Mother In Law’s Tongue. 4 x 6 watercolor on Arches 140 lb. cold pressed paper. © 2018 Sheila Delgado.
Big Blessings. Small Blessings. This year has started with many reasons for me to be grateful. I mentioned I had received some bad news. But it is good news too.
I have never really written here, about my Lupus experience. It’s long been on my list to do so. Just to share my story, for anyone who has been diagnosed as well. There is so little information out there. I thought maybe a page dedicated to that, if any one should look.
But even to write this post, I have delayed. It’s taken three days to begin. And I wonder why. Why it is so hard to write this down. Talking about myself surely. But also, I don’t want to be a downer, or sound like a whiny baby.
So just a few facts for now. I finally have been given a diagnosis. Not a complete one, as more tests are in the works. But at last I know the cause of my most obvious symptom. There are four things wrong with my lungs. But knowing that, we can now begin treating them properly!
I was diagnosed with Lupus is 2008. I was coughing for a year before that, and seeing different doctors trying to find an answer. But all this time later, I am still coughing. I cough when I wake up, on exertion of any kind. Talking makes me cough, I cough after eating. Cough, cough, cough. I am fine if I am sitting still, for the most part.
So Lupus, SLE, and all the symptoms that can present. And now Asthma, COPD, Bronchiectasis and Pulmonary Fibrosis.
But it is important to tell you. I feel fine. I feel as fine as before. My Lupus normal. And I have had these same symptoms since 2008. So things have not taken a turn for the worse. I just have a name now. Names.
I have never smoked. Well, one puff in seventh grade I think. I did work in a casino for three years. That was right at the beginning of the Lupus diagnosis. I do believe that I may have had Asthma for at least a decade before Lupus. But I was never diagnosed.
All this time I have said, that I am fortunate that the SLE has not affected any of my organs. But the truth is, I just did not know. This is all likely related to Lupus.
At the end of January, I was put on oxygen, 24/7. Sort of mind-blowing. Scary, and heartbreaking. Six weeks earlier I was told I was close to needing oxygen. But I thought, and prayed, that if I followed the doctor’s instructions it could be avoided.
But here I am on a leash, and learning all I can about nasal cannulas and oxygen generators, and tubing and living on oxygen.
E tank
M6 tank in case.
I have an oxygen generator for when I am home. I had a large E tank for going out, but that was too difficult for me. It took awhile, but I now have 4 M6 tanks for trips out. They each last two hours.
Whew! I knew that would get long. All of that just to say, thank you. During this time, I was surprised again and again. Some were giveaway wins. Some a thank you. Most were just well-timed shares. And all arrived at the perfect moment to lift my spirit.
So grateful to you all. More than I can say. I LOVE your work!
So BLESSED to have received your gifts!
Pleasant words are as an honeycomb,
sweet to the soul, and health to the bones.
Proverbs 16:24
Carol Edan, original art
Chandra Lynn
Christine Brooks
Trang Kang, original art
Christine Brooks, original watercolor
Sue Marrazzo, mixed media wearable pin giveaway.
Christine Brooks
Natasha M. Papousek
Dave Wolanski
Karin Naylor, original artwork, Giveaway.
Close-up
Do not be anxious about anything,
but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
Philippians 4:6
Thank you my friends!
Sheila, I didn’t know all the details of your medical situation, but I knew you suffered from lupus and I know that diagnosis can be complex and varied. I have had a pastor, good friends, and students who suffered with lupus. As you know, there are ups and downs, but in all situations it’s good to have a strong and positive network of family and friends around you. Your blogging/artsy friends are part of that network and we are here for you. Sending you hugs and envying those beautiful sunflowers you won! LOL.
Aww thanks so much Chandra! Really, really appreciate that 🙂 YOU are part of that, and I am so BLESSED!! Thanks for the hugs! Means the world to me 🙂
Karin’s flowers are great aren’t they! Hugs and blessings to you Chandra 🙂
Thank you for sharing your news with us…It is hard enough to deal with illness when we do know what is wrong and how to treat it..A scouting friend of mine had to be on O2 24-7, but thankfully he felt well enough to participate in many of our activities..My mom also had to be on high flow O2 24 hours a day..I pray that you will still feel like doing your usual things most days..Sending you strength..
Thank YOU Lisa for sharing with me. I appreciate that. I am learning more each day about what I can expect. I am actually kind of amazed. Like I said, I have had these same symptoms for ten years. And I have been fairly well the last few years, except for the cough, shortness of breath. So I am thankful for that. I am on 2, 24/7. So, low flo.
So great to hear from you, and I’m so grateful for your good thoughts 🙂
Dear Sheila – thank you for sharing your plight. As you said, bad news/good news – but seriously great news just to KNOW what the culprit is that keeps you from enjoying good health. A relief, really – and now you can focus on learning a new normal and managing the symptoms while exploring alternative measures and treatments, if desired. I think it’s the not knowing that makes things the hardest.
