I know my posts are getting to be far in between lately although there were a lot of significant events (like our new puppy, Jordan) to write about. Due to some recent setbacks, I decided to take another respite from blogging just so I can sort things out in my head. It might not be of utmost interest to everyone but I came to a conclusion that it’s best to write about it. If by some measure, people learn a little bit more about something, then it’s worth the effort. I’ve often said that each of us are just a tiny speck in the grand scheme of things but now that I have come to appreciate my bit role in the Internet global community, I aspire to make a positive dent in someone’s life if possible and whenever given the opportunity.
When I first wrote about my problem with Carpal Tunnel Syndrome , joint pains and my subsequent attempt to detoxify, I left out a lot more issues that were somewhat of clandestine nature. As candid as I try to be, some things are still better kept private. But after today’s events, I felt like I owe it to my friends and faithful readers to disclose and get it over with.
After working the night shift, I dashed out of the hospital to meet up with Kenny for my doctor’s appointment (Rheumatology) at another building. It was a freezing, wintry and windy day and I struggled to keep warm. My fingers and toes were icy cold, deathly pale and unbearably numb despite my gloves and Ugg boots. These days, it doesn’t take much to make them look and feel that way. Even just washing my hands with a cooler temperature water will do the same trick. If you ever have the occasion to see a dead person’s hands and feet, that’s the closest I can describe my predicament (Raynaud’s Phenomenon).
On the surface, I managed to keep a facade of composure. Inwardly, I was bombarded with a jumble of emotions threatening to overwhelm what little vestige of restraint I have left. It has been a drawn-out process but I finally have the chance to obtain answers, whatever they might be. After all these months of numerous hospital visits and tests, the speculations and uncertainties will hopefully come to a resolution.
It was probably one of the longest and most thorough consultation I’ve ever had with a physician and in the end, the verdict was handed out. I have Systemic Lupus Erythematosus (SLE or lupus).
Brief background: Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body’s immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens. In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies — called "auto-antibodies" (auto means ’self’) — cause inflammation, pain and damage in various parts of the body.
My worst fear was confirmed and I have to finally deal with the fact that things are going to be different from now on. I know this was coming but I was in a state of denial for the past few weeks, hoping for a better outcome. I am not going to lie and put up a brave front. I am scared as hell. I am mad, despondent, panic-stricken and feeling like I had been hit by a runaway train. I desperately wanted to move away from its path but my whole body was bolted down, succumbing to the inevitable ruin.
Why me? I’m sure a lot of you got some words of wisdom, reassurance and sympathy. In time, I’ll come to appreciate them and thank those who really care. At the moment, all I want to do is just to run off and lick my wound. What better place to do it but warm and sunny Maui? Yes, I’m headed off to Hawaii on Friday with some friends and I’ll try to enjoy every bit of this short escape although I might spend more time hiding away from the sun (photosensitivity). Before long, the real world will loom bigger and I’ll have to continue living in it for as long I can.
Right now, I have some packing to do and that is something I have control of. I will try to keep blogging during the trip. I just got a brand new camera and I’m not afraid to use it. So, catch ya later, folks! Take care of you and each other.
For more info on SLE or Lupus, here are some links:
http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus
http://www.lupus.org/newsite/index.html
http://www.medicinenet.com/systemic_lupus/article.htm
http://www.emedicinehealth.com/lupus_systemic_lupus_erythematosus/article_em.htm
http://www.visualdxhealth.com/adult/systemicLupusErythematosus.htm
Hi Rose,
Don’t know how to approach this comment posting but I do want to say that after reading your post, I paused for a silent prayer for you. Enjoy your trip to Maui. Enjoy everything there - from the tiny grain of sand to the long leaf blades of the coconut palms. If this is any consolation to you, I know someone, an aunt’s friend who has lupus also. She has it for many, many years now and I should say that she is living life the way it is meant to be lived - full of light. I know you’re a strong woman so I shouldn’t say stay strong. I wish you good spirits, happy life and don’t get lost in the many thoughts because of “it.” Take care pal and God bless.
My first reaction is…OH NO! NOT YOU!!!!! but…..it is not the end of it. Don’s cousin has it and she’s doing okey except when she has flare ups. I know you’re trying to have a healthy lifestyle and diet -that will really help. I know you are a strong woman and you have a lot of support. I will keep you in my prayers and let me know if i can do anything for you. Have fun in sunny Hawaii.
Rose, I really don’t know what to say. But don’t lose hope, you are in my prayers. Take care and be strong.
