Time Out!

I will be taking a break from blogging for a little while. I have a lot of school work and I need to focus on something other than pain, EDS, and disorders. Yes, it is always present as it is hard to ignore a shoulder dislocating everyday or a headache that doesn't seem like it is going to go away. However, I just need to take a step back from constantly filling my mind with the negatives, even when I view EDS and my life positively. Writing a blog post involves me remembering and acknowledging the pain and syndromes I have. It is very helpful and it is an outlet I am proud of...but for now, I need to focus my energy on my classes.

Also, there is not much to update on right now. I am recovering from surgery and have not started PT. I am decreasing my Neurontin. I will post occasionally if new information surfaces or if I feel it is important. For example, I have a post-op appointment in 2 weeks--expect an update around then. I am always available to reach by e-mail if you have questions. I have some regular e-mail followers and I am still happy to answer questions and discuss your situation. (click the star on the right hand side to e-mail me).

I would appreciate it if I don't receive e-mails asking me how I am. I am fine! I am recovering from surgery. With that comes challenges. As I mentioned, if something surfaces I will post. Otherwise, I don't want to talk about MY pain and MY struggles. However, I have no problem discussing your situation.

I will be back...when the time is right :)

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Companionship

I thought I'd share this picture with everyone. It definitely captures the best of a negative and sad situation. While there are many words to describe this picture, it truly shows what it is like to love and be loved by a dog. Despite their situation, they make each others lives better.

Having 2 dogs who I love more than life itself makes this picture all the more meaningful to me.

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Tethered Cord

I saw the craniocervical manipulation specialist yesterday. He is a D.O. (Doctor of Osteopathic Medicine--which is always encouraging). Dr. Shiple is a D.O. as well.

He asked me a few questions, had me stand up, and knew immediately that, if anything, he could reduce my back and neck pain/tension. He is "cautiously" optimistic about reducing the herniation in my brain (Chiari) and also feels like the treatments will help with RSD/CRPS in my left leg and possibly lessen the severity of Neurocardiogenic Syncope. He did, however, say that my situation is bad and that it will take awhile.  I was told that it is possible I would feel slightly worse after the treatment, although slightly doesn't quite match the severity of my headaches. They are horrible. I also shouldn't expect the full affects of the treatment for 8 weeks. So this will be a very long and extensive process. I am scheduled to have my 2nd treatment in 4 weeks. 

He believes the reason I have Chiari is because I have a (functional) tethered cord. This means that the spinal cord, which usually hangs loose in the canal, is pulled too tightly. As you can imagine, this greatly affects my back and neck as well. My spinal cord is also way too thick in my neck and could be contributing to the intensity of the Chiari headaches. He noticed that I was lacking the correct curvature in my lumbar/sacral spine and suggested that in the future I get an MRI of my lumbar spine to check for any issues. This is not urgent or useful while trying to treat Chiari. If I still present with back pain in the lower region, a scan may be helpful. 

Tethered cord is linked to Chiari Malformation in other cases. 

For more information on Tethered Cord--click here. <-- easy to understand information with video

He also noted that my pubic bones were touching (they are not supposed to touch) and my pelvis was locked. Basically my entire body is out of whack because of my spinal cord. 

The appointment was encouraging....at least in the long run--which is obviously the goal (long term pain relief). I really liked the specialist and hope to notice progress in the coming months. 

In terms of classes....well, what is there to say? I am barely functioning so I am struggling already with this semester. I am only taking 4 classes (3 campus, 1 online) and it's overwhelming and stressful. My head is significantly worse than last semester and is posing to be a lot more difficult to dismiss and ignore. My shoulder has been dislocating as well, which just makes crutching more exhausting and painful. Oh...and I can't walk. I am stressed. I am usually positive and optimistic, and I  still am...but I have no idea how I am going to manage to make it through this semester. I haven't even start PT yet..which will surely add more pain, stress, and fatigue. 

It's time for me to listen to Luke Bryan's Chuggin' Along and Mandisa's Stronger! 

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The Egg McMuffin of Headaches!

This is the first full week of the Spring semester. I am already beyond exhausted. My ankle has been swelling and throbbing more and it's very frustrating. My shoulder continues to be a problem and continues to subluxate. Occasionally it dislocates. My knee seems to be holding up pain wise but it has started to swell again. It is the size of a large grapefruit. Good news...despite the rain, I didn't slip once today!

I will pick up a prescription for a lower dose of Neurontin tomorrow which I will begin taking in a couple of days. After a week of 300mg 3x a day, I will start taking Lyrica as well. After 1 month I will start taking Neurontin (300mg) twice a day. This will continue until I am no longer taking Neurontin. After 1 month of a low dose of Lyrica, I will begin increasing the dosage.

