Living with Scleroderma

this is nothing but a curve ball

First UCLA visit this 2014

We arrived a little early at the UCLA Medical center that we were actually able to speak to a representative from the Scleroderma Foundation. She informed us about upcoming events that we should try to attend to get further information and resources.

Dr Furst asked me what has happened in the last 8 months since I’ve seen him and he wasn’t very happy. He reviewed my medical records, my PFT results, Barium Test and CT scan and said my scleroderma is actively progressing.

Dr Furst says they want to treat this condition as aggressive as possible. He’s recommending to go back to cytoxan chemotherapy for a year. I have to see if my Kaiser Rheumatologist will approve another year of chemo.

He said the good news is that most of the damage looks like it’s mostly inflammation which is hopefully reversible. And he wants to see me more regularly, at least every 3-4 months .

*sigh*

Today ‘s doctor visit didn’t turn out exactly how I thought , but I believe God has placed these doctors to take care of me and do their best to treat my condition.

And tomorrow , I’m heading back to Kaiser Sunset for my 2nd Rituxan infusion. Looking forward to some relief from my symptoms.

Goodnight, tomorrow’s another day!
Never stop fighting!

Leave a comment »

Rituxan round 2

I had my first Rituxan infusion (round 2) last Wednesday. The day was long but I was very happy with my nurse. She knew what she was doing and she even found my vein right away.

Hubby stayed with me as always and I’m grateful he always keeps me company. We watched a lot of court shows, smacked our heads and laughed at the cases. I ended up stayed awake the whole time and I was exhausted but at least I was entertained.

I almost forgot how having chemo felt like, I couldn’t get up the next two days. My body felt like it was being pulled down into my bed. It’s been 6 days since my treatment and I’m barely starting to feel nauseous. I hope it doesn’t go through, since I only have over a week till my next treatment.

Until today though, I have to say I’ve been feeling the best I’ve felt in a long time. I think outside if the side effects, the treatment lasted me about 6 days symptom free.

Looking at the bright side of things, today is not over yet. There is still enough time to turn this day around. I’m looking up to God and just relying on His grace for strength and endurance for today.

Leave a comment »

Early 2014 appointments

Right after the holidays, everyone started getting sick around me, both at work at with the family, except for me. During the last round if virus going around, I ended up with a small cold and then I started coughing again, headache and weakness followed by my joints and my whole body feeling really achy.
I had one Rheumatologist appointment and one Pulmonary appointment in January that ended up with new prescriptions, a Barium Swallow Test, a chest x-ray and a referral to take another Pulmonary Function Test.
The Barium test was to check if I was having food (in my case—my pills) stuck in my throat because my esophagus was closing up. The test itself was unpleasant and I really would prefer never to do again unless I absolutely have to. They gave me a container of Barium powder they mix with liquid. It tastes like chalk or unflavored Pepto Bismol. I had to sip it through a straw in different positions (even uncomfortable ones) including some lying down while they were taking x-rays of the liquid going down to my stomach. The worst part is that I had to fast the night before and my stomach was empty and drinking all that liquid was about to make me throw up. When the test was over, I rushed to the restroom to rinse my mouth the white chalky residue from the Barium.
I have been taking a Pulmonary Function Test every 4-5 months so I’m quite familiar with the routine. They make you breathe and hold your breath and blow on the tube to measure my lung capacity and other numbers they needed. I thought I did so much better than my previous tests because I didn’t have as bad of a coughing fit compared to before, so I was looking forward to an improvement with my results. My doctor also requested for a 6 minute walk test to make sure I can still walk without needing an oxygen tank. The normal oxygen level without needing a tank is 90% and over. And all my previous tests showed I was at least at 96%. So you could imagine the shock in my face when I barely started walking and my oxygen level dropped to 87%. The technician that was helping me advised me that we’ll be redoing the test but now with the assistance on an oxygen tank. I was a little upset. I couldn’t believe it. My previous test not even 6 months ago was fine. How could my results have rapidly declined since then? I asked the technician for a “re-do”, because something must be wrong with his oxygen monitor. He was kind enough to let me do it again without a tank but to my dismay showed the same results.
The following day, I get a call from a medical supplier to deliver an oxygen concentrator, 2 small tanks that could last me 2 hours each on a 2 liter setting, a refiller for my tanks and a 24 hour tank in case of an emergency. The whole experience was overwhelming but at the same time grateful to finally get some explanation and relief from the weakness and headaches. The last thing that I would have ever guessed is that I was lacking oxygen.
I’ve even started using oxygen while I sleep and it’s been helpful in keeping me from coughing in the middle of the night. And not to say that I’m completely cough free at night when I sleep, but I’ve only woken up 3 times in the last 3 weeks and that’s a big deal for me.
I do have to say that my nose has been bleeding more frequently than it used to ever since I started using oxygen. As it turns out, the air was causing my nose to be extra dry. Hubby picked up a humidifier attachment and it worked wonders.
I just had an Echocardiogram last week , so I’m waiting for those results also the numbers from my last Pulmonary Function Test.
Me currently now being put on oxygen means that my scleroderma is progressing. My rheumatologist prescribed 2 more Rituxan infusions; one this Wednesday and another in 2 weeks.
I’m grateful that my attending physicians are quite aggressive with my treatments. I trust them that they know what they’re doing but most of all, I still have faith in God that He is a God of miracles and we’re not giving up until God says it’s over. :)

Leave a comment »

