"Oh, let me tell you about YOUR disability..."

Its been a while since I've blogged, but it's something I'm desperate to get back to.  This post has been a while in the making.

I had to bite the bullet a few months ago and my husband and I had myself declared "handicapped - permanently" through the state so I could receive a placard for the car while he was deployed.  It was a very sad day for me.  It's a struggle, constantly, between letting people know about Ehlers-Danlos Syndrome and how it affects me - and not letting it rule or ruin my life.

May was EDS awareness month.  I find this to be especially important as I would not have been diagnosed if it wasn't for a passing conversation with a complete stranger.  It's so important to me that more people learn about EDS.  With this comes...more opinions, though, on how *I* should be living *my* life with this syndrome.

Whenever you are disabled, no matter the cause or severity, everyone seems to have an opinion on it.  "Oh, you're TOO disabled to be doing that!", "You don't LOOK disabled", "IF you were disabled you surely couldn't do THAT!", "Are you sure you are disabled?", "Are you sure you should be doing that?", "I think you are faking", "You don't need to be taking THOSE medications", "You can't be in that much pain, surely, and still be moving!", "I think you are a drug seeker", "*I* would never take those meds, even if I was in pain", ect ect ect.

Everything I do is now questioned, scrutinized, judged, and ridiculed.  I've dealt with it from people who don't know me well, Chris's squadron mates, and most recently people I confided in and considered good friends of mine.  It's tough, but it shows me who I can count on to be there for me and who I can't.  It also shows me how much further we have to go in educating the general public on Chronic Pain conditions and EDS.

Yes, my joints dislocate, my tendons and my ligaments tear, my muscles shred, and when the damage is severe enough my bones begin to degrade.  Yes, I get up every day and do what any hard working mom of 5 would do.  Would it be easier to lay in bed and cry? Of course, and there are days where mentally I AM still in bed, curled in a ball, and crying my heart out.  Crying because of the pain, and crying because it's just not fair that I have this.  But physically, I get up and take care of business.  When it becomes more tough to push past the pain I meet with doctors and have procedures done to help.  Thats why I had my wrists fused.  I couldn't push past the pain any longer, and by that time my wrists were permanently dislocated, shredded, and separating from my arm.  I think I did a damn good job still parenting with broken wrists.

I feel that disabled people have to go ABOVE and BEYOND what any able bodied person does, and still we aren't good enough.  In my case, it's with my parenting and my ability to care for my family.

If I was an able bodied mom of 5, whose husband is deployed, I could make a frozen pizza for dinner, take a nap in the middle of the afternoon, or feel so tired by the end of the day that bed time comes early and everyone would completely understand.

When you are a disabled mom you must ALWAYS cook meals from scratch, maintain a meticulous house, play non stop with your children, have endless amounts of patience, and never ever be tired or complain.  If you fail, or have a bad day, you will be accused of being too disabled to physically care for your children.

If you decide to have a large family when you have a disability, well you are just in for it!  Even if you parent in such a style that you are constantly attached to, engaged with, or responding to one of your kids.  You mine as well be lumped in with abusers and neglectful parents!

I REFUSE to let EDS take away my dreams.  I was born with it.  A lot of people are born with it.  Experts believe about 1 in 800 people have some form and 95% of people will never be accurately diagnosed.  To me it's like yelling at a woman with RA for having kids, RA can be passed down too.  No family is perfectly healthy. Of course I hope my kids don't have EDS, but given the alternative (them not being born) I don't think they'd rather that have happened. Plus, having a parent who is AWARE sets them up for such a much better future dealing with it than I had.

Even my medication and how I handle my disability is scrutinized, judged, debated....

My journey into pain medication began almost 4 years ago when the pain became unbearable.  After the birth of David within 6 weeks I went from okay with minor aches and pains here and there, to unable to walk or use my arms from severe pain.  My elbow began dislocating, and eventually after a few weeks of dislocating over 100 times per day I could no longer pop it back into place.  It's still dislocated 4 years later.   The geneticist said it's one of the worst hes seen.  There is no option for it but a replacement which I can't get until i'm 35.  My legs stopped working and after PT and OT 3 times a week for 8 months I regained them but popped my achilles tendon in the process.  My wrists were severely damaged from dislocations, and required the fusions to fix.  During this process I was prescribed percocet, but no one was managing my pain meds.  I began taking more and more just to get the same pain relief.  Once I was taking 25mg at one time I knew something had to change.  My doctor suggested a pain clinic and I've been there ever since.  I've only raised my pain meds twice in the past 3 years which is pretty rare and slow going.  I'm very careful to not take too many because of tolerance issues.

