Sunday, February 28, 2010


I was extremely disheartened after my appointment with the surgeon.  I couldn't go longer than about 20 minutes without breaking into tears for a good two days.  I guess it's one thing to know something is wrong with you, but it's another to realize how badly your body is turning on itself.  The thing that was really bothersome was wondering if I had other health issues in addition to EDS.  EDS, the form I have, is not fatal in the least bit.  It won't shorten my lifespan at all, it is easily manageable if you can do the proper workouts and bracing prior to it getting bad.  However, most treatments for other joint disorders are contraindicated for EDS because it erodes our joints and connective tissues quicker. So when the surgeon told me that I had a Degenerative Joint Disease, as well as a possible nerve issue it really freaked me out.  After I finally calmed down after my appt I talked to my EDS support groups.  Both DJD, otherwise known as Osteoarthritis, and Nerve ending issues are symptoms of EDS - not necessarily a separate disorder.  Both are caused by the destruction of our connective tissue.  So even though neither should be taken lightly at least it may not be completely unrelated.

Not being able to use my arms right now really sucks.  I don't even know another way to put it.  It just sucks.  But, it is what it is and being depressed about it isn't going to make it change.  Not saying I'm happy about it, in the least bit.  Nor will I give up fighting for the treatment that I need.  But hopefully my days of just complete despair are over.  I may not have a body that is 100% functional but I can still be a good person and a good mom.  I can still leave a positive mark on this world.  So for now thats what I will concentrate on.  I'm sure I'll still have set back days where I get extremely upset and disheartened, but those days should be the exception rather than the norm.

Wednesday, February 24, 2010

Surgeon Appt.

I had my appt today with the surgeon.  He did the standard history on me, and the treatment and therapies we have already tried.  He also measured the degree radius of my elbow and wrists. I told him about the burning in my two fingers so he asked if we did any nerve tests yet. We told him no, and he did a few basic ones. Then he left the room to look at the MRI scans we brought.  A few moments later he returned and told me that he needed me to get some more X-Rays because he wanted to see the bone damage.  Luckily I was able to do the x-rays right there in his office.  After the x-rays he came back and told us his findings.  My tendons and ligaments are destroyed.  Basically all my connective tissue is destroyed.  However, so is most of my bone.  I have massive bone degeneration.  At this point the only surgical option would be complete and total wrist replacement surgery.  My elbow will also need to be replaced but he thinks they may be able to hold off 4-5 years before replacing it by cleaning it up and removing the damaged spots in a less invasive surgery.  Because of my age he is hesitant to do the surgery.  He thinks there may be other options we haven't exhausted yet.  I asked him if those options would repair my bone or tendons, and he said they wouldn't but they MAY reduce pain, and MAY slightly increase mobility.  I told him I'd rather have the surgery if that was the best chance I had without it.  He said he understood but there would be limitations with wrist replacement.  I wouldn't be able to lift more than 15 lbs, I'd have about 30 degrees of mobility in both directions, and may or may not have side to side movement in my wrists.  I explained that currently I can't even lift a jar of peanut butter, have nearly no mobility in my wrists, and  can't move side to side at all.  He wants to talk to my Rheumatologist first and he wants me to undergo an EMG because he thinks I have nerve damage which is why my fingers burn.  So basically, I have a connective tissue disorder, a bone degeneration disorder, and possibly a nerve disorder.  As of right now the surgery is a no go but I'm really going to push for it.  I understand joint replacement shouldn't be taken lightly, and I'm not.  I can't do anything with my arms right now, to me this seems like a great option.  The pain relief will be immediate with a wrist replacement surgery.  He can't repair my tendons, he said, without this surgery because the bone damage would just cause them to become destroyed again. So basically he told us that this surgery was pretty much my only option for pain and relief as well as mobility - but because of my age he doesn't want to do it.

I go on March 9th for the nerve test, and back to see him on the 11th.

Thursday, February 18, 2010

28 weeks!

