Wellness Wednesdays: Dealing with Life's Mysteries

I have learned to accept the fact that doctors and science cannot explain everything. The best way is to live your life the best way you can. I made this comment last night in the pulmonary embolism patients group. I remember when I joined the group many years ago, I was confused and anxious about the diagnosis. Getting a PE is always a surprise to everyone. You only find out you have it when it happens. 

In my case, it took over a year and getting a second opinion before I was diagnosed with it. I was bewildered and realized if I didn't push to see another doctor I'd probably be gone now. I didn't dwell on it at that time because I was busy preparing for a trip. I was grounded by my doctor after that trip, haha. I went on with my life, but eventually had a second PE. 

I actively comment back to new patients who join the group. I know and understand what they're going through. They are often frustrated, bewildered and lost. Looking for answers on why you had it. Some are lucky to know why they had it. Some get it because it's in their genes. Some due to birth control. Others due to giving birth. But there are people like me who would never know why I had it. 

I've made peace with that and embraced it as a life mystery. Doctors don't have all the answers. I've seen a good number of them. I did so many tests and they generally told me to just monitor and don't let anyone open you up again. My focus now is to improve my quality of life. Here's what I've learned so far:

1. Not all your questions will be answered, just let it be. Treat it as a mystery and just let God take care of you. 

2. The Nile is not just a river in Egypt. Denial will just frustrate you further. Just accept it and focus on improving your quality of life. 

3. Not many people will understand what you're going through. Some would be sympathetic, others would be distant. Others would expect you to be "normal". Just focus on appreciating those who are around you. 

4. Don't beat yourself if you can't be what you used to be. Just be at least 1% better than yesterday. 

5. Find simple joys and be grateful of everything. 

#BeKind #StaySafe

Hope from a Tiny Thing

"I'm always excited to meet a new complicated patient!" 

Finally met my new cardiologist this morning and that's what she said at the end of my appointment. I haven't had a proper check-up since I left Singapore. I've been feeling out of sorts since I got my booster shot and thought it would be good to see a doctor. I'm also overdue to do tests. I was supposed to do the tests in Singapore in August, but I don't think I should wait. 

I pushed to see a doctor because I've been feeling miserable. My activities have become more limited in the last six months. It's frustrating because I can't even cook regularly or spend more time gardening. My back has been complaining again from sitting too much. I've had to force myself to do wall-pushups everyday and hope I can eventually do some spinning again. 

The most important thing I got from my doctor today is hope. She's having me try a pill. She said she has many patients like me who have been able to resume their activities. That's what I hope will happen because I still want to be able to do things with my family. I'm grateful my doctor gave me some hope. I'm really glad my pulmonologist sent me her way since she specializes in patients like me! Yay!

#BeKind #StaySafe

 

Coping with Pulmonary Embolism

World Thrombosis Day was last October 13. I've been so busy I didn't notice that the 13th passed already. I am a survivor of two pulmonary embolisms. The first one was in 2018 which remained undetected for many months. I had to advocate for myself to get a second opinion since my first respiratory doctor just kept piling me with asthma meds. Several trips to the ER also did not catch the culprit. It came to a point I could barely walk at work. I could have died. 

The doctor at the clinic where I insisted to get a referral to a specialist laughed at me. He said I was just going to get the same diagnosis of asthma. I knew though something was terribly wrong. I could barely do any of my regular activities. Because I was lead to believe it was asthma I'd sleep with an air filter beside me. I'd sleep sitting upright. It took a week of tests before my new doctor figured it out. He originally thought it was COPD. After several tests they saw I had a massive blood clot in my left lung. 

Investigations to find out the cause followed after finding the clot. It wasn't genetic. It wasn't caused by a DVT. Months later I ended up with an interventional radiologist who declared I had May Thurner Syndrome. He recommended a stent, but my cardiovascular surgeon vetoed it. I was able to resume my activities, albeit a bit slower, but I easily got exhausted. I was in fighting mode though and got better with physiotherapy. 

At my ICU bed 2 days after I was transferred from the ward.

I was supposed to go off blood thinners by December 2020. My doctor transitioned me from Xarelto to Plavix. A week later after I started I was warded again. I went through CT scans, but the radiologist said they only saw residual clots (meaning it was the old clot). Two weeks later I was warded again and my respiratory doctor instinctively had me tested and saw I had multiple new clots. 

The second clot in January 2021 proved to be too much for my body. I went through numerous tests again - blood tests, leg scans, venogram, VQ scan, cardiac catheterization, two biopsies and even more blood tests - to figure out what the cause of my clots were (you need to know so you can prevent it from happening again). Oh did I mention I was warded again ten days after discharge? 

Finally stable, October 2021.

Coping with pulmonary embolism is a huge struggle. It drains you physically and mentally. In the past year I've had to visit a doctor every week. I am lucky to have the support of my family and close friends. It is not easy to understand what I've been through, but I am a survivor. The disease has taken away a lot from me, but I'm happy that I found the real me again and my faith is stronger than ever. 

