Wellness Wednesdays: Tips for Those with Invisible Disabilities

If you look at me you'd never think I am disabled. People always assume I function very well. What they don't know is my mobility is limited and I need help with many things. My energy and stamina is also very limited and I can only last 15 minutes on video calls. I rarely go out because I am immunocompromised and well there are good days and bad days. My boys keep me indoors so I don't get sick. 

Managed to pull myself together the day after a bad night.

I'm a handful to take care of, so here's a few tips for you and your carers (and spokespersons):

1. The Nile is not just a river in Egypt. Denying your medical condition is just going to make things harder for you and your carers. This was probably the best advise I got from my OG allergologist. It's easier to power on when you know what you're up against. 

2. Know your body. It took me awhile to understand whether I need medical attention from a doctor or when I can just solve an issue at home. It becomes more problematic when you have PTSD. Since I got home I've been more mindful of what's going on with my body. My doctor here advised that I should avoid going to the hospital as much as possible. 

Bad night due to bad AQI. Oxygen went down to 90 and I thought I was going to pass out. 
Really useful to have an oxygen concentrator. Solved the issue in 40 minutes and then I went to sleep.
 

3. Voice out what you need. I immediately tell the boys when I am having a bad day or when the AQI is bad. They change "modes" depending on how I'm doing for a day. When my triggers are turned on I discovered that sometimes you just need to rant to a trusted person and then you'll be okay. [See also my post on "Managing Stress and Triggers"]

4. Address issues as they come, don't wait for things to get worse. If you're in pain, it's better to do something about it than wait for it to go away. Things normally just don't "go away", they get worse! My physiotherapist advised that oftentimes there's pain that can usually be resolved with exercise. I exercise whenever I have back pain, leg and arm pain. I follow the exercises my PT taught me and that oftentimes resolves issues. 

5. See a doctor when you are "concerned". A lot of patients in the PE group I'm in ask whether they should see a doctor when they experience symptoms (i.e. leg swelling, shortness of breath). The advise of other patients is always the same, "Don't search your symptoms on Google. See a doctor." Our bodies are all different, so if you are having concerns, go see a doctor. 

6. Surround yourself with people who understand. I've been ridiculed because of my medical condition. Not everyone would understand so let it be. Just focus on those who truly love you. 

7. And most importantly, pray. Draw strength from your faith and the love from your family and friends. 

Having invisible disabilities is hard to manage and not easy to understand. Don't let it keep you from doing things you love. Just accept it and adjust as needed. Work with your doctors to see how you can improve the quality of your life. 

#BeKind #StaySafe

Atas!

Atas is a term they use here in Singapore. It refers to "VIP/being treated like a VIP" or in colloquial term in the Philippines it means "sushal". I've known about the term, but it was the first time today it was used for me. 

After my doctor's appointment I jumped in a cab. The taxi driver was quite friendly and asked me if everything was alright with my hospital visit. I said my doctor was happy with my progress and that we spent an hour for the consultation. He said, "Wow! You're atas!" I laughed at his exclamation. He explained that doctors usually don't take that long when they see their patients. In the short ride he said atas several more times because he couldn't believe my doctor spent so much time with me. 

Well, he would have probably hit the roof if I told him my doctor has written a six-page report about me. He started the report in February and updates it whenever I have something new. The one-hour consultation isn't really a new thing because he really spends a long time with his patients (most are elderly, I'm the odd one usually hehe). It is unusual for a doctor to write a mega report, but he's been keen to solve the mystery of my blood clots. He explained that it's really unusual because my tests do not clearly show the cause and they don't add up. He said my case is more exciting than a Kdrama. Hahaha! 

I used to be so anxious about not knowing. Other similar patients like me usually get a full explanation from their doctor. I've had several doctors in different hospitals try to crack the mystery, but no answer has been found. After three years of chasing to solve the mystery and getting poked so many times I've given up. I'm just leaving it all to God. I've also re-connected with one of my favorite saints, St. Jude, to pray for another impossible request. 

So I'm atas. I look at the mystery now as a special challenge for me from God. It must be the next miracle He will provide for me soon :)

 CB///*Yr2/150 #StuckAtHomeDay/Yr2/173 #NewG297 #Home55 #Xmas108 #StayHome #BeKind 

Indestructible

"There's nothing you cannot do," is a lesson my parents taught me growing up. They impressed this on me whenever I would share my fears (like recitation!). They also told me how Ate topped the chemical engineering board exam. She set aside her nervousness while taking the exam. I learned to take a deep breath and pray to calm myself before I do anything that makes me nervous. 

