column logo Alithea Athans

In life, we may get married, have children, build a life in a chosen area, and make plans. Plans are usually something we all do. We plan for this and that, but we don’t often consider our health in making those plans. Typically, we assume our health will be good; maybe dotted with the occasional sickness that our bodies can handle before we get well again.

We make sure that we have health insurance in case something happens, and we assume that if anything does happen, it will probably be caused by an accident because true sickness is something that happens when you grow old.

This was my thinking, at least, but, of course, I was wrong. Yes, plans are good, but they go out the window when you are diagnosed with a rare blood disease such as mine, cold agglutinin disease (CAD).

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I have often thought about what life will look like as my kids get older and move on. Most people do exactly this when they get to my age. Such thoughts are centered around making sure your credit is in good standing and you have saved enough toward retirement. You try to guess where the kids will land so you can be near them. These have been my thoughts as I move forward with my own goals.

Read more about the prognosis for CAD

As I get older, my needs will change. I may get colder easier or be more susceptible to illness and germs just based on how life works. Time flies and here I am. My kids are all grown up, and my youngest will graduate from college next year. My original plan was to sell the house after they finished graduate school and move back to our hometown. Now that I have CAD, there are so many things to consider that were not part of the plan.

It is no longer just about moving to my favorite location and being fiscally sound. There is a new layer that plays an important part in the decisions I make. Sure, I could just think, “well, as long as I stay warm, I’ll be fine,” but that is only a small part of the picture. I have to look to my future and make decisions that will help me move toward retirement and buy my forever home.

Staying on my plan to move in the next 2 years requires a great deal of thought. What location would be the most beneficial for me when it comes to weather? CAD is so uncommon that finding the right hematologist holds the most weight. I could move to the perfect location but if I can’t find a knowledgeable specialist, I could find myself in a bad situation.

Obviously, to avoid these mistakes, the planning phase is crucial. With it being so cold here (Long Island, New York) for a large part of the year, I know it will not be good for me to stay here in the future. As it is now, it dictates my daily routine, which leaves me missing out on a lot of fun. This is no way to live in the long term. So, moving is the only logical thing and even though moving somewhere else could have its own set of challenges for my health, it beats dealing with the outdoor cold. My biggest concern in living in warm states will be the fact that the air conditioning is blasted inside most places. It’s like anything else: I will learn where it is safe for me and where it’s not.

Read more about CAD treatment

We all know that anything can happen and that life has its ups and downs, but now that I have had CAD for a couple of years, I have gotten used to the changes I needed to make to stay healthy. I have even finally given up wearing that horrible mask.

Unfortunately, life has thrown me a curve ball I never saw coming. It’s like anything else—once you get past the shock and educate yourself, you can keep pushing forward. I’ll keep adjusting and altering my plans to accommodate this disease; after all, I have a whole life to live. I just need to figure out where is the best place to live that life so I can stay warm, stay healthy, retire comfortably, and live my way.