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.
Stepping Out To Cure Scleroderma
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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.
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 =)
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.
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!
Rituximab Infusions DONE
I had two Rituximab infusions. They were 2 weeks apart from each other.The first one was on January 30th and the second one was on February 13th.
Instead of the Oncology department, I was sent to the infusion center at the corner of Edgemont and Vermont. The cool thing with this building is that it’s next to a parking lot that have a few parking stalls for handicapped people. Many people are trying to get into those spots and we were lucky to have found a spot at least one of the two times we had to go there.
On my first infusion, I was told of the possible side effects of Rituximab such as rashes and chills. To avoid these side effects, I was given an IV of Benadryl. The nurse was injecting it slowly and in sections. As soon as she squeezed the liquid the first time, I started feeling loopy. I’ve had bad reaction with Benadryl before like sleepiness, but this was different.
I was sleepy but I started feeling chills and pain on my arms and leg. I couldn’t control my arm and it just kept falling off the side of my chair. I also kept falling in and out of sleep, but the pain made it very difficult. When I finally woke up from my last nap, maybe on hour 4 of the infusion, the sleepiness, pain and chills have all disappeared. I was a little groggy after it was all over.
I messaged my doctor and told her all about my experience. She decided that I should take Benadryl orally when on I go on my second Rituximab infusion.
On our infusion day, it took them 3 tries to find a good vein. They said my poor veins have been abused with all the chemotherapy and blood tests. But I’m glad they found a useful one. I would hate to know what would happen if they keep not finding a “good” vein.
The nurse read the note from my doctor stating that I will be given Benadryl as a pill. I still got a little groggy and fell asleep but not at all like the previous time. This time I had no chills and pain. It was funny that it was my pre medication that gave me such a reaction.
Anyway, this infusion ended about an hour sooner. I still felt some grogginess and weakness after, but it was tolerable. The only other side effects from Rituximab I have experienced is on and off nausea and vomiting. I had lots of dizziness spells and headache. Daily fatigue and weakness was also going for about a week each time. Then again, it comes with scleroderma too, so that’s a bit hard to tell.
For the most part, I’m relieved it’s done. I’m hopeful that there will be some positive results. And I’m very grateful for the opportunity to try another treatment for this disease.
Be Blessed! STAY HAPPY!
Cytoxan #12
I finished my last Cytoxan Infusion 3 weeks ago. All 12 sessions are finished, yay!
I’m very grateful to the nurse staff at Kaiser in Sunset for making all my chemo sessions throughout the whole year not as terrible. They have all been nice to me and hubby and did a great job. I’ll miss them but I’m glad I don’t have to come back.
I survived all the side effects (nausea, vomiting, fatigue and even some hair loss). I absolutely agree with the doctors when they say that chemo affects people differently. Some people have it worse than others. I’m glad I was able to communicate with my Rheumatologist my side effects so she was able to give me some relief with lowering my dose and changing up my other medications.
For anyone out there who’s going through cytoxan or any chemotherapy, I want to tell you that I think you are brave and you are commendable for fighting!
I also understand that some just cannot take chemo, but don’t lose hope, there are other options. Having well trained professionals is always a plus.
Either way, Keep the Faith! Miracles happen everyday! Everyday is a MIRACLE!
I am STRONG!
There are times when I watch shows that make me miss all the times when I was having fun dancing, singing, shopping and going out with my husband and friends.
Then there are days like today, when I wake up from sleeping for 10 hours and still be exhausted. I almost fainted in the shower. I started getting ready for work, but I had to sit down and then finally lied back down because I just couldn’t stay up anymore. I don’t even have enough energy to make it to work today.
It made me think. I miss just being able to get my kids ready for school and myself ready for work without feeling so tired immediately. I miss not having my cough attacks. I miss not losing breath or coughing when I even walk to the bathroom. I miss enjoying sleep without any coughing, pain, numbness in my hands and arms and tingling all over my body. I miss playing with my children for a long time because mommy gets tired easy. I miss being able to open certain packages for my kids or being able to fix my daughter’s hair with no problem because my hands don’t work the same way anymore. I miss not feeling like the way I do.
In the shower, I kept saying to myself, “I am STRONG, I am STRONG!” For a moment I felt like I failed. How can I claim to be strong and not even stay up? Then I realized something.
Physically right now, I maybe weak, but not at heart. My heart is strong because I’m blessed!
I’m still blessed.
I thank God for blessing me with an amazing husband that always takes care of everything that I can’t . I thank God for my children, who constantly makes me happy and reminds me of how blessed I am no matter what. I thank God for my parents who constantly prays for me and lets me know they love me. I thank God for my in laws who takes care of our children and transports them where they need to be when we can’t. I thank God for my supportive coworkers and bosses who are tolerant of me, yet still treats me the same way to provide me some normalcy. I thank God for an opportunity to reconnect with old friends. I thank God for friends and family who really care. I thank God for his provisions. I thank God for a great group of medical professionals taking care of me. I thank God for being able to learn and grow from situations that I cannot control.
What can I say? In every dark cloud, there is always a silver lining. Be BLESSED!
He Never Sleeps Video
He Never Sleeps (by Don Moen)
This is a video my dad sent me. It made me smile! =)
Lung Scan Update and Cytoxan #11
Cytoxan #11
The 2nd lung test consisted of inhaling radioactive gas and getting scanned for about 30-40 minutes.
The good news is that my doctor says that my results were normal, yay!
Last week, I just had my cytoxan treatment #11
I’m having on and off nausea and fatigue. At least its not as bad as treatment #10. In regards to my hair falling off, I’ve been extra careful with my hair. I haven’t noticed an increase in falling out, just about the same, whew!
I guess the smaller dose of chemo is making a bit of difference.
The other day, my husband mentioned that we’re taking a break co’z I’m having 3 infusions, three weeks in a row. The first one will be the Rituximab #1, the second will be Cytoxan #12 and the last one is Rituximab #2.
So, yes, I’m actually looking forward to a whole week of no doctor’s appointments, no tests, no hospitals before more back to back visits, each one between 6-8 hours long each.
During this time, I’ll be celebrating every single day with my amazing family, co’z each day with them is a better day!