Yesterday I had another doctors appt.  It seems like lately all I do is go to the doctors.  Baby Charlie is looking great.  He's still head down and engaged in my pelvis ready to go, but luckily there is no change to my cervix yet.  Doctor Schropp checked me, and verified his head is right there, but my cervix is still closed and thick.  I've been feeling massive amounts of pressure so he wants me to come back in two weeks just to keep an eye on things.  

I had asked him about the painkillers as I've had to take more and more them lately.  He wants to wait to see what the surgeon says before switching me. He's hoping, as I am, that the surgeon will want to do the surgery and I'll get off the pain meds here soon.  

I made a mistake at the beginning of my appointment.  After I was weighed (I'm up to 130 lbs now! That's a 17 lb weight gain thus far) I went to pee in the cup.  For the first time, in all my pregnancies, I forgot the cup.  I just peed in the toilet! Ooops! Eileen, the nurse, assured me it happens all the time.  After that I had to drink that nasty orange syrup which always makes my head spin and then had my blood drawn.  They wanted to do the Rhogam shot, but I refused.  I've never had it done before - both Chris and I are the same blood type (O-) so I see no reason to have the shot.  None of my children will ever have a blood type that isn't O-.

I'm really hoping to keep my weight under 145 lbs.  I delivered Anthony at 151 lbs, Anastasia at 147 lbs, and David at 145 lbs.  With Charlie being so low already I can't imagine I'll make it to my due date, I never have before.  Hopefully he stays put until after the surgery and I've healed a bit. Eight more weeks and they won't stop my labor any longer.  It's insane!

Sunday, February 14, 2010

Baby stuff, stupid accident, and date night

Chris and I have used the envelope budgeting system from Dave Ramsey for many years now.  We love it, it's a great system, and I couldn't imagine not having a cash budget any more.  When Chris sold his CRX we decided to hold onto that cash for the next pay periods budget and to use what we would have in the account to buy the rest of the baby stuff.  Chris swears he tucked the $600 in the back of the envelopes.  Since I can't drive I haven't gone out with the envelopes in many many weeks and haven't touched them since he put the money in there.  Yesterday on the way to our date night I went to organize our envelopes (we have one for each of our gas, food, my spending money, clothes, gifts, misc, and fun) and there was only $120 tucked in the back.  We tore the house up looking for the money and it's no where to be found.  Chris thinks he accidentally pulled it out at Walmart and dropped it when we were there this past weekend.  If thats the case no good Samaritan turned it in, and we aren't holding our breaths.  So money is a little tight this paycheck but we'll make it through.  I shedded a few tears over it but it's over and done with and worrying about it won't make the money come back.

Prior to losing the money I ordered the rest of Charlies stuff - except the steamer I need to steam the placenta.  I ended up ordering 

- 3 babies carriers.  A new camo moby, a reversible Babyhawk with pockets and a toy ring, and an Organic Ergo (Haven't stopped thinking about the Ergo since Kim commented about it).

- Another dozen preemie prefolds.  We have a dozen already, about 6 fitteds, and a few AIO's but David went through the stash in a 1.5 days as a baby so we wanted to flesh it out a bit more.

- 3 newborn covers.  We have two already, but I'm selling my wool stash so I needed more covers to replace my wool.

- 5 small cubbie covers (we have about 10 small covers, but David and Charlie will be sharing and ours are getting worn down)

- 5 Medium Cubbie Covers (same senerio)

- 5 Medium Cubbies.  We have 2 full drawers full of medium diapers, but the cubbies are convenient for babysitters.

- 2 Miracle blankets

- 2 wombies blankets

- the pills for the placenta encapsulation

- and RLR to strip down my diapers

I'm so excited to start getting my packages.  I'll take pictures when they get here.

Last night Chris and I decided to still do our date night since Chris was really eager about it.  So we still went out a bit in low spirits because of the money situation.  We saw "Percy Jackson" which was a flipping ridiculous movie. It was just plain awful, but exactly what we needed to get us out of our funk.  We kind of cracked on it the whole time and by the end we were a bit happier.  Then Chris had made reservations at Sullivans.  I've never been to an upscale restaurant before and I was really nervous about it, but it was amazing.  There was valet parking, they checked your coats at the door, and we were asked if we wanted ice water or bottled water.  They were having a Valentines Day special where both parties could eat for $80 so we did that.  Each of us were able to chose an appetizer, an entree, a side dish, and a dessert.  They also brought out a huge freshly baked loaf of bread that was super delicious.  Both Chris and I got the Ceaser Salad, and then he got the ribeye and I got the NY Strip, he got a baked potato and I had broccoli, and then I had the most amazing chocolate covered strawberries and he had berries and chocolate moose.  The service was amazing and the food was the best I ever had.  It really made our awful evening a little bit better.

