Friday, March 17, 2017

Facing Forward: Elizabeth

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: Elizabeth
Location: Denver Metro Area, Colorado, USA

Diagnoses: The ones that impact my daily life the most: fibromyalgia, dysautonomia - postural orthostatic tachycardia syndrome (POTS) & inappropriate sinus tachycardia (IST), joint hypermobility syndrome (JHS), complex allergies, eosinophilic esophagitis (Eoe), irritable bowel syndrome (IBS-C), depression

Others that still impact my health, just not to the same extent: asthma, attention deficient hyperactivity disorder (ADHD), migraines & chronic headaches, temporomandibular joint dysfunction (TMJ) 

Age at Diagnosis: Fibromyalgia = 22 years old; Dysautonomia = 24; JHS = early 20s (unsure exactly when the Dx was made because I wasn't told about it until much later); EoE = 24; IBS-C = 25; Depression = 14; Allergies = 2 (still searching for what complex condition it is)

Asthma = 5; ADHD = 14; Migraines = 19; TMJ = 22 

How are you currently treating your condition?
Fibro: I take a muscle relaxant some nights, to ensure I sleep well. Meditation and Pilates have helped me immensely! I also take magnesium every day (which is actually for IBS-C now), it definitely helps.
Dysautonomia: Right now, I’m just on a beta blocker because I want to have children relatively soon. I try to make sure I keep my fluid intake high (I drink a minimum of 2 ½ liters of water a day, usually closer to 4 liters; “8 glasses a day” is 1.89 liters). My dysautonomia is not under control.
JHS: Weekly Pilates based physical therapy sessions, weekly group Pilates classes (when my therapist clears me for them, right now I can’t). I also use OTC pain killers (Aleve is the main one) when my pain gets out of control.
EoE: I take Zantac twice daily. Avoiding known triggers is the best treatment however, and they can be extremely difficult to track down. Right now, we know dust, pollen, and several foods trigger it. However, sometimes it still triggers without a known cause. I have two reusable respirators that I use when it flares up (or if I know I’ll be around environmental triggers).
IBS-C: Currently we’re trying a dramatic change in my diet (the low FODMAP diet) and increasing my magnesium dosage. Daily high dose probiotics have definitely been helpful.
Allergies: I currently take three different medications to specifically treat my allergies: Nasacort (nasal spray), Xyzal, and Singulair. My allergies are not under control, so I’m seeing the immunology department at National Jewish Health at the end of January; NJH is a specialty referral center, so hopefully they’ll be able to figure something out.  
What are the biggest challenges you have faced since your diagnosis?
The diagnoses I’ve received as an adult came as a hard blow (with the exception of IBS-C, because I’ve had it my whole life). I had to completely change a lot of aspects of my life, and give up many of the things I loved. Grieving my old life, without wallowing, was the initial challenge. Now, however, it’s remembering my limitations and having to sit out on things I really would love to be doing. Having to miss out never gets easier, and it has caused me to lose many of the people I used to consider friends. It also kills me to have to tell my husband that I can’t do something because I’m in too much pain or too dizzy, because I know it upsets him to see me hurting. We’re still struggling to find “safe” activities I can do, so we can still get the most out of our lives.

What are your favorite tips and tricks for managing everyday tasks?
Think everything through first, so you can do it as efficiently as possible. Examine your daily routines, and determine if there is a more efficient way to do it. Once you get diagnosed with chronic, energy zapping conditions, everyday becomes a balancing act. Remember, you can’t do what you used to (at least, not without paying for it severely); it’s okay to only get one load of laundry into the washing machine.
Don’t be stingy on your health care. I put off buying a transport chair for much longer than I should have, because it was about $100 (and I didn’t want to admit I needed one). I didn’t purchase it until my pelvis started dislocating when I would walk too long. Now that I have it, however, I have significantly less pain! I also have a lot more stamina; I hadn’t realized how much energy my dysautonomia would zap from me while I was on my feet. I know being chronically ill is expensive, but if something is going to make your life infinitely better, than it’s probably worth the money!
Find new hobbies that you absolutely love, that you can do during all sorts of different health conditions. Coloring/drawing/Zentangle is great for bad days where you’re trapped on the couch or in bed, so is reading! On my good days, my husband and I love going to the museum (it has to be a really good day). On my so-so days, we love to go for drives around beautiful Colorado and find picnic spots or scenic overlooks.
How do you manage to keep facing forward every day?

Some days it’s extremely difficult, admittedly. However, I always have my wonderful husband, Dan, to remind me that it’s worth hanging on! My husband and my two adorable kitties are worth more to me than they realize, and they’re my main reason for moving forward every day.

My mindfulness meditation (daily) practice has also helped dramatically. Meditation has helped me reprogram my brain a little bit, and I no longer view negative things as harshly as I did before. I highly recommend it to everyone! Erasing several decades of programming takes time, but after just a few months I did start to notice a difference. Now, several years later, the difference is dramatic!
If you could go back to diagnosis day and tell your past self one thing, what would it be?
“It’s not the end of the world.” The fibromyalgia diagnosis was the first (big) one, just a few months before my wedding, and it was extremely difficult on me; I think I spent about two days on auto pilot, and cried a lot. However, as time went on, I learned how to manage it and now I don’t get much pain from it. Each diagnosis since then has been easier to handle, and I’m learning a lot about my strength and how to navigate the world with my illnesses. I’d definitely tell myself that “it’s not the end of the world” because it wasn’t!

Do you have a blog you would like to share?
--> I blog about the craziness of juggling all my illnesses with a “normal” life on Finding Life’s Silver Sun. I don’t post exclusively about my illnesses, and often scatter in recipes, art, and fun things that I got to go do. My blog is all about trying to live my best life possible!

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