Blog you are obsolete.... I will post a link to my new blog later.

Tomorrow

I disappeared for a while after Grandma's funeral. Got lost in time for a few days and then went up north to the cottage for 5 days. I just got back yesterday.

I feel like I should write about the insane spider drama of last night, or Adam's surprise birthday present, or a fun things I did up north, or the parties I went to tonight. But I just can't.

I'm nervous. Tomorrow is the big day. I meet Dr. I. I find out my future. I'm excited and nervous and anxious and everything all in one.

So nervous I may puke.

11 days

Just got back from the funeral. Held it together until little 3 year old Cora said "I want to see Grandma!" :(

June 23, 2010

Today is not how I imagined it to be. I always have dreaded losing a grandparent, for I have been blessed with the four best grandparents anyone could ask for. I've anticipating this time for years: when Grandma had breast cancer, when Grandpa was in the hospital three years ago, when Grandpa was seizing from low blood sugar. So many of these events scared me. I've seen death so many times in the past, each one more horrible than the last. And I always anticipated the loss of one of my beloved grandparents would cause the Earth to shatter and crumble and I would go into a depressive coma and never wake up.

So let me summarize today:

I was scheduled to be with Grandma from 9-2. I get there at 9am and Hope, an LPN, was there. We told various stories about animals, cherries and houses. We washed Grandma up with super good smelling soap, brushed her hair and put on a fresh nightgown. She looked gorgeous. As Hope and I sat and talked Grandma made some efforts to talk. Hope told her to keep talking to those angels, and she did. She kept trying for a bit. Hope encouraged us to have Grandpa call her from the nursing home and tell her that it was okay to go, since he was unable to come and see her in these last troublesome weeks. And before Hope left, she whispered in her ear telling her that if she passed before Hope returned in the afternoon to have a safe journey, and other things I couldn't make out. For a small while I read to my grandma from "Girl with a Pearl Earring". I figured she would enjoy the story since the painting proudly hangs on the wall in her living room. Her respirations had been 1-7 breaths per minute since yesterday. And today they usually had 55 seconds of apnea in between. But she kept hanging on. At 11am a priest who has an impossible to spell last name came by. He was the same priest that officiated the majority of our family's funerals. He read her the last rites. As we said the "Our Father" prayer she was vocalizing in her own way. Come noon, we received the call from Grandpa. As the phone was held to her ear he told her that he loved her and that it was okay to go. Moments later he called back and was very upset and wanted to talk to everyone in the house. He was crying uncontrollably. Around 1pm my uncle needed to leave the nursing home, so I offered to go sit with Grandpa. Before I left I gave Grandma a big hug and kiss and told her that I would give Grandpa a big hug and kiss from her. She tried to lift her arms up to hug me back, and I told her I knew she was trying. And then I left Grandma's house for the last time.

At the nursing home, Grandpa told me he was trying to rest but couldn't stop crying enough to sleep. He started to cry. I knelt by his bed and hugged him. And I cried with him, for the first time since this whole thing started I broke. He talked about how she was the best woman ever and he was so lucky to have found her and to have been with her for so long. And then we both settled down a bit. We were able to talk about my new duplex and various other real estate. And occasionally he would ask about Grandma but there were no more tears. He asked about her last rites and who was there. He asked if he should've gone to see her. I told him no. He said all of the boys told him 'no' too and that she didn't look well. I told him it was the contrary. We washed her up and she looked gorgeous today, but that she wasn't able to respond to anything and that would be hard for him to face. After more talking and lots of hugs and kisses, I left him so he could nap.

I was visiting baby Cameron when I got the call from my dad that she had passed. Roughly four hours after the call from Grandpa. It's so amazing how people can hang on until they get all their ducks in a row, and she was just waiting for him to call. She died at home and surrounded by family, exactly as she had wished.

Before writing this I haven't really cried. I took care of her and watched her slowly fade each day. I will cherish all the time I got to spend with her these past weeks: eating strawberries, her little jokes, visiting with family, reliving memories, learning about her childhood. I just pent it all in. I don't cry for her. She is at peace now and with her brother and son. Mostly I cry for my grandpa who was so devoted to her.

People keep asking if I'm okay. I'm okay, but I'm not. I'm glad, but it's still never easy. Andrew called me up instantly when he had heard to see how I was doing. I haven't seen him since I've been back in town but he knows me. He helped me through Bill's funeral and he knows all about my poor coping mechanisms. Him calling me was the most thoughtful gesture anyone could give.

Tonight I went to my cousin's and drank. We all needed a drink, it's been so rough for so long. I played with little cousins, and cuddled 10 wk old Alex for a very long time. And we lit fireworks. And now I write. I write so I don't ever forget what an inspirational and spiritual day it was. It was her time. The Earth didn't shatter, but the sun stopped shining.

I will always love you Grandma.

15 days

I feel so disconnected from life.

I poke around on wedding forums and feel disgusted. What... your biggest problem in life is that the table cloths don't match the dresses?! People are dumb sometimes.

I just feel like I can't relate to the minor details of life anymore. Go big or go home is all I can conceptualize.

On a side note, I can't wait for my architecture software! :)

Biggest Pet Peeve

I have 2 big pet peeves....

1) People borrowing my clothes.

It's just weird to me. I can borrow others' clothes but I get weired out when they borrow mine. Maybe I should've had a little sister and then I would be okay with this.

2)When my nursing career is ignored/questioned. Just tonight I had someone say that "everyone" wants me to go on and become a physician assistant or doctor because I'm so smart. I flat out said that I would never do that. Or then people call me Dr. Laurie. BARF!!!!!! Is it sad that I take offense to that?

I became a nurse to take care of people. Not play with medicine, diseases, or contraptions. Doctors cure diseases, nurses cure people. I enjoy spending time with my patients, not just going on rounds like others do. I enjoy helping them achieve milestones in their recovery. I enjoy deep conversations and getting to know their families. I like being the first person who notices a change in patient condition... that is what saves lives. I enjoy developing a personal relationship with them, and if that means cleaning a bed pan or two so be it! Sure I could make a good doctor and be behind the scenes, but wouldn't you rather have an intelligent nurse by your side night and day????

*steps off the soap box and winks at Dean May*

I shall wind down tonight with the following:

Things I Learned Today While Grandma Sitting

1) You can't study for a big exam (aka- state boards) while counting breaths per minute.

2) People's true character becomes inherently apparent; not even death can soothe sibling rivalry.

3) Even dying grandmothers can have their mind in the gutter.

4) Jingle bells make great bed alarms.

5) Giving grandma a back massage is just as good as receiving one. :)

Night blogland.

For hardly the last time: F THIS

I thought bad things happened in threes? Not 500s.

Uncle got results bad today... cancer spread as we assumed. It started with a frequent cough, which led to the discovery of stomach/esophagus cancer that was super big. Which led to investigation of lymph nodes and other organs near by. Which led to cancer in lymph nodes and the liver. Stomach/esophagus is impossible enough to recover from... now throw in the liver. His wife died from liver cancer. That was 9 years ago. He knows what to expect. He has seen it all before. We all have.

I also didn't realize until last night that my dad still isn't doing well still. I thought his medications had things under control. My mom was saying they aren't able to wean his meds without symptoms coming back. Also, she noticed that he has trouble walking, where he almost trips. And his vision is jumping all over the board. Today he got in a biking accident. He needs to have surgery. Seriously. Fuck this.

How do I study? How do I sit still enough to apply for jobs? The only time I am still is when I sleep half the day away to avoid being awake. And when I'm awake I'm usually comforting my dying grandmother. Or visiting my sick and depressed grandpa. Or researching my own incurable disease. I could just scream.

I find solace in my dogs because they never ask questions, never judge. Plus they are all I have to get me through the day...

179

Why doesn't anything ever go right? Today I found out that my uncle has cancer. A bad cancer. One that most likely spread to many of his vital organs. One that can't be treated successfully. I go from being in shock, to crying hysterically. Nova's tongue is just big enough to catch all of my tears.