I'm currently on dilaudid and morphine.  This has caused quite the stir.  Quite the opinions.  Until someone can experience the pain I'm in they can't say what they really would or would not do.  Compared to a lot of EDSers I'm on NOTHING.  One lady is 3 years older than me and having a pain pump surgically placed inside of her.  Others are on fentanyl pops, morphine patches, oxy, and dilaudid at the same time.  I would never judge any of those people.  Pain is so mentally and physically exhausting.  We do what we have to do to function.  I refuse some of the harsher pain managments, like methadone, because of nursing and wanting more kids.  I'm very carefully monitored by a huge team of doctors.

At the end of the day, it's MY life, MY choice, MY disability.  I don't mind sharing about it, but keep your opinions on how I should be living or managing it to yourself.

I got my Mixer!

For years I have been lusting after a KitchenAid Mixer. I tried, for a long time, to be as self sufficient as possible. Then I was diagnosed with Ehlers-Danlos Syndrome and I had to stop doing a lot of self reliant activities - such as bread making. I loved making bread, and I was really darn good at it too! I loved making something from scratch, kneading life into it, and feeding it to my family. My arms are useless for kneading dough now, but I refused to buy a bread maker. It felt like cheating to me.

My friend Elaine brought over her KitchenAid a while back and made pizza dough in it. It was so similar to hand making it except the KitchenAid kneaded for her. I lusted after it even harder than before. With a family as large as mine, though, a 4.5 qt Mixer was not going to suffice. I needed at least a 6 qt, and a 7 qt would be even nicer. The 7 qts are so hard to come by so I settled for a 6 qt and today my lovely husband went out with the two younger kids and returned with this:

Ain't she beautiful? I've named her Betsy. All the best tools in my house have names. He bought me a few extra attachments too, and right now if you buy a mixer you can get the Ice Cream maker attachment for free! So that should be coming to me in a few weeks time!

I am so excited to make bread again and am already planning on making me tortillas tomorrow. I shall update with pictures, recipes, and results! I'm so excited!

And since he left with the two younger ones I managed to have a few hours to clean uninterrupted. My room is well on it's way to being complete!

Weaning off my meds

I watched a Dr. Phil episode this past week that made me super nervous. It showed little newborns going through withdrawal. I got so extremely upset I called my pain clinic doctor immediately and set up an appointment. He had me go in on Friday, and we talked. He told me at the dosage I'm at he's never seen an infant go through withdrawal but if I felt nervous we could attempt to wean me off the medication. I told him I wanted to try - I HAD to try - before we got pregnant again. For the sake of the baby I had to give it a try. So I'm now in the process of coming off my pain meds - he said it would take a few months to wean off which is fine as I suspect it will be a few months before I get pregnant again. I was taking 2 mg of dilaudid 4 times a day with 2 break through pills. I'm now taking 3 pills a day with 2 break throughs. Next month I'll go down to 2 pills a day with 2 break throughs, ect. I went out and bought ACE bandages to bind my elbow and ankle up to try to minimize pain. Even going down one pill has brought the pain back immensely. Luckily, I have one completely pain free arm to work with so thats been helpful.

I'm also, seriously, going to cut out a lot of the pop. It's my only vice. I don't smoke - never have, I don't drink AT ALL, I don't do recreational drugs, the only thing I have when I'm stressed is pop. It's impeding my weight loss though, I've been stuck at 120 lbs for months now. So I am cutting out the pop during the week and only drinking it on the weekend. Seems like not a big step -but it's like a smoker saying they are only going to smoke on the weekends. An addiction is an addiction and I am addicted to pop. I'm also going to be waking up at 5:45 in the morning to get an hour work out in before waking Anthony up to get ready for school. I'm going to seriously hold myself accountable to this - so stay tuned for my daily blog posts about how I'm doing!

Day out with the girls, and day out with my little girl

Last Wednesday my girlfriends and I had one of our frequent Girls Night Out. We try to do this a few times a month to get away and have adult conversation, and an uninterrupted meal. This time was a more sullen occasion as we were trying to cheer a friend up who, sadly, had a miscarriage. We went out on Wednesday night because she was having her D&C on Friday and I really wanted to take her out prior to it. So we all headed out to Chili's. Chili's is my ultimate favorite restaurant and normally we do a semi-sit down restaurant but this time we wanted a full on sit down.

