Category: Undifferentiated Connective Tissue Disease

Know and understand this disease and latest information on possible cures

Forever Young In My Dreams

On By Ramon B.In Mariel's Life, On Grieving, Samantha, Undifferentiated Connective Tissue Disease2 Comments

Dear Mommy,

I had originally called this new post as “The saddest day of my sad, sad life” but your daughter Sam found it too depressing and wont have it. But indeed it was, because I could not imagine being told that morning of Sept 20 that you had passed away. When I had just kissed your feet the night before and I was asked to leave the ICU so you can get some rest. Add to that too, the most painful task of telling your daughter about your passing when she did not even have an idea that you were at all sick. (Just the thought makes me again shiver. I can still hear her anguish)

I kissed you only at your feet that night because I was afraid to give you germs. I’ve always thought germs and you, even just in the same sentence, were completely incompatible. You were after all, always angelic, pristine white and porcelain-like. Remember how I thought you were somewhat “Imeldific” the first time I saw you at Gourmet Cafe? You were glowing in the mid- afternoon blush while I was fidgeting on my chair staring at the Cappuccino. You were so beautiful then and I felt like I had just won the lottery, but I was trying to act cool and nonchalant about it. Remember also that I had told you, before I actually met you, that I sort of looked like Keanu Reeves? (To everyone, that’s a joke that I’ll reserve for another day).

It’s been three year now. But it feels like three weeks or three days or even three minutes to me. Time has not behaved the same way since. I used to find the work week too long because I’d always looked forward to our weekend trips to the mall. You know, discovering that new exotic restaurant or simply browsing at the “tiangge’ with you made me very happy. I liked shopping with you because you always gave in to my “retail therapy”. I was a spoiled little boy, or did you just love me too much? That’s why I miss you so much now. My days look like endless clones and weekends are not much fun anymore. Except maybe when Sam agrees to go out with me on Saturdays. I dread too, the day when she wouldn’t want to hang out with me anymore or have more time for friends. Where will I go then?

But as I’ve told you a lot, I’ll just do my best to keep busy looking after our daughter. I know she needs more space these days, but also I have to assure her that I’d be there for her anytime she needed me. Well mostly today, it’s still about reviewing for her math quiz. I don’t know someday if it’ ll come to talking about “boys”. Then, I wish you were there to hold her hand when that time comes. I’ll just try to wing it at best for now. Perhaps you can help me with some tips?

I miss you Mommy. There are days I imagine how it’ll be when we meet again. I do look forward to that time, but you keep reminding me of  being here for Sam. I’m quite torn, but I know doing it will make you happy, so I submit. I’ve always imagined too that we will eventually grow old together. And hold hands while taking long trips to the beach, when Sam gets to have a family of her own. But alas it will just be another movie script, waiting for a re-run. I will grow old my love all right. But you, my love, will remain forever young, in my dreams. I hope you will not mind though some silver streaks on my hair, when again we meet. I promise to continue where we left off, when we last talked. I love you so much Mommy, there will always be a void in my heart that can be filled only when we are together again.

Watch over your daughter. Pray for me and never forget how much we love you.

Forever yours,

Bong

Letter to Mariel, May 31, 2009

On By Ramon B.In Mariel's Life, On Grieving, Undifferentiated Connective Tissue Disease3 Comments

Sam at Lexington Clubhouse

Dear Mommy,

I went to the mall again today, trying to get some of the old ‘excitement ‘ back. But then even in the midst of a great sea of shopaholics, I still find myself so alone. I’m missing those times we would be there trying to hunt for ‘ great bargains’. Yes, you would have loved the Power Plant today, there’s the usual cakes and pastries exhibition and your beloved Marks and Spencer Sale (of course, I’m usually the one happily at the receiving end of this). I even watched a movie- Angels and Demons– alone. It was quite engaging till the end credits when I again realized that I  have much more time on my hands to fritter away this day. I’m really sorry too, especially to my dear friend Jan and ever-caring niece Mariel if I have to sound again to be a bit on the gloomier side. You see, I just can’t help it because I still think a whole lot about you all the time. (But you already know this too well)

It’s been about one year, eight months and ten days since you were called back to the Lord’s garden. And I just feel so lonely today. It’s the way things are, after the kind offers of sympathy, comforting calls and messages had to give way to life’s  more “pressing realities” for many of our dearest loved ones and friends. I know that it’s not that they don’t care anymore. It’s just that like most people, they just have to move on. (Oh, the moving on thing again). Well in my case. I’m pretty sure that I cannot ever if it will mean living my life without you. And I want you to know that you will always be part of  my life, my “reality”.

Because you will always be part of every little birthday party we celebrate for our Sammy. Will always be there when she gets that recognition from school. Will be there too watching all her musical performances. Will be there with me when I buy those new shoes or clothes for her. There  for her own lovely wedding some day.  And surely there every single day when we wake up or go to bed at night, it will always be– “We love you Mommy”. You will ALWAYS be with us.