Confessions of my life:

1) Pickles eaten from Aunt Pat's pickle container are my comfort food even though I cry when I go get them. I eat many of them numerous times a day. Currently, they are most likely the source of 50% of my daily caloric intake.

2) No living thing loves me more than my puppy. She is always there for me. Especially when I'm having a bad day, like I am now, she follows me everywhere. And when I am stationary she parks by my feet... even when I sit on the toilet, she is loyally right between the toilet and the wall.

3) I watch too much Criminal Minds. I'm developing a complex or paranoia that everyone I see has the potential to be a serial killer. Or even when no one is around... they are watching me and plotting when to cut the power/knock on the door/etc. I can't wait for the next season to come in the mail tomorrow!

4) I have dysfunctional coping mechanisms. I believe this makes me ill-equip to do anything successful in life.

5) Most days, I figure I'd be better off being with her.

Time to go into another Netflix coma.

F it.

...I just want to be normal...

181 days

Ugh why am I so freaking emotional right now? I'm crying just thinking about writing this entry. It isn't even cry-worthy.

For starters: I love my grandma. I had such a nice time with her today. I'm so happy for her small accomplishments, like eating applesauce and strawberries or saying something a little raunchy. :) I feel so overwhelmed with love when I'm with her, just helping her make it through this difficult journey. Love love love her. I'm going to miss her so much.

The other night when I was posting I was meaning to talk about what I was doing that night. I did lots of research on my neurosurgeon and found nothing but glowing reviews. Everyone who has met with him says he is a godsend. I also read some of his publications. I'm looking forward to meeting him so much.

Yesterday morning I walked the Bellin 10k with mom, Josh and Kelly. (And today I'm sorer than sin.) Then I went to Mabie's bridal shower, followed by my aunt and uncle's party. At the party I was submersed with little kids... I have a chuck of skin missing from the back of my heel thanks to a tricycle... I got to hold Baby Cameron, dance with Miss Miah and Cadence, and attempt to protect myself from Kiersten's crazy antics. Adam's band played. It was family, friends and fun.

And today I woke up feeling different. I never thought I'd be saying this right now, or at least before July 7th: I want a baby. It struck me again, more than it ever had in the past. Right now I could care less if pregnancy destroyed my spinal cord, or I can't carry my own child, or can't pick them up and dance with them, or can't pack a stroller into the car. I don't care about any of that. I just want to be a mom. I don't even care if I didn't wait to see the neurosurgeon first.

I don't know if it is a combination of grandma's ordeal, or holding my angel baby Cameron, or family functions, or bridal showers, or the connection Josh and I found over the weekend, or I don't know. I don't know what it is, but I know what I want.

6 MONTHS!

So I saw my dear little Alex. He was so freaking cute! He has the most perfectly round little head and looks so much like his daddy. Then I finished up my gift for the bridal shower tomorrow. She will looooooove it! And then off to Grandma's.

She is sooo not doing well. She can't stand, can't sit up, can't converse. She has declined drastically in the last 24 hours. I'm glad I get to be there and spend time with her. Some of her kids are uncomfortable with being there when she dies, so I'm more than happy to step in. It's hard when she doesn't eat, or when she is so restless and can't get comfortable, but when she sleeps and is at peace it's good to know that she will be with Bill and Paul and Sandy soon. I love her so much.

While I was at Grandma's the hospice nurse was holding her steady and me and two others needed to move the heavy marble table. I helped one of them with the marble top.... probably shouldn't have. My back has been hurting since. :( Anything for Grandma though, as long as she is safe.

Tomorrow will be a busy but very rewarding day I think. I'm really excited.

To wait or Not...

Well I saw one of my babies today. The other one will be tomorrow morning. They get so big so fast. :( But soon they will be more fun to play with. :)

Also, went to go visit grandpa today. He is doing soooo much better. Now that the delirium has cleared he can carry on a conversation and he is walking again. He is getting back to the same grandpa I remember. He is still very thin (compared to his previously portly frame) and is still going a bit slower. But overall much better. He even remembered the wedding.... that really makes me want him there. And this is where I get torn up again.... early wedding for grandpa or hold out hope that he makes it?

Quote of the Night:

After talking about many of the cute good-looking nurses at the nursing home, Grandpa followed it by saying: "There are some bags."

We all died with laughter that he is so critical of the look of his nurses. :)

184 days!

I'm doing better than 50% on my goals for the week! :) I registered for the boards and went to 2 swim classes, and also unpacked quite a few boxes last night. There are still many boxes left, and I need to apply for some more jobs!!! All my other friends are starting to get lucky with interviews, so hopefully I'm next!

Yesterday I made Rice Krispie treats and brought half of them over by Jodi. They were delicious! Jodi and I had such a hilarious time together and there were many instances where we were laughing to tears. I reiterate: I'm glad to be home! Although yesterday was super rough emotionally, I have high hopes for today. I'm going to go have lunch with my mom and hopefully visit both of my babies!

Finally!!!

I finally am able to get exercise!

Yesterday I went to the swim class for people with spinal problems. It was a packed class, as Mondays usually are. It wasn't super intense, but it got me moving which is what counts. During the last 10 minutes a woman named Barb came up to me and recommended I take the deep water class because I'm "young and fit".

So today after a walk around the block with Nikki, I went to the deep water class. It is a weird sensation when you are supposed to be sweating, but you are already in the water.... Anyway, it was such a good work out and I was able to do things that I can't do on land because of my restrictions. They also gave me the double weights because I'm "young and strong" which proved to be a great work out. Who knew there were so many exercises you could do in water that aren't traditional swimming? I may start going all the time. I looooove it!

I also started 'grandma sitting'. Tonight she was doing so well, despite people giving her just days to live. She was able to get up and go to the bathroom without problems, and she was eating really well for me. She had grapes and blueberries, ice cream and a big cookie. We were joking around a lot, and her memory didn't seem to be so bad today. Jim and Ricki and Thalia visited which helped to pass the time. AND!!!!! Grandpa walked today!!! For the first time in 7 weeks he was able to walk with a walker. Now that his delirium is cleared up, he understands the magnitude of grandma's situation and is bound and determined to walk so he can come home and see her.

Goal for tomorrow: Get all my errands done!!!! No more procrastinating.

...

So. Much. Back. Pain.

Whether it is just because or because I've been sick and coughing (coughing = increased CSF = increased syrinxes), I don't know. Needs. To. Go. Away.

No You

I sat with Cadence on my lap as everyone was getting up to leave. She wrapped her legs around me and clung to me. She was waiting for me to stand up with her. I told her "Here go up by Uncle Josh." She said "No. You." And I told her the thing she couldn't understand...that she can't come up by me. Breaks my heart. :(

I hardly slept last night. I realized I went to the dark place. It's where I don't feel worthy of anyone's affection or love, because I don't love myself. How or what could anyone love if I don't love myself. It's why I push people away who love me. It's why we disagree and fight. It is why I put up walls and don't let people in. It's why I'm unhappy. I have no self-esteem. I lack trust in loving relationships, even when there is no reason to.

I was reminded today: relationship with God --> self-esteem --> trust --> love

I need to work on that. I will work on that. It's going to take time, but I believe it can/needs to be done.

Somethings never change

So, big changes. I moved out of the city I have lived in for the last 5 years of my life. It feels so strange, and still very surreal. I keep thinking I'm going to drive back, but for the first time in a long time I don't have to. The next time I go back there it will be the most important day of my young life: July 7th.

But until then, I'm here. In my new duplex which is slowly beginning to feel like home. So far I've seen some member of my family every day which has been nice. Today my mom and I painted the kitchen/dining room. After picking out 'pumpkin spice' I was a bit worried at how it would turn out, but I love it! Pictures to follow I'm sure, once I get all the decorations in place.

My next big tasks are to finish unpacking the remaining boxes and to continue studying for state boards.

I need to keep busy. Last week was really hard. First was all the packing/unpacking and how I couldn't do anything. Luckily I had tons of family around to help. And then comes the little kids I can't lift. I can't pick my goddaughter up to hug her, I have to stay stooped down. I can't lift my little cousin off of the oh-so-dangerous stairs, I have to wait for her dad to come and carry her down. He wanted me to babysit, and then realized I can't lift her in and out of her crib. And Cameron is 7.5lbs. Half way to not being able to be lifted.