Here's a shortlist how I coped:

1. Faith, lots of prayers and prayers from family and friends

2. Supportive family and friends, I now know who really loves me

3. Good doctors, nurses, medtechs and my amazing physiotherapist 

4. It was also helpful to be part of the Pulmonary Embolism support group (it also helps when you're feeling better to help others who just found out they've had a PE)

5. Writing everyday has also helped me. My doctor insisted I keep myself busy so I don't deteriorate. Early this year typing on a keyboard was the only thing I could do. I struggled with brain fog, but it started clearing up when my medicine dosage was adjusted. 

The most important thing I've learned through is the importance of advocating for yourself. Only you know your body the best. The cause of my clots will remain a mystery (multi discipline doctors have investigated to no avail). It's okay not to know, what's important is I'm still alive and I'm finally stable enough to go back home. 

Bottomless thank yous and appreciation from my doctors, the amazing nurses and medtechs and other health workers who have been taking care of me. For my family and friends, thank you for loving me, praying for me and being there through this. 

Feel free to ask any questions by leaving a comment below or you can drop me a message through my FB page or YouTube channel. 

Happy weekend everyone!

CB////*Yr2/188 #StuckAtHomeDay/Yr2/209 #NewG260 #Home18 #Xmas70 #StayHome #BeKind

Moving from a Space of Fear to Love

I got curious after watching the trailer of "The Me You Can't See". A friend said he cried when he watched what Lady Gaga went through. I don't have access to the film so I watched a few videos and read a couple of articles. I was so surprised with what Lady Gaga went through. It never crossed my mind that she went through that kind of horror. 

An article from FoxNews quoted Lady Gaga who said, "For a couple years, I was not the same girl," she said. "The way that I feel when I feel pain was how I felt after I was raped. I’ve had so many MRIs and scans where they don’t find nothing. But your body remembers."

I thought about the line, "I've had so many MRIs and scans where they don't find nothing. But your body remembers." It's been three years since the first blood clot in lungs was discovered. Despite many CT scans, MRIs, venogram, angiogram, catheterization etc. the cause has not been found. I have several doctors now putting their heads together trying to figure out what's causing my clots.

It was very timely that our speaker at writing class today spoke about moving from a space of fear to love. You basically cannot create something out of nothing. I remember the days leading up to getting hospitalized. I was so nauseous, dazed, unwell. I tried to fight it because I was chasing after deadlines. Eventually I ran out of fuel. I tried to use the fumes to fight back. I just got worse.

Our other speaker today also said, "Your body is a manifestation of what's happening in your environment." I was broken. It took me months to realize that God was navigating me to another path. I needed to save myself from myself. I only started to improve when I realized I was functioning out of fear*, not love. 

I've just let things be and I have faith that in time I will be healed. At least now I feel I've began to refill my love tank. I've started creating again and I think that's what is important for me at this point. 

Do all things with great love.

CB///*Yr2/42  #StuckAtHomeDay/Yr2/69 #StayHome #BeKind 

*One of my doctors pointed out that stress can cause your blood to coagulate. (Read more here). The funny thing is whenever I'm back home I never get sick. 

Hope in a Tree

We have this huge tree outside our home in Manila. It's been there since we moved. It has survived all the typhoons that passed and it luckily did not burn when the roof of the warehouse beside us caught fire. 

L-R, top to bottom: January 2020, Q4 2020, April 2021, May 2021.

Last year before we left for Singapore the tree looked really sad after the Taal Volcano erupted. It eventually deteriorated and we thought it was going to die. Lo and behold the tree recovered. Miggy sent me a photo and the tree looked really healthy again. The tree is a survivor!

I've been feeling exhausted again the past few days. My doctor had to lower the dosage of my meds because I was having unusual bruises. I think it may have affected my energy. Miggy sent me a photo of the tree this morning. It had yellow flowers all over! 

The yellow flowers are so pretty :)

I told myself, if the tree could do it, so could I! Seeing the tree with so many flowers brought me so much joy and hope. I think it's the same for our current situation. We'll all eventually get out of this horrid pandemic and blossom with happiness once again. 

Happy weekend everyone!

CB//*Yr2/34  #StuckAtHomeDay/Yr2/61 #StayHome #BeKind   

The Beauty of Resting

Sleep score finally reached 88 when I checked my Fitbit this morning. I did not sleep well all week and that's probably why I've been feeling exhausted. It got worse after I ventured out alone for the first time for my doctor appointment. I realized walking outside on a regular day versus doing evening walks at the park is so different. 

So today even with good sleep I rested most of the day and took a nap too. I really can't rush my body to recover. It has it's own good timing and the best I can do is eat well, sleep properly and do the right exercise. Normally the only rest I do is when I sleep at night. I'm usually doing something the whole day. Mom would always say I'm like a kiti-kiti*. 

I remember when I was a child I didn't like sleeping in the afternoons. I absolutely abhorred it. They either had to bribe me or threaten me before I'd go to bed. Usually I'd just lay there, but never really fall asleep. The only time I learned to nap in the afternoon was after watching ASAP and I was already working then. I now nap, but only when I literally conk out on the couch haha. 