Your sunny, bright and optimistic attitude shines through in your beautiful paintings – the same ones I always say make me happy. Thank you for being such a shining light and an inspiration.
So grateful to you Judy, thank you 🙂 Very kind, and I am delighted to know I can brighten your day 🙂
I think you are right, better to know! And on to doing what I can do to get better 🙂 Or at least, not get worse. LOL 🙂
I am thinking of joining you in the 100 days thing. I have a few ideas for a theme 😉
One more reason to keep you in thoughts and prayers. Keep positive Dear Sheila and live each day to the fullest.
Thank you Nelvia, I do appreciate your prayers my friend 🙂 Trying my best 😉 Enjoy your week 🙂
Dear Sheila – I am so sorry to hear this news. It is a huge change to be on oxygen 24/7 – learning to navigate in your home and out and about and at night too. I admire your strength to share your current diagnosis and keep looking forward – not easy at all. Lupus is a disease that lies beneath the surface for the most part and only you and those close to you are aware of the toll it takes. I do want you to know that I am thinking of you and sending special thoughts and well wishes your way. And just for the record I do think it’s okay to have a ‘melt down’ (whatever that looks like for you) over this – have always found that or a good cry is almost like hitting the reset button for life’s stresses and takes the edge off at least for a little while. I think the painting you have shared today is perfect – it has grace and a quite strength to it that keeps drawing me back to look and look again. Take special care and sending much love your way oxo
That is perfect Janet 😉 A reset. That is how it felt. I actually did cry in the doctor’s office, when he first told me. I apologized, and told him that he was the first one who was able to tell me what was wrong.
Thanks so much for your good thoughts and well wishes. Does my heart good 😉 It is a huge change, and they really tell you very little when they drop off the tanks. Just how to use the “machinery” aspect of it. So I have been reading as much as I can. And I have found some terrific videos, and a site that has a lot of useful information.
So glad you like the painting. And I love what you see in it.
Thanks again dear friend, sincerely! Have fun this week, and keep warm!
Sheila, You have such a kind sharing heart. You are an inspiration, both for creativity and a generous heart. I am so sorry that you are going though all of this. I think God’s plan is to make you an encouragement to all people that suffer not only the illness, but also those who suffer a loss of spirit. I appreciate that you shared this with everyone. I know it will help others. Hopefully it will help you to know how many people appreciate you. Your kindness shines through! I will keep you in my prayers.
So grateful for your prayers Lana. Prayer has power! You kind and generous words, are very humbling. Thank you. And it does help, reading these sweet, and encouraging words from everyone. I truly do, consider you my friends. I am blessed!
You are so amazing! Now I understand more what you said in your card to me. Sheila, I will be praying for you and I understand how hard it is to talk about this, but I think you feel the love of all of us here, and we can share this burden with you and be there to comfort when you need it. You are such a blessing to me. I do pray that this is temporary, and God will direct your path and give you wisdom and healing. Lots of love and hugs and prayers for healing. <3
I've been listening to a lot of Dr. Berg's videos for some of my own problems. Here is one you might find interesting… https://www.youtube.com/watch?v=oNa9Q_7sQgs
Also have you heard of Dr. Brooke Goldner? She wrote a book called Goodbye Lupus… http://www.goodbyelupus.com/
I do feel it Karin! And I am so very grateful. Your words today. Each comment on this post, has warmed my heart and brought tears to my eyes. I am honored by your prayers, and humbled, and grateful.
Thanks for sharing the links with me Karin. I will watch them today. I have also started to view some on these by Dr. Connie Jeon. You might find them interesting. I just discovered her a few days ago. https://www.youtube.com/channel/UCcQ8ySs38wLcDpp4-VJrdhQ
Giving thanks for you, and your kindness, everyone who shared their thoughts with me here. Blessings all!
I heard once that God made the world round for a reason: so we couldn’t see what’s coming. I am grateful
for that in how my own life has evolved! Well it sounds like you have a big challenge here. Thank God you have the qualities that will get you through it: strength, endurance, optimism, capacity for great joy, and most importantly, faith. I know you will prevail. I just do. You are in my thoughts and prayers.
I love that Laurie! So grateful for your kind and generous words. Your good thoughts and prayers 🙂 I have been prepared, in the back of my mind, that complications could happen. I cried when I left the office, but I honestly think it was more of a release. All that tension, years of not knowing. I have always been an advocate of crying 😉 Ha ha ha ha. As Shrek would say, “Better out than in!” LOL 😉
Thank you Laurie my friend 🙂
Sheila, when your post arrived today, before I read any text, I see your painting. And there you are: standing tall, quietly assertive, centered, rooted, taking in and giving out in an exquisite exchange, present.
