Living with Scleroderma

this is nothing but a curve ball

A Day in the life

A day in the Life of a Person with Scleroderma

6:30 AM- Wakes up with stiff joints in the hands, feet and back, causing another 10-20 minutes to pass struggling to get out of bed even with the pain.
6:50 AM- Put kids’ lunch together, prepare breakfast and help kids get ready for school
7:45 AM- Say goodbye to the kids off to school. Lie back down for 15 minutes to rest from an already exhausting start of the day
8:00 AM- Get ready for work, another challenging task since muscle weakness makes getting ready such a difficult task.
9:15 AM- Take morning meds and head to work
10:00-7:00- PM Spend the day at Work, with constant pain and stiffness
7:00 PM Spend time in traffic on the way home
7:45 PM Back home to have dinner with the family, totally tired physically and mentally
8:00 PM Spend time with the family doing homework or playing
9:00 PM Start putting the kids to bed
9:30 PM Clean up a bit, and take all night time meds
10:00 PM Finally back in bed to try and get some sleep.
10:15 PM Knees, elbows and arms start aching even more
11:00 PM Finally falling asleep
12:30 PM Wake up coughing for 10-20 minutes
1:00 AM Back to sleep
3:30 AM Wake up coughing for another 10-20 minutes
4:00 AM Back to sleep
6:30 AM Exhausted from all the coughing at night, now ready to start the day with more pain and stiffness all over again.

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Echocardiogram ECG

On March 7, I had to go get an ECG at Kaiser.

My rheumatologist wanted to see if my heart is getting affected by my Scleroderma.
In order for them to see better results, they injected Definity in my blood.

By this time, I’m actually pretty used to getting poked around by needles.
It’s sad but true.

Anyway, everything is normal with my heart. Thank God there’s one less thing to worry about =)

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Fibromyalgia

On February 27, I told my doctor that I’ve been experiencing pain all over my body. It’s getting harder and harder to get up and do anything. I would normally wake up having pain barely trying to make a fist. I get restless leg syndrome at night keeping me from sleeping. It’s hard to walk at times because of the pain on my knees and ankles.

She started poking me in various spots of my body and asked me if it hurts. I said yes. And she said that I have Fibromyalgia.

Fibromyalgia is a condition that causes fatigue and widespread pain and stiffness in the muscles and joints. Most researchers believe that it is caused by a combination of physical and emotional stressors.

My doctor prescribed me Nortriptyline and told me I should try to sleep more, avoid stress and possibly do Yoga.

I’m currently on my 6th week of taking my medication and my pain level has gone down tremendously, but I still have pain everyday. And some days are worse than others.

I also found out that there is such a thing as Fibro Fog. Fibro fog is the inability to concentrate and remember things. This is one of the symptoms of Fibromyalgia. It totally explains why I can’t think of the right words to say and I end up saying something different from how I thought it.

In addition to Scleroderma, this is another hurdle I have to go through. More than the memory and pain, the fatigue is the worst for me. It takes me so long to get up and even longer to get ready in the morning. I’m barely out the shower to get ready for work and I’m already exhausted. I don’t seem to ever have enough sleep, no matter how many hours I get. I’m just constantly tired.

I’m trying to cope by helping myself some to remember things. I write things down if I need to remember them. To lessen my fatigue, I’m trying to be efficient with my time by grabbing as much as I can to put things away on the way. I’m learning to ask people for help. I’m learning to say no. To lessen my stress, I only do things that will make me happy. And I spend my time with people I love.

It’s not easy having so many health issues. But I love it that I get to see life in a whole new perspective. I’m learning to prioritize on the most important things first, everything else is just extra.

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Pulmonary Test

On February 26th, I took my 4th Pulmonary Function Test.

It’s funny co’z there was only 4 people working in the clinic and I seem to have worked with every single one of them already. I found out the first guy that worked with me retired and got replaced by a new guy. So maybe I’ll meet him in a few months, LOL.

Taking tests always gives me some anxiety. Unfortunately, anxiety causes me to cough. And coughing messes up with my tests. I decided to take my time getting ready today, not straining myself to not start a coughing fit. Hubby and I even left extra early so I wouldn’t have to rush to my test.

Here are the results of my PFT tests
FVC is the Forced Vital Capacity
From March 2012 58%
to Oct 52%
and Feb 49%

DLCO Diffusion capacity for Carbon Monoxide
From March 2012 50%
to Oct 39%
and Feb 35%

Healthy FVC is 75% DLCO is 80%
I was told that 40% on either one qualifies me for a lung transplant.
However, since I don’t quite need oxygen yet, I’m actually still good.

Even though my results are declining, it’s pretty much still the same.
They just want to do more follow ups and see what I would need next.

For the meantime, I’m quite relieved. It seems like the cytoxan worked for me! Yay!

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