My friend wanted me to promise to try and see the positive that can come of this. I didn't make the promise. I said there are no positives.

Goals this week: check out a swim class, unpack all the boxes, register for the boards, apply for 3 jobs

Tragic Endings

Last night my dream was a movie. It was from the point of view of me as a viewer. The woman was a time traveler and had all these subtle struggles in life. She would jump to the future and past, although I don't know if she controlled where she went. And then at the end of the dream, it was present time, and she was lying in bed with her lover. She revealed she had a spinal cord disease, more specifically SM and how her world was shattering.

Yay to me for thinking there would actually be a movie on this. Boo for dreaming of SM yet again. Seriously.

Somewhere in a hospital room

(Aunt Gert and Grandma at Beth's wedding last weekend)

I don't like the term "heart failure".

Heart: a hollow pump-like organ of blood circulation, the center of the total personality, the center of emotion, the capacity for sympathy, spirit, courage, enthusiasm, a vital or essential part, core

Failure: lack of success, nonperformance, an insufficiency, deterioration

A very small fraction of these definitions can be used to describe my grandmother: a hollow pump-like organ of blood circulation, nonperformance

There is so much more to 'heart' than the organ. She loves... so deeply. While her mind deteriorates and robs her of her memories - she still loves. She may not remember that grandpa was moved into a nursing home, but she asks for him every day and usually every 5 minutes. She loves him and she misses him. She knows sympathy and compassion, sparked by the early loss of her kids and also a daughter-in-law. She has courage. She faced breast cancer twice and never stopped fighting. With their chocolate frosting and sprinkles, her Christmas cookies are a vital part of the holiday celebration. Most importantly - she is the core in our family.

So you can say her body is failing and breaking down, but don't for a second say it's heart failure. Because she has more heart than anyone, and in all her years - it has yet to fail.

Is it July yet?!

As I sit here and type my left leg is tingling.... I'm trying to decide if it is another episode or a breakthrough thing. ...to be continued...

So today I started the list of everything I need to ask the neurosurgeon. My general topics are:
-diagnosis
-probable cause
-prognosis
-activity limits
-pregnancy/parenting
-follow-up
-treatment
-disability

We shall see what else I come up with in the next 42-ish days.

I'm trying to be realistic about this appointment, but it is so hard. I view him as my god, the Holy Grail, my savior, etc. etc. He is all-wise and all-knowing. He will be able to answer my deepest and darkest concerns. He will be kind and caring and encourage me about my future. I hope. I hope. I hope.

This week has been plagued by SM nightmares. Nightmares about lifting too much, or being severely disabled. How stupid. Really. I can't use my dreams to escape this reality.

Or try this reality: I need more packing tape. So I went to the store to get tape, trash bags and some snacks for the week. I was good and got fruit, but then I was bad and got soda. I knew what I bought weighed too much. I could just tell. SO I weighed it when I got home. DID YOU KNOW.... a 12-pack of soda weighs 10lbs?! Then pile on the other items and I was over. I don't like this one bit.... it was a 12-pack and one plastic bag. And just seeing other parents in the store with their kids made me realize that I will never be able to grocery shop or run errands without a helper. This sucks. What is my life becoming? I just want to be happy.

ps- It is an episode. It spread to my left arm while typing all of this. Start the stopwatch.

I got a neurodude!

Here is another painting of mine... I'm super happy with it. I had been thinking about it for a while and managed to scrape up what little paint I had left to complete it. Again, painted on a random piece of cardboard.

Also, BIG NEWS in SM world! I have an appointment with a neurosurgeon! Not just any neurosurgeon, but THE neurosurgeon who hosted the ASAP conference last year! I can not wait to meet him. Just a little over a month to go!

On the down side, both of my legs were numb yesterday for roughly 2 hours. I was doing so good too. I'm just worried that this is the start of another every other day spree again.

So I go to go home this weekend. I got to meet Baby Cameron and Baby Alex for the first time. They are both about 7lbs (good holding weight!). I also got to see so many of my little cousins and my niece. I was really hoping that being submersed in babies and kids would re-light that spark in me. The spark of "I can't wait to have my own babies and live happily ever after!". Usually being around kids a lot does the trick. I even had someone come up to me while I was holding Alex and say "You look very comfortable there. Soon enough!" But no, nothing. If anything it makes me want kids less. At the wedding I saw parents holding their child and slow dancing. Later I saw kids being picked up and put in swings, or being held while crossing monkey bars. Or the kid who crashes and falls and cries, and then mom swoops in and picks them up to kiss away the tears. All of this normal stuff I won't get to do. Sure I can do all the stuff with the little 7lb babies, but they don't stay that small forever. I can't believe how I could go from wanting 5 kids as soon as possible to having absolutely no desire or inkling to raise kids of my own. It's really depressing. I hope after meeting with the NS he will renew my hope in my future and bring back the old me. I hate new me.

Summer turned to winter
And the snow it turned to rain
And the rain turned into tears upon your face
I hardly recognize the girl you are today
And God I hope it's not too late
-MB

I'm a big loser.

Syringomyelia ruined one of my favorite shows. Since I was diagnosed, I can not watch The Biggest Loser without crying. Every time the contestants are in the gym I can't help but think: "I can't do that... or that... or lift that much weight... or do that." It is horrible. I'm so discouraged. I can't wait to move back home and get in my swim classes and find a personal trainer. Can't wait.

I'm trying my hardest not to let the negative thoughts on SM ruin babies and children for me too. It's a constant battle.

I hate battling.

My Top 3 Quotes:
1) Reid: It's not. It's got me all messed up. I don't know how to focus, I can't do my job as well. So, what do I do?
Morgan: You use it. Let it make you a better person.
-Criminal Minds

2) Be a best friend, tell the truth, and overuse I love you. Go to work, do your best, don't outsmart your common sense. Never let your prayin' knees get lazy and love like crazy.
-Lee Brice

3) Our misfortunes are none of His doing, and so we can turn to Him for help. Our question will not be Job's question "God, why are You doing this to me?" but rather "God, see what is happening to me? Can you help me?" We will turn to God, not to be judged or forgiven, not to be rewarded or punished, but to be strengthened and comforted.
-When Bad Things Happen to Good People, by: Harold S. Kushner

BSN title holder

I did it! I graduated nursing school. I'm the proud owner of a bachelor of science in nursing.

Graduation was on Saturday May 15. I got up super early for Olivia to do my hair. Then me and my families drove to campus. We met up with all of my nursing peeps on the bus and headed to the Kohl Center. We got to listen to the United States Secretary of Education Arne Duncan who was actually pretty fun to listen to. Then I walked across the stage and Dean May was there to greet me with my diploma. Afterward we headed over to the nursing lunch buffet and then walked up Bascom to sit on Abe. Abe is a very deceiving man... he is very slippery and very tall. Then back down Bascom to the Union Theatre to attend the nursing convocation. This is when I was truly the most excited about graduation... I got to walk across and shake Dean May's hand and take my picture with her. She is such a vision for nursing and very inspiring and dedicated. Then the family left, and it was time to chill.

The whole day really wore me out. The chairs at the Kohl Center were the start of my pain. I'm not sure if it was the chairs themselves or the act of sitting so long. But I had horrible pain in my shoulders and upper back the entire rest of the day. I definitely had a break down before bed and just cried it all out. Everything that I had been thinking and feeling for the last couple weeks.

And now what?

Study for the NCLEX. Pack my crap for the big move. Try and find a personal trainer so I can finally exercise. Continuously look for a job. Harp at the neuro clinic so I can get in to see the surgeon. Reconnect with friends back home. Babysit Cameron while he is still small enough to carry.

I feel my existance is going to be pretty lame for a while.

Happy Birthday!

Happy Birthday Cameron Miles!!!! My cousins Jess and Rob had their baby today! 8:07am. 17.5 inches. 6lbs 0oz. He is such a little peanut! He is the baby who saved me back in October.