I am sad for the ‘bad’ news, glad for the big blessings, small blessings, blessed beginnings of targeted treatment.
Namaste.
Eloquent as always my friend. Your words are always enlightening and entertaining. Thank you dear Dotty 🙂 Namaste.
So many lovely things to lift your spirits just when it was needed. The ‘invisible’ illnesses are such a b….. Sorry to hear about the extremes you have to go to but at least now you have names for your problems – maybe someday they will have something to actually fix these instead of just helping you manage to do things. Good luck Sheila!
LOL, so right Val. One of the quotes that is commonly used with Lupus is one that patients here most, “You don’t looks sick.” I was walking next to a lady In Walmart, and she turned and said, “You have the same thing I do.” She was on oxygen too. I replied, and told her to take care. A nice little reminder that I am not alone 😉
Working at United Cerebral Palsy made me more aware of those that are dealing with health issues. I am constantly saying prayers, when I am out and about. There are so many who are impaired in some way. People who struggle to walk, who are in wheelchairs. So many things. So I pray, and send out good thoughts. 🙂
Thank you Val 🙂
Well, my first thought is my heart goes out to you. I am thousands of miles away, but my solidarity with you is there. You can write to me at any moment, anytime, and vent, scream, whatever, and I will answer you as soon as humanly possible. My second thought is always practical. Just my nature. It sounds like you are near competent medical care and you have a support system through them that you are receiving the care and treatment that you need. Is there a lupus support group in town? I think that would be of great benefit, finding people near you who are experiencing the same. I don’t know if you keep a notebook or diary of your health situation, but it might be important. Are there triggers that cause you to flare up? Do stressors start it up? I can only imagine how scary this situation is. Oxygen is life and your little body is having difficulty and needs to receive it in this way right now. Hopefully it will not for long. Be strong. Get stronger. Eat well. Meditation is really beneficial. It even makes you more aware of your oxygen intake!
And, most importantly, I have never met you in person. I never have to. Your beautiful spirit comes through in everything you do and say. You are truly an inspiration to me. At first it was as an artist. Over time it has been to me as a woman, a human being.
Sending you love and healing thoughts…
So grateful to you Laurelle, thank you. And I may take you up on that. I will remember 😉 The medical care in this area is awesome. This doctor diagnose me within three months. So yes, I am confident in that. The are some Lupus groups online, in fact I recently discovered one that has an active forum. I have been chatting there. The Lupus is under control for now. AMEN! Stress will cause flares, and exposure to sunlight will as well. There are other things as well, but not a problem right now. I do eat right and usually get enough sleep. Less so during the challenge, LOL 🙂 But fortunately I had an abundance of energy for the month 😉 Hadn’t thought about meditation. Good idea 🙂
Scary because I have to be aware of the fire explosion danger. LOL 🙂 I can’t be in the kitchen when the stove is on, gas. I have to worry about static too. LOL 😉
And yes, I am hopeful that it is temporary. My father was a cardiovascular perfusionist, so I am well aware of all that can be done for the heart. Researching now, what can be done for the lungs 😉
Your kind words and thoughts are deeply appreciated dear friend. 😉
One of my favorite plants! Have lots of photos if you are interested. Happy that you are feeling well, and sad that you are on a leash! Hope it will be temporary! Thoughts and prayers, I know a bit cliche. Grateful to have you as one of my internet artist friends, Surprised to see my card on your site, I also have that postcard from David Wolanski. Be well my friend!
I love it too Carol, so interesting. And easy to care for and propagate 😉 Love hearing that you have Dave’s card. Cool all the connections that can happen with the internet and the postal service 😉 Your card made my jaw drop, dear friend 🙂 Shalom 🙂
It’s always good to get something off your chest and I’m sure this has helped you in many hidden ways. The honeycomb quote is one I hadn’t come across before and fits perfectly with my current obsession to find hexagon patterned drapes. A good reminder and one I may write on the drapes with a paint pen when I find them.
I am sure you are right Sea. I did feel better when it was done. Before I was sort of stressed, and for no good reason really.
See, the Lord works in mysterious ways! Have you looked on Spoonflower. Well, for fabric from which drapes could be made. If you don’t find any, we could design some, And I could post them on Society six. They do drapes. Just a thought. You could do the art, and I could do the repeat for you 😉 (and post it just for your sale.) Have fun looking Sea, and thank you 🙂
So brave of you to share all this news. I am glad we have connected and I hope that each day you feel serene about your situation. You are in my heart. I love your work, too.
Thanks so much Christine 🙂 Looking at your cactus…. xoxoxo
I have just ordered a frame for your cactus painting. Let me know if I can do something for you.
Thank you Christine, I appreciate that 😉 Send me a photo when you get it framed 🙂 I might look today, for a frame for your birds 😉