We stayed an awful long time. One of my friends said we were getting death glares from the wait staff, which made no sense as the place was half empty. Charlie wasn't the most happy baby in the world, but he does pretty well when we go out. All in all it was awesome - until the very end. I tapped my knee on the pole under the table and managed to severely dislocate my knee cap. I looked down at my knee when this happened and my knee cap was rotated to the back of my leg. I have never felt that TYPE of pain. I sort of threw Charlie at my friend and started trying to massage my knee back. My three friends didn't really know what was going on, which is what I wanted. I really don't like my health being upfront and center. The pain was almost an outer body experience. I could feel it, but it wasn't like it was my pain. I actually felt as if I was going to pass out. My head started swimming and my vision started tunneling. It took about 5 minutes to finish massaging it back into place and we left shortly after that. It was absolutely nauseating. My knee is not a joint I dislocate often, so it hurts a lot more when it happens.


Today I took Anastasia out to buy my friend a gift, and for lunch. My friends and I are doing another Girls Night Out this Friday at Paneras so we can do our $5 gift exchange. I was to buy a gift for my friend who miscarried. Originally when I got her name she was still pregnant so I was going to buy her a baby gift, but that would be quite tacky to do now so I went out and got her something else. Since we only had a $5 gift limit I went to the Dollar Tree and bought her stuff to make a bubble bath basket. I bought a basket, a loofah, bubble bath, a vanilla candle, and a book. I let Anastasia buy herself something too. She kept picking up toys and putting them back and finally decided on a blue ball. Thats my daughter! I let her get herself a white teddy bear with a pink bow too which she named "Soph". We now have dolls/toys named Sophia, Sophie, and Soph. Afterwards I took her to lunch at Wheatfields. I left Charlie at home because he was napping, and she was so thrilled to just be the two of us. I really enjoyed just having the two of us. We colored together and shared our food, and I let her get the biggest piece of cake I've ever seen. She hardly ate any and asked to bring it home to share with her brothers. So sweet :) I'm glad I was able to take her out. I'm definitely going to do it more often. She feels lost a lot of the time being the only girl with three brothers - I think it's important that she spend one on one time with me.

And life continues!

I feel as if I'm becoming myself again. For the past two years plus I have felt who I am slip away. I have watched my abilities dwindle. I lost the ability to do many things I love or enjoy doing. Cooking, baking, bread making, cross-stitching, cleaning, picking up my children, ect were all impossible tasks or made to be very painful and difficult. I knew having a wrist fusion would forever change my life, but everyone in the EDS community said it would be something positive and that I wouldn't regret it. They were absolutely correct.

I may have a large, noticeable scar. I may have lost the ability to bend my wrists, permanently. But I have gained so much back. Today I was able to open a pill bottle, with my hands. Pill bottles are the bane of my existence, especially as I know take quite a few pills a day. I normally am stuck unless Chris is home, or I've placed my pills in an easy open bottle. Today I filled my diluadid prescription and was able to open it myself!

Every day now I am able to do dishes, fold laundry, scrub down the kitchen. I can vacuum a room at a time. I can pick up my son without issue. I'm beginning to cook again, and hope to be back to baking soon. The only pain I have now is in my elbow and one of my ankles. But my head isn't consumed by it anymore. I used to feel so useless when I couldn't do anything, and now I'm starting to feel like myself again.

If there are any EDSers reading this, who struggle with whether or not a fusion is the right choice - in my experience it really really is. You may lose some ability, but you gain back so much more.

One brace off!

On Monday I went back to the surgeon and I got the all clear to remove the brace from my left arm. It's been nearly 6 months since I've had surgery on that hand and it feels so odd to have nothing on it!  I still haven't regained full feeling in my hand, and he said it make take a year or longer to do so.  When something hits the metal plate the shivers it causes are flipping nauseating. It's also weird, my metal plate gets cold!  It will feel 2 or 3 degrees cooler than the rest of my hand.  This will be a fun winter.

Anthony restarts public school on the 6th. I am very apprehensive but we've talked it through and this is what he wants.  We'll continue homeschool in addition to his public school and keep a close eye on the issues that made us pull him in the first place.