Holidays 2013

For a while there, I actually forgot that I was sick. I did have my usual on and off cough but I was able to hang on during the holidays. I’ve been able to hang out and go out with a few family and friends.
And although I absolutely love amazon prime, I was also able to do some shopping for some Christmas presents and supplies.
I decided on a semi handmade (for the most part) Christmas kind of presents for most of the people on my wish list. I made flower pens, scarves, gloves, caramel popcorn and dinosaur necklaces with hubby’s help.
I have to say that Christmas 2013 is my favorite Christmas so far. “Santa” gave my son a bike, my daughter a dollhouse and me a drumset. The hubby got a grill and used it on that day.
But it wasn’t my favorite Christmas because of what we got but because of the joy we had preparing, choosing, making and even wrapping each present for the people we care about.
It was also great that the kids are old enough to participate and appreciate in the celebrations and understand the reason for the season.
With everything we’re going through, it makes me feel good knowing that God is the only thing we need and should because He has already provided for us long before we knew we needed something :)

Leave a comment »

Just like everyone else

People who suffer from a chronic condition are just like everyone else.  We also have bills, family, work, responsibilities, stress, etc.  The only difference is that on top of all that…. we have our health to constantly think about and deal with.

We don’t expect to be treated special, but we would appreciate a little bit of patience and understanding. We all have different types of illnesses and are affected by them in different ways.

Please be a little bit more patient with us when we don’t get to spend time or keep up with friends and family. Our days are so unpredictable that it’s very difficult to plan things ahead of time. We just go and do things when we are physically able to.  But that doesn’t mean we don’t like being invited or thought of.

I’m so blessed by the people who checks up on me. The ones who constantly ask me how I’m doing and tells me that they are praying and thinking about me. Thank you.  It means a lot to me and my family.

We know that having these illnesses may seem selfish or unreasonable or inconsiderate to some.  I apologize.  But please understand that no words can express how our lives have been turned upside down and side to side since getting sick. It’s very tough to go on with a new symptom to deal with every single day.

Our daily actions are dependent on how barely slept the night before, how we were physically exhausted from having cough or pain attacks, how drained we are from going to the hospitals often for tests and visits, and how frustrated we get for never having enough time to do everything we needed to do.

Just like everyone else…
we also need people to be kind, loving and forgiving.

It’s a tough world out there, even for people who don’t have to deal with a chronic illness.  Let’s try to understand each other instead of finding things to nitpick from one another.  Let’s learn to pray for each other, instead of putting each other down.  Let’s be an encourager, instead of creating confusion in our relationships.

And remember…

….to always do everything in love.

Leave a comment »

Pulmonary Visit Recap

I went for my 3 month check up with my pulmonary doctor today.

The visit started with the nurse trying to get my blood pressure and oxygen. He put a pulse ox on my left pointer finger for 2 minutes and no read. Hmmmm. He touched the tips of my fingers and said they were cold (thank you raynauds). He then clipped something to my earlobe, I guess another instrument they use to measure oxygen in your body instead of the finger. Nope, still no read. Then he excused himself to grab a portable pulse ox and put my right tall finger…. And yes, finally a read… 98% at rest, not too bad.

Anyway, I guess I came a little early for my appointment so I waited a little longer for my turn. I love it how my doctor is brutally honest and straight to the point.

She says after my last PFT (Lung Function test), it shows that most of my results are about the same from the PFT test a few months before that, except that my diffusion rate has shown a decline. Overall, she said that it’s worse than last year.

She read my last Echocardiogram and said that I have a mild Pulmonary Hypertension going on. But we just have to keep an eye out for it just in case.

She asked about my GI. I mentioned my recent issues with acid reflux. She advised for me to tell my Rheumatologist if my new medication doesn’t help. She’s worried that the acid will make its way to my lungs and create more damage. She also advised for me to possibly see a GI doctor if my condition don’t improve.

She told me to NEVER use Allegra for my allergies, because it can damage my lungs even more. She said that she sees me needing a transplant in the future but she wants to prolong it as much as possible with the proper treatments.

She was concerned that I’m not in any other medication for Scleroderma after my Cytoxan and Rituxan Infusions. She felt uncomfortable that I’m not on anything to suppress the progression of my condition. She emailed my rheumatologist to see about me taking some medication to help slow down the scleroderma in my lungs.

She also looked at my CT Scans. She compared my first one from last year and the last one I took earlier this year. The pictures caught me off guard. I didn’t know what to say. I just stared at them. The honeycombing in both my lungs are worse compared to the first one and I didn’t think it could be worse. She also pointed out some cysts that were in my first CT. She said that the fibrosis in my lungs are causing the cysts. The cysts have become bigger and erupted creating holes in my lungs.

So for the meantime, I’m waiting for my next appointment for another Lung Function Test. I have to take a blood test to see if my body can process the new medication to suppress the Scleroderma.

What an exhausting day! But I’m still thankful. Everything happens for a reason! I know everything is in God’s hands! :)

1 Comment »

Stepping Out To Cure Scleroderma

On June 2, 2013 We’ll be walking again to benefit the Scleroderma Foundation Southern California Chapter. I hope this video encourages you to join in the fight. For more information and to join our team, or just donate. please go to http://www.hopefightbelieve.com . thank you.

Leave a comment »

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.

Leave a comment »

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 =)

Leave a comment »

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.

Leave a comment »

Follow

Get every new post delivered to your Inbox.