I was so excited when I woke up and saw a text from Jess saying she was in the hospital! I started texting everyone under the sun! I got a text from Tricia saying he was born just after 8am. I was just getting out of the shower.... and then I started bawling.

Even though she had a c-section, she still got to see her baby right away. She got to hear the first cry. I would never get that. No matter how many kids I have, I would never get to experience that.

I went over to Olivia's so she could style my hair pretty... she asked me my take on pain meds during labor. I told her I don't have a choice. I told her I don't think I want kids. She told me I'd be a great mom and she hopes I change my mind. I don't know about anything anymore. I can't stop crying. Why would I have kids if I can't do anything with them? If I can't do anything? I hate life so much. And I shouldn't. It's such a happy day for everyone. Why am I like this? I can't do this. I can't do anything.

I'm going to go fake my way through work for 16 of the next 24 hours....some how.

'Off' Day

I hate being alone. The puppies just don't cut it.

Nights are really lonely and really hard. It is so hard going to sleep in an empty bed after having a cuddle buddy for so long. Puppies are only so cuddly. Today was really rough. I was super productive and bought cute new scrubs and canceled cable/internet. I also made a ton of yummy food for working this week. But I still had too much time on my own. I found myself crawling back into bed and just getting really bummed out. And once the thoughts were in my head they stayed. And now I'm done with work and have more time to sit and dwell. Bah hum bug!

Voila!

My masterpiece is complete!!!


So yes, I'm a nerd who paints diseases. (since I don't have a job lined up I may consider doing this full time. hehe) Yes, I'm also such a nerd that I use nursing lingo... the "c" with a line above it stands for "with". It took me a long time to decide what to do with the background, but I'm very happy with how it turned out.

I'm done with classes hopefully forever. Graduation is just around the corner. I went out to celebrate with some of my nursing girls and our favorite clinical instructor. Go Team Tipple!

I'm content. :)

And with a broken wing
She still sings
She keeps an eye on the sky
With a broken wing
She carries her dreams
Man you ought to see her fly

What happened to Miss Independent?

These past two days I've found out some things about myself:

As my massage was beginning Mary went to move my hair out of the way. I lifted my head to help her and she yelled at me! "What are you doing? You don't get to do any of the work! I do all of the work. Nurses always want to help, but this time you don't."

And then when I was lifting chairs at the garage sale, Olivia yelled at me for helping an lifting.

I realized the absolute hardest part of having syringomyelia isn't the chance of not have a perfect delivery or kids, but rather the idea of being dependent. Not being independent. Having to rely on others to help me carry things and do household chores. Maybe someday have them help me walk or move or get dressed. I wanted to become a nurse because I like feeling needed. I love when I can be the one people depend on for survival. When you are sick or injured, I want to be the one you can rely on to get you back on your feet. My whole life revolves around me being the strong one. My friends always come to me for advice when they have problems. My family calls me with medical questions. Patients call me to help them walk for the first time after surgery. I'm supposed to be the dependable one. Not anymore.

Now I sit in the corner and watch. Soon we are moving. Boxes have been piling up for months now. It's going to be so hard not to just grab one and throw it on the truck. I have to sit back and watch others do the work that I was "able" to do a mere month ago. Luckily I have oodles of great family and friends who have offered to help. I want to help. But I can't. Even at work, it is starting to get to a point where I'm going to have to say, 'No I can't boost that patient. No I can't help them up.' I don't practice nursing cuz I went to school for it and need a job. I do it because I love it. I pray that I can find a good nursing job that will allow me to be a dependable person that just doesn't have to lift. I don't even know how I will cope if it gets to the point where I can't walk or even go to the bathroom on my own...

I want my old carefree life back. :'(

But it is never gone.

Maybe I'm to blame for this one...

I got a call this morning that my friend was selling patio furniture at a rummage sale. So off we went to pick it up... literally. I got yelled at for lifting the chairs and a table top. Maybe I should have listened... Within a half hour my neck and shoulders hurt insanely bad. I'm not sure if it was from my massage yesterday. I know some people have flair ups after massages. Maybe it was the lifting after my muscles were so relaxed. Or something completely new. I don't know.

So I was painting flowers today, for Josh to give to his mom for Mother's Day. Well the final product looked like garbage, so I scrapped that. But I still wanted to paint...

So I turned the canvas over and started painting on the boring cardboard background:

I'm not finished. I want to add more. Do I show my heart murmur? Do I use colors to represent the horrible pain I've had all day? Do I add the tears that inevitably follow this condition? Do I show my broken future?

Who paints spinal cord diseases? I suck at life.

Quote of the Day, courtesy of Criminal Minds:

"It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone."

-Rose Kennedy

Gma & Gpa Update

(Gramps & Gran & Princess Cora in 2007)

So grandpa is getting a CT on Wednesday to see if a stroke is the cause of his rapid deterioration. Seems to fit the bill in my mind.

Grandma is back home but family is staying with her every night and hospice will be coming to the house multiple times a week. Eventually her heart failure of 10+ years is going to catch up to her and it will just stop.

(Me and Gramps in 2006 - he thought he looked terrible in this picture, lol)

Again my day is right back down where all the other days have been. The only plus is no pain in my neck or lower spine today, and no symptoms.

Right now I'm so anti-kids. What is the point of having a baby if you can't even hold it? Fuck these last three weeks destroying everything in my life.

I needed today

This morning I had a massage appointment with Mary, a nurse I work with. She has a spa in her house where she performs a combination of Western and Eastern massage techniques. It was at 9:30 this morning. I was sad I didn't get to sleep in on my day off but it was so worth it. It was only $45 for almost 2 hours worth of awesomeness! When we started I still had that same pain in my leg from yesterday, although it was less intense. But by the end of the massage it was long gone. :) Toward the end I was definitely more relaxed and even falling asleep.

When I got home I cleaned up the house because they were going to show it this afternoon. And I took a long hot shower, which really energized me.

I hung out with the puppies most of the day which was nice since it was so crappy and rainy out. When Josh got home from his last day of work (YAY!) we ordered Domino's pizza. We ate pizza and watched TV and fell asleep. We ended up napping for 2+ hours. Now we are just hanging out, with nothing particular to do. Sure I could study, but that would ruin the relaxing awesomeness that is today.

Tomorrow Maggie and Chelsea come to pick up Smalls. And then Sunday Josh is moving out. I'm nervous to be all by myself down here, well I'll have the dogs... I'm so glad to be moving out of this neighborhood. Some sketchy pot smokers moved in down the hall and I want to get as far away from them as possible. Without Kyle and Tracy here I don't know who to go to if I need something, I guess there is always Jared downstairs. Meh, the end of the month can not come soon enough!

Today has been OK

I got my medical ID necklace today. :) On the back side it has my name, syringomyelia: protect head and spine. I've been so paranoid driving without it.

Twice in the past week I've had to take medicine to relieve pain. Today I have stabbing/flickering pain in my right thigh. I had it a week or so ago in my right bicep. It's really weird and extremely irritating. Like pulsating, stabbing, burning... I don't know how to describe it. I'm not sure how closely it's related to SM, but it is there.

Also, I read that sometimes depending on the size and location of syrinxes surgery isn't an option. I'm worried that because of how far spread mine are they won't be able to do anything if need be. I can't wait to get in to see the neurosurgeon.

On a dumber note, my grandma was brought to the ER yesterday because she was having trouble breathing. The entire family was up there with her. Things aren't good. I wish this wasn't dragging on. It really sucks.

On a bright note:

Happy Nurses Day! (damn I need a job)

Also my amazing 90 minute massage is tomorrow morning. It has been well-deserved and very much needed.

Boredom Strikes

I was bored and filtering through all of my past facebook status updates. (I need a life, lol.)

I came across March 28, 2010: "How fast can a year fly by???"

I posted that not because I wanted to be out of school or would be married by then. But because Josh and I were going to stop "being careful" in March 2011. And if a baby happened, it happened. We thought that three months after the wedding would give us time to get ready and to let my body get ready for baby making. Who would've thought that 5 days after that status update I would receive news that my MRI showed syringomyelia? Or that a year from then, I wouldn't be trying to start a family, but rather getting my next round of MRIs to check for syrinx expansion? Or that I would need to find a neurosurgeon at that time to go over and compare my MRIs to say if kids was even viable or if surgery was in my future? Curve balls suck and I was never good at baseball.