On Christmas Santa is going to "forget" a major gift.  Chris's mom (The kids "Gigi") is coming out to visit.  Santa is supposed to bring her but will forget so Chris will have to go meet him at the airport to retrieve her.  I'm sure the kids will have a blast.   I'm honestly a bit nervous, well a lot nervous, but the last visit went well so hopefully this one does too.  She is making an honest effort to not overstep her boundaries again, and she is doing very well.  I do have to give her credit there.  I'm not sure our relationship will ever be uncomplicated again, some things you just can't erase or forget about, but I think we can have a good relationship.  I first need to learn to forgive, something that doesn't come easily to me, and to retrust - something I've never been able to do.  But for my kids sake, Chris's sake, and her sake I am trying.  Where I am now is not where I was then - so that stress is alleviated. I'm not easily pushed around, and I'm much more comfortable in my style of parenting.  I think she also knows what is at stake as we've told her that if what happens last time happens again there will be no more chances. I can't put my children through that.  I don't think it will come to that.  At this time we seem to be doing well with each other.  I'm not sure if she still feels the same way about me that she used to, and that may be part of the problem I'm having.  I'm very easy to trust people, but when you break my trust I am unable to ever trust you again.  I did trust her a lot, and that trust was broken. I'm trying, for the first time, to retrust her and it's not easy.  In the back of my mind there is always that, "does she feel the same way?" thought.  So right now I'm having a lot of anxiety - probably unnecessarily - towards her visit that I'm working through.  Thank goodness for therapy!

On an unrelated (and I mean that!) I am planning on switching to a standard book style blog in addition to this one.  I use this one as a way to "update" those I care about and those who care about me - but I am currently trying to come to term with things from my childhood/teenage years and can't do that publicly. So I may not post as much, or rather, my posts will continue to be sporadic as I try to work through what I need to work through in order to be a happier person.

hmmm

I totally had a new post on here but I don't see it!  Thats a tad frustrating.

Not much is really going on at the moment - or not much I care to share with the world anyway.  Some things are just better left to myself.  I'm preparing for wrist fusion number 2.  Some people think that since I know what to expect it shouldn't be so difficult.  It's the exact opposite.  The recovery has been awful! I'm not looking forward to going through that again.  I had never experienced that amount or type of pain before. I guess having your bones scraped out, broken, turned around, and then having a large metal plate with 6 screws screwed into your hand and arm is quite painful and has a long recovery.  The post swelling was absolutely awful, and I was sure my skin was going to burst open.  I guess that's a plus to having EDS, our skin stretches well to accommodate things like that.  I had my pre-op physical yesterday and the EKG came back abnormal.  The doctor thinks it was a fluke and I shouldn't worry but if the other guy he sent it to disagrees then surgery is off.  EDS can cause heart issues so of course I'm worried, but my Echo 6 months ago came back perfectly fine, so I'm holding onto that right now as a sign that perhaps this was a fluke.

My nerves are getting the better of me.  When I get nervous I tend to ramble on and on and I get a little frantic.  I noticed yesterday I'm beginning to ramble (and you can tell in this post) and I'm trying to channel all of that into something constructive, like cleaning or playing with the kids, or even exercising.

The Bear is doing well.  He's beginning to thin out some.  He has a neck now!  He's rolling all over and trying to crawl without much success.  He has also begun sitting up for about 30 seconds at a time.  Each milestone with him is so bittersweet.  He's not our last child but he is one of the last.  We've spent so many years just having babies and now that our family is ALMOST complete we are cherishing each moment a little more than we have in the past.

Anastasia is doing awesome in soccer.  She loves playing!  She is learning more and more each day and is always so eager to help with the baby or learn something. We really do hope that one day we'll give her a sister but if she ends up being my only girl I'll be so grateful that I have her.  She really is an amazing daughter.

David is all eyes.  That boy is a charmer! He is so masculine looking already too.  Anthony and Charlie are both pretty boys, but David... he's as cute as a button but there is no denying he is a boy.  He has never been called a "her" like the other two have.  He acts like a total macho man too.  He loves to build guns (ugh!) and shoot everyone, he loves to climb, and boss the dog around, and beat up his sister.  But at the end of the day he's a total mama's boy.  He's always up for a cuddle and snuggle where he'll wrap his hands in my hair and lay his head on my shoulder.  He is truly one of those kids who is either making you want to rip your hair out in frustration or you just want to love and kiss on him - there is no in between with that child.

Anthony is going through a lot at the moment and I don't feel comfortable posting it for the world to see.  He's an amazingly gifted child and astounds me daily with the knowledge he accrues on his own.  Homeschooling is going... well it has it's moments.  We are going quite relaxed with him and teaching him fundamentals and then letting him guide his own way.  Trying to be too regimented with him was causing him to refuse to work.  By giving him the ideas and letting him process it his own way he is retaining so more more and working so much nicer.  He wants to try public school out again next year, but we are hesitant.  However, we told him it was always his decision, so we may be working towards that goal around Christmas to prepare him to reenter public school next fall.

