Gobble Gobble

To get up in the morning only to know that you have to face another obstacle takes strength. To smile when the only thing you can do is cry takes bravery. To act happy and laugh when you know that times are at their worst takes courage. To be joyous when the only good news is the best of the bad news takes support. 

***

My day from hell is over (thank GOD)...but it started off about as badly as it possibly could. My first task of the day was my Theology group presentation at 8am. Well ...I woke up at 8am and the only reason I woke up was because my dad came into my room to see why my car was still in the driveway. I live about an hour away and there was no way I was making that class. My alarm either didn't go off, or I slept through it (which doesn't usually happen--especially when I have something important to do). I still feel terrible for leaving my group to do my part...with no explanation as to why I was not there (which wasn't even a good reason). I guess it happens and there isn't anything I can do to change it. I spoke with my professor who was so nice, and he said that my group did a fantastic job. He told me no one would have even known that there was a problem, and that he could see that I was one of the authoritative members in the group--my leadership from our group meetings was evident in their ability to stay organized. He even said that the presentation was one of the best he's experienced in several semesters. Phew!

The rest of the day went pretty smoothly. I had 3 papers due and a spanish presentation and all went according to plan (unlike my morning).

So my day from hell is over and I am officially on Thanksgiving Break!

I believe I owe everyone an update as to how I have been doing over the last week and a half. I apologize again for not updating sooner. I have had no time to do anything but go to class and work on school assignments.

Head:
My head is getting significantly worse (all of my symptoms). My neck is also more painful and I am having a difficult time focusing. Unfortunately my appointment in Boston wasn't as conclusive as I would have liked. The doctor doesn't "accept" Chiari 0 and therefore he doesn't believe 3mm of a herniation is significant. Chiari 0 is a debatable problem in the world of neurosurgery. Some specialists feel that when the patient presents with the neurological symptoms of Chiari Type 1 (which is classified as 5mm herniation or greater) the level of herniation is not significant. Meaning that patients with neurological symptoms and Chiari 0 should be considered for the same treatment as patients with Type 1. However, maybe seeing a specialist who doesn't believe 3mm is significant is a good thing. This will lead me down a more conservative route, rather than if I had seen a specialist who believes that 3mm is signficant. I likely would have been told that I would do well with decompression surgery--something I definitely want to avoid at all costs.

I am currently looking into craniocervical manipulations by a specialist that Dr. Shiple recommended. There have been studies that show that patients with Chiari 0 respond well to these manipulations and in some cases the herniation level has improved. If these manipulations don't work, I will look into the Driscoll Theory as an alternative. For more information on the Driscoll Theory--click here--below is a video of Dr. Diana explaining the Driscoll Theory and why it may be helpful for EDS sufferers--Dr. D has EDS herself (as well as Dysautonomia).

Knees:

My knees are not doing too well. My left knee just hurts. It is supposed to be my supporting leg and it really isn't living up to it's responsibilities (just as I unfortunately failed to live up to my responsibility to my group for my presentation today...still beating myself up over it). The pain is localized to my patellar tendon which is good and bad. Good news is the pain is not related to my past surgeries. Bad news is it is likely tendonitis which I am pretty much stuck with. Hopefully more strength in my legs, and an even gait (after my ankle and right knee are reconstructed) will help take some of the load off of my left knee. My right knee is hanging in there (literally) but I can feel it grinding when I go through flexion. Surgery cannot come soon enough. I am so ready to put this leg behind me. I will be having two different procedures on the right knee (although combined in one surgery)--MPFL reconstruction with cadaver tendon (same procedure as left knee) and a TTT Osteotomy (Tibial Tubercle Transfer). I will post at a later date about what a TTT Osteotomy is and what the expected recovery time is.

*My RPAO screws will be removed during one of my two December surgeries. I am excited for them to come out because at the moment I cannot wear jeans. The waistband of jeans sits directly over my screws (which I can feel) and it pinches and is very uncomfortable and painful at times. 