Nowhere else to run

I have no more hiding places. Last night I had a nightmare that caused me to wake up in a panicked sweat. I woke up because..... I was carrying too much. I had two dogs I was carrying and my mom told me that they were too heavy. I panicked, and woke up. I'd like to find one other person in this world who has nightmares about lifting. Seriously.

I got to talk to my friend Josh P. in class today, he wanted to hear all about the duplex, etc. His wife just had a baby on May 1st. He is a huge fan of being in love and having babies. One of the first things he said to me was "Go get pregnant." .... bad timing. Which led to the whole conversation about syringomyelia, and Josh making me cry. He's seen me cry a few times. He is such a good friend and a good person.

In class we also had exercises to explore changing health behaviors. We were talking about me and about how SM is affecting my relationship and life overall. Then Liz started tearing up. :( I guess I'm not the only one who has been knocked off guard by this stupid crap. I'm such a good faker. One student, Kelly, was there when I was talking to Josh. She asked how I was so calm about everything. I told them it was all fake. I'm a real good faker. I'll cry if someone else does first, or if they hit the right spot, but otherwise I cry by myself. In the shower, in the car, or when I'm home alone.

Sometimes I want to think this:

"Shared joy is a double joy; shared sorrow is half a sorrow." -Swedish Proverb

But mostly I think this:

"You must understand, the Ring is my burden. It will destroy you." -Lord of the Rings

LotR Wisdom:

Frodo: "I wish the ring never came to me."

Gandalf: "So do all who have carried its burden, but that is not for us to decide. All there is to decide is what to do with the time that is given to you."

Wow. I'm a nerd. :)

Allow me to Elaborate

So I was doing mega searching today...

Some SM chicks have epidurals if their syrinxes are high....mine is a big one high and then through out the rest of my spine. Someone told a story of a person who decided to try a vaginal birth anyway, and then months after delivering was hunched over crippled, and couldnt use her arms and couldn't even carry her baby.

So general anesthesia section it would be. Meaning I wouldn't even be able to be awake for the most important day of my life.

Then I read advice to mothers. They talk about how their children cry and cling to their legs and look up with big eyes and crocodile tears, just wanting to be picked up and rocked and held... but they can't. They can't carry their kids anywhere. How fucking horrible. I could carry my kid until they are maybe 4-6 months old... even before that I wouldn't be able to carry them in their car seat.

I feel very robbed.

I feel bad for Josh too. He is going to have to pick up so much slack. Like doing all of the yard work and snow shoveling. He asked if I would be willing to switch dishes for laundry duty again, but at our new place the laundry is downstairs. I couldn't carry heavy loads, and even then I wouldn't want to have my hands full and trip on the steps. He is so understanding and more than willing to help in every aspect. I just know it will be very wearing on him over time.

I just want all of this to be gone.

Not feeling well

I'm very anti-baby today. I was looking through my friend's labor and delivery pictures. I will never get to have the future I've been planning for so long. Fuck life.

What a pain in the...

NECK!

The past two days at the end of the day, my neck is in excruciating pain. It really sucks. Even the rice buddy doesn't help. It hurts to be up-right. I'm only comfortable laying down, but that just isn't going to fly when I have a paper that needs writing. Also, I've been having random bursts of tingling, but since they don't last a long time I've been not recording them, cuz they are just weird. My symptoms are just about every other day. :/

I'm working on setting up a consultation with a neurosurgeon. Not just any neurosurgeon, but THE NS who hosted and led the American Syringomyelia Alliance Project national conference last year, right here in Madison. :) It's going to be a pain to get all my records to him and such and hopefully he will meet with me. I want to meet with him soooooo badly. I have a mad crush on him just because he is so knowledgeable about my condition. So that is my mission this week: set up a meeting with the most important man in my life!

Also, some good news for a change: Josh and I scored an amazing duplex! It is 2 bedroom, 1 bath, fenced in yard, amazing location right off the highway, fantastic landlord. I can't wait to move in! I'm already decorating in my mind... that is how I pass the time. The puppies are going to looooove having their own backyard!

Well back to writing my paper, along with drugging up and rice buddying-up for my neck. One more day of classes ever! One more final ever! Yay real world and real money!

Black Listed

I applied for a job today. It was through Aurora... so I expected my rejection tomorrow... they just don't want new grads and have a great 24 hour turn around time.

Received my job application confirmation: Sun. May 2, 2010 8:04am

Received my job rejection email: Sun. May 2, 2010 8:49pm

WTF! A rejection in less than 12 hours on a Sunday! What is this world coming to?! Have I been black listed by Aurora for applying too many times?????

*Sadly this is the highlight of my day* haha. Closely followed by a blind guy saying to me: "It was nice seeing you."

Hopelessness

I'm feeling so hopeless about life.

I was so looking forward to work today. NOT looking forward to my boss making me cry. I had emailed her when I found out about my back to give her a heads up about what was going on. She called me into her office today. If I can't lift 50lbs, I can't work. *cue tears* We talked about it quite a bit and decided that if I can avoid lifting and it doesn't hamper my work, that we will keep hush hush about it. I need to work. Working helps distract me. It lets me care about other people's problems instead of my own. Not to mention in 1 week, Josh will be moving out and I will be living alone (with the pups). I can't imagine sitting around here all that time. I'm supposed to work full time for a while and not only do I need that money, but I need that for passing time. F*** syrinxes!

Also, I want a second opinion. I want to talk to a specialist. I want a more definite answer for all of this crap. I want specific guidelines as to what I can and can not do. I want a more set look as to what my future might hold. I'm going to try and set up an appointment at the Chiari Center in Milwaukee. (Thanks Kelly for finding this.) Besides should I end up needing surgery, this is where I would probably go. I want a second opinion so I can maybe set my mind at ease a little more.... or at least have a better grip on this.

My symptoms are more persistent. Last month they were once a week. Right now they are hitting rapid fire every other day. Not cool. I hope it isn't syrinxes elongating. I like being able to walk, thank you.

I hate this feeling. Not to mention family stress and emotional crappiness. Life enjoys crapping on me a lot.

Another day like Yesterday

I haven't been able to talk to many people about what is going on. I don't feel comfortable with it. I don't want fake sympathy. I can't deal with it.

The people I have talked to keep saying the same thing: Don't worry, live your life. I don't think anyone realizes what my life has been like. There is so much I should be concerned about doing. Every time I cough or sneeze I wonder if my CSF jumped. Every time I bend to put my shoes on or to leash up the pups, I wonder if this type of bending is too much. When I stumble a little I have to wonder if I'm clumsy and tripped, or if it is a new and worsening symptom affecting my gait. Or if I drop something, is it a sign of muscle weakness? How can I not worry when randomly throughout the day my limbs go numb? It's a constant reminder of what is wrong. Every time I see a pregnant woman or a cute kid, I see the potential of never having those things in my life. I see people running on campus, and think about how I can't join them. As I pack things to move, I think about how I won't be able to help load the truck or rearrange furniture. I can never forget about having SM.

Song for today: Welcome to my Life by Simple Plan

Today is another tough day. I woke up from my random assortment of dreams (panic-filled dreams, followed by dreams of spending time with a good friend). Waking up was hard. I feel safe in bed. I spent a little time talking to that same friend from my dream. They know more about me than anyone else and are the only person I've been able to express all my true emotions to regarding all of this. I wasn't hungry, but forced myself to find some lunch. I just really want to go to work. There is always so much going on that it helps to distract me. Even then, I still can't move the chairs or help readjust a patient in bed. I don't know what I will do if I don't find a job for after graduation. I will be sitting around just like I am now. That won't help anything.

Let's try the being positive thing... Three things that make me happy: 1) I was able to open the pickle jar... yay for muscles working. 2) My rice buddy from Irene, it helps with my neck pain and helps me fall asleep every night. 3) Packing to get out of this city. I just want to be close to home. This isn't my home. Home is where the heart is, and my heart is in GB...

