Still fighting...

March 1, 2019

February 19, 2018, ... Hard to believe it’s still only February when the temperature is 74*! Such a gorgeous day out! 🌤

I told myself I would get out and get some fresh air today, but haven’t yet. The day is still fairly young though. I may try to at least walk out on the deck later. The ground is kind of muddy and mushy so I won’t be walking around much. My daffodils are way up out of the ground and some have buds on them. Spring is a faithful promise to be fulfilled and it’s right around the corner. This morning it sounded like a hundred birds were singing outside. A beautiful sound!

I’ve had several caring friends and my brother, Terry, who lives in Pennsylvania, to ask when and if I was going to update this blog. That means SO much to me. Terry and his wife, Maureen, like to stay informed about how I’m doing by reading this blog, especially since they are so far away. I sure do appreciate my brothers and sisters for their love and support. And I also appreciate my praying, caring friends!

I am currently on the Ciproflaxin and Flagyl antibiotics, which are the ones I depend on to really help me the most. I had been doing fairly well with the S.I.B.O. Symptoms until this morning. I was quite sick until the meds I take for those issues kicked in and I napped a few minutes. Afterwards, I was able to eat a small lunch which has given me a little energy.

Rewinding back to Friday morning, I woke up with a VERY stiff and sore neck. I couldn’t turn my head in either direction without terrible pain. And along with that, I could barely swallow, which I thought was pretty weird. It wasn’t like a normal sore throat. It was like it hurt my neck muscles to swallow! I was sure in some serious pain and it persisted into the next day...and the next!. It may have been a tad bit better during the day, but I didn’t rest much at all through the night. Seems as if there was NO position I could lie in that didn’t hurt my neck. Today, I can turn my head better, but still not completely back to normal. I thought at first it was due to sleeping wrong or pulling a neck muscle somehow, but I did a little research and the Sjögrens Syndrome, which is another thing that often occurs with autoimmune diseases, has those symptoms also. Here is a brief summary of Sjögrens Syndrome:

”Requires a medical diagnosis; The main symptoms are dry mouth and dry eyes. People may experience:

Pain areas: in the joints or muscles Sensory: abnormality of taste, loss of taste, or pins and needles Mouth: dental cavities, dryness, or ulcers Speech: hoarseness or impaired voice Throat: difficulty swallowing or dryness Also common: dry cough, dry eyes, dry skin, fatigue, joint stiffness, stiffness, or swollen lymph nodes

I wasn’t sure just WHY I’ve had such weirdness with my mouth but reading that description of sensory symptoms... that is EXACTLY what I go through every day! There is hardly any food that I used to just love that I can or WANT to eat now. The main things that I miss being able to enjoy are peanut butter ... or any kind of sandwich, really I don’t tolerate sandwich bread very well. I can’t eat foods that are too spicy. It’s kind of painful for me to eat hard or crunchy things like chips. And as weird as it sounds, some days I can really enjoy a certain food and the next time I eat it... blehhh! 😖 Like with the White Castle burgers a couple weeks ago! I used to be able to eat at least 4 of them and LOVED them! I could only eat half of one and knew that I had to quit! You never REALLY appreciate the simple blessing of enjoying good food...food you used to love and look forward to eating...unless you can no longer do so.

Anyway, I’m thinking my stiff and painful neck is due to that stupid Sjögrens Symdrome. 😡As if I didn’t have enough going on! But I’m praying it will ease up completely real soon so I can sleep through the night.

I’m not working much at all anymore, which is certainly not something I’m happy about. I had always prayed to be able to work at least a few hours a week, and still DO. But the sickness is just too unpredictable for me to be dependable enough to be put on the weekly schedule. They have been SO good to me at Century and they are still keeping me as an employee. I don’t want to quit completely. I love my job, even though it’s not a high-paying “career”. It’s what I love to do. And I do my job well. It also helps me to have some normalcy in my life and to feel like an active, useful person. That’s very important to most people. It’s good for self-esteem and quality of life.

Amidst all of the sad news and bad news... school shootings and political problems... murders on the streets...crime and just downright evil going on in the world, I sure wish I could be more of a cheerful person and one who brings light and laughter to the world. I’m not doing much of that lately. Sometimes I think that’s why certain people have dropped almost completely out of my life. They expect me to be all smiles and sunshine all of the time, full of fun and laughter. And I wish I could be that way sometimes too! But I’ve had to realize that everything changes when you’re diagnosed with a chronic illness. I’ve also had to realize that when the chips are down.., and STAY down for any length of time... your TRUE, dependable support system are the ones who are there no matter what. The ones who disappear never cared in the first place and I’m better off without them.

I would love for EVERYONE who cares about me at all just to do a little research on Systemic Scleraderma (SSc). It’s sure a complicated disease and one that hits hard. They say there’s no known cause or cure, but I’m always going to pray for God to completely heal me and I’m also praying the “Serenity Prayer”. I love this version of it..

Serenity Prayer Reinhold Niebuhr (1892-1971)

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
enjoying one moment at a time;
accepting hardships as the pathway to peace;
taking, as He did, this sinful world
as it is, not as I would have it;
trusting that He will make all things right
if I surrender to His Will;
that I may be reasonably happy in this life
and supremely happy with Him
forever in the next.

I will end this blog on that note.

I pray you all are happy and blessed today... and every day. Love ya!