Ankle:

My right ankle has been bothering me lately. It is getting significantly weaker due to lack of use and immobilization. However, there really isn't anything I can do until surgery in a couple of weeks. As I have mentioned in previous posts I am having the Chrisman Snook procedure with cadaver tendon (allograft) in December. 

Shoulders:

I had a scare with my left shoulder last week. For some reason I woke up and had sharp, shooting pains down my arm into my elbow. No dislocations...just pain. However, the pain only lasted about 2 days and now it is back to functioning well and is stable. Key word/most important word is STABLE! My right shoulder is currently in the joint. I spent 6 weeks in a pillow sling. I am fortunate that it stayed in place after ditching the sling. Another dislocation to the right shoulder will likely result in more nerve damage and well....it just wouldn't be good. I do not know if my shoulder will be able to support me on crutches this December. I will use my wheelchair immediately post-op and until I return for the spring semester. I will then use my crutches for school for as long as my shoulder will allow me to. The wheelchair lift was installed a month ago and is ready to use if necessary. 

Back:

I am back to using a heating pad which I really shouldn't do. This past summer I developed Toasted Skin Syndrome (as funny as that sounds) from the heating pad. This time around I make sure that I use the low level of heat and it only stays on for 2 hours. Unfortunately my back pain is horrible and I really can't sleep without heat...at least to fall asleep. I use thermacare wraps during the day but they are not hot enough and are uncomfortable at times because I have to wrap them around my stomach. 

CRPS/Neurontin

I have been taking 2400mg of Neurontin everyday for about 2 1/2 weeks now. My CRPS pain is finally back under control. However, unfortunately it was brought to my attention that Neurontin is likely the cause of my memory issues. I spoke with Dr. Shiple and I will start weening myself off Neurontin and will start taking Lyrica instead. 

The most important update is that the Bruins have won the last 8 games in a row and will hopefully add to that run tonight when they play "them"-- GO B's! I am looking forward to going to the Thanksgiving Showdown game at the Garden on Friday with my cousin (Bruins vs Red Wings)!

**"Them" = Canandiens**

I hope everyone has a wonderful Thanksgiving! I am looking forward to spending time with my family.

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Update....

I am sorry I have not updated. I have been so busy and overwhelmed with the end of the semester being close. Tomorrow is going to be rough. Actually, rough is an understatement. I have so much schoolwork to do before Thanksgiving break (2 presentations, 1 paper rough draft, 2 research critiques-- all tomorrow). I will update tomorrow night or Tuesday.

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IBS Tales

I am including a link on the left hand side of my page for a wonderful website for IBS. It lets IBS sufferers share their stories and get support, and there are more than 600 personal stories on the site. (Click here to visit ibstales)

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Humor

Thought I'd share some medical humor with everyone!

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It's Official!

This week was rough and has definitely had more downs than ups. But it can always be worse and I just have to keep chuggin' along (although the end of the semester really needs to come sooner).

On top of having one of the craziest school weeks with assignments, tests, and papers, I had PT and several other doctors appointments--PCP follow up to review my upright MRI results and eye doctor appt (my eyesight has gotten worse in the last 9 months).

Monday I received some unfortunate news. My upright MRI revealed that I do in fact have Chiari Malformation. I have a 3mm herniation on the left and a 2mm herniation on the right. The left side is definitely more symptomatic but I experience the same symptoms on the right as well. Because my herniation does not meet the standard criteria for Type 1, I fall into the Chiari 0 category. I am still scheduled to see the specialist at Children's in 2 weeks. I am hoping for more answers and a game plan after that appointment!

I have been having more (pre) syncopal episodes lately. I'd imagine this is because of my headaches and pressure issues but I am not entirely sure. I am pretty diligent about staying on top of my salt intake and I always have water with me to make sure I am hydrated.

I have been struggling in PT. There seems to be a disconnect between my hip flexor and my brain. For most people, walking just comes naturally. However, when your hip has been cut open and messed with a bunch of times this natural "connection" can be interrupted. Instead of picking my knee up (using my hip flexor) and walking, I use my back and pelvis to swing my leg out to the side and forward. FAIL! So I have been working with Cam on walking drills and exercises that will help my hip flexors fire correctly. However, it's a painful process because I still have tears in my psoas and rectus femoris--which make up the hip flexor.