Tomorrow's Hopeful Light

In the middle of

life's raging storms,

We stand, and do not fall,

When we're secure

within the knowledge

That our courage

gives its all.

No matter what

the battle be,

Our heart is strong

and brave,

And every ordinary day

Holds memories to save.

What beauty fills our spirit

When we face the

deepest night,

We do not fear,

because we see

Tomorrow's hopeful light.

-Beverly Kaye

This was the poem on the card I received from Jim and Judy. The inside said "May you look forward to happier, better tomorrows. Feel Better Soon." "Thinking of you often! Take care of yourself- Love, Judy & Jim"

I needed this today. It was a rough day.

Debbie Downer of a Day

I hate how I feel. I'm really exhausted constantly (hopefully getting my Vitamin D back on track will help) and I am super down about life.

I need to lose weight. Simple fact. I'm pushing the envelope of my BMI. I have a wedding coming up. I want to look and feel good. Right now I don't. I'm so stressed lately and am craving my comfort foods, none of which are very healthy. So 1) I eat like shit. And 2) I'm a slug. With everything going on I have no motivation to exercise. Josh has been playing basketball and riding the bike. He is seeing results, especially in his lung function. This is pushing him to keep working out and being active. I can't do what I want to do most: run. I cried when I was watching The Biggest Loser last night. There is a man on that show who weighs 358lbs and he ran the 5k. I would give anything to be okay to run like that. Running was my big stress reliever in the past, but it was taken away from me. According to the SM forums, my safest exercises are walking and swimming. I'm not supposed to do sit-ups, or push-ups, or running/jogging, or bending (ruling out a lot of yoga).

Walking and swimming.

I looked into water exercise programs. The CP Center offers a lot of classes that I could take. What I would really like to do is get a gym membership. I want to hire a trainer to meet with me once a week or once every other week. If they know what my limitations are, then they can help me find exercises I can actually do.

What I should be doing right now is taking the dogs for a walk. Or writing my paper. Or studying for my exam. Maybe I'll get motivated to do any of those... maybe not.

I have to figure out how to get the mindset to take control of my life again. I know it's what I have to do, I just don't know how to.

Good Things Come in Small Packages

Yesterday I was watching my soap opera (*hides face in shame*) when there was a knock at the door. I figured it was a neighbor or someone. The dogs started barking like crazy! I opened the door and saw no one but a small brown package was leaning against the door. It was from Amazon. I didn't order anything from Amazon...did Josh? Normally our orders are addressed to him but this one was addressed to me. I tore into it. (The dogs helped.) I pulled out a book: The Official Patient's Sourcebook for Syringomyelia. The receipt was tucked in with it. It was from Kelly and told me to "Punch SM in the face!" :) I instantly teared up. When I talked to her later that night she was telling me how she had a hard time researching this disease and figured I might have had trouble finding reliable sources too. So this book lists TONS of credible websites for information on the disease, clinical trials, support centers, etc. It contains everything you would ever try to look up on the internet regarding SM and where to find it.

I feel very loved. Kelly is always so busy with grad school and work, and yet she took the time to look online for things... get frustrated... think of me... and order me a book so I don't have to face the same frustrations. I still can't believe it. After all the shittiness of life lately, it's the little things that bring a ray of sunshine into a dark place. So again... Thank you Kelly.

Back to the bad. Left arm tingling again today. Lasted for just over an hour. Lame lame lame. I'm really afraid that one of these times the tingling will start and not go away. That is my all time biggest fear right now. It would mean my syrinxes are progressing. It would mean that despite surgery the tingling would remain. A constant reminder of what is wrong with my body.

I keep coming up with other names for this blog:

-Life Walking on Eggshells

-Welcome to my World in a Bubble

All things about how limited I feel. I watched The Biggest Loser tonight. The contestants ran a 5k. I will never run a 5k again. I will never run again. :(

At a loss...

My left arm was numb again yesterday. Bleh.

It is hard to be super concerned with myself right now. All of my prayers are for my family, not for me.

My cousin Bob is really sick. He cut his finger while sawing a tree branch and went in to get it checked out. Despite the antibiotics they gave him he got a blood infection and his potassium is really high. This put him into kidney failure and he is on the verge of heart failure as well. Thing are really not looking good.

Grandma D. was taken to the hospital last Thursday due to fluid retention from her ever persistent heart failure. The doctor said it was a miracle she was alive. Her heart failure is really getting bad and with the added stress of grandpa being gone and her Alzheimer's - things aren't good. I visited her on Thursday night along with a bunch of other family. She is like a broken record. She keeps forgetting where grandpa is and why he is gone. She doesn't understand how sick they both are.

Grandpa D. has been in the rehab facility for about a week now. I went to visit him yesterday before coming back to school. It was such a drastic change from last week when he was still in the hospital. He was sitting in his wheelchair in his room, with the CNA assigned to sit with him to make sure he doesn't fall. The minute he opened his mouth I started balling. He is so confused and gets really agitated. He whines and cries and makes no sense. He got really worked up and started crying "pussy cat, pussy cat". It reminded me of Julia when she throws tantrums, or a little child, or one of the rambling guys on the psych unit. Once we started asking him about working at Riverside he snapped back to himself and was talking normal. He couldn't tell stories but gave us a line or two. We took him for a walk down every hallway and in every common room. He couldn't converse with us at all. Occasionally he would get really worked up or confused. Sometimes he would fall asleep for 30 seconds. I cried the entire time I was there. Before we left I gave him a hug and told him "I love you." He didn't hear me and asked "What?". So I repeated "I love you." and he said "Thank you." :)

I hate seeing him suffer like this. I cried the entire ride back and for about an hour with Josh when I got home. Then we watched Criminal Minds for 9 hours straight. That was a good distraction and it was just nice to cuddle as a family with him and the puppies.

I always said that if something was going to happen to Grandpa that I would grab a judge and get married right in his room, just so he could be there. He has been the most important person to me for a long time. But I'm realizing that he and grandma probably won't be around for my wedding in 8 months. It would be better for everyone if they weren't. The way they are suffering is unbearable to witness. Sometimes life can be really cruel.

F*** this!

I freaking hate syrinxes and not being able to lift anything!!!!
I was supposed to have an interview today for my non-nursing back-up job. I had the cards majorly stacked in my favor. I worked there, I volunteered there, I was interviewing with my aunt's best friend. But I can't fucking lift.
They gave me the job requirements while they got set. I would've had to go through a physical assessment at the hospital to make sure I'm physically able to do the job. The minimum requirement was lifting/carrying 25-50lbs. Right away I told them what happened. They talked to HR to make sure that they were being totally legal. There is no way for me to avoid lifting or for them to accommodate me. So there was no interview. I left in my stupid monkey suit and cried all the way home. I fucking hate my life.

My Rocks

As for my latest episode of N/T... it lasted 3.5 hours and afterwards my legs felt sore/tight for a bit despite movement.

Things have been really rough for me lately. I've been so down in the dumps and constantly plagued by these new developments. Until tonight I haven't really laughed or enjoyed life, but Kiki and Coco changed all of that. ;) Luckily I have a huge group of people who have been wonderful this last week and even before that. I haven't told many people about what is going on; it gets tiresome repeating it over and over. But those I have told have been nothing short of amazing. So here is the run down:

Josh: Right away when the NP said pregnancy might be too much of a strain on my back I told him that if having biological children was really important, that he could opt out now. His response: "We can adopt and help other kids." He is a keeper. When he was in town he would attend all of my appointments like a trooper. He did a great job taking care of the dogs and the house while I was away for appointments. When I got back he was waiting with a potted gerbera daisy and tons of love. He researched insurance options for when my coverage runs out. Most of all he has been there for me, even when he isn't exactly sure what to say or do. Him just being there helps. I know more than anything that I made the best choice of my life when I said "yes".

My Parents: My mom has been attending appointments with me when Josh can't make it. She has been keeping family updated, so I don't have to tell the same story over and over. And she gives good hugs. :) My dad is good for long and concerned phone calls. He has a neurological history so this really hits home for him for me to be going through all of this testing and uncertainty.