Switched medications

I've been planning a long overdue "Back to School" post, and when I feel the energy to do so I will post it.  It will be a picture filled post of our back to school stuff.

I finally was seen at the pain clinic last week.  They've switched me to dilaudid 4 times a day with 2 additional pills for break through pain.  It's reducing the overall pain pretty well but the acute pain is still pretty bad.  The Plaquenil is beginning to work and my swelling in my elbow is going down for the first time in 2 years.  This is great, however with the swelling reduced my bones are now rubbing together all the time - this is the most disgusting feeling.  So right now I'm trying to adjust to the new meds which make me very sleepy.

Over a month out

It's been over a month since my surgery, and I never thought I'd still be so far behind in recovery.  I can just about straighten all of my fingers, but can still not make a fist.  My arm is still swollen, and my knuckles are still bruised.  There is still a good bit of pain in my hand and wrist area too.  Typing is still painful so I keep it to a minimum.  I'm not looking forward to having my other wrist done.

Just a quick update

It's very difficult typing one handed, so this may not be the best post.

Wednesday, the 23rd, I woke up super nervous.  I took a shower while the rest of my family ate super delicious, yummy bacon and eggs.  I was hungry, but had to fast for the surgery, and I was too nervous to eat anyway.  Pants, our babysitter, arrived with his monster of a dog around 9:15.  Jovi loved his dog and followed him around the whole time.  It was hilarious to see our puppy following a huge mastiff around.  I sat down before we left, and per instructions, scrubbed my arm and hand with soap for 15 minutes. We left the house around 10 and ran to Bakers really quick to pick up a pacifier for Charlie.  The plan being Chris trying to pacify him as long as possible before giving him a bottle.  We arrived at the hospital right around 11 and checked in.  Shortly after we were taken back to the pre-op room and I nursed Charlie one last time.  They gave me this ridiculous Bear Paws gown that actually hooks up to a heating system during surgery.  It was very bulky and uncomfortable.  They started my IV with antibiotics and the anesthesiologist came back in to talk to me.  Same lady as before.  Very nice.  She could see how nervous I was and gave me a mild sedative to calm down.  She also assured me that being awake unknowingly is very rare - that was honestly one of my biggest fears. 

A short while later I felt extremely itchy and jittery - like I needed to run around.  They came to check on me and told me my whole body was red.  I was having a negative reaction to the antibiotics called "red man syndrome".  Its not quite an allergic reaction - its just a sensitivity.  They told me next time I'd need the antibiotics much slower, and then they gave me some benadryl.  I'm not ure what was causing it but my entire body became restless.  I started trying to curly my body into a very tight ball and then I'd release and stretch out as far as I could.  This went on for a little while.  Then my surgeon arrived, a few minutes late, at 1:15 and told them to take me to the OR.  They wheeled me to the OR, the nurse anesthetist asked me a question and the next thing I remember is being shaken and a nurse telling me to wake up.  I was in recovery, a huge room filled with patients in the first stage of recovery.  My arm was on fire and I remember I started crying.  The lady next to me had had abdominal surgery and was crying too.  She asked me if I had abdominal surgery too and I was in so much pain I could only shake my head.  The nurse maxed me out on fentanyl  and dilaudid but neither did anything.  My body had built up such a tolerance to pain meds.  She told me if she had taken that much she would have stopped breathing.  Around 4:30 they brought me to my private recovery room with Chris and Charlie.  Chris said Charlie only had one bottle and he had fought him for an hour to take it!  Best news!

My stay was very painful.  We stayed overnight and they wanted us to stay another night but we didn't have a babysitter the second night.  Next time we will plan two nights.  I was originally given 1 mg of morphine every 30 minutes but then they put me on a pump that gave me 3.0 mg/8 min.  They finally upped me to 3.5/8 min.

Recovery is going okay, both mentally and physically.  I have my good days and my bad ones.