It would be really great if I could recover somewhere where there is a hammock. Mom used to have a duyan in her garden and it was my favorite place. That's the place I go back to in my mind whenever I meditate. It's the place where I can just be calm and rest. Well since that's farfetched for now now, I'll just have to make do with our couch at home. 

Have a blessed Sunday everyone!

CB///304 #StuckAtHomeDay/334 #StayHome #BeKind

Confused, eh

I'm so annoyed with myself. I spent the afternoon cutting fabric to finish a quilt blanket project I started 18 months ago. I finished measuring cutting the fabric and then realized I made a mistake with the measurement. Grrrrr. I didn't have enough fabric left so will need to find the same fabric so I can complete the blanket. Sigh. 

And the mistake is due to one of the issues I've been having -- confusion. I noticed this when we went home from the hospital in mid-January. I told my doctor about this and he wasn't too concerned. This maybe due to breathing issues I'm still experiencing and will hopefully resolve soon. I'm usually on-point with most things and sometimes it gets frustrating. 

One of the dangers of this is getting my medication mixed up. Ahh, this is where I have to be very careful about. I must not double up or miss drinking my meds, it will be disastrous if I do. No worries, my neurologist also checked me recently and said I should be fine. Will just need to monitor myself closely and my doctors gave me pointers what to watch out for. 

On a happy note, I finally finished my Christmas project. I started it in October and was able to send my creation to a few friends in the Philippines. I haven't been able to give the ones for my friends here in SG because December got disrupted. It was impossible to sew at the hospital since my hand was always pre-occupied with another type of needle hehe. Here's what I made for my friends.

It's a mug rug! It's meant to be used for your coffee or tea. I'm glad my friends liked it. Here's another version I made -

If you want to make one for yourself you can watch the video below or read the instructions on The Evening Quilter -

CB///303 #StuckAtHomeDay/333 #StayHome #BeKind

Ventured Out Alone for the First Time in 2 Months!

"Good job in coming alone!" exclaimed my doctor's nurse when I arrived for my appointment today. It's been two months since I've gone out on my own. Sweetie has always accompanied me when I have to see my doctor. 

It's been a month since blood clots in my lungs were found (pulmonary embolism). When I got home after 11 days in the hospital I was surprised that I was unstable when I walked. I clutched Sweetie's arm when we went out of my hospital room to freedom. I had to learn to be confident again to walk without holding on to Sweetie or rails. It took a week before I left go of Sweetie's arm when we went for our evening walks, but then I got admitted again after ten days. 

I was in the ward again for 5 days and walked around my room (with the dextrose in tow) everyday. I didn't want to start from zero again when I went home. When I got home we re-started our evening walks. I worked mostly on increasing the distance I could walk without getting breathless. I'm improving and I had to be brave about going out by myself today. 

I had a huge smile on my face when I saw the Grab car that picked me up. It had Pikachu stickers all over it! I asked uncle if he played Pokemon Go. He said no and explained why his car had stickers all over. His son works for the Pokemon company that organizes Pokemon events here in Singapore. He named a few events and I told him I've been to some of them haha. I had a good feeling about my expedition. 

My doctor was happy with my progress. He explained that there are many patients who never know the reason for their clots. He said be comforted with the fact it isn't cancer or an issue with my IVC, legs or arms. It's just what it is. He also said it's good that I've been walking after dinner. I could also start doing PT again. Yay! I'm not in good condition yet to go back to work and will need to rest for now. 

I was so happy with my progress I thought I'd buy Sweetie his favorite Mexican coffee bun. Managed to get it and went home. I'm properly exhausted now and will now just rest. I'm happy I was able to finally go out alone and buy bread! With God's grace I hope to be back to normal soon. 

CB///302 #StuckAtHomeDay/332 #StayHome #BeKind

What is God Disciplining Me For?

The readings the last few days has been about trusting in God more. Last night's reflection on Didache asked about what you think is God disciplining you on. I've been reflecting on this the past few days since I'm working on defining my core. After watching Bo Sanchez' Fulltank vid I realized one of the issues I've always struggled with is saying no.

 

I realized this further when I watched one Queer Eye episode where they made over the life of an 18-year old. The story brought me back to those days I was young and already crazy busy. That was the time my Mom would always tell me to rest. I was always doing so many things and accepting projects left and right. I'm still the same to this day. 

That has been my nature and it's been open to abuse. I know my limits, but it doesn't take much to pester me to say yes. I end up feeling guilty when I say no. I haven't slept well because I have been avoiding getting roped me to something that would surely stress me out. I've had to tell myself again and again that I am still recovering and stress will not be good for me. 

I have survived two pulmonary embolisms in the last 28 months. I survived TWICE. And one of the things that I must really, really learn is to say no. Just say no and don't feel guilty about it. I've known this since my first PE and it's why I took a break before, but I slid back last year and the stress affected my health severely. 

And that's one of my prayers, for me to learn how to say no and not to feel guilty about it so I can take of myself better. I hope I can take away this feeling of guilt so I can rest soundly at night. I need to be able to sleep well so my body can heal better. Please pray for me as I journey through this healing process. 

CB///301 #StuckAtHomeDay/331 #StayHome #BeKind