Jessica: She is the only pregnant woman I don't resent at the moment (I'm bitter at life.). I'm so excited for her little one to arrive and it distracts me from everything bad. She kept me busy when I would've had down time by going out to eat and celebrating at her baby shower.

Denise: She has shown concern for me despite her own medical drama that was occurring at the same time. She also continues to be such a great friend to my mom, which is always a good thing.

Andrew: He stopped by for a short visit one evening right after all of my testing. He was genuinely concerned about everything going on and was such an easy person to talk to and get everything off of my chest. His hugs and support helped a lot during that time.

Jim and Judy: While I didn't intercept their calls, I heard about them. They were frequent callers for updates from my parents. It means a lot.

Jim and Fawn: They have shown so much concern through all of this. They are always sensitive to how I'm doing and continue to dish out their undying love and support.

Mike: He said it best right away after my first bad phone call, "We'll still take you." I almost cried.

Em: She gets freaked out if I don't update her often enough or call enough. Her actions remind me how welcome I am in their family.

The Stouts: Continually have outpouring concern and well-wishes. They are the best set of 3rd grandparents anyone could ask for.

Bobby: He makes me laugh. Obviously I'm falling apart because he left town.... Oh what shall I do? Haha! He really brightened my days when he said he will be able to get out of training for our wedding! Best big brother ever!

Mama B: Sent a really heartfelt message. She is such a wonderful and caring person for being so many miles away and only seeing me once a year.

Kelly: Ever since test one, she "badgers" (in only the best way) me with texts for updates. She continually sends me funny things to help pick me up. Her electronic love is definitely felt. We had long talks about pregnancy and she knows how strongly I feel about being a mother... next time we get together it will include drowning the bad things in ice cream and doing rain dances for happy future outcomes. She is continually there for me even when I don't realize I need someone.

Ashley: I was having a horrible day and cancelled our dinner plans because I wanted to curl up in a ball and hide from life. But she is unstoppable and before I got home brought over another gorgeous gerbera daisy (my plant table has grown quite a bit!) and Culver's ice cream. (She even brought some for Josh because she is awesome like that.) It was exactly what I needed to get through the night/not feel so alone. We have since had our dinner and plans for future yummy-ness. It helps having someone in town who knows me well enough that we don't have to talk about bad things and she just knows how I feel.

Nikki: She was able to grant me a very good and distractable wish - to meet her boyfriend. That was nice, and so was he. We got to sit around and gossip and it felt just like it did back in the day before things were so complicated.

Cassie: Oh my goodness. When I sent her a message to tell her everything that happened, she balled her eyes out and started texting me rapid fire, which turned into an hour long phone call. I never knew I had such a good friend in her. She is a really diamond in the rough. I definitely approve of her to be with my brother.

Ashley: Between the two of us, we are a disaster right now! She has some nasty medical issues going on as well, but can still pour out the sympathy. I'm so glad we grew closer these past few years. She is so understanding of everything I'm going through, and overall just an amazing person to have on hand whenever I need someone to talk to.

Olivia: She freaked out when I didn't call her after a few days to give her an update. She has been so supportive. She also got me to laugh till I cried tonight. We had such a good time at dinner; it's what I've been missing lately.

Kim: She has been through the ringer herself and knows what types of fears I've been trying to suppress. She called right away to assess how I'm holding up, and then to tell me about the chance of a misdiagnosis....she is such a nurse! I love her to death!

Maggie: She was great to talk to while I drove up for more testing. She also lets me come over to her place when I really need a distraction. She is overly accommodating with shows/food/a cute puppy. Her apartment is the perfect place to escape to.

There are a ton of other people who have been there and been supportive that I feel need to be mentioned: Amanda (for listening despite her own problems), Clyde (for the words of encouragement), Dana (for checking in on me), Ashton (for being the MOST inspiring/encouraging), and other aunts, uncles, cousins, and grandparents.

I'm really blessed to have all of these people in my life. I'm blessed.

Itty Bitty Now, Big Post Later

4/21/10

12:15pm - still going strong an hour later

N&T bilaterally in my legs; no weakness, loss of sensation, paralysis; started while watching TV; continues while walking and doing things

(note to self....lower back of neck pain persisting for the past 3 days. try to score a rice buddy from Irene.)

Will post more later tonight to help procrastinate important things in life, like papers worth 30% of my grade.

What CAN I do???

So I've been browsing websites to find out exactly what I can or can't do that would impact my condition. The NP was so vague on the phone that I'm at a loss as to what I can really handle. Here is my GIANT list of Don't's:

NO high-impact exercise, such as running and jumping in cases associated with cervical instability.

NO activities involving Valsalva maneuvers

NO roller-coasters, 4-wheelers, skateboards, horseback riding, motorcycles, etc. Anything that “jars” your head and/or spine is a definite no-no.
NO water skiing, snow skiing, snow boarding, sky diving, bungee jumping, etc. (Just trying to cover all the basics – you get the idea.)
NO contact sports.
NO Chiropractor!- Especially at the neck for chiarians and for those with a syrinx, no deep tissue in the area of ur syrinx.(The chiro should be well versed on Both CM/SM)
NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.
NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.
NO moving around in the dark!
NO putting yourself into stressful situations or relationships.
NO twisting your spine – try to keep a good posture with your spine lined up and straight.
NO bending over. lower yourself to the floor by bending your knees – not your back.
NO sudden spinal/neck movements.

NO using the hair wash sink at the hair salon.
DON’T try to keep commitments when you’re feeling badly. Listen to your body.

NO excess coughing or sneezing

NO weight lifting

So, I just went to the asap.org forum. It is a site for people with syringomyelia. I posted a new topic, so other people can give me feedback as to what they were told regarding limitations. I hate having so many unanswered questions. I'm so stressed and feeling down in the dumps. I have a decent support system going right now, but more on that later. I need to go try and unwind before working all night.

What next?

Picking up where I left off...

The NP called me back. Unlike past times I've met with her, she seemed rushed and distant. Maybe because she wasn't getting paid for this encounter as she would with an appointment in the clinic. Maybe because she wanted to get out of work on time and get home for dinner. Either way, I felt she didn't give me all of the answers/attention I needed to ease my mind.

Q:Where and size?
A:C6-C7 2.5 cm syrinx, and syrinxes mildly throughout my thoracic spine
Q:Activity Limits?
A:Straining, heavy lifting, shoveling heavy loads, the Valsalva maneuver, etc.
Q:Symptoms I should be watching for or that I should come in for?
A:Balance disturbances, weakness, loss of sensation, bowel/bladder issues, swallowing trouble, and change in type or frequency of symptoms.
Q:Frequency of MRIs and Dr. visits?
A:Follow-up Dr. visits every 6 months, with annual MRIs to check for expansion
Q:Impact on pregnancy?
A:I would need to consult a neurosurgeon prior to getting pregnant. Pregnancy and delivery can be a huge strain on the spinal cord. Surgery may not be necessary but they would be able to best recommend a course of action.
Q:Any doubt it could be something else?
A:Other various neuropathies are possible but unlikely at this time. If things progress the next step would be to do a EMG.

She also made note that my syrinxes are not caused by the Chiari malformation as many cases are. Mine may have been caused as a result of trauma from my car accident years ago, or could be idiopathic.

That is all I got from her.

My mind is still racing. She told me not to worry and not to look stuff up online. But how can I not? She was fairly quick and vague with her responses. So here is what I've found that concerns me:

- Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing or straining. (http://www.ninds.nih.gov/disorders/syringomyelia/syringomyelia.htm)
Really? Coughing? Each time I have coughed since I read this the first thing that goes through my mind is: Are my syrinxes expanding???

-Recurrence of syringomyelia after surgery may make additional operations necessary; these may not be completely successful over the long term. (http://www.ninds.nih.gov/disorders/syringomyelia/syringomyelia.htm)

Awesome....

