading plan to dive into a make a habit of check out YouVersion.  My sister-in-law, Ashley, wrote about it here.  I looked at the plans for reading they have and there are a lot to chose from.  So, if you aren't doing a daily plan already, I really encourage you to check YouVersion out and pick a plan.  They have some that are only 30 days, so nothing to crazy intense.  Give it a whirl, you might be surprised what you discover!

Tuesday, February 1, 2011

What's For Dinner Jan 30 - Feb 5, 2010?

I am late getting this done for this week, and I just realized I never posted last week's menu.  I have been distracted by other things, but I have done the menu.  Last week was a wreck, but this week seems to be looking better.  Also, being a couple of days into the menu I have discovered a new recipe that I really liked (AJ liked it, too so it is going into regular rotation) - the lemon basil pork chops.

Last week was also a learning week.  I was hoping to be able to switch from shopping at Publix to shopping at Aldi.  I really like Aldi, but I don't think it is going to work for me right now.  It takes an hour each way to get there, and it means that I spend all day for grocery shopping.  Also, they don't have everything that we need.  I HATE having to hit two different grocery stores in the same week.  I tend to spend way more money when I have to go to two different stores, and that happened last week.  I think Publix has won out as my store of choice for now; it is close (about 10 minutes if I go to the nicer of the two stores that are by my house), I spent half this week that I spent last week (I stocked up on a couple of things - cereal, milk, and almond milk since they were all on sale), and they have the produce and weird canned items that I need. 

Lunch - at BJ's Brewhouse with AJ's best friend
Dinner - leftovers

Lunch - leftovers
Dinner -  lemon basil pork chops, baked sweet potatoes, and salad

 Lunch - lemon basil pork chops, baked sweet potatoes, and salad
Dinner - black beans and corn over rice, and cheesy cornbread muffins

Lunch - black beans and corn over rice, and cheesy cornbread muffins
Dinner -pizza casserole and corn

Lunch - pizza casserole and carrot sticks
Dinner - BBQ chicken, baked bean, and corn

Lunch -  BBQ chicken, baked bean, and corn
Dinner - meeting my best friend

 Lunch -  sandwich and chips

How have your last couple of weeks been?  Have you ever had the battle to figure out where to shop?  What lead you to that decision?  As always, I am linking up to Org Junkie's Meal Plan Monday.