Unfortunately the biggest problem I have had over the last 3 days has been my headaches. The more research I do the more confident I am that my headaches are a result of Chiari. Tomorrow I see the craniocervical manipulation specialist and I am really hoping for some positive results. The pain at the base of my skull has been very bad lately and my headaches make me want to lie under blankets and not move. That's obviously not an option as I have classes 3 days a week and an enormous amount of reading. The pressure pain is intense and I literally feel like a balloon is blowing up in my head. My eyes hurt. I get dizzy...which is annoying because it's not quite the same feeling as the symptoms I get with Neurocardiogenic syncope (and I still get that too). I feel like my head is 100lbs and my neck isn't strong enough to support it. It's possible cervical instability (as a result of EDS), albeit minor, contributes to my headaches as well. Everything about what and how I am feeling with my head is hard to explain. These are by no means normal headaches.

This semester is all about reading, while last semester was all about writing (not sure which I prefer). While I enjoy my classes and professors, I am tired, in pain, and stressed already...and it's only my 3rd day back. I have NO idea how I am going to make this semester work and I haven't even started physical therapy. I have the option of using an electric wheelchair but because one of my classes is in a building with no elevator (and is in the basement), it really wouldn't serve much of a purpose at this time. That does not mean that I won't ever use it. Of course it will serve useful at some point...but I do not feel it would be helpful right now. I was given the option to drop the class but because of the professor I would not consider this as an option. I was (and am) looking forward to the class.

In my sports world things are going pretty well. The Patriots are going to the Super Bowl and the Bruins beat the Flyers. A win in any game is always nice, but when you go to a school in Philadelphia, beating the Flyers is even better (and more important...because I make my allegiance known).

GO BRUINS!

GO PATS!

(Photo by Elsa/Getty Images)

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Muscle Relaxants

WARNING TO EDS PATIENTS: Be careful when taking muscle relaxants. EDS patients are generally advised against taking muscle relaxants for muscle spasms because our connective tissue is already too loose. Muscles hold our joints together instead of/better than our tendons and ligaments. If they are too relaxed they will not be able to provide support.

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EDS Awareness Shirt

(click here to see the shirt on zazzle.com)

Front

Back

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Truly Inspiring

This story of an Autistic girl is truly inspiring. Please take a few minutes to watch her story.

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Life is Hard, Yard by Yard...

But inch by inch it's a cinch....(taking things one day/minute at a time).

Today was my first day of classes for the Spring semester. I am taking 3 campus classes and one online. My professors are great, the classes are interesting, yet I am beyond exhausted and in pain. My right shoulder dislocated twice. I have no idea how I am going to make it through the semester but I just have to keep chuggin' along.

The headaches I have had since August are definitely getting worse again. I was wearing sunglasses for awhile because I was very sensitive to light, but now my vision is darker. When I am not wearing sunglasses, I see everything as if I am wearing them. I can't wear them anymore because then it just makes it extra dark. Strange. I see the craniocervical manipulation specialist on Tuesday. Hopefully that provides some relief. Perhaps he can shed some light on the issue.

I am having horrible and random lightning bolt nerve pain in my knee. It is likely my nerves firing again and returning back to normal. Although the process is quite painful and unexpected.

I am waiting to hear back from Dr. Shiple. I need a new post-op knee brace. I am having a problem with the straps (they are cut too short). The brace slides down my leg all day. Seeing as I need my knee to be locked in extension and stable, I need a brace that stays on.

I also made a shirt on zazzle... Front: "My joints go out more than I do" Back: "Ehlers Danlos Syndrome Awareness" with a zebra! I am still working on the final touches and details but I will post a picture when it is done.

Also, the Bruins need to start playing better because they are stressing me out.

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Extreme Blog Makeover

Instead of changing my hair color again...which was one of the worst decisions that I have made in awhile (although I am in the process of going back to blonde), I decided to give my blog a total makeover. This time not just a background and banner change but a total upgrade to a new format.

At the top are tabs or "pages" with information to some of the disorders/syndromes I have. They contain the same information that was previously on the left hand side of my blog. I have also included informational links for each of the appropriate pages--the same links that were on the old format. I have added "pages" for Chiari Malformation, Neurocardiogenic Syncope, and Dysautonomia as well.

Also in the tabs on the top is the navigation post to help find posts related to specific problems. The link can also be found on the right hand side of the blog under the "New to my story?" section. The followers tab is now located on the bottom of my blog.

*Home will obviously take you back to the main blog page.

I feel this is a better way to organize my blog and information. I will update the top "pages" with new information and links when I come across them.

