Sept 20, 2021

I am literally out of words regarding my disease. Grabe kinuha niya buhay ko for a long time. When will I be able to do the things that I want and need to do. Nakaka frustrate. Today is my 5th and last loading dose for Scapho before shifting to monthly maintenance and I am still hopeful that I will feel relief with this. As usual grabe and fatigue kahit nakahiga kalang at humihinga, ramdam mo ang pagod as if may naka dagan sa dibdib mo. After this shot, kailangan ko mag pa laboratory and have appointments with my doctors. Bakit ganito. Please Lord help me. Minsan tutulo nalang talaga luha ko. Everyday I pray na mag work saken tong gamot na to. Please heal my body.

Popular posts from this blog

Excited yet afraid 😑

Image
Monday, Aug 21, 2023 Starting this journal to keep track of what is happening to me now. I am afraid that I will forget all the things happening to me each day. Natatakot ako na baka ung maliit na porsyento ng kaisyahan ko ay matabunan lahat ng frustrations dulot ng sakit na ito.  As usual, I woke up with a lot of pain. I asked Mark to help me get up as I can't sleep well last night. I kept thinking about my first Biologics injection - will it work? Or be just a waste? Well atleast, I will be trying it. I am very excited, yet very afraid. Will this give me relief? Will this stop my agony? I will never know until I try. Preparing meal is really a struggle. Hope Mark finds a way to learn how to cook. Umiyak ako twice today, but I dont want Mark to see it. I cried because the pain is overwhelming even though I know that my pain tolerance is high. Nilalamon ako ng buong buo. Honestly, I don't know who Roj is anymore. I see a different person whenever I look at the mirro...
Read more

The day after

Image
Aug 24, 2023 I felt a very slight relief the day after my Scapho shot, however, noticed that I have some rashes on chest and tummy area. Also, I woke up troubled since I had a terrible headache the night before and was worried that it might intensify as the day goes. I decided to file for a sick leave to rest more. Was trying to assess my pain levels and still, my hips are in terrible state.  Wasn't able to eat breakfast and tried my best to prepare for lunch, tita brought ginataang langka for ulam. It was going smooth until I felt that my right knee suddenly "locked" and became stuck for a few seconds. I really didnt know what happened next but in a snap my hips folded in front and found my face filled with ginataang langka. I just thought, if im not in front of the table, I might get into accident and hit my head on the floor. It was a shock. After eating my meal, I decided to use the stationary bike again. I was so scared that I might not be able to do it b...
Read more

Another day of misery

Aug 26, 2023 It was a terrible morning again. Parang ayaw ko na humiga sa gabi dahil alam kong mahihirapan akong bumangon.  Every morning, I would pray na magawa ko lahat ng dapat kong gawin for the day. Having Stiff and painful joints again. Nawala na ung expectations ko that Scapho would work sa isang shot lang. Ok then, sabi naman ng doctor it would take up to 3 ahots before you feel and see the benefits. At this point, napaisip ako, paano ko mahihintay ang hangang 3 shots sa ganitong kalagayan ko. Even going to the bathroom eats all my energy up. Having AS is really hard. Nakiusap ulit ako kay mark na tulungan ako bumangon. Naka upo lang ako sa kama nag iisip kung paano na ba. This life is so miserable. Hope I could just leave this body and choose a different one. Madame pa kong guston gawin, madame pakong gustong marating. Lahat ng un sinira ng sakit na to. Pero naisip ko din, maybe I should change my attitude about this. Just dont really dont know where and how to start. Trie...
Read more