Tuesday, October 1, 2013

Slice of Life: My World Turned Upside Down

Ruth and Stacey at Two Writing Teachers
host the Slice of Life every Tuesday.


Three weeks ago, I came home from school after a long day on my feet, took off my shoes, and put my feet up.  My feet felt weird.  They were feeling kind of swollen but also tingling and like they were asleep.  I figured they were just tired and mad at me...after all it was not too far into the school year and I was not yet used to being on my feet all day.  I went to bed a little concerned but not too worried.

Then I woke up with tingling and numb feet on Tuesday.  I still was trying not to be too concerned, there were a number of things that could explain it.  I had a text conversation with my sister the doctor and decided to just relax and go with the flow.  But she warned me to pay attention if the numbness and tingling started spreading.  Of course, later that afternoon I started to have tingling in my lower legs. Now, I was a bit worried.  I went home and stayed off my feet. If pure willpower had been enough to cure me, I would have been cured.  I did not want to have to go in to the emergency room.  I decided that it wasn't really spreading so I chose not to go that night.  (I was also refusing to be sick because I had organized an author visit at school for the following day)

Wednesday morning I woke up at 3am to the weirdest sensation ever.  My feet felt like they were going to explode out of their skin.  At this point, I was worried.  I requested a substitute and went in to urgent care.  There they ran a bunch of tests, but diagnosed me with neuropathy.  There wasn't anything they could do for it so they sent me home with a new vocabulary word and directions to follow-up with a neurologist.  I went to school at 10am and was able to host the author and it even went better than it would have because my class had the substitute teacher and I could be there just for the visit.  I had a great time meeting Jasper Fforde and seeing students that were really excited to meet a real author (from Wales, no less).

Did I mention that I was walking funny and losing my balance easily?  The three flights of stairs to my classroom seemed extra daunting so I was glad that I wasn't working.  I went home and rested and tried to get a hold of the neurologist for a follow up appointment.  No dice.

The next few days were normal, except for the fact that I couldn't really feel my feet at times, or they were extra tingly and uncomfortable at other times.  Then, on Friday,tingling and numbness started in my groin area.  I talked to my sister the doctor again on Sunday and she insisted that I immediately go to the emergency room.  I guess numbness in that area can sometimes be spinal cord compression and this was something to get figured out.  So, I headed off to the hospital.  They did a whole battery of tests on me.  The doctor in the ER wanted to order a STAT MRI, but didn't think they would let her do that.  This hospital was small and there wasn't a radiologist in on Sunday night so they didn't do the MRI.  She sent me home with a prescription for the STAT MRI and instructions to expect a phone call the next morning to schedule it.

Now I was feeling awful because I was going to miss school for the second day in the first three weeks of the school year.  This was not the way I wanted to start the year.  I stayed home on Monday so that I could schedule the MRI as soon as possible.  I got the appointment for noon on Monday and then played the waiting game.  I got to the hospital, registered, and was brought back to do the MRI right away.  I changed, locked up all my things, and headed off to the MRI machine.  Then, they handed me some earplugs.  I should have expected it but I didn't.  I get super nervous when I can't hear well. Then I was lying on the table and the technician put a cage-like thingy over my head.  I got more nervous. Then, I asked how long this was going to take.  She said about an hour.  That was the last straw.  I couldn't do it.  I did not know I was going to be claustrophobic but this was not happening.  So I had to leave. Because it was an MRI that was ordered by an ER doctor, I didn't have anyone to ask to reorder the MRI with sedation or with anxiety meds.  I went home frustrated and started calling my primary doctor, the emergency department where I had been seen, and the neurologist that I was supposed to follow up with.  Two hours later, when I hadn't gotten anywhere with those doctors, I decided to go back to the ER.  This time, I went to a bigger hospital.

By this time, it was already Monday evening.  I had another long wait in the ER, but because I still had the numbness in the groin, I was a higher priority with the triage and didn't have to wait long to be brought back.  This doctor did not waste time, she reviewed everything that had been done at the other ER and ordered the MRI right away with anxiety meds this time.  She decided to get a scan of my brain as well as the lumbar part of my spine.  When the results were back, the doctor consulted my primary doctor and decided to admit me to the hospital.  They had found lesions in my brain scan and wanted the neurologist to take a look.  Before bringing me up to the room, they decided to do a spinal tap so that the results could be back in the morning.  On Tuesday, the neurologist ordered yet another MRI of the rest of my spine while we were waiting for the spinal tap results.

Tuesday was a long day of waiting.  I did not get on the MRI schedule until the evening so I spent the day watching HGTV and trying to read a little bit.  I think I also slept some as well.  On Tuesday night, the neurologist called to talk to me and let me know the diagnosis.  He had mentioned it in the morning, and I knew that is what they were trying to figure out, but it was difficult to get the diagnosis.  I have Multiple Sclerosis.  I am not crazy.  I am not a hypochondriac.  Those weird symptoms that I always seem to get have a cause to them.  It explains a lot.  But it is not a fun thing to find out about yourself.

