Living with Scleroderma

this is nothing but a curve ball

Chemo #5

Chemotherapy #5 was a success! Just one more, hopefully, and I’m done.

It’s weird, despite everything negative I’ve heard about taking chemo, mine hasn’t been too bad of an experience so far. I feel some weakness, dizziness, slight nausea and night sweats. And as far as the thinning of hair/ or losing hair, I barely notice any changes. I have been told that everyone reacts to treatment differently and the fact that I am younger may be the reason that my body is taking it pretty well.

Untitled

In any case, I’m grateful. Every time I go through chemo, I notice that I stop coughing for a while. And after chemo session # 5, I also noticed that I haven’t been having too much problems with my breathing. My doctor told that we wouldn’t know whether or not the chemo worked until after my 6th session.

I have another Pulmonary Function Test (PFT) scheduled in a couple of weeks. I’ll find out if my lungs have stabilized or at least if the progression of my ILD have slowed down.

Keeping my fingers crossed.

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My five stages of accepting Scleroderma

fivestages of acceptance

People who have traumatic experiences in their lives go through stages in order to move on. Some say that that five stages of accepting a life changing event are; Denial, Anger, Depression, Bargaining and Acceptance. There are variations with the order of the first four and not everyone has to go through every single one, but Acceptance being last is the most important of them all.

My journey with scleroderma could be traced back to my constant coughing with my second pregnancy, my daughter is four now. I was going back and forth to the hospital and the doctors tell me I have nothing more than just asthma and allergies. I guess I seemed healthy enough otherwise, so there was no reason for me to not believe them.

Then again, it could be that I was just in “denial,” that it was something else that could be more serious. I mean, okay I was coughing all the time, but I was already used to it by now. Taking my tray full of medications everyday was already a part of my daily routine.

On December last year, it got even worst, that it became difficult to even climb up a flight of stairs without having a cough attack and i was constantly tired. My husband insisted that it couldn’t be only allergies since I’m taking all the allergy medications and my coughing didn’t seem to get any better. He requested for a chest X-ray to see what else it could be.

After the results of the chest X-ray, I was finally referred to a pulmonary specialist and a rheumatologist. Further tests were conducted and they were able to finally identify my condition being Diffuse Scleroderma with interstitial lung disease (ILD).

Shortly after my diagnosis, other symptoms started showing up including the tightening of the skin on my face and hands, pain in my joints, difficulty in breathing and more fatigue.

I understand some people go through a stage of “anger” after finding out about their disease. I on the other hand, didn’t feel angry. I think it was the fact that I have my faith in God to give me peace when I needed it the most. I’ve always been blessed to be surrounded by amazing people who care and pray for us. The encouragement and support of these family and friends is what gives me peace. I am constantly reminded that things will all be okay!

For the most part, I am the same kind of person that people know me to be, happy, cheerful me. However, I still have my moments when I feel “depressed.” i think about my children, about the possibility that I may not be around long enough to see them grow up, finish school, get married and have kids. I think about my husband having to raise our children alone. I think about the many things I still want to do and may not have time to. I have those days when I just want to roll up in a ball and cry all day.

Then, I get reminded of how none of us know how long we have to live. If not by a sickness, lives are taken by accidents, natural disasters or even careless individuals. Anyone of us can go anytime. It’s how you spend your days is what counts.

Right when I want to spend my whole day feeling bad for myself, I pick myself up and I think of how I can make memories with my children NOW.I think of how my husband and I can be amazing parents together NOW, while I’m still able. I think of doing projects that I’m able to do, NOW. And I don’t really want to waste my day being sad about the future when there’s much better things to do NOW!

I could say that I would “bargain” with God if He would promise to take away my illness, but I believe God has a bigger plan for my life and the people I love. Instead of bargaining, I’ve been asking God to reveal to me how to use this situation so I can be a better person, mother, wife, daughter and friend. I also want to be an encouragement to others dealing with the same things I’m going through.

We were just given our diagnosis late March this year and it has dramatically changed our lives already. Having busy schedules and active kiddies is typical for us, but now we have to include my doctor appointments, treatments and tests.

In addition , we are now constantly reading and trying to educate ourselves about scleroderma and figuring out how to manage it. I guess that’s part of the “acceptance” stage. The more we know about this disease, the better it is for us to be mentally and emotionally prepared to deal with it.

It is encouraging to know there have been medical breakthroughs in research that may soon help cure Scleroderma. We are also using social media to reach out to others who can relate to us. I am amazed how we are making friends and exchanging encouragements from people across the country and even across the world.

It’s not always easy feeling the symptoms I have, because I have good days and bad days and some bad days are worst than others. But it is so much easier that I am surrounded by a great support system that love and care for me.

You know how people normally say, “at the end of the day…. this and that is what really counts?” In my situation, “The beginning of the day is what counts, because it’s another opportunity to make a difference!”

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Raynaud’s attacking in the Summertime

It’s so hot outside and my Raynauds is acting up with a little bit of fan ventilating around my desk….ha!

Raynauds

If you don’t know what Raynauds is, you can refer to my other post here.

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