Friday, August 12, 2016

CF and Coping.

Mental Health and CF:

On July 25th I did a 5K called Whitney's Run and I even shaved off 2 minutes from the 5k I did on July 2nd. I' was a little sore for a few days, but it was well worth it. It was for a great cause. All the proceeds went to a local Center that provides programs & help for suicide prevention programs. I thought this would be the perfect time to open op about how CF has impacted my emotional and mental health. You may not know this BUT mental health is one of the biggest issues CF patients deal with on a daily basis. In fact, the Cystic Fibrosis Foundation has really been focusing on these issues in the past 2 years. If you go to a CF care center (affiliated with the CF Foundation, which most are...) you take an assessment test to see how you deal with all the emotions CF throws at you. I was assessed in May (when I switched to my new CF center).

As I knew the results would reveal, I did  scored high. I knew I would. I answered truthfully to all the questions, even though I knew it would not have the best score. CF Clinics have a social worker for a reason. They are there for us to utilize and help us deal with whatever issues we have. Mostly I struggled with fear of loss.

Having Cystic Fibrosis can be very stressful, even depressing at times. It can make you re-think a lot about your life and affect lots of decisions. I don't struggle a ton with depression, I have more anxiety due to CF. Overall, I love my life and I’m very blessed. Which is why I don’t get sad or feel bad that I have CF. I have a wonderful husband, a nice house, a great family (and extended family), and super supportive friends and community. However, that doesn't mean I don't struggle mentally or emotionally with my CF at all. I do. I am always worrying (it’s always in the back of my mind). I worry about normal things like making sure I get all my bills paid, balancing work, CF, housework, etc. But, on top of that I freak out about losing people.  Death has really impacted in me. You see, it feels like every other month we lose a friend to CF and growing up I lost a friend almost every single year since age 10.. It's a very real aspect of the disease for me. So, I struggle a lot. I don't go to funerals or visitations (unless I really feel I should). Graves and coffins freak me out the most. I try to face my fears, but I still can't put flowers on a grave without freaking out to the point where Andrew sometimes has to coax me along, or put the flowers down for me. The last time I went to Laura’s gave (first time I attempted walking to the grave) I froze bawling my eyes out. I closed my eyes really tight and was too scared to open them, my husband had to carry me to the car (I'm 30 years old). It's embarrassing, but it is the truth. Seeing death as something common that happens randomly (taking friends that were 10-18 years old every single year) makes me terrified of losing those close to me... Family and Friends, I always ask to text me when home, because I seriously get sick with fear if I don't know they are home safe.

I’m trying very hard to work on this and Andrew has helped quite a bit. The other part of death that freaks me out is seeing myself in those coffins. I have never believed I would live past 45-50. To be honest, I know if some new research drugs or medical interventions aren't brought to market soon, I will really have a hard time growing old. You see, I don't respond to IVs anymore, at least I haven't for the last 2 years. 

I lose 3-5% per illness/hospitalization, if this keeps up...It means I could be at 28% and transplant range in 3 years (at worst). Terrifying. So this is what basically causes my anxiety. The fear of losing people I love, or worse the fear that they will lose me. I want to grow old with Andrew and have a family of our own, but it is terrifying at the same time.

That being said, I know I can’t live in fear or let it control me (my Psychology Major in College helped me learn ways to cope too). Andrew and I are very open about my fears and while I want to be realistic about my health. I also have to always have faith and hope. I believe in my heart new medications will keep coming to market and I will have a chance to grow old with Andrew and have a family. I try to focus on the positive. Too be honest, I do not regret having Cystic Fibrosis. While it is a very difficult and time consuming disease, it has also taught me a lot over the years. But, I have to be honest with myself and realize CF affects not just my physical health.  I will continue to work on this aspect and fight my fears. I do this by taking/ doing all my meds,  keeping active in the CF community, exercising (doing 5ks) to keep my lungs working hard! 

I wanted to share, because I know most people don’t want to admit their weaknesses, but it is important. We can never surpass them until we understand them, which one reason why I think a social worker’s role (at CF Clinics especially) is so crucial to the CF Centers. Don’t be afraid to talk about it! 

Friday, July 22, 2016

Just Always Waiting

Secondary Medical Problems:

Well, it's been a while since I blogged. Something EXCITING though is we moved into our new home just under a month ago. By moved in... I mean Andrew and I started living there without our furniture. We finally got our furniture and our INTERNET a few days ago.  We had to do some work in it first, before we moved everything over.  I also had 3 Real Estate closings in the last month, plus other medical problems. t has been a busy time (with no internet), so sorry about the gap.  :-) Update: Basically I'm just waiting for everything.

I'm waiting for my eye surgery on September 14th. I'm waiting for insurance to pre-authorize, approve, and move forward with the Orkambi.  I'll wait until after my surgery to start Orkambi, since the side effects can be pretty horrible. But I will discuss my going on Orkambi once I have the "thumbs up" from insurance.

I'm excited to get my eye fixed finally and I'm very excited to see if Orkambi helps me and makes a difference. Plus, I'm going to be setting up more appointments to figure out all my GI problems and arthritis problems (and finally/hopefully get an official diagnosis for the problems).

