Friday, May 6, 2016

Last Friday Night

5/2/16

It's a bit odd not knowing what I'm fighting because it's hard to know what to expect. I suppose even if someone tells me it's MS I still won't know what to expect so having that answer my not solve anything. Instead, I'm trying to get better at noting my own issues and doing some research about MS to get more ideas about handling my disabilities.

Last Friday night I went to one of Jeff's gigs in town. I really enjoyed my time out and even managed to drive myself home. My driving is limited because I get confused very easy and my vision is affected by moving objects. I have discovered I can drive around 25mph - but anything over 30 or 35mph is awful for me to process. Lights, rain, tree shadows, too many cars with too much action can all really make a big difference along with being tired or having a migraine. But... I am trying to move forward and make improvements any way I can.

It was awesome to get out of the house and see my friends. I am learning which way to sit in a restaurant (so the flashing lights don't bother me) and towards the back instead of the front of the bar. I wear earplugs and sunglasses to mellow my senses out a little. Some people have asked what happens if I don't block everything out. The best way to explain it is that I get a major shock down the right side of my body. It physically hurts me if things are too loud or too overwhelming. I have a whole new appreciation for people with sensory issues.

Getting out of the house takes energy - and it's amazing how much energy taking a shower takes - and walking around with my walking sticks is also exhausting - but it's worth it to see my husband play and sing while being amongst my friends. It was awesome seeing everyone having such a great time and actually being a part of it too.

I am constantly aware my disease could be worse. I've been to the hospital many times for physical rehab and I see many people who have much worse things to deal with. I am grateful everyday for the time I am able to spend with my family. I have an incredible support system and an amazing husband!!
 



Monday, May 2, 2016

May 1st

5/1/16

Happy May Day! I can remember when I was a child that May 1st meant leaving flowers and candy on neighbors doorsteps, ringing the doorbell and watching from afar to see them smile and look around. It was a tradition which few people do today. It was an act of kindness for no real reason other than to make someone smile. I am not "huge" on celebrating holidays (except for Christmas) or even birthdays but I love the idea of doing something unexpected for others and being kind. Having said that, Happy May Day!




Thursday, April 28, 2016

The Dragon





When I was in the hospital (August 2015), one of the biggest challenges was not knowing what I was fighting. I had so much fear, anger, pain and frustration but I had no idea where to aim those feelings. During my 2nd week there, Tony was at the office with my husband and made me a picture. He used one of those pens with a few colors and drew me fighting a dragon - which represents me fighting my disease.  As I laid in the hospital this picture gave me a new direction to aim for. As odd as it may sound that picture on the wall beside me was a place for all my emotions to focus on. It gave me hope a sense of hope as well. Ever since then I have referred to my disease as The Dragon.


Writing is Therapy

4/23/16

So my doctors say I'm a little (okay a lot) anxious and I should talk with someone about it. I've decided a good place to start is by writing. My dad says "Writing is therapy" so time will tell if it works for me. I love to write so this should be helpful.

Some may wonder why should I be anxious? Well let's see, I'm fighting a disease that no one can explain - at least not at this point. I've been told I have some sort of autoimmune disease that acts similar to Multiple Sclerosis but doesn't have all the same symptoms. Some other docs have mentioned it looks like lymphoma or maybe a tumor. I've had many side effects from my brain lesion not to mention the emotion strain it has put on me and my family. I'm generally an upbeat person and I try to see the glass "half full" but at times it's hard to view things that way. My biggest struggle, which is really hard to explain to people, is being so exhausted all of the time. I feel I have no reason to be so tired all of the time and yet I can sleep anytime - day or night. Being exhausted also comes with lack of motivation which is challenging as well. This leads to frustration because I have a list of things I want to do that I am physically unable to complete. After 8 months I am in the process of "mourning" the loss of things I once did and was able to do with no problems. I feel up until now I have been fighting forward and making progress every day. Recently I have been diagnosed with a new problem with my eyes and I feel I am going backward. In the past, I would take two steps forward and one step backward. Now I feel I'm not going the right way but hopefully in time that will change. I know the doctors are working on it with me so in time we will be moving forward once again. Having said all of that, I'm hopeful this blog will be positive but real.

Saturday, April 16, 2016

Not in Iowa Anymore

3-29-13

After an amazing night reconnecting with my husband it was time to see the rest of the family. I soon realized I was not in Iowa anymore. Reno is pretty fast paced with noises and people all around - much to the contrast of being in Iowa. The next couple of days were spent taking kids around and even meeting up with Jeff's step-brother Keith (who lives in Denmark) and two of his kids in Truckee.

