I first off want to start this blog post with a disclaimer that I’m not looking for any sympathy from anyone. I merely ask that you keep an open mind and perhaps start to understand a group of people that have difficulties that aren’t visible.
Back in 2012 when Krista was first diagnosed with Lupus, I had no idea what that meant. Lupus is a disease that is still not very well understood. There is no exact reason why the disease occurs. There is no complete evidence that it occurs because of genetics. It is widely believed this could be the reason but we don’t know for sure. We also don’t know what Lupus will eventually affect. There are a number of different body parts that could be affected. Some get what are called butterfly rashes on the their face. Some experience swelling of their hands or feet. Some have their body organs affected. No, back in 2012 when we initially heard the news, we had no idea what we were in for.
It may sound a bit odd but Krista had been blessed up to this point of being sick in the past. She had the experiences necessary that would help her to better combat the diseases of the present. I won’t go into a lot of detail but a lot of the things she had to deal with could be at least mildly controlled. I won’t say completely controlled but she got into a stable enough routine where she could really live her life and be the person she wanted to be. What we started learning with the Lupus was that this disease starts to really affect you and disrupt any routine you may have. The problem with Lupus is that you never know when a flare will occur. You can do your best to control the symptoms but there will be days where you just feel terrible. You don’t want to get up out of bed. You don’t want to eat very much. You suffer in pain and the only relief sometimes is a dose of steroids that can be a blessing and a curse at the same time.
This is the problem of an invisible disease. You don’t know when it strikes. Therefore, you can’t plan very well for it. Yes, you can stay on top of everything. You can make sure you take all of your medications at the right time. You can document how you feel on a daily basis.
Later in 2012 and going into 2013 we would learn that Krista had other illnesses that were related to autoimmune disorders.
Chrohn’s Disease and Colitis.
All of these in addition to the already reoccuring effects of Lupus and other pre-existing conditions. Let me tell you from a husband and a caregiver point of view it’s tough. But I’m going to try to vocalize just how tough it is to see what I see every single day.
- It is tough to manage all of her medications and make sure she has everything she needs. I can barely take a few pills on my own, let alone big pills like some of the ones that she has.
- It is tough to see her mobility restricted and having to roll her in a wheelchair on certain days. I’m truly blessed that I can still walk everywhere on most days. Boo hoo to my sometimes aching knee. She is subjected to my terrible wheelchair driving skills (by the way I’m sorry Krista that I’m still not the best driver, I’m still learning) and not being able to see items she wants to without my help.
- It is tough to see her at night, crying, and wincing in pain and not being able to do anything about it. The best I can do some nights is to try to massage her pain areas and just be there with her but I know some nights that’s just not enough.
- It is tough losing nights of sleep either making sure she is well taken care of or making up for the day’s work because I had to take her to appointments. It’s not something I regret in the slightest and in fact, it is a great blessing to have that flexibility.
- It is tough to see her sleeping in the middle of the day, sometimes in the afternoon and asking myself, did we push it too hard the previous day? Is she trying to regain energy? Should I keep trying to push her a bit more so that she can at least enjoy being out and not inside the house?
- It is tough to see how some of the people that Krista really care about don’t really make an effort to see how she’s doing periodically. I know it’s not a great thing to expect this from people but it really is tough and saddens me when days go by that there aren’t any communications about how she is doing except from family who we are extremely thankful for.
- It is tough to see people actively looking and judging us each time we park in a handicapped spot. There’s an automatic stigma that if you’re young you don’t deserve a spot and you should give it to others who need it. The tag we have, it’s to eliminate those times where it took 20 minutes to cross a street because she couldn’t move her legs and the only way we could is by taking the smallest of steps and praying a car wouldn’t come by. Or it’s the time when there was 6″ of snow and I took out the wheelchair just to push her to the curb and out of harms way. That’s why we need the spot.
And I think the toughest thing on my part is just the feeling of helplessness. What can I really do? Be her rock? Sure, I will do that until the day I die. Take charge of everything around the house and make it easier for her? Done and not a problem. But at the end of the day, none of that beats back the illnesses.
So how do you beat an invisible disease?
You beat it with love. I am 100% sure that our unending love for each other will beat this disease. It’s in the little things like surprises at work for no reason at all. Love letters on Valentine’s Day instead of expensive gifts. Starting each day (whenever it may be) with a kiss. It’s in doing everything you possibly can in a day in order to make things better and brighten the day.
You beat it with family and friends. There is no greater power than the love of family and friends. Family has been nothing but supportive throughout this whole process. Mom and Dad have done so much. Manong RJ, Manang Rachel, Manong Rob, all of our family in Chicago, DC, the Philippines, Texas. Everyone has been 110% supportive with prayers, love, thoughts, advice, letters, emails, phone calls, texts, mass dedications. I couldn’t ask for more support but I continually get surprised every day.
You beat it with smiles. One of the things that made me fall in love with KristaRose was her smiles. She has these smiles that will just make everything just seem better. They literally light up the room. I know that sounds so corny but so what, it is true. I live for those smiles and it’s my job to make sure she has as many of them as possible. Each one seems like an extra punch to the illnesses to weaken their grip on her.
You beat it with great doctors. Having doctors you know and trust make a world of difference. If you come into contact with doctors that truly care about you and actively want to see how you are doing and will do anything and everything to explain situations to you and make you aware of your options and don’t force you into any decisions, keep them.
Most of all, you beat it with God. He has a divine plan for each and everyone of us. We don’t know for sure why Krista is sick and why she must go through this. Maybe it’s to show her how beautiful life is. Or maybe it’s to show everyone she loves how beautiful life is. Whatever the purpose, at the end of the day all we can do is leave it in his hands. That’s what we do everyday. We pray in the morning and in the evening. They aren’t complex prayers but they are intimate and help us in our way to connect with God. The moment when you lose sight of God is when the illness starts winning.
Again, I wanted to reiterate I wrote this blog post not in getting any sympathy from anyone but rather to show everyone how an invisible disease might look. It is tough to deal with and trust me every day is a challenge. But there are ways to beat it. Knowing KristaRose, she will beat it.