Enjoy Maui!!! And take care. You are in my prayers.
i know this may sound cliche and all, but- i’m praying for you, and hoping that God gives you the strength to face this latest trial in your life. my gurl friend in taiwan also has SLE; she’s been dealing with it for a few years now. if you want, i can get you in touch with her … if you feel like you wanna talk to someone who is fighting the same battle. or not. at any rate, my thoughts and prayers are with you. i hope you have a great time in hawaii! take care and try not to step on those sea urchins …
Hi Rosemarie,
Just wanted you to know, you’re in my thoughts and prayers. Enjoy Hawaii. Was just there last May and had a grand time, albeit, a short one. I’ve decided I’m gonna try to catch up on my blog reading (to be completely honest, I have not checked out anyone’s blog in a long time), and hopefully get my drive back to blog again myself. I don’t know what kind of memory illness has struck me but I can’t seem to get my thoughts in one place, anymore. Keep blogging! God is with you.
Hi Ate, enjoy yourself in Hawaii. I am looking forward to hearing from you soon. Take care, i love you. God bless…
Rose, I don’t know really what to say… As much as you know me I am just not that person who happens to be good at putting my thoughts and feelings into words. Nevertheless, I do trully and dearly think of you and will surely include you in my prayers. Romans 8:31 says: “If God be for us, who can be against us.” God is with you. God is for you. God is greater than lupus. Yes, you are a warrior - a very good warrior! And with God’s help victory will be yours. My tight sisterly, hugs, love and prayers for you… aleeh.
Hi Rose,like your other friends - I don’t know what to say really. I cannot find the words to comfort you. Like Rowena, I have a friend in the Philippines, in fact a really good friend who also has lupus and she’s alright. She complains from time to time about joint pains but she’s healthy and vibrant. I know it’s not easy and we are not in your shoes…but I will be praying for you. You have brought joy in people’s lives by writing and creating a blogsite and also in meeting you on line, it brought me friends and it brought me you as a friend. You enrich the lives of many by your writing. So Rose, take care. We are praying for you. - Len and James
Rose, I wish I could give you a big and long hug right now. It takes a lot of courage to come out in the open and post about it. One of my many thoughts was that “not you Rose!” “that lupus are only for old people” “if it could happen to you, it could happen to me, to any of us” “that it is good that you are in the US with the advanced treatments that is available and that it is still possible for you to live a normal life”. We hope so. Give my hugs to Ken too. Hope to see you when you get back from your Maui trip.
helu plz join me to your blog
God said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Cor 12.9-10)
I can think of nothing to say to comfort you in this time of trial. But you are in our prayers dear Rosemarie. It was Tony who first read this entry before I did, and when he picked me up from work, he was just mum about it and waited for me to visit your page. We are including you in our daily prayers, for healing and strength, and faith. Forza Rosemarie.
I did find these verses for yo u to meditate on..
I was totaly shock. I really dont know what to say cuz im not use in this things but i want you to know that everything has a purpose.Enjoy on your trip and have faith in God.
hi rose, just like the rest of your friends, i am in total shock but i am praying for you and hoping that God will make you a much stronger person to be able to face this trial in your life. when things go wrong in our lives, we question God….i know the feeling cause i have questioned Him many many times. but God is kind and He loves His children. He’s not gonna leave you and He will be with you every step of the way. meantime, enjoy your trip and my best to you and your hubby. take care..
Just what most of your friends do, you have my prayers too. You’re such a very smart and strong woman my dear! Just hold on tight in Him! I have a good young friend having the same “SLE”, and I knew how much pain and suffering she went through but that was not the end for her. Now, she’s living happily with her 2 kids and getting continuous strength out of it! Go on! Enjoy every moment and keep on touching our lives! God bless you!
Hi Rose, I wish you well. I am glad to know that despite your present health condition, you continue to move on and get the most out of life. I am happy for you that you continue to have the right spirit. God bless, take care, and hope you have a wonderful Christmas.
I join your countless other friends (that you are blessed with) I paused and said a prayer. God is in control! Be strong…enjoy Maui!
very nice & simple.because simple is always best.
Hello Rose. Hang in there. Just be happy, avoid stress and God will take care of the rest. Take care…
i’ll keep you in my thougths…hang on!
ms rose,
i just stumbled over your blog from friendster’s recommended links, and i must say i was very surprised to read about you!
i’m praying for you, and i hope you feel better soon!
miss you!
odette