The older I get the more I realize my secondary problems are becoming more of an issue. I always have dealt with the lung and gastrointestinal problems since I was a child. I get my liver checked every 6 months and keep an eye on my bone density, since I have struggled with those in the past. Plus, Docs have always said I have CF related Arthritis, but I really need to get an official diagnosis, because I think I'm almost at the point where I need meds for it. I'm trying not to take any extra medication and don't want to add more meds, but if I DO need them in the future, I want to have my ducks in a row. ya know?

I do have days where I have trouble with stairs or feel like my body is 20-30 years older. I have trouble getting up off the floor.Then there are the flare ups, where my joints freeze up and I can't move at all. I usually get a fever and my joints kill me. It's gotten bad enough in the past that I needed help changing my own shirt, because my elbows/shoulders couldn't bend. I've been stuck in wheelchair before from it (usually when its really bad a rash appears with it).. Lately my joints just have felt old and stiff. Not frozen. So not sure if it's something different or not.

After a bad fall a few months ago I joked about getting a life line bracelet. However, it made me think about the medical allergy alert bracelet I had talked about in the past.  Here is my thought: I'm deathly allergic to morphine. Last time & only time I was given Morphine I had anaphylatic shock and my organs starting shutting down. So it's bad to say the least. I always tell everyone I can't have it, but the ONLY reason certain people have wanted me to get a med alert bracelt is because EMTs supposedly use Morphine in the field. Which means if I'm unconscious from an accident, etc they would need to know not to administer pain meds. It's seems pretty rare that would happen though, and I absolutely hate bracelets. I never wear them. They never fit right, so I'm really torn. I know others would feel better, and it is smart, but ehhhhh.... So I'm still debating on that... IDK.

Otherwise, I'm just excited to get my health all figured out!!! Andrew and I hope to really make some solid "future family" plans. Including looking into surrogacy, adoption, and fostering in September/ October once my body has had time to adjust to the Orkambi and my health is all figured out. And in the mean time I will be working on our house, doing Real Estate, and power walking. I'm doing another 5K on July 30th for suicide prevention in Peoria, IL. All proceeds go to the Hult Center for suicide prevention programs. I'm trying to find more Central IL 5ks for causes too (so if you know any let me know)

Friday, July 8, 2016

Health and 5K

Getting my Health Back:

I was at my healthiest in 2012. I was walking every day and jogging some parts of that. I was in a musical where we had dance rehearsal at least 2x a week. And I did a 5K where I pushed the hardest I could, finishing in 42 minutes. Well, I did another 5k last Saturday (on my mom’s birthday) and power walked the entire thing finishing in 53 minutes. 

( Picture to right: Ada & I at the 5K)

I knew I couldn’t jog, since my hips now like to pop out of place and it is too hard on my joints. My arthritis has gotten a lot worse in the last four years. While I know I will never will get back to level of health I had in 2012 (due to normal progression of my disease), I think looking at how I achieved that level, will help me to reach the best health I can today. I had a steady hourly job that allowed me to schedule out my day. Routine is what has always worked best for me, which is why I struggled in college and with jobs where hours changed a lot. In 2012, not only did I have the time to walk every single day, but also the motivations. I also started out slowly and gradually added more distance with time.
I had someone who walked with me 2-3 x a week. Those were my walking days, I’d usually push myself to jog walk 2-3 nights. So I’d be active walking or jogging typically 4-5 nights a week. They weren’t long periods of time or very long routes, just a 1 mile or so at first. I started this in late February and by July was jog/walking 2 miles at least 2 x week. Then I built up to do the 5K in September. 

Having someone walk with me 2x a week really helped keep me on track. My 2nd major motivation was my health in general. My lung function was around 56-58%. Whereas, now I struggle to hit 50% at clinic. I’ve lost 10% lung function in the last 3 years. I’m hoping being more active (with the help of “hopefully” Orkambi) will help me increase my lung function again. In 2012, I actually hit 64% at one clinic. While I think 64% is a pipe dream, I’m trying to 58% again. Which will be hard, but I WILL do it! My 3rd motivation was Laura. My best friend Laura (who passed in 2014 and also had CF) was being evaluated for a lung transplant in 2012. We were hopeful and she’d tell me how hard it was and that I needed to push to stay healthy. She was honest and open. She wanted me to succeed more than anything. I was also motivating her to keep her health stable until she could get her new lungs. [Note: Laura was denied transplant listing and therefore, had to try to make do with her 18% lung function]. Her living 2.5 years with 18% lung function was amazing, especially considering all her secondary problems, like diabetes, gastroparesis, etc. She was one tough lady.

While Laura isn’t here anymore to cheer me on, I can still hear all the words of wisdom and motivation she gave me. I have a playlist I put together that reminds me of her and my future for while I go out walking.  My new motivation is my future with Andrew, in our home, hopefully with a family. The biggest motivation is wanting to be a mom (via surrogacy/ foster/adoption) and to have the ability to run and play with them. I want to be able to pick up my child and carry them if they are scared or hurt. I don’t want to drag an oxygen tank with me to their games or recitals. I want to be healthy for them. I want to live to see them grow up.
I can not jog anymore due to arthritis, but I can power walk. So I’m going to keep walking and try to do another 5k for a good cause later in the year! I loved that the one I did last week. It was for ALS research. I have a friend, Sean, who has ALS. It is a truly horrible disease and I seeing him continue to fight it, is some powerful motivation right there. Perhaps I will powerwalk the CF Walk in October!

Anyway, fighting for my health and trying to get to a point where I feel healthy and not sick is where I am right now. I will continue to update you as I go along. Also, if anyone has a Fitbit add me!