During the road trip home I spent the travel time thinking about my days in Iowa. Jeff mentioned to me how leaving Iowa was like when I left when I was 18. No, leaving Iowa this time, was me as a 40-year-old with much more wisdom and needed comfort and closure to start anew. I hate to repeat myself, but this trip was more than just a trip, it was life changing for me. Every day had a true meaning and it was so much more than anyone else could have given to me. I understand now why I had to do this trip on my own. Going with my family would be amazing (and still will be in the future!), but it will be a much different trip. I would never have received as much closer as I was given had it gone any other way. From the road trip there, to the nights spent sleeping on the couch, to the journey back to my family - it was all worth it. The one on one time with my brother was amazing - like no other we've had during our lives. I knew going into this that I had "issues" and it would be an emotional trip but I had no idea how every moment would help me. Somehow this trip, and this blog has brought me back from the grave and grieving my mom's loss to a place where I am more accepting of what is to come. I must look forward with confidence in myself and press on with my life. I wish there was a way to give this peace and freedom to others.

As we approached our house in Medford, the door opened from the car to get out. I started to cry... see our neighbors have frogs in their pond out in front of their house and their ribbit was so loud. It was a true circle for the trip. From the beginning, I named my blog "afrogonalogandablog" but I had no idea why (or how) I came up with that name. Now I felt the answer was right in front of me - my journey home was not just about going to Iowa but also coming back home where my life is today. Somehow it just made sense.. I was home.. and happy to have a new look on life.

Press on....

26 hours and counting..

3-27-13 Wednesday

26 hrs and counting...

Car, wait, bus, bus, taxi, wait, plane, walk, tram, wait, plane, shuttle...

Once I did my shopping I did one more trip around Shen and went back to David's house. My bags are packed and now I just wait.. We watch tv to kill time and told a few last stories. Sean comes over .. He is my ride to the bus stop at 4 in the morning. I tease him, but in a serious way. I let him know if he doesn't wake up I will take his truck keys to the bus location and he can find his truck there in the morning. He reassures me he will wake up. What a kid.. Promising to take his aunt to catch the bus in the middle of the night. Off to bed I must go.. Dreaming of seeing my honey again.....

1:00 am came way too fast... David had to wake up to get ready for work. I dazed in and out of consciousness telling myself it was time to wake up. At 2 am it was time to say goodbye to my brother... That was hard to do. Granted I was tired and my emotions were mixed but saying goodbye to such a wonderful person whom I've grown even closer to over this week together. We laughed, we cried, we drank and we were sober.. But what an awesome bond we did share this past week. This was this first time as adults where we got to spend one on one time just to connect and share with no one else to judge our raw emotions and grow as brother and sister. Lots of hugs and many tears but off to work he must go.

It was a little early for me to get ready to go but I feared if I laid back down I might fall asleep so into the shower I went. I packed my bags, ate a piece of cold pizza and woke Sean up. I guess the suggestion of me leaving him stranded without his truck was enough to make him wake up.

At 3:45 off we went to the bus stop. They said to be half hr early just in case the bus arrived early. Now we wait..... Sean and I talked about him going off to boot camp this coming summer. I could tell he was excited and nervous about his upcoming adventure. I told him about my brother leaving for boot camp and how excited I was to see him again. We talked about the opportunities it will bring beyond Shenandoah and the fears that come with it but also the joys. We talked about his friends and school and his parents and his dreams. It was very nice to talk to him.. in the cold, half awake..while waiting for my bus. 4:10 came and went, 4:20 I was starting to get anxious.. 4:30 I was saying a few curse words that I shouldn't say in front of my nephew. I was nervous, upset, and tired. Did I miss my bus? My connecting bus was in less than an hour now.. I don't know if I will have a connecting bus. I have that gut wrenching pain in my stomach.. Nothing is going to stop me from getting to see my husband tonight! I start drilling sean on if he thinks his truck will make it to Omaha. He doesn't think it would, but hey, I'm willing to try. I told him I would take the heat and write him a note to miss school. But then if we get there we would still have to find our way to the bus stop. I was starting to freak out.. Where is my bus? Poor Sean had to be the rational one of the two of us. I called my brother almost in tears frantically trying to come up with a solution to find my bus. He calmly told me in a voice sounding much like our dad to be patient and not to worry the bus probably got stuck in traffic in Kansas City and not to panic until 5. Don't panic?! How is that possible? This is my way home.. Ok deep breath. 4:45 came and went.. My nerves are shot but I have a little faith my bus will come. With every headlight sean and I would look but it would be a semi driving thru town. Breathe... 4:50 the time is ticking away. Minutes before 5 my bus finally arrived. I gave Sean a hug goodbye and thanked him for helping me thru this past hour. Me getting on the bus early in the morning was like a scene in a movie; bus driver gets out and takes my bags as I longingly look back and say goodbye. The door closes behind me as the bus starts to move along. I find a seat in the dark and put my hand on the window and way goodbye.

My gut still hurts and I have no clue what will happen once I get to Omaha since I know I will not catch my original bus going to Des Moines. There is a smell of sweaty old man hair gel. I try to relax but it's just not possible yet ... Not until I have the relief of knowing when my next bus will leave. I have plenty of time to get to Des Moines which is reassuring to me but it's the unknown that is very hard.