-Pregnancy and vaginal delivery can be a relative contraindication for patients with syringomyelia. Pregnant patients may require special care because pushing and straining during vaginal delivery can potentially enlarge a syrinx. Although a C-section may be recommended, patients should have a full discussion with their obstetrician. (http://www.spineuniverse.com/conditions/what-syringomyelia)

Pregnancy a contradiction.... vaginal delivery a contradiction.... recommended C-section.... (not mentioned here but other areas: avoiding epidurals....) There goes the majority of everything I ever wanted in life. 4 to 5 kids will not be likely under an anesthesia-aided c-section, it is barely recommended to have more than 3 c-sections and a large part of that is how one's body heals. What about working with a midwife? Can I still have the water births I've wanted? Will the water relieve spinal strain, maybe with the help of pain medication to avoid the CSF increases associated with labor pains? I guess first of all... can I even safely carry a baby to term without risk of destroying my spinal cord?

• 
  

-About 20% of all patients died at an average age of 47 years. (http://www.arachnoiditis.info/website_captures/syringomyelia_copyfromweb.htm)

WHAT?! I have a 1 in 5 chance of dying before the age of 50??? Are you freaking serious?! I need to find out more on this...

-Shunting of syrinx cavities, when performed alone, historically has been complicated by a high rate (up to 50%) of shunt failure or blockage and recurrent cyst expansion. (http://emedicine.medscape.com/article/322348-treatment)

Another lame treatment.

-Avoid activities that may make symptoms worse
If you've been diagnosed with syringomyelia, avoid any activity that involves lifting, straining, or putting excessive force on your spine. These activities include, among others: Playing high-impact sports, such as football and rugby, Riding roller coasters, Skydiving, Straining during a bowel movement, Excessive coughing (talk to your doctor about treatment if coughing persists), Lifting anything that weighs more than 15 pounds (http://www.mayoclinic.com/health/syringomyelia/DS01127/DSECTION=lifestyle-and-home-remedies)

High impact....does that include running? On some websites it does. No more rollercoasters?! Again with the coughing... And not lifting anything more than 15lbs!!!!!! How is that possible? My purse practically weighs 15lbs... okay, well maybe not that much. But still. How can I lift weights to maintain my physical fitness when things get worse?

I don't like any of this. Not at all. Please... if you are reading this and know something helpful or can help clarify things for me - I would more than appreciate answers and advice.

The "S" Word

I'm 23 years old and I have syringomyelia.

Let me start at the beginning of all of this...

Back in the fall of 2009 I was tutoring one day and half of my body when numb and tingling. It was my arm and leg on one side of my body. At this time I can't recall which side. I thought it was the weirdest thing ever. I called my friend Clyde on my way home because I knew he was around and available. I told him what was going on just in case I crashed, then at least someone would know what happened. I made it home safely and within the hour it cleared. I haven't thought about it in months.

Fast forward to March 13, 2010 at 3am. I was sitting at the kitchen table browsing websites for a new digital camera. And instantly, my left half of my body when numb and tingly. A greater portion of my face, my entire arm and entire leg. The first thing I thought of was a stroke. I ran to the bathroom and looked into the mirror. No facial droop or asymmetry. I could still move the affected areas and feel sensations. I put an end to camera shopping and went to bed. I woke Josh up to tell him what was going on. His first words were "just like last time?". And then it hit me, it was very similar to that one day in the fall. I stayed awake for an hour, hoping it would disappear like last time. It didn't. I cried myself to sleep still numb and tingling.

The next morning it was still there. By noon, almost 9 hours later, my face felt normal and it started resolving in my shoulder and upper leg. I went to work for 3pm. The best part of working at a hospital is having professionals at my disposal to question. By the time I was at work it was only affecting from my elbow down to my fingers, and my knee to my toes. My elbow and knee joints felt dull and throbbing. The nurses on my floor threw out suggestions of Bells Palsy or a pinched nerve, but talked themselves out of it. So I asked a surgical resident. He thought it was probably a brain thing given the distribution and that it affected my face. He suggested I see a neurologist. I went to bed at 2am on March 14th, only to wake up at 11am feeling fine.

March 15, 2010
3:45pm - 6:00pm
My left arm from my elbow down goes numb and tingling while I'm sitting in class. It remained that way while walking to my car and driving home. I'm beginning to get suspicious that only my left side is affected by these spells.

**I should note this numbing and tingling isn't like when your arm or foot falls asleep. The numbness is not as intense and I can still feel touch, and the tingling isn't painful like the pins and needles sensation.

March 26, 2010
5:30pm - 10:15pm
Both of my arms go numb and tingly from my elbows down. It started with my right arm and within a half hour my left arm followed. I was simply sitting in a car, riding around and viewing apartments with my friend. I opted out of babysitting the next morning not knowing if this episode would last into the morning. But at least this time my right arm was involved... that is a good sign... maybe.

I made an appointment with my doctor for March 31st, first thing in the morning. Both her and her nurse practitioner ran me through the gamut of neurological functioning tests. Then they ordered up blood work to look at all of my vitamin levels and hormones. They also ordered up an MRI of my head and neck to look for signs of Multiple Sclerosis which is common in women who are far from the Equator.

Friday April 2nd, I had my MRI. That was a whole new experience for me. They gave me headphones tuned into a great country station. How they ever expected me to hear the music was beyond me. MRIs are LOUD! Every scan was banging and pounding in my ear. And there were different sounds. Some sounded like an alarm clock or fog horn, while others were like a jackhammer in my ear. I like to call my apparatus my "space suit" since I had my head and neck locked in some sort of helmet to prevent movement. The guy performing the MRI was so amazingly nice and really made sure I was comfortable with everything going on. Then they injected me with contrast and took a few more scans and I was on my way, only 1 hour after arriving.

Later that afternoon, I was up visiting my future in-laws, when I got the call. My blood tests were fine, just a low Vitamin D level, which is explainable after a long snowy winter. But my MRI wasn't so normal. They found a "spot of concern" on my cervical spine. At the time they thought it was either 1)a cyst formation or 2)demyelination (aka MS). They pushed me in with the nurse practitioner at the neurology clinic for the following Tuesday.

Tuesday April 6th, and I'm in the neurology clinic. The NP runs me through a more extensive gamut of neuro function testing. She notes that my reflexes of my lower extremities are hyperreflexive. (I googled this to find out that is it congruent with spinal cord injuries...hrmmm.) She mentions a syrinx, but at the time I wasn't listening well enough to say it much the less spell it. She orders an MRI of my thoracic spine and 2 tests: evoked visual response (to scope out my optic nerve for MS signs) and median somatosensory-evoked testing (to see how well my spinal cord conducts through this area).

Friday April 9th, (Keep in mind between all of these appointments I'm driving 2.5 hours each way between school and home. My poor car.) my second MRI. This one was roughly a half hour long. They really cranked the music for me which was much better. The head radiologist was there and after reviewing my scans decided he didn't need to add contrast. I thought this was good and that they didn't see anymore areas of concern. (I'll find out later I was wrong.)

Tuesday April 13th, bring out the electrodes. When I arrived the woman put about 20 red marks on my scalp, grinding her pencil through my hair hard enough to leave a mark. It hurt, I was not a happy camper. For my visually evoked test they covered one eye at a time and make me look at a flashing checker board on a TV. This would tell them how well my optic nerve was sending images to my brain. For the somatosensory test they hooked a small stimulator to my wrist. The stimulator made my thumb twitch which was fascinating to me. This test measured how fast the signal would go from my wrist to my clavicle to the back of my neck to the top of my head. They performed this on both sides.

All of Tuesday they didn't call with results. Wednesday the 14th came and I stared at my phone all morning. I couldn't sit still in class. Around noon, I called and left a message asking about the results of my tests. Around 1:30pm, a random clinic worker called to say that my electrode tests were fine, but my MRI showed syrinxes mildly throughout my thoracic spine. What did this mean? I had no idea. I told her to relay to the NP that I had many questions and would like to speak with her. My afternoon class was filled with more anxiety and staring at the phone.

Finally she called while I was tutoring. (back where it all began.) I grabbed my list of questions and started rambling and taking notes.



I'll continue with this post tomorrow. I'm exhausted after a long day at clinical and have to be up early for classes. I'm glad I've found some place to lay out everything that continues to cloud my mind.