I hope you like the new format.

Best wishes to everyone!

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What a Relief

I don't have much to update on in regards to my recovery. The pain comes and goes in lightning bolt form. For the most part it's not a problem. I have only been taking 2 Tylenol a day which seems to do the trick. I am hoping the lightning bolt/burning pain is because the bone in my knee is healing and the nerves are firing again. The only other alternative I can think of is CRPS and I really hope that's not it. As if dealing with it on the left isn't bad enough. Fingers crossed it's weather and healing related.

In terms of my CRPS on my left leg, I started to decrease the amount Of Neurontin I take a day. I am currently taking 600mg 3x a day. When I am down to 300mg, I will begin taking Lyrica....while continuing to decrease Neurontin. We discovered that my short term memory issues are likely a result of Neurontin. It is a listed side effect. So far I have not experienced CRPS nerve pain on the left leg. I hope it stays that way during this transition period.

The headaches that I have been experiencing since August are still present. They have not gone away nor gotten any better. I just don't have the energy to make it a priority right now. I have an appointment for craniocervical manipulations in 2 weeks with a specialist who sees Chiari 0 patients. I am hoping for some relief because it's really my only option for awhile. Good news is surgery didn't make my headaches any worse. I have really bad headache days and "good" days (although you'd never know the difference). The "good" days are by no means good, but they are more tolerable than the really bad days.

As I have mentioned previously, I am only taking 4 classes this semester. I will take 1-2 over the summer. Unfortunately 5 classes is just not realistic with my recovery and physical capabilities. I am exhausted and on top of recovering from ankle and knee surgery I am trying to prevent dislocations--namely with my right shoulder. I do have good news about my schedule. I found out today that I have been approved to take an online course this semester. I am so relieved. This will be a huge help. One less campus class will take a lot of stress off my body during recovery. I start back on Wednesday. One of my classes is called Psychosocial Aspects of Illness and Disabilty. I am pretty sure I could teach the class. I am also taking an English class with the same professor I had last semester. He's awesome. I will take Conversational Spanish and my online class is Cognitive Psychology. I am excited for my classes, although I can honestly say I wish I didn't have to deal with everything together. It was so much easier recovering from surgery when school wasn't a factor. Because I am only taking 4 classes, Dean's List is not a possibility, however I will treat my classes and semester as if it were.

On a completely unrelated note that I feel like sharing: my Bruins sweatshirt that I have been wanting for so long finally arrived and I LOVE IT! I also ordered "The History of the Boston Bruins" DVD and it was amazing. It even made my dad teary eyed (which I am guessing is why he jumped up a few times to leave the room...only to come back minutes later). The B's lost tonight (yes, it happens..although not very often) but the Patriots won against Tim Tebow and the Broncos!

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Stitchless

My stitches are out! Thank God. It was not a comfortable process but I am relieved that it's over with. I am also in a hard cast. I head back to Boston in February. The cast will be removed at that time and I will be put in a walking boot. I am definitely looking forward to the walking boot...more freedom! Although I obviously would much rather have no cast.

My knee and ankle have been hurting more over the last couple of days--no doubt because of the rain. Rain with screws and fractures usually means pain. I just hope the weather behaves. I would much rather it snow than rain. Tylenol seems to help in the meantime. I finished taking Aspirin yesterday. I am glad that I don't have to take it anymore. I only take Tylenol as needed which thankfully isn't very often.

I start the Spring semester next week. I am by no means ready. When I stand up my ankle immediately begins to swell and my foot turns blue. I have no idea how I am going to manage the swelling when I will be up and crutching around more. I also don't know how sitting in class is going to be. My leg is locked in extension and in a full class there is no guarantee there will be an extra chair or desk for me to lift my leg. To be blunt, this is really going to suck. Last semester was hard enough and I could walk. Now I can't walk and I have a post-op knee brace and ankle cast on the same leg. I haven't even started PT yet, which will obviously be painful. To say this is going to be difficult is an understatement. I am waiting to hear back from the Registrar's office but I am hoping to substitute a campus class with an online class. Online classes are not offered to day students at SJU but we are checking to see if because of my physical disability they would make an exception. That would definitely help make this at least a little more reasonable.

The Bruins beat the Canadiens tonight! 2 more points.

Oh and if anyone was wondering where the snow is...it's in Alaska! They were hit with 18ft. They stole the snow.

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Improving...

...one day at a time!