Abating fears is not easy especially if you have anxiety. It's often hard to quiet down the voices in your head. I've recently had to deal with being medically ineligible to get vaccinated. At the prodding of my respiratory doctor I rechecked with my vascular doctor if I could get vaccinated. He said yes. I also checked with my cardiovascular surgeon and he said yes too. I trust my doctors, but of course I'm still scared because of the previous risks that were raised to me. 

So I prayed and asked God to remove my fears. My doctor gave instructions on how I should go about it. I then did some research and slowly started to understand why I should not be scared to get vaccinated. The NUH website gave advise for those medically ineligible. There were two important points that struck me:

(1) If medically ineligible check back with your specialist every few months because more data may be available (I was told no in June and by end August there was more information available for my doctor), (2) You are ineligible if you have low platelet count. [Source: NUH Infographic]

It was a blessing in disguise my other doctor ordered for a blood test. It included my blood count and I'm in the normal range (in fact it increased the past few months). Whew! What also helped me was Dr. Mike Hansen's video explaining the death of a doctor (video here). All of these just unfolded a few days after I prayed for help. I really want to do this for my family. 

I wasn't sure about writing about this today. I read first today's Kerygma reflection and was surprised to see the headline, "Do not fear, God is here". So I went ahead and wrote about how my parents taught me how to be resilient -- just have faith and trust in God! <3

"Say to the fearful of heart: Be strong, do not fear! Here is your God, he comes with vindication; with divine recompense he comes to save you. – Isaiah 35:4"

CB///*Yr2/147 #StuckAtHomeDay/Yr2/170 #NewG300 #Home58 #Xmas111 #StayHome #BeKind

Astonishingly Amazing April

I thought April would be a chill month where I could rest and recuperate. Turned out to be a very, very busy month! The good thing about it I end the month on a good note. I was able to do 5k+ steps today! The last time I was able to do that was in early February. 

That's a big deal for me because my average step count was only 2k per day at the beginning of the month. I used to average 6 to 8 thousand a day when I used to go to the office. At least 10k when I travel. It's been hard for me because I feel like I'm always carrying a heavy backpack uphill. That's why I walk very slow. 

I'm getting a bit more clarity now on what I'm going through. I did a number of tests in the last two weeks. It's been exhausting, but at least I'll soon find out what can be done to improve my quality of life. In the meantime I still need to stay home to rest and recover. 

Happy to end the month on a good note. Changing my mindset to improve at least 1% a day helped a lot. I spent a lot of time praying and focusing on where I want to be. Circumstances also forced me to strive harder, but I've been reminded to take it slowly. 

With faith, things can only get better :)

CB///Yr2/20  #StuckAtHomeDay/Yr2/47 #StayHome #BeKind  

Watching the World from the Window

I finally have a view from my window. My first room only had the wall of the hospital outside. At the ICU at least it was the window where the lifts of the doctor offices were located. Now i could see the hotel across the street, a major thoroughfare, some patches of green, and a school. It's hopefully a sign that I'd soon be out of the woods. The school is also serving a reminder that I still have a mission.

After tea break today I stood by the window to watch what was going on outside. Saw one of our buses pass by, several luxury cars, students just out from school about to cross the street, and construction workers draining the water brought by the heavy rains. Life goes on outside while i stay put for now.

I still follow my doctor's advise to stay offline. This is to reduce stress and focus my mind in getting well. I've been using the digital wellbeing function of my phone. It helps a lot and it's forced me to rest. I still read the news and all i can do now is pray that things would get better. Seeing so many countries go on lockdown again is sad. Here in the hospital, they have been vaccinating the frontline workers already. 

My doctor had me scanned again today. We took the risk to rule out anything serious. He brought good news that my scan was clear. It doesnt explain though why I had clots again. He said that it's good news that there's nothing serious to worry about. We just need to plan what to do to prevent another clot. My other doctor suggested an IVC filter, but my other doctors are not convinced. We'll have to discuss more in the next few days. What's important for now is I get a good night's sleep.

CB///278 #StuckAtHomeDay/308 #StayHome #BeKind

Voice Typing Today's Blog

Hi everyone! It has been a challenging day today. They had to switch my drip to my right arm. My veins are too small and keep swelling up, so I was told not to move my right arm for now. I'm right-handed so this is proving to be difficult.