I have been uploading all of my photos to this public album.

http://www.facebook.com/profile.php?id=653616891#!/album.php?aid=188498&id=653616891

Really Nervous

Today is the first time I've let my nerves get the best of me.  I'm extremely nervous over the surgery.  I look at Charlie and it pains me that I'll be separated from him for hours tomorrow.  I will be asleep and unaware of time passing, but Charlie will not.  He's not going to understand why mommy isn't there for him.  My other kids aren't going to understand why they can't really be around me for the next week as I lay in bed concentrating on not moving my arm at all.  And gosh forbid something goes wrong - none of my children are old enough to really have memories of me.  And then I'm nervous about relearning how to do everything as I adjust to a life without a wrist.  And as petty as it sounds, seeing a very large scar on the back of my arm for the rest of my life - signaling to the world that something has happened to me and inciting questioning stares or a request for an explanation.  I broke down a little while ago holding Charlie and apologizing to him for tomorrow.  Hopefully he does well with Chris and Chris does well with him.  Hopefully he doesn't have issues with the bottle/pacifier and I hope beyond hope he doesn't prefer them to nursing.  I hope I get through surgery without any mishaps, and recovery goes smoothly.  I hope my children understand why mommy is in bed unable to cuddle them or play with them. Tonight is the last night of my life ever being able to bend my wrist again - its something I once took for granted and now am facing a lifetime of never doing it again.

Pics

The quality is quite low because they are cell phone pictures, but this is the way my wrist looks now.  In two days time it will never look this way again.  It will no longer be bent to the side, as it won't be able to bend at all, and there will be a massive scar down the back of my arm.  Ignore the laundry pile, Chris is a bit behind in the folding and it's one of the few chores I can no longer do.

Pre surgery jitters!

In less than 48 hours my left wrist will be permanently fused, leaving me with a forearm and fingers, but also with no more pain.  I'm having conflicting thoughts about this.  I'm excited to no longer be in pain, but nervous to lose the last bit of function in my wrist.  My wrist has gotten even worse over the past few weeks.  Instead of just being bent back, a few weeks ago I popped a bone in my forearm and now my wrist is cocked to the left as well.  Tonight I will take pictures and post them, mainly I would like pictures of the way my wrist looks now because after surgery I will have a sizeable scar running down the back of my arm.  Never again will my wrist look the way it does now, and I am going to miss that. I will not be able to post the first week of recovery as I won't be allowed to use my fingers at all.  The plan is to stay in bed with Charlie and my LMN movies I have on the DVR - if Chris will be kind enough to put the DVR in the bedroom.  If we can find the battery charger we'll upload pictures of everything next week after the first week of recovery.

A whole bunch of stuff...

It seems as though when one thing in your life is thrown out of balance everything else seems to follow.  I've been meaning to compose my thoughts here, but I'm having a hard time thinking clearly with everything going on.  I apologize if this post comes off as harried.

Surgery is set and approaching quickly.  As the 23rd nears I'm becoming more and more nervous.  This isn't a minor surgery, it's completely life altering.  Every day that passes now is the last day of the week that I'll have the ability to bend my left wrist.  With that said, surgery couldn't come soon enough.  I've had to increase my pain killers by quite a few just to get through the day without being a total mess from pain.  

I've been battling with the hospital I'm having my surgery at over my rights to breastfeed following surgery.  They told me that I couldn't nurse for 24 hours following surgery.  I know this is false, and old school thinking.  New studies show that as soon as mom is awake and alert enough to nurse she can.  I explained this to the Robin, the scheduler at my surgeons office and she told me I needed to be "realistic" and that "nursing isn't that important".  She also told me that in 20 years of working she's never come "this close" to losing it on a patient before.  Finally she contacted a liaison at the hospital I'm having the surgery at for me to discuss this with.  Unfortunately, Sue is quite similar to Robin and I continued to get an ear full.  I told Sue that I'd be more than happy to have my IBCLC, Debbie, contact her.  She said that was fine, I'm assuming in an attempt to get me off the phone, and hung up.  Debbie called her and Sue refused to speak with her because of HIPPA!  So I called Sue back and this sparked a few more phone calls between us hashing this out.  At one point she told me they'd cancel my surgery if I tried to nurse Charlie.  I told her I wanted documented evidence that this was harmful to my son, and if it was for liability I would sign a waiver.  I said I had no issues coming up there in person with the studies in hand, my IBCLC, and a representative from the LLL.  Sue promised to get back to me.  A week and half later I still hadn't heard from her and she wasn't returning my phone calls so Debbie finally got her on the phone and asked Sue to set up a meeting between us and the anesthesiologist.  At first Sue said I wouldn't be able to speak to the anesthesiologist until the day of my surgery, but at Debbies urging she agreed to set up an appt.  This morning I had my meeting with them.  I pre-registered for the surgery, they showed me around, and then they brought in the anesthesiologist that is going to be there for my surgery.  She was awesome, and assured me that I would be able to nurse as soon as I wanted to.  There was no issues at all.  I felt bad that Debbie accompanied me to the appt, but am very happy with the outcome.  This was my first real adventure in Lactivism and certainly gave me a taste of what I'll do some day as an IBCLC.

