Thursday, September 22, 2016

Checkmarking Off My List

Good News:

A Sigh of Relief. Finally. I had my eye surgery last week and I had my post- operation follow up appointment yesterday. All is going perfect with my eyes! I've been needing this surgery done for the last year, but had to cancel twice due to my getting sick right before surgery.

I had Strabismus surgery. Basically my eyes (mostly the right eye) wonder and can't follow along together. My eyes didn't work as a pair and my left eye took over my sight. So I had depth perception problems, bad night vision, and stopped reading books about a year ago. I was so happy that Wednesday I got to follow through with the surgery!

I have one more post operation surgery appointment next month, but Doc said they look perfect! Well, technically they are still bloody (in the surgery they snip the white part/muscles and stitch them tighter), but I love my bloody eyes more than my old ones and can't wait to read the stack of books waiting for me!!!!

My checklist is finally getting accomplished:
✔ eyes surgery
✔ medical alert bracelet

Yep, that's right!!!! I ordered a medical alert bracelet. Remember about a month ago I asked for opinions? Well, a friend of mine is a KEEP collective designer & through the month of September she is donating a portion of proceeds to the Peoria CF Walk! So I decided it was the perfect opportunity to order an alert bracelet & a CURE CF Bracelet.

I absolutely love them! The bands are reversible and I can move the plates & charms on either band, so it makes a total of 8 looks out of just these 2 bands I bought! If you would like to order anything in the next week through my KEEP online Social party (and have a portion of proceed benefit the CF Foundation), go this KEEP site here!

Why a medical alert bracelet? It was important for my family & friends to feel I was safe in case of an emergency (and myself). If I wasn't deathly allergic to Morphine, I wouldn't be so worried. The last time I was given morphine I went into anaphylactic shock and almost died. I think alerting people I have CF and not to give me morphine were my two priorities. I think being able to put the engraved plate on different bands will make it work with any outfit I wear.  I'm not a huge bracelet person, but these bands adjusted to any size, so they are comfortable.

✔ CF Peoria Walk Ready

October 1st is the Peoria Walk! I'm not sure how big my team will be this year! Last year we had quite a few more people join us. I help plan the Peoria walk, so it is VERY important to me! I'm very excited about the Live Music, Photo booth, and other fun activities at the Walk! But, the best reasons to attend would be:

 1. Andrew, my husband is the Guest Speaker.
 2. It raises money for the CF Foundation, bringing us closer to CURE every single day!

Please consider joining my team that day or donate to our link:

Hoping to start Orkambi this month, insurance is still dragging feet. Also, big CF Fundraiser at Rips coming up!!! Follow my CF Facebook page or twitter for more updates!

Wednesday, September 7, 2016

Little Over a 1 Year of Marriage!

Thank you to my Husband:

As of August 16, 2016 Andrew and I have been married for a year! (click here to read our 2 wedding blog posts) It is hard to believe a year went by already. It was an exciting year, that's for sure! Andrew got a promotion with the company he works for and we moved the week of our wedding for the new opportunity. Even though it added a bit of stress to our wedding week, we didn't mind because we knew it would be worth it! We got to move to the same town my sister lives in and a big bonus factor is my Cystic Fibrosis Center is in Peoria too! After moving to Peoria, I decided to finally become licensed as a Real Estate Broker. The career choice wasn't new, I had always wanted it. I just couldn't be a Real Estate Broker, because I needed health benefits. Both our careers are going really well  and we decided to buy a house this June!

So it has been an exciting year thanks to all the milestones we have achieved.  I just wanted to take this time to thank everyone for encouraging us and always being there for us!

This past year I have really been focused on my health with the future goal being us becoming a family somehow. I've been a lot more active this year. I have done 4 5Ks since July 2nd and I'm going to try and keep it up. Exercise, never skipping meds, eating more then I need in calories....That's my goal to continue. Obviously, all this hard work is paying off. Granted my life is a little hectic and my arthritis is a bit worse (which is why I believed I was lower in lung function). BUT, it is sooo worth it! I was 49% in lung function in May and now I'm around 58%

At my last clinic I misread my lung function numbers and thought I hadn't increased. They said I went up a bit, and with the doctor talking about how my lungs might not react well to the anesthesia, when I glanced at the numbers I just assumed the 49% was my lung function. But that was from the time before. Dropping to the 40s in lung function was scary. I'm so glad to know I'm back to where I usually am :-) I thought I felt healthier, so I freaked when I didn't think it went up. WHEW!