Friday, February 12, 2010


The definition of "family" has been weighing very heavily on my mind.  Family is so much more than a relation by blood.  The man who raised me, my "step" father, is more a dad to me than anyone else ever was.  And even though in my teenage angst I may have said differently, he IS my dad - blood relation or not.  His family is more my family than my moms family who is related to me by blood.  When someone asks how many brothers and sisters I have I always respond that I have 4 sisters and a brother, even though two are half siblings, and two are step siblings.  To me they are all equally my brother and sisters.  I've hardly seen my family since I've moved out, and hardly speak to any of them either.  The communication I have with them is always on my part and so are any visits.  But by legal definition they are my family.

And then there is my military family - who I'm closer to than any of my legal family.  The squadron where Chris works is well aware of our health situation and have been extremely supportive about it.  Chris has been able to attend all of my appointments, drive me where I need to go, take Anthony to and from school, and PT on his own since he can't go at designated times.  His First Shirt is even trying to figure out a way to get Anthony to and from school on days where Chris is flying and can't do it.  A few years ago when Chris was deployed over Thanksgiving someone submitted our name for a Thanksgiving care package and the entire dinner was delivered to our house.  The same year someone anonymously gave us a check for some money to help out with Christmas.  After David was born we were given a 338th blanket for him from the Commanders Wife.

And then there are Sandra and Kenny.  I've spoken of them before but I don't think either realizes just how much they mean to me and my family.  Sandra has been my friend since we were first stationed here, nearly 5 years ago.  Our friendship has endured a ridiculous amount of outside drama, hardships, and emotions.  She truly is family.  We can go months without talking or seeing each other, but the second we reconnect it's like no time has passed.  I know that if I needed to I could call her up at 2 A.M. with an issue and she'd be there for me no questions asked.  I hope she knows the feeling is mutual.  Being friends with a female is so difficult for me - I generally don't get along super well with girls.  Women can be very catty, jealous, and passive-aggressive.  There has never been anything like that with Sandra.  We've never fought, or had our feelings hurt unintentionally.  She helped pull me through a really bad situation a few years ago that occurred with mutual friends of ours.  I truly do consider her family, and her children as part of my family as well.

And Kenny...well Kenny is Kenny!  He is my best male friend.  I alternate between calling him my second husband, and my 5th child.  The few things that Chris doesn't enjoy doing with me are the few things that Kenny and I share a common interest in.  Shows like Law and Order, our taste in movies, Mongolian food, Pixel Junk Monsters, and our love for Dr. Pepper.  We pretty much disagree and fight about everything else, especially politics - but it's not actual fighting and at the end of it we are still great friends.  He's a "bachelor" and lives like one so over the years I've taught him some basic kitchen information and other day to day things.  He's another person I know I could call on at 2 in the morning without issue and he'd drop everything to help us out.  And unlike a lot of men I know he is very pro-breastfeeding and very interested in a lot of the other things that Chris and I practice that may make other people blink.

These two people are the ones I can be myself around, who have seen me at my worst, and have been there for me when I needed it.  They are truly my family.

Wednesday, February 10, 2010

I just want to clean!

I hate how a house must first get more messy before it gets cleaner.  Clutter and mess literally make me antsy and anxious.  My house looks like it threw up.  I'm nearly done sorting the kids toys, and then once that is done I need to organize their playroom.  I wanted to do it this weekend, but I'm babysitting some boys on Friday and there is no way I can keep what I have done organized with them over.  So I'll be trying to complete most of it today and finish up tomorrow.  We bought the drawers for Davids clothes, so I'll be transferring those and then washing and organizing Charlies clothes this weekend.  I'm trying to do all of this sans painkillers to give my body a few days to detox, but I'm not sure how much I'll be able to get done without them.