I remembered that with Google Assistant you can use it to voice type. This is the first time I'm using it to blog. I remember that time I taught Lasallian Brothers in Rome how to use this feature together with Google translate. They said some of them had difficulty typing and some shared that it was hard not to have a common language to communicate with each other.

If my dad was alive today he'd be using this feature a lot. Growing up he used to ask me to type his writings but he had the most difficult handwriting to understand. Eventually I got used to it that's probably why Mom gave me his love letters to her. It's one of my treasures. 

Isn't technology amazing? What about you what new technologies are you using to make your life easier? What features have you used with your parents?

Happy Sunday everyone!

CB///276 #StuckAtHomeDay/306 #StayHome #BeKind 

It's Hard to Stay Offline

My doctor advised me to stay offline, reduce screen-time, and rest. I was surprised they mandated an extended medical leave so my body can rest and recover properly. I understand why my doctor mandated this, but it's been hard to stay offline. 

I woke up early and was about to get up, but Sweetie encouraged me to sleep more. I did because my head was throbbing. I took a peek at my phone and my head hurt more. I immediately turned it off and went to sleep. I finally got up after lunch because I was hungry. 

Yesterday's ride back home. 

After lunch I took several peeks on my phone. I think I'll need to keep my phone away from me so I can stay offline and keep my mind off work. I also need to stop multi-tasking to give my brain a proper rest. I guess it's the time of the year to clear the cache. 

For the next few weeks I'll catch up on sleep and spend more time doing offline stuff like reading books and quilting. Last night I finally finished decorating our tree since the additional gnome decor finally arrived. I'm still working on my Christmas project and started to work on it again today. The funny thing is I ended up sewing my daster on it. That means I really need to rest! 

I sewed my daster to the quilt! Gaaaah.

Will focus on resting my mind and body for now. I will still blog daily :)

CB//254 #StuckAtHomeDay/284 #StayHome #BeKind

Unwell

Sorry guys, I have no energy to blog today. I was much better yesterday and went walking with Sweetie, but things just suddenly switched back to not okay status. Don't want to bore you with the details. 

Maybe my blood is low on milk tea content? Lol. 

Hopefully things will be better tomorrow. 

#CB//249 #StuckAtHomeDay/279 #StayHome #BeKind

Dance to the Rhythm

Waiting for meds.

Yesterday was what my PT warned me about. It was a two steps forward, but three steps back kind of day. Went to see my doctor this morning for my regular check-up and he gave me medication for the meds. I'm on the fence on whether I should bother my cardiovascular surgeon.

I think this is the day I realized that I need to understand more about living with arrhythmia. It was discovered six months ago when I just suddenly had dizzy spells and strange heart rate. I was so exhausted (just as I have been since yesterday). My doctor explained to me when it happens my heart beats like it's on a marathon. That's why I feel so exhausted. 

I had to stay at a cafe after my check-up since I felt so groggy. Ate a bit before going home. It didn't help that the Grab driver was arguing to pick me up at the other side of the hospital. I refused since I booked my pick-up location correctly and it would have been detrimental for me to walk a block to get to where he was. A little empathy picking up passengers from a hospital would go a long way noh. 

Got home and did some important stuff for work that couldn't wait and then I took a long nap. Woke up when Sweetie arrived. I'm thankful that the nap helped because we had a scheduled housewarming get-together that I didn't want to miss. Seeing friends always helps me get better. 

Housewarming.

Tomorrow I have to do a bit more research how I can conquer this weird heart rhythm. The strange thing is it springs on me unexpectedly and normally when I'm doing much better. It shouldn't be that way. I will not be defeated. 

Pray for me, k?

#CB//247 #StuckAtHomeDay/277 #WFH165 #StayHome #BeKind

The Unexpected Rhythm

Started my day really early today, but after three meetings I just suddenly felt dizzy. Thought it would be gone after resting for 10 minutes and had to take the rest of the day off. 

It was an unexpected arrhythmia episode I guess. I'm still not okay despite napping most of the afternoon. I was supposed to have physiotherapy today so I checked in with my PT via Whatsapp. She suggested I keep my feet up and monitor for swelling. Yup, legs were swollen when I woke up. Sigh. 

My PT did warn me though that recovery won't go smoothly since I've also just transitioned to new meds. It's just so strange for me since I even went to bed earlier last night. 

