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.

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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!