Sunday, February 7, 2010

And nesting has begun

Nesting has completely hit me full force.  I'm a very organized and anal person about cleaning anyway so I've never noticed nesting much with the other kids.  This time it's much more noticeable as I can't physically do as much and it's completely driving me bananas. Unfortunately the pain has increased dramatically over the past week and I've been forced to take my pain medication more often.  This has a horrible side affect of becoming less affective.  I plan to try to grin and bear it for the next few days to allow my body to readjust and then spend the latter part of the week cleaning when I can.  

I'm purging my childrens toys this week.  They have entirely too many, and its becoming a constant struggle to get them to keep them picked up.  I've threatened them with cleaning them out for years but its very difficult to deem what is expendable when we continue to have children that fit the age of the toy.  I've had it though.  Currently they have one massive toy box over flowing, three additional tubs full of toys, two toy shelves, a double sided easel, an art center, and a very abused kitchen set.  It's been a week now of asking them to clean up their toys, and them playing around and not doing it. So we are cutting the toys down to ONE toy box, the easel, and art center.  Everything else, including the kitchen set, is going to the consignment store, goodwill, or a yard sale.  It's not as tough as I thought to get rid of so much but it does upset me to see that much money go down the drain - or the state of certain toys that were not taken care of properly.  This is the reason why we request no birthday presents when we have a party.  My kids do not need more junk if they can't care for the stuff they currently have.

I've also been reorganizing my nine drawers of cloth diapers, and noting what I need to buy to replace some of the more used ones.  I love cloth diaper shopping and can't wait to buy some more.  I especially love my newborn/preemie fluff - it's amazing how tiny it is and that my baby will be here soon and be that tiny!

Chris sold his beloved CRX today and we are going to use that money to buy a few of the remaining items we need.  The diapers will come in spurts as we go along, but before Charlie is here we need a few more items.  I haven't had to buy much for any of our kids, and I really do enjoy getting a few items - it makes the pregnancy seem so much more real.  

Tomorrow I have my next (and hopefully last for a while) MRI.  This one is for my wrists.  I'm hoping that on the 24th the surgeon will want to move forward with the surgery as soon as possible.  Not being able to use my hands and right arm is driving me up the wall.  I want to be able to snuggle and love on Charlie after he is born, and right now I'm not sure how possible that will be.

Tuesday, February 2, 2010

Our new-to-us vehicle

Chris had off yesterday since he had to work on Saturday.  I figured I would get to sleep in since I haven't slept much lately.  No such luck.  After Chris got back from taking Anthony to school he woke me up and said that he found a car online and wanted us to go to the dealership to look at it.  So I got up, helped feed the two younger ones and get them ready, and then off to the dealership we went.  We basically just wanted a van that could fit everyone into it.  This is our "interim" van - one that we will drive until we have the money saved up for a new one with the bells and whistles I want.  There were two on the lot in our price range, but the slightly cheaper one didn't have power doors and with my arms that was a necessity.  The other was a blue 2003 Honda Odyssey.  There was some obvious cosmetic damage, a few dents in the hood, a few stains on the seats, but nothing terribly bad.  Chris noticed it needed new tires, the windshield had a crack in it, and as it has 92K miles on it that it would be needing a new timing belt soon.  We test drove it, and while it will take some getting used to as it drives no where near as smooth as our Trailblazer, the drive wasn't bad.  

Then it came time to negotiate.  My husband is horrible at negotiating.  He just doesn't do it!  The last two cars we've bought he's just paid full price no questions asked.  I told him that this wasn't my dream car and I had no issues walking away from it if certain conditions weren't met.  I was doing fine negotiating on my own, but Chris messed it up a few times by offering a price too high, or allowing the dealer to know we had more room to go.  In the end we made "okay", not as a good as I would have liked but better than we have in the past.  All the tires are getting replaced, the timing belt and water pump systems are being replaced, and so is the windshield.  We take the van back in on Thursday to have it all repaired.