So as all this approaches we also find out that David has a pretty severe hernia and is going in for surgery himself on the 9th.  Charlie is still having breathing issues.  And as a family we are dealing with some personal issues concerning one of our children that is taking an extreme emotional toll on us.  I'm hoping that the Karmic universe gives us a break here soon.

Saw the Surgeon Again

I saw my surgeon again on Friday.  After reading the report from the rheum. he asked me if we wanted to set a date up for surgery.  My left wrist is the one that is bothering me the most, so we are fusing that wrist first.  Surgery is set for June 23rd.  I'll go in at 11 am, and the surgery is scheduled for 1 pm.  They booked the OR for 2 hours, and said I should be back in recovery with Chris and Charlie by 4 pm.  Right now we are fighting for the right to breastfeed after surgery.  I know Charlie will need a bottle while I'm in the surgery, which frightens me to no end, but the doctors are telling me they don't want me nursing for 24 hours after surgery.  That isn't going to happen.  All the literature shows that a nursing mom can nurse as soon as she is alert.  There is no danger to baby except the possibility of passing out and smothering the child - so it should never be done without supervision.  I tried to explain this to them, but they weren't listening and the scheduling nurse was very condescending.  I told her I'd contact my IBCLC if that would help, and she set me up with a liaison at the hospital where the surgery would be.  The hospital agreed to allow Chris and Charlie to room with me, so that was one hurdle that was cleared.  On Tuesday my IBCLC is contacting the hospital on my behalf and working it out with anesthesiologist, not only for me but to educate him for future surgeries on lactating women.  It will be quite a feat to nurse, but I will let nothing deter me.  For the first week after the surgery I can't move my arm at all, I can't even bend my fingers.  It will require a lot of discipline on my part, and I think I'll spend most of it in bed with Charlie.  For that week I'll be in a heavy gauze wrapping, and a half cast.  After one week I'll be put in a hard cast up to my elbow for 6 weeks, and then I will be put in a removable brace for 6 more weeks.  The fusion will be complete after 9-12 months at which point I'll have the metal bracing removed.  A few months after my left wrist is operated on we'll do the same to the right wrist. My IBCLC is coming out to teach me to nurse one armed, and bringing me a special pillow to assist me.  I really do love her.  She's been there since I had Anastasia.  She was shocked when she got the message that I needed help, she knew I didn't need latching or the normal type help.  I'm constantly keeping her on her feet!

Now that surgery is scheduled the reality of it is hitting me.  This just plain sucks.  My arm is going to look deformed and scarred up.  I will never move my wrist again.  I will have to relearn how to live and function. Three more weeks is all I have with mobility in my wrist and unscarred arms.

Quick Update

Juggling 4 kids and a household is proving to take up a lot of my time, who would have thunk it?  So while Charlie sleeps on me, I'll post a quick update - and then it's off to bed for me!

Charlie is doing really well.  He is such an easy going baby - knock on wood.  He has his cranky moments, but for the most part he sleeps or eats most of the day.  He prefers sleeping on me to sleeping anywhere else, and I'm perfectly okay with that.  I hate putting my babies down in the early months.  It's especially bad with Charlie because I know we are nearing an end on having kids, so it makes every moment even more precious.  We are definitely having at least 1 more, maybe 2 children but I am starting to feel closer to being content.  At Charlie's 2 week check up he weighed in at 7 lbs 11 oz! Thats 1 lb 5.5 oz gain from birth!  I think for the first time I'm making cream instead of skim milk - and I credit my placenta capsules to that.

I have had a few moody, hormonal days but for the most part I feel pretty normal.  It may or may not be the placenta capsules, but whatever it is I'm happy - for now.  I was really worried about PPD with this pregnancy because I've battled depression for nearly a decade, and this pregnancy was pretty bad.  So far I'm doing well and I hope that keeps up.  I haven't been getting nearly enough sleep, which concerns me, but so far it's not completely messing my head up.