I love you Mariel. Don’t worry about Sam because she will grow up to be like the wonderful and loving person that  you were/ are (I’ll make sure of that). And I know she misses you too very much. Good night 🙂

With all my love,

Bong

Through the Looking Glass

On By Ramon B.In Mariel's Life, Undifferentiated Connective Tissue Disease8 Comments

This week brought me back to where my journey had began. I tried so hard to avoid going to UST hospital this past year but I just couldn’t get out of this one simply because Sam needed to be admitted to the same hospital after having taken some “bad food” at a party and her pediatrician happens to come from the very place too. And much more, the only available room was on the same floor where Mariel and I had stayed a year ago. It was like diving to the trenches anew. Tough luck or providence? You be the judge.

For a time I was of course more preoccupied with Sam who was going through the lab tests and was running a high fever. But still the images and emotions of the recent past had kept hounding me, taunting me to confront my fears and regrets. It wasn’t long before I had finally found the guts to again walk the long, lonely corridor. To relive the days when time had stood still. To return to the valley of tears.

I must admit however that it was not as bad as I had imagined. In fact, I felt a certain kind of peace with my sadness, as I stood outside the door where Mariel and I had shared seven fateful days not so long ago, believing love will be enough to get us through. At that point, some nurses at the station recognized me and remembered Mariel. (I guess very few people really forget her once they somehow get to know her.) They said they remembered most the whiteness and porcelain-like texture of her skin. I’m not surprised though, because I had always known that Mariel had radiated such simplicity and childlike purity. That’s what most people usually grasp, that was the very feeling I had when I met her for the first time at the Gourmet Cafe. She was glowing and almost translucent. It was like old times again for some fleeting moments. And I neither felt afraid nor burdened because I was sure, Mariel was there holding my hand.

Good night Mommy. ‘ Love you.

Yes Virginia, it’s not Virus

On By Ramon B.In Mariel's Life, Undifferentiated Connective Tissue Disease2 Comments

I just want to set the record straight. Mariel’s illness was not caused by any virus or something like it . It’s not something she caught in our recent trip abroad or acquired thru something she did or did not do. It’s not SARS, Bird Flu, not even TB. Mariel was healthier than just about most of us until something probably triggered the chain of events in her system.

I’ve been told that Connective Tissue Disease is simply her OWN antibodies deciding to stage a mutiny. The very same antibodies which are present in ALL of us, suddenly deciding to attack the very same person it was meant to protect. In this case, the love of my life, Mariel.

It’s a cruel disease because it gave no real warning. Unfortunately, its also something Medical Science has not really found a true “cure” for at the moment. At best, Medicine can just try to mitigate or slow down its harmful symptoms. I beg doctors who may be reading this to please jump in and enlighten us all on this dark, treacherous disease.

Is there a doctor in the house? (part 2)

On By Ramon B.In On Grieving, Undifferentiated Connective Tissue DiseaseLeave a comment

I loved Mariel so much. More rantings about Undifferentiated Connective Tissue wont bring her back. But, as much as it hurts retelling her illness, I must try to find out. So that others wont have to suffer. So others will stand a chance. Mariel would have google- searched till she gets an answer. She is thorough. Saving others will surely make her happy.

Is low hemoglobin count a relevant marker or precursor for her sickness? She had this come out of her blood chem results consistently the last few months before she went to the hospital. But as usual she was asked to take Iberet or Iron supplements and come back after 4 weeks. Just asking?

Is there a doctor in the house?

On By Ramon B.In On Grieving, Undifferentiated Connective Tissue Disease4 Comments

I lost my Mariel to Interstitial Lung Disease caused by Undifferentiated Connective Tissue Disease. Barely six weeks after we checked with a dermatologist to complain about some ordinary rashes and fever. ( We were even discharged earlier at another hospital for what they thought was merely a viral infection, after ruling out Dengue ).

C3 ANA test, Lupus panel, Malaria check, TB check, Typhoid check, X-rays, Punch biopsy, Hi-res CT scan all proved negative initially. Until one day, someone mentioned interstitial blah blah. Medrol, Plaquinil, Azythromycin, Pulse therapy, Rituximab, Deep Vein 2-D echo, ICU,Ventilator later didn’t seem to help. I know the doctors did the best they could, but is there really something more I could have done for Mariel? I was with Mariel 24/7 in the last 10 days at the hospital. I suffered too with every dip of the Oximeter, that painful alarm, the Spirometer torture machine and Mariel’s every brave attempt to fight off the disease. She kept strong faith in God through it all until He took her on Sept. 20, 2007. The only reason perhaps I could not bring myself to “hate” God for what happened to her was the fact that she suffered more than my whining self and never wavered. Thus, Mariel is my angel for saving my soul.

Undifferentiated Connective Tissue disease is a cruel, strange, kilometric, treacherous, despicable, double- barreled snob of a disease. I will fight it now for Mariel through my own dying breath.