We can finally start focusing on becoming a family. We are meeting with FosterCare, Adoption and a Surrogacy Center this Fall to start looking into our options! I never thought I'd have a family of my own some day, but with Andrew it all seems possible!

Happy 1 year to my Super-Man of a Husband, Andrew! I can't wait to see what year two will bring us! Whatever it brings I know I can look forward to it with you, Andrew!

Saturday, August 27, 2016

Slight Changes Add Up, Noticing the Difference in Your Health

Reminding Myself to Notice and Embrace the Changes:

Too be honest, sharing about Cystic Fibrosis can be tough in the first place. I always try to be open about my CF though. I think it makes things easier in the long run. No weird looks when coughing, or comments about being contagious. I don't want sympathy, just for people to be aware. Plus, the more people know about CF, the more awareness for the CF Cause.  How to tell people???

Well I don't say "Hi, I'm Cheriz and I have CF".... That sounds so drone-like and weird. I usually try to tie it into conversation. By saying something about my volunteering for the CF Foundation and follow that up with "because I have CF." I also tell people to feel free to tell others if they wonder why I cough, etc.

The weird part is now that I'm getting older and my CF is becoming increasingly more difficult. While most of my family members and friends could rattle off every surgery, my current lung function, weight, and secondary problems, in a second. I feel most family, friends, and even myself don't notice the changes in my health over time. Since they have seen me grow up with CF and watched me slightly decrease in health little by little, they overestimate my health sometimes. Even I forget and do too much sometimes. It just happens.

Partially, it may be wishful thinking, determination, my bubbly personality that hides it particularly well. Or perhaps it is hard to notice. I can't blame anyone for it, I mean think about someone who changes their make up or hair... By the time it is a new style you are so used to it, you don't realize how much different it was than before.

By no means am I saying I'm in horrible health. Just that I'm not as healthy as I was perhaps 5 or 10 years ago. It is hard to notice.  I do 3.5 hours of treatments a day, sleep the 10 hours a night (so I don'y feel like a truck hit me the next day), eat about the 3 meals and 5 snacks a day totaling over 3,000 calories (which I need to up)... I try to add in a 30 minute exercise or nightly walk,  plus my monthly 5k. My daily stretching (for my Cerebral Palsy). The day after shopping, running errands, and grocery shopping I usually crash. Housework and yardwork can take me twice as long, because I get out of breath...I forget most of this and try to keep up with everyone else around me.. Only afterwards do I realize the difference. Did you know it takes me 3 days of lying around after a 5k to be able to walk again. I literally am in so much muscle pain that I can barely walk for 3 days. Plus, my back and hips hurt weekly. My stomach and bathroom issues arise every few days too. It's hard to trying to remember everything I need to do, just to keep myself healthy. I feel like I need a daily checklist to stay alive.
I have been working super hard at my health. I think about a future family and it really drives me. I'm heading in the right direction and who knows how much Orkambi could help too. Yet, I feel it isn't enough. Being in the 30-40s for lung function for the last 6 months was scary!!!  I'm not ready for 48 to be my new baseline, so I have to step up and work really hard!

 I will push, but when you are at the point the doctors says "At this lung function range you may have some complications with your eye surgery. Since they are doing general anesthesia, your lungs may not respond and breathe on their own right after they take the breathing tube out. So if you wake up still intubated, don't worry, it jut means they will have to wean you off the breathing machine." She also followed that by saying that she really didn't think that would happen, she just wanted me to be aware of worst care scenario. I respect her for always being open about all possibilities, but I'm also a little freaked out by the fact that I'm in "that range of lung function" now. Can I get out of that range now please?!?

While I was actually 58% in lung function, I felt I can still do better if I keep at it. Realizing with age comes lots of secondary problems though, which is why we may not notice those changes..

I feel family and friends understand the most, but at the same don't notice the changes over time, just like I don't sometimes.  I'm not sure how you look at a friend and tell them you are down in lung function and really have them understand what it means, unless they have CF... I don't want to upset them or freak them out. I don't want them to think that I'm defeated or ever giving up. It is hard to talk about, so most people just causally ask how my health is and I casually say fine. Or if they read my blog, they understand a bit more. How would you tell people? What do I even want people to say to me after a clinic? I have no clue. It's tough to face some facts, like how hard or complicated CF can get. I just know I need to pay attention to my body and understand it.

I need to especially understand my limits in order to succeed. And I DO PLAN ON SUCCEEDING. Watch out next Clinic Visit HERE I COME!