Friday, July 29, 2016

Facing Forward: Amy

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Amy
Location: Post Falls, Idaho USA
Diagnosis: POTS (postural orthostatic tachycardia syndrome) a form of dysautonomia
Age at Diagnosis: 29

How are you currently treating your condition?
Combination of medication to include Metoprolol 50 mg per day and Midodrine 15 mg per day, as well as additional medications for other conditions. I'm doing physical therapy twice a week working on as much cardio as I can do without my heart rate getting too high, as well as muscular strengthening and stabilization. I also try to do recumbent biking at home as often as I can tolerate it. I drink water like it's going out of style, usually over 140 ounces a day. I drink Gatorade and Powerade, as well as increasing my overall salt intake on my food. I will be starting salt tablets as well soon and an abdominal binder. I also use oxygen to recover after a faint and when my O2 sats are particularly low. I have a wheelchair that comes with me anywhere that requires a lot of walking or no chair is available.
What are the biggest challenges you have faced since your diagnosis?
It has been relatively difficult for me to accept that I'm 29 and use both oxygen and a wheelchair on occasion. My self confidence really took a hit at the beginning and gaining weight didn't help at all. If you would have asked me a year ago how I release stress I would have told you either sitting in my sauna, taking a hot bath, working out, or having an alcoholic beverage. Basically all of these options have been taken away from me due to my health, and that has caused me to have to majorly shift my life around.

Besides those issues, I think truly the most difficult part has been giving up my work. I was a police dispatcher for the state police. My husband is a police officer for another agency. We have always been a law enforcement family. Our entire relationship has been balancing two different shift work schedules. I miss my law enforcement family and the adrenaline rush terribly. I feel like a law enforcement 'wannabe' now. I hate that I never worked graveyard anymore at the same time as my husband, meaning we would get to sleep at the same time during the day. Even though I'm on disability so technically I can sleep whenever, all of my doctor and physical therapy appointments are during the day, which causes me to mostly sleep at night.

What are your favorite tips and tricks for managing everyday tasks?
  1. Electronic scheduling and list making. There was a time in my life where I could remember the six or seven things I needed to get from the store without a list. I now write down every little thing I need and I try to write it out in the order I come upon it in the store to avoid backtracking as much as possible. I used to be able to remember specific dates and appointments without needing much of a calendar. Those days are gone. My husband and I share a google calendar now with every important appointment and task on it (to include even things like 'garbage goes out today'). Whenever I don't write something down immediately, I regret it later.
  2. I now have issues with my body holding heavy things, reaching above my head, and bending down. I'm always looking for easier ways to do everyday tasks. Instead of filling up the coffee carafe with water then holding it to pour it in, I've come up with this system. It's definitely worth moving the coffee pot closer to the sink. I used to keep the dog water in the basement in the laundry room, but I had to eliminate stairs as much as possible. Now I keep it in the kitchen right by the sink so I can do this. I still have to lift it up to wash it when needed, but when it just needs to be filled up I can do this instead.
  3. I keep water bottles all over my house in case I am very dizzy or weak somewhere, such as couch or bed, and unable to get to the kitchen.
  4. I use much cooler water when showering now and sit down on the shower bench a lot. We also installed a shower doorbell. It's just a waterproof doorbell we ordered from Amazon that requires no wiring. It's down low in case I fall or start to feel really dizzy I can call my husband by pushing the button. 
How do you manage to keep facing forward every day?
I do my very best to always stay focusing on the positive. I know that I am more tolerable when I am not whining or taking the 'woe is me' route. On that note, I don't mean to sound cliche and against all the rules of chronic illness, but there really is always someone who has it worse and it helps me to remember to be thankful for the many things we sometimes take for granted. You know I might have a really bad pain day or be very sick, but hey I'm living like royalty because I have indoor plumbing and we can afford the 'good coffee creamer.' It's the little things. I try to focus more and more on simple joys like a cup of coffee, watching a hummingbird, watching a great hockey game, or a good book. I force myself to make plans every few days at least because I know contact is important. I try to find ways I can bless someone else along the way and take the focus off of me, whether that is putting together a care basket or donating to someone in need.

I am continually trying new things as I'm having to reduce or eliminate completely other things I used to enjoy. My husband and I play cribbage now and darts (which can be played seated). I have taken up acrylic painting and wood burning. Yes, I could be sad that I don't do aerial silks or Krav Maga anymore, but I choose to put my energy towards something new.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
"It's all gonna work out. This will be life changing, but not life ending."

Do you have a blog you would like to share?
I run a blog devoted to deliberately finding the smiles in life. Follow along at: POTS: Finding Smiles in the Trials. You should always be able to find something funny, encouraging, inspiring, or helpful for whatever path you are own. The blog includes quick and easy recipes, crafts, little love stories and tips about romance with chronic illness, helpful tips, and many funny stories and pictures!

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