Update

It's been a long time since my last blog post and a lot has happened. Please visit me on minds.com at https://www.minds.com/mamameisa as I continue my journey. Thanks :)

Finally!

After an entire year of searching, I believe we have found d the cause of this debilitating illness. I had another set of tests done, as the rheumatologist was not satisfied with the previous set. The lupus tests both came back negative, as did sarcoidosis, but one thing showed up as "reactive". This means that I once had this illness and it has left it's calling card. Actually it's still in me. So, who is this mysterious culprit? Dramatic pause... EPSTEIN BARR VIRUS!

Yes,  about 90%-95% of people in the developed world have had the virus at some point in their lives. It usually shows up as a very bad cold in children or possibly mono in teens. The virus remains dormant in the body henceforth...unless you are very special. I mean, unless you are blessed with a weak immune system. The virus somehow triggers the presentation of chronic fatigue syndrome and/or fibromyalgia symptoms. There is no treatment or cure, other than pain control (Liquid Advil and Cymbalta are my friends), and learning to live with it.

There is definitely a grieving process to go through. I feel like I've done that already. Disappointment and sadness will crop up occasionally, but clinging to God helps me through it. Having more friends and family who are supportive and understanding, than those who are not is a great gift that I treasure.

I am Orthodox. I am chronically ill. It is for my salvation. Glory to God in all things.
I am glad to have an answer, and I am happy to move forward in my new life.

Down in the dumps

I'm having a craptastic time! I'm not dealing very well with my inability to be who I want to be. It sucks. I saw a rheumatologist today. He thinks I may have chronic fatigue syndrome, but is sending me for more tests to rule things out first. It seems that I've tested negative on the lupus screening test, but positive on the lupus confirmation test. This is rare in lupus patients, hence all of the other tests he has requested. The goal is to eliminate sarcoidosis, lupus, Epstein Barr, etc before making a final diagnosis. So now I wait for my results, and another 3 months before I see him again. By that time it will be a year since I got very ill. It's hard to be thankful when your life belongs to your disease. I'm thankful for my husband and children. I fail them everyday, yet they carry on.

The end is near?

A very busy weekend has left me stiff and unable to do much. It was worth it though. We welcomed our new nephew, took in the art festival at Toronto City Hall, attended Maker Festival at The Toronto Reference Library, and celebrated a birthday between Thursday and Monday!

I woke up at 1pm, had breakfast, and  pruned 3 plants. I am now back in bed, dizzy and tired. Nothing else will be done today.

Tomorrow, however, is an exciting day! I get a CPAP machine! My sleep study results showed that I snore very loudly at 56 decibels. That's almost the equivalent of standing 100 feet away from an AC unit that sputters to life every few minutes all night long. I also learned that I stopped breathing 120 times in 6 hours...yes, that's 20 times per hour! My oxygen levels are low at 80%, hence, morning headaches, lack of concentration and focus etc.

Yep, tomorrow may be the end of most of my issues.

Why do you go to church on Saturday AND Sunday?

https://youtu.be/AJ5EuY6Inb4

Specialist Shenanigans

Khrystos Voskres!
I was out grocery shopping with the help of my sister this week, when my phone rang. I answered and was informed that my doctor's office was able to get me an appointment to see a specialist. A specialist? What specialist? You mean an allergist for my daughter? We've been waiting for months to hear back form them. No, not the allergist, a RHEUMATOLOGIST! What? Really? I assumed that door was closed since the last referral my doctor sent out was "refused". I was going to ask my doctor if he could try another rheumatologist, but I guess he was way ahead of me. Thank God he did not give up. I'm glad the first specialist refused me as a patient. I read reviews of him online and most of them aren't positive. I'm glad that I'll finally be able to see someone. My appointment isn't until August. Maybe I can get on a cancellation list, if they have one.

Cymbalta 2

It's been well over a month since I started taking cymbalta. It made me very drowsy for the first two to three weeks. It did, however, take away my constant pain. I only experience break through pain now. It's worse when I don't follow my diet.
I've been craving potatoes lately. I only have cravings when my body is deficient in one thing or another. I have not been taking my magnesium or B12 supplements and as it turns out, potatoes are a very good source of both. This explains why I was relaxed and able to rest properly after chowing down on some (two large