Chris and I have cheated a bit with the Primal diet, but I think we've figured out a decent balance, for now.  Grains are the worst food for me, especially, so we are trying to hardcore refrain from those.  I can tell when I eat grains how badly it is affecting me, within a few hours my entire body aches.  It makes me a bit angry that grains have been hailed as being so healthy, and the more I look into it the more I realize that this wasn't always believed to be true - it's just politics that make it appear to be true.  Maybe had I known I could have saved my wrists.  I can now feed myself with my right arm, wash my own hair, touch my face, touch the back of my head, ect... with my right arm.  All from eliminating grains.

We saw the surgeon again last week.  He is so impressed by the changes in my elbow that he no longer wants to do surgery on it - for now.  This is great news!  He still wants to go ahead with the fusion, however he wants me to meet with the rheumatologist to ensure that there is absolutely nothing else that can be done first.  I see him Thursday, and I see my surgeon again next Friday.  In the meantime he had custom made braces fitted for my hands to help the pain, and to simulate what a fusion will be like.

Anthony's last day of school is Thursday, and I couldn't be happier.  Every day I hear him tell me about the candy he was given and the movies he watched - it totally pisses me off.  We are both eager to begin homeschooling.  We are starting on the 31st - Chris and I are planning to switch to year round school and give days/weeks off where WE see fit. 


Our puppy, Jovi, is just over 4 weeks old now.  I can't wait to bring him home.  He is looking more like a Golden than a Huskie, and Chris is thrilled.  He wanted more Golden features.  He's so tiny still but he's looking more and more like a puppy.  It's absolutely amazing how quickly he's changed.

The next post, I promise, will contain some updated pictures of everyone.  Hopefully it won't be weeks before that happens.

Surgeon Appt. Take 2

I'll keep it short and sweet this time.  Wrist replacement isn't an option because of my age.  There is a good possibility, he said, that with a replacement it would break or not take and then we'd have larger issues at hand.  Drug therapy isn't an option at this point either, obviously.  Instead what we are looking at is a wrist fusion for both hands, and an elbow cleanup.  I have heard of wrist fusions many times over on the EDS support boards, so this wasn't huge news to me.  He won't do any surgery until after Charlie is born, and he won't do two surgeries at once.  So I'm looking at the next 8 months or so for the first round of surgeries.  First he'll clean up my elbow, about 2-4 weeks after I deliver.  He will remove the membrane, the radial bones, and repair what can be repaired.  He said this will decrease or eliminate pain, as for mobility it's up in the air.  Eventually it will need an elbow replacement but right now the pros of doing that don't outweigh the cons.  The healing is 1 week in a splint and 2 weeks in a sling.  Once I've strengthened that up he'll do a wrist fusion on one of my hands.  This involves a large incision down the back of my hand and arm and then he'll screw a metal plate to fuse my wrist.  The healing for this surgery is 6 weeks in a hard cast up to my elbow, and then 6 more weeks in a brace. A few months after that surgery he'll do the other wrist.  1 year after the fusion takes place he'll go back in and remove the metal plates, at which point my wrist bones will have fused into one hard bone.  This will eliminate the need to repair my tendons as I won't need them there anymore, and it will create a very strong bone in my wrist.  I will lose complete mobility and will no longer be able to bend my wrists forward or backwards, but I will still be able to supine my arms.  I can't say I'm happy or unhappy at this point.  It is still so far away, at least 2 months before the first surgery will take place, and 2 years before the surgeries are all completed so its a little surreal.  I'm not unhappy about the fusion, I knew it was a possibility 18 months ago when I was diagnosed with EDS and honestly a fusion is better than what I have now.  Also he said that a replacement isn't out of the question down the road, when I'm older and don't need the wrist strength as much for daily activities.  So for now it's a waiting game.  When I'm in labor Chris is supposed to call him and set up the first surgery appt.

EMG

I just got back from my EMG appt.  It went pretty well.  The doctor was incredibly friendly and had the best bed side manner I've ever experienced.  After being poked by needles (ouch!), and electrocuted the test showed that there is no permanent nerve damage.  What is happening is the damage in my right elbow is compressing the "funny bone" nerve which is causing my two fingers to burn - it's as if I'm hitting my funny bone every time I use my arm.  

He spoke very highly of the surgeon which makes me feel better.  

He also said he's seen so many EDS patients over the years and he can always tell them just by the way their skin feels.  He said my skin feels exactly like every other EDS patient - it's very smooth and velvety feeling.  Chris said he always thought my skin felt smooth and soft, and now we know why.

Acceptance

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.

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.