Pray for me?

#CB//246 #StuckAtHomeDay/276 #WFH164 #StayHome #BeKind

Three White Hair

I thought I'd use the title "Three White Hair" today because it's what made me laugh out loud today. I was chatting with my seatmate when he said he was so sad. I asked why and he said he had three new white hair! I burst into laughter because he sounded so serious! I told him he should treat it as wisdom hair. 

White hair = Yoda = wisdom! Yaaaas!

I definitely have more than three white hair. A huge chunk of it came out only this year. I also have multi-colored hair, but I think it's largely due to my health fluctuating. I don't know about other cultures, but it's a belief back home that white hair can be caused by stress. Inuuban na ako dahil sa hirap ng buhay! (My hair is turning white because life is hard!). 

I used to pull out random white strands I would see. Now I'm just leaving them in there to wear as part of my "evolved" self. Much like how Gandalf evolved as Gandalf the Grey to Gandalf the White. As I told my seatmate, treat them as your wisdom hair. 

Brother Bo's video today is a great way to look at obstacles. This year has been full of obstacles for all of us, but it depends on you how you treat those obstacles. Lots to learn from this video, go watch :)

I realized today that there's been so many changes to my body this year. I thought that my body would have a boost this year since it's been 7 years since my heart surgery. It didn't happen and I realized that as you age these are some of the things you can expect. There's no way your body is going to be the same and you have to work harder to keep it in good shape. I'm happy to share that I'm feeling much better compared to a week ago. 

My doctor was right, it takes time for your body to go back to normal after a viral infection. You can't wait around though for your body to miraculously go back to normal, you need to work hard to get back your stamina. I'm so grateful I have the most patient physiotherapist in the whole wide universe. 

Work it, work it :)

#CB//243 #StuckAtHomeDay/273 #WFH161 #StayHome #BeKind

Got Back on the Horse (Got Me in Trouble Last Week)

I went to see my doctor the other day to get the results of the DVT and IVC scans I did last week. I also raised my concerns about how I felt after I had physiotherapy last week (the one that triggered the post "It's complicated". 

I really wanted to move forward from the setback so I immediately got back on the horse last week. My physiotherapist monitored everything and we only did 4 minutes on the bike and other light exercises. My body's reaction a few hours after was bad. I barely slept and my whole body felt like it was being pricked the morning after. 

My doctor said, "Please send my congratulations to your physiotherapist." He said that if I felt pain after the session it meant the exercise was working. I was honestly surprised with his reaction! Because it was my first time to feel that kind of pain and I thought it was really concerning. 

My doctor said it's normal that my stamina isn't back yet after having myocarditis and it may take 3 to 6 months before things normalize. It was a nasty virus after all. He said I was on the right track to get well since I'm doing the needful -- eating properly, sleeping 8 hours and exercising. Nothing to worry about since my heart and lungs are fine. And the good news is my scans came back clear so I'm now transitioning a less evil medication. 

So today my physiotherapist gave me the option to take things slow. I chose to get back on the horse immediately. I don't know how I'll feel tomorrow, but I think it's better for me to just keep going to get back my stamina and continue my quest to be better. Pain must not defeat me! 

Wish me luck? And, of course, pray for me :)

#CB//239 #StuckAtHomeDay/269 #WFH159 #StayHome #BeKind  

Thank You for the Hugs and Love

I was feeling so unwell yesterday and asked hugs from everyone. After I asked for the hugs I went offline and focused on finishing work and rested after. I was so surprised this morning when I got an outpouring of hugs and messages of love from family and friends. Thank you from the bottom of my repaired  heart <3

Showing your support for us who get sick helps a lot. It makes us feel we're still needed and does wonders to our fighting spirit. My doctors believe so much in me I forgot to ask for some rest time. My friends here were telling me I should have taken a break. I'm so busy at work right now it did not cross my mind to ask for some rest time from my doctors. I figured since they only gave me dizzy meds I'd be okay after resting during the weekend. Not. 

I'm still oddly lucky because despite all these mishaps I never had to stay in the hospital. And that's a big thing for me. I dread having to stay in the hospital especially during this time. You also don't really get enough rest at the hospital since they check on you every other hour. So I'm grateful that I'm able to hold up even with my complicated body. 