Since my last post I have been able to cut back on Tylenol. I only take it as needed which is a huge positive. The swelling has improved at night and I have been able to get comfortable almost immediately. Progress is progress no matter how small--baby steps! However I still cannot stand for very long. My foot turns purple/blue and my knee has pooling issues as well. Pooling is normal post-op but it is always a problem for me (even when the situation doesn't involve surgery). My primary actually told me that it may be related to my Neurocardiogenic Syncope (Dysautonomia) so there really is not much I can do about it. It's a neurological signal issue and has to do with autonomic functions. The autonomic nervous system controls the body's functions that you don't think about consciously--heart rate, blood pressure, etc. For me and my pooling/Dysautonomia (Neurocardiogenic Syncope) deals mainly with blood pressure...but there could be other factors. As long as my foot has a pulse (it always does) there is nothing to worry about. I am hoping that I can start standing up more because I start back at school on the 18th and I will be on crutches and upright a lot more.

Tuesday is my 2 week post-op appointment for my ankle and 3.5 week post-op appointment for my knee. As I mentioned in my previous post, my stitches come out and I will be casted. I am eager to get my stitches out while completely dreading it. I hate stitches. It is an uncomfortable feeling. It makes me feel sick. However, I just want them out.

Tomorrow marks 3 weeks post-op for my right knee! I have very little pain. It is uncomfortable at times. I am locked in extension unless I am lying in bed or stationary. Otherwise the brace can be unlocked--ranging from 0 to 60 degrees. The most I have bent my knee is 30 degrees and it is very uncomfortable. The swelling in my knee has gone down dramatically. It is still inflamed but nothing dramatic. The steri-strips are still on because during ankle surgery my surgeon changed the steri-strips and noticed that the TTT Osteotomy incision was not completely closed. I should be able to remove them now without any problems but due to nerve pain it doesn't feel good. One at a time!

For those who care (you all should)...the Boston Bruins extinguished the [Calgary] Flames in their game last night-winning 9-0. Beasts of the East! Go B's!

Key Terms:
Autonomic Nervous System- controls functions you don't consciously think about--blood pressure, heart rate, etc.
Autonomic Dysfunction = Dysautonomia
Dysautonomia is a term used to describe any disorder or malfunction of the autonomic nervous system.
-My Dysautonomia [syndrome] is Neurocardiogenic Syncope
*Many EDS patients have Dysautonomia...most of the time POTS (Postural Orthostatic Tachychardia Syndrome)

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Well isn't that swell...

I am scheduled to have my stitches taken out on Tuesday with Dr. Shiple. After my stitches are removed I will be put in a hard cast for 6 weeks. It will be removed at my 8 week post-op appointment in Boston. At that time I will be put in a walking boot. I am looking forward to having my stitches out, although the process of removing them is not enjoyable. Most of my incisions were closed with internal sutures and dermabond (glue). Because of the positioning and location of the ankle incision, sutures/stitches were the better option. Having stitches removed makes me feel sick! I don't mind seeing them on other people, but for some reason the indifference is not the same when it comes to myself. Hopefully Dr. Shiple is quick!

I am still taking 2 Extra Strength-Tylenol around the clock. This is the first surgery that I have had to maintain a consistent schedule of taking Tylenol. I'd imagine it's because I just had two major reconstructive procedures on the same leg. My knee feels pretty good considering what was done to it. For some reason ankle surgery was like a light switch for my knee pain. It turned it off and hopefully it stays that way for awhile. My ankle feels better pain wise but swelling is still an issue. I have a hard time controlling the swelling at night and it keeps me up for awhile. I adjust pillows and my hip angle, and constantly reposition everything but I haven't found anything that consistently works in eliminating or reducing inflammation. Obviously I elevate my leg but sometimes elevating it too high actually hurts worse than if I have 1 or 2 small pillows. With ankle trauma swelling can last for up to 3 months so I don't necessarily expect it to go away anytime soon--although that would be nice. I am just hoping that it calms down when I get my hard cast because I can't adjust the hard cast like I can with the soft cast/splint.

My schedule is pretty much the same everyday. I wake up and wait for my dad to come help me downstairs. I make my way to the couch where I sit for the rest of the day. I watch NCIS, House, sometimes Gullah Gullah Island, and hockey with my dad! I am excited because today the Bruins game is actually on TV. The Bruins keep me occupied and give me something to look forward to! Tonight my friends may stop by for a little to say hi before going back to school. It'll be great to see them.

I start back at school on the 18th. I am only taking 4 classes to make it a little more manageable given my recovery status. I will take a summer class to make up for the missing class this semester. I only have classes 3 days a week. This gives me time for appointments, trips to Boston for post-ops, therapy, and of course time to relax.

Seeing as I have 2 weeks until classes resume, I will continue to watch TV and snuggle with my puppies everyday!

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