Cal-EZ Blog

For this blog I wanted to switch it up! I'm having one of my best friends actually write it for me!

I wanted the perspective of an outside person and what it's like being around someone with Hypopara as often as she is. This woman has really changed my outlook on my illness and on my life. I'm so blessed to have such strong women in my life.

(I'll actually be reading what she writes at the same time as everyone else, I'm excited to see what she has to say).

Wow it has been a busy month! Almost exactly a month since my last blog. I had the grand opportunity to go to the Annual Hypoparathyroidism Conference in Minneapolis, MN in June! I got to see my second family. I feel so connected to everyone when I go to these conferences. I went over 20 years without knowing a single soul with this disease, so I felt very alone at times. The conference was a blast! I got to meet some new people that I had never met in person but talked to on the internet all the time. It is always nice to be able to put a face with a name in person! I won’t dive too much into the conference, but I highly recommend it if you can come next year as it will be in Jacksonville, FL! Bring your beach towels!

In my blog from last month, I talked about wanting to lose weight and really get on the bandwagon to eating healthier.

Every once and a while, being sick makes me lose it. I get tired, frustrated, and frankly, pissed off. I'm still young. I shouldn't have to deal with this. Really, no one should. I should be living my life not sitting in a hospital room for hours without an end in sight. Usually, despite it all, I can find a reason to keep positive.

Hello readers! So much has happened in my life since my last blog post, I can hardly figure out where to begin. Life it seems has a funny way of giving you the highest of highs followed by the lowest of lows. In one moment you can go from celebration to mourning. Without going into too many personal details here, let me just say that the past few weeks have been exactly that! I am sure some of you can relate to what I mean.

Friday May 22, 2015, marked my 2 week Natpara anniversary!

I know that this isn't a cure, and I will still have some bumps in the road, but I can actually see some light at the end of this very long tunnel.

I was talking to my mom the other day and I said, "I actually feel like I can have a life again."

Words I never thought I would be able to tell her. What an amazing feeling!

When there is a rare or underserved disease in your life it can be extremely difficult to know where you are on the scale of doing well or doing poorly. I know that sounds strange but let's explore some hypothetical "what ifs" for a moment.

As an athlete, I push my body to its limits. In any one week, I am swimming, biking, running, and doing strength training. I usually put in 10+ hours of exercise a week on top of the demands of working and raising children. It can be exhausting, but I love it nonetheless.

A few months ago, I had a bone density test. Something my doctor recommended since I have Hypoparathyroidism. I found out that my bones have had some changes due to the hypopara, but one thing I found to be quite shocking was that I actually have some small osteoporosis signs in my wrists! How on earth do I have those changes in my forearms? My doctor reminded me that, despite my athleticism, these changes can and do happen. She said that it is possible that my wrists are showing the changes because they don’t get the same level of exercise as the rest of me. So she suggested that I ensure I’m getting adequate calcium and vitamin D (something that I have to do for hypopara, but a reminder anyway) and to increase the strength exercise that puts resistance on my wrists (like pushups, oh joy!)

Unfortunately, I am going to start the blog with sad news. I tried to get into Kona this season, and I did not make it through in the lottery. However, with this being said, it turns out to be a blessing. When you consider the setbacks that I have had this season so far with surgery complications, it is a better thing for me to not have that weight on my shoulders to have to complete a full Ironman this season. That does not mean that I will not do an Ironman in the future. I will get to Kona; the question is when will I get there? I haven’t given up on my season yet. I hope I can do a Half Ironman this season, still I presume it will be in the late fall. If the timing is not good the plan will be to do several smaller races, and I will train throughout the winter of this year and prepare to do any early spring race next season. I might try to do Ironman 70.3 in Austin one more time, since it is in November and that allows me plenty of time to train.

As you know by now, my life forever changed 3 years ago, but I think it changed for the people around me even more.

I had to change my everyday routines to accommodate and adjust to my chronic illness. This meant the life of everyone close to me and around me had to do the same. This change brought on some anger and resentment. Why should their life have to change so much? They didn’t sign up for this. What about them and their feelings?

Most of us who are sick have a caregiver of some sort: a parent, family member, spouse, nurse, friend or just someone who comes and checks on us. Usually, the point of focus is on the one who is sick because they need assistance of some sort. Focus isn't on the caregivers. 

Caregivers can get overlooked. I know first-hand how the stress in taking care of/helping someone who needs constant attention can wear someone down. At 24, I still need my mom and more than I'd ever thought I'd need her. She rarely has broken down or shown me she was scared. She kept hope when I didn't, loves me through every weak moment, holds me through the pain, and supports me no matter what. The combo of a parent and caregiver truly makes for a great person, but it takes quite a toll on them too.