Tomorrow I am scheduled to do some tests. I hope and pray that the tests would be positive and help me with my quest to reduce my medication. If it works out it means I'll probably get off one of my medications next week! This medication has a lot of side effects. I think I can only get better when I stop taking it. We'll see :)

#CB//231 #StuckAtHomeDay/261 #WFH155 #StayHome #BeKind 

It's Complicated

I was told after heart surgery I am one in one hundred thousand. It was funny because nurses, pre-med students flocked to my room to have a look at me. I didn't mind since I thought it could help someone they treat in the future. I even told my second opinion doctor that I may decide to donate my body to science once I pass. Seriously, yes. My family though would probably disagree. 

After PT yesterday. Must get stronger. 

I'm feeling a little bit sad today. I just read a summary my second opinion doctor wrote about my condition. She mentioned the term complicated a couple of times in the report. I've always known that my body is different from everyone else. It's an intricate system (don't worry I won't bore you with the details). My doctors told me I've been this way since I was born and it's never really bothered me. And I'm just grateful I'm still alive and can do to contribute. 

In a lot of ways I know I won't be me without being different. My doctor told me I'd probably be very different if I didn't have those tiny cavernomas in my brain. Sometimes though I cannot help but think, would my life be different if I had a normal body? If I did I would probably have more adventures. Maybe I'd be an extrovert. Maybe I'd be more friendly, more outgoing. I'd have more energy and be able to do marathons, climb mountains, hike, bike like crazy. 

But that's not me. God gave me this body, challenges, and mission. I will not have it any other way. I am thankful and grateful for all my family, friends and colleagues who understand that I am not physically strong like everyone else. They know that despite all the challenges I face physically that I give what I can. 

I thought I'd write this for all other people who are like me. Especially for those persons who have bodies that science don't completely understand yet. We are all created different after all. So just live the best way you can. Just love and live happy. 

#CB//230 #StuckAtHomeDay/260 #WFH154 #StayHome #BeKind 

Why My Heart Went Whoopsies

I'm back to my usual cheery self after the staycation Sweetie and I had. My body is still recovering after my heart went whoopsies two weeks ago. My doctors ordered a lot of tests and they said my heart and lungs are okay. I was still baffled though what really happened. 

My heart went whoopsies because I had a viral infection. It's a mystery how I got it since I rarely go out. I could only trace it to a taxi driver who was coughing really bad when I boarded his taxi (he opened his window, pulled down his mask and coughed). Unfortunately the virus affected my heart and caused other issues. And that explains why my immune system was so angry. 

Whatever it was that afflicted me my body combated it and my mind eventually shooed it away. We have been taking all precautions, but I still picked up a virus. I was advised to just wear a fabric mask and that's probably how I picked up the germs. My other doctor advised it's better for me to use a surgical mask since it could protect me better. 

I'm feeling much better now and went for my physio session today. My PT said we'll take it slow until I get confident again. My doctors said I have nothing to worry about. I just need to eat well, get enough sleep, exercise and be happy. Next week I will have some tests which will hopefully show that I can get rid of one of my medications (the one that's making me heavy in the last two years). 

Thank you everyone for your continued prayers and love. Hugs to all. 

#CB//223 #StuckAtHomeDay/253 #WFH149 #StayHome #BeKind 

You are Always Worth It

 "Be worth love, and love with come." - Louisa May Alcott

I'd like to think I'm in a better place today than I was a few days ago. I go through a roller coaster of emotions whenever I get sick. My seatmate asked me once how I cope when I get sick. He asked me this question after having a flu. He said he can't imagine how I cope again and again when I get sick. 

It's a struggle. The moment I feel pain I start getting sucked in a black hole. It went really bad last year, I had to take a break (it is probably PTSD). One thing I was told I needed to do was to love myself. It took awhile, but I eventually learned the reason why I had to do that for myself. 

(Source: LoveYourselfPH)

My doctor called me several times today. He had been studying my tests and took time to explain things to me. I told him I really appreciate the effort he put in connecting the dots and giving me advise on what to do next. He said, "You have suffered enough and you are a nice person. You are worth it." 

My heart is full. I am so grateful to my doctor for putting in so much effort to read the reports. It gave me so much hope and the strength to keep fighting. Thank you my dear doctor <3 

For my friends who are also struggling, please always remember... you are worth it. And thank you to all my family and friends who have been reaching out to check on me and to pray for me. I really appreciate it. <3 <3 

#CB//216 #StuckAtHomeDay/246 #WFH145 #StayHome #BeKind