My nerve pain (CRPS) seems to be back under control after increasing from 1800mg of Neurontin to 2400mg. Hoping it stays that way!

My ankle has been bothering me a lot more lately. I have no idea why but I am not too concerned. There really isn't anything I can do for my ankle at this point other than wait for surgery.

Both of my knees hurt, but like the ankle, until surgery there is nothing I can do--at least for the right knee. The brace does a good job at keeping the kneecap in place and that's really all I can ask for at the time. I have no idea what to think about the left but seeing as the kneecap is stable, I don't really have any energy to worry about it.

The BRUINS won their last two games. I am much happier! They won tonight's game against the top team in the division...7-0! GO B's! I can't wait for the game I am going to with my cousin at the Garden!

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Zebra Pride

I found this from a post on an EDS support group on facebook! 

You know you're a Zebra when...

-You ache from head to toe and you're too exhausted to move...but you still look great!

-You can hobble like an old woman from the disables parking spot to the store and people still give you dirty looks.

-You explain EDS to someone and they don't believe you. They tell you it's too weird to be a real disorder.

-You can absent-mindedly put a cereal box in the fridge...after also absent-mindedly rearranging a shelf so that it will fit. 

-You're incapable of sneaking up on anybody because people can hear your joints cracking from a mile away. 

-You can relate to The Princess and the Pea

-You can also relate to Humpty Dumpty

-You have an entire closet just for your splints/braces

-You're on a first name basis with your doctors, surgeons and nurses

-You're the only one in your house who's still awake at 3am, but you're also the only one still asleep at midday

-You can sleep from 3am to midday and still feel tired

-You start giving your most rebellious joints nicknames

-You use the Spoon Theory 

-It takes you until mid-afternoon just to get ready to leave the house...and then you need to lie down

-You get up, walk into the kitchen, forget why you're there, go back to sit down, remember, walk back into the kitchen, and forget why you're there...

-You can tell your friends and family that you've dislocate something and have to stop and reduce it...and they act like it's normal

-If your friends ask you to meet up next Tuesday, you have to say you'll call them on Tuesday morning to confirm because you won't know until then whether or not you can go

-The 1-10 pain scale doesn't apply to you

-People ask if you're studying medicine because you seem to know so much "random medical stuff"

-All you want for Christmas is new collagen

-You remember holidays like Christmas and Easter by which injuries or surgeries you had at the time

-You need both hands and all your strength to move an empty frying pan and your fear isn't of dropping it, it's of the frying pan taking you down with it

-You take a bag with you everything and it's full of medications, bandages, salty snacks and water or Gatorade

-If asked for your medical history, you pull out a packet of information all typed and ready for them. Listing everything would take hours and you're terrified of forgetting something important

-You factor "bad days" into your plan for the week...then go back and add an extra one..just in case

-You get told off so regularly for putting too much salt on your foot that you just can't be bothered explaining low blood pressure to people anymore

-To list your current aches and pains would spend your entire quota of spoons for the day

*-You're family can't understand why you were such a 'normal' child and now you can't walk and have a doctor's appointment...or 2 or 3...a week

-You can't remember the last time you went to bed before you were already so tired you were passing out, and it's not because of your party-hard lifestyle. You just can't get any sleep unless you're that desperate

-You're sick of hearing, "But you're so young!" whenever you explain EDS to someone. Clearly the concept of genetic conditions starting at conception is beyond some people

-You wish you got paid in cash every time a doctor, nurse or EMT asked, "So, what hurts?" or "EDS? What is that?" We would be millionaires 

-You can use your symptoms (aches, swelling, blood pressure) to predict the weather more accurately than the weathermen can with their fancy equipment 

-When you pass out or get some new, frightening symptoms, instead of going to the ER or calling an ambulance like a 'normal' person, you just write it down to mention to your specialist at your next appointment

-Your nickname is Snap, Crackle or Pop because that's what you do

-Some doctors are scared of you

*I found that quite humorous!

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