The bus pulls into Omaha and off to the ticket counter I went. To my surprise and relief, there was a bus going to Des Moines in 10 minutes and there was room on it. Yeah! Riding a bus has an interesting crowd. Not bad, but different than my normal comfort zone. I could count how many white people were on my bus with two hands. Also the luggage used didn't consist of any suitcases. In fact, there was a guy behind me that had his stuff in a trash bag only to find out trash bags are no longer allowed on a bus. I almost offered my spare cloth grocery bag but looked behind him and saw another lady with the same problem and thought that one bag might cause more of an issue than no bag. I feel privileged to have all that I do. I am uncertain of the outcome of their luggage but for me, my new bus just arrived.

Riding to Des Moines I watched the sun come up over the flat farmland. I saw the old farm houses with the clickety clack spring doors in the front. I could almost hear the roosters crowing. I felt more at ease with knowing I had 2 more hours to a taxi to the airport. I attempted to fall asleep but a newborn baby in the back of the bus had alternative plans for me.

Once we arrive in Des Moines I go to the phone with the direct line to the taxi. I request a taxi and wait... A taxi arrived and off to the airport I went. It was a typical wild taxi ride with someone that spoke limited English but he found his way to the airport.

As I got out at the airport I started to cry... I made it to my plane; now I have to wait several hours in an airport to even check in for my flight. But I made it!! What a relief! I found my way to the food court and started to work on my blog. The Des Moines airport is very clean and traveler friendly. There are many spots to plug in your cell phone and laptop. The chairs you sit in even have outlets right next to you. Another thing that was pretty cool were their bathrooms. Ok so this will sound odd but as a female it was very nice; They have automatic plastic seat covers. I had never seen that before but you push a button and a brand new seat cover swirls around just for you. Shall I remind you now that I had several hours to kill with a lack of sleep. :)

So fast forward thru the security line and next few hrs of waiting.. My plane arrived and off we went to Vegas. It was odd traveling to Vegas knowing I would only be staying for a few hours and wouldn't make it to the strip downtown or have Vegas stories to tell. I was sitting amongst a group of guys traveling to Vegas for a bachelor party.. I felt a bit out of place but it neat flying over the states I had recently driven through.

Ah Vegas... We're not in Kansas in anymore.. Jeff and I have been to vegas many times before, but today was different. Today I am all by myself pulling my suitcase and walking for what seemed like for miles to find my next gate. I must mention that the bathrooms are much different than the Des Moines airport. Instead of the fancy toilets, they have signs stating "Please do not put needles in the trash." I'm starting to miss Iowa even more.

After my never ending hike to a different airline and different section of the airport I was able to sit. I really wanted to fall asleep but I had visions of sleeping through my connecting flight so instead I struggled to stay awake.

Hours pass and I call Jeff to confirm my family is in Reno waiting for me. Throughout my journey Jeff and I have been counting the days until the full moon. As I turned around looking out the window at the planes there was the biggest full moon. It was a harvest moon and it was very clear. Tears fell. Tonight I see my honey again.

Finally my plane is here and I'm very excited to board. I didn't wait for my isle to be called... Oh no, I was in the pre-boarding line. I don't know why I needed extra time but after hours in the airport I was ready to be on that plane. I found my seat and had a big sigh of relief.. I'm almost there. I close my eyes thinking I would try to rest a little. As the stewardess asks me if I want a drink I see something really neat. There's an English teacher sitting catawampus (Iowa term) from me. During the flight she is grading papers. The papers seem to be long but well written. She takes the time to write words of advice and praise on each paper. Now I couldn't fall asleep.. I had to tell her thank you. Here I am so extremely tired but for whatever reason I just have to tell her thank you for making a difference in someone's life. I didn't want her to feel like I was watching her (although I was) so I waited until we landed. As I told her thank you I said its people like her who gave me the passion to write. She was very pleased with the thank you and rather shocked. I am happy I stayed awake.

Once my plane landed I was on the last part of my day. I had to get to the shuttle before it left. Keep in mind my body is tired and sore ... But my mind says to keep pressing on. I make it to the shuttle and I swear it was the longest ten minutes to the hotel.

When we got to the hotel all I had to do was find Jeff. he was at the sports bar and I was like a mad woman racing through slot machines trying to find him. I totally respect those who go weeks or months without seeing their spouse... It's the hardest thing to do.

Tonight I get to rest in the arms of the one I love - what a wonderful place to be!

A Reflection Back in Time

4-16-16

Hello everyone,

It's been so long since I've typed on my blog but it's time to start again. I am going to start by finishing up where I left off during my journey home to Iowa. I realize it's been 3 years (and counting) since I went to Iowa - but it still impacts my life today! I feel I should have the closure of finishing that story before starting a new one. So many things have happened since this awesome, life-changing trip and I look forward to sharing them with you!

The next entry is very long but it was actually written the day of the journey back to Reno to meet up with my family so I feel it is important to document those feelings.

It's good to be back....
Christina