Being a nerd, and having a doctor for a sister, I have a lot of research to do.  My sister has already sent me multiple articles to read.  I know what my genius hour project will be about.  I have done some reading but this week was mostly about getting back to normal and catching up at school (I missed the entire week last week).

What has been the most difficult about this time is that the world continues to revolve while my brain stalls a little bit and I just feel like crawling under the covers and hiding from the world for a time.  I know this is not the worst thing that could happen to me by far, but it takes me from the world of healthy people into the world of people with a pre-existing condition.  I have an auto-immune disease. That is hard to fathom.  It is hard to accept.  But I will get there.  I just need a little time.  For now, I hope this flare-up goes away and I can focus on moving forward. One day at a time.

26 comments:

  1. oh my goodness...thank you for writing this...I will pray for you...I'm sure this is very difficult for you to take in right now. I do have a friend who went through this and was diagnosed about 18 years ago...she is doing great, but has been on medication. xo

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    1. Thank you for the kind words and the prayers. It is hard to take in but there are so many people that are doing so well that there is a lot to hope for.

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  2. I am glad that you were able to find out what was happening to you. But I am also sorry that you have to go through this. Research is good! Don't give up!

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    1. Thank you. It was good to figure it out even though it isn't the best thing to find out.

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  3. Thank you for trusting us with this slice. Your last paragraph is so powerful. You are at the point between. It is a scary place to be and you seem to be handling it with grace May your research and your understanding lead you to a place of acceptance and peace. Keep writing -- it will be good for your soul.
    Ruth

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    1. Thank you for your kind words. I will keep writing. It was definitely therapeutic to get these words down.

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  4. Oh, Andrea, this was a hard post to read. There are definitely many, many people who do well with MS, though, and Jaana said it well about the research. Keep sharing how you are doing and feeling all of our positive thoughts.

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    1. Thank you Melanie. I am definitely hopeful that I will be one of those people that does well with it. Research is definitely on my agenda for the next few months and I will definitely share. Thanks for the positive thoughts.

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  5. What strength you have even though your life has been turned upside down. Many more prayers will be sent your way because you wrote today.

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  6. I don't always have the chance to read your blog, but have enjoyed it in the past because we both love those 'middle-school' kids, Andrea. I'm sorry for such a stressful and strenuous week, and am sending a big hug your way. I'm glad you have a doctor sister and hope that will be so helpful and supportive. You sound like you want to put a big strong face on this, but this group will help if you let us. Keep on letting us know what's happening & how we can help. You are courageous to tell us about this big thing happening! Best wishes to you!

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    1. Thank you so much for the kind words. I will continue to write about things and I am definitely feeling the supportive community.

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  7. Andrea, what a few weeks you have had. Melanie pointed me in the direction of your post. After reading it I am more in awe then ever that you choose the rose colored glasses. I'll be praying for you. I admire the bravery in your writing here.

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    1. Thank you for this. I will continue to use those rose-colored glasses because who wants to live in a world full of negativity? This community is so supportive and I appreciate the prayers.

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  8. Thank you for sharing your story, your story of unknowns and beginning, I hope you will continue with your story as writing can allow you to process. I appreciate you trusting us and may you be encouraged.

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    1. Thank you. I will continue to write in order to process my feelings.

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  9. Wow, it just goes to show that life takes its course and we just have to take on whatever challenges are handed to us. Thank you for sharing; I know you'll be on the winning side of this battle.

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  10. What a difficult week you've had. I'm glad that you were able to share this experience. Please know that many of us are pulling for you as you walk this path. Your closing words are so powerful . . . I'll be praying for you as you move forward one day at a time.

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    1. Thanks for the prayers and the kind words.

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  11. I know that I post a lot of stuff that nobody actually cares about, but you are my niece, and this is VERY IMPORTANT! Please, this is only about 17 minutes long, but please view this: http://www.youtube.com/watch?v=KLjgBLwH3Wc

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    1. I will absolutely take the time to watch this. Thank you for sending it my way.

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  12. Wow! This will be a huge change in your life, but it will help to finally know what you are fighting. Thank you for sharing such a powerful slice of your life - and I hope we hear some good news about how treatments are going soon.

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    1. It is definitely a change but it is good to know what is going on. I will absolutely share more as I move forward.

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  13. Hi Andrea, Jon(Kahl) sent me this link. It all sounds so sadly familiar. If you ever want to talk, feel free to contact me. I will keep you in my thoughts and prayers. - Carol

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    1. Thank you Carol. I definitely have thought of you often as I have been getting my head around this. Thank you for your prayers and I will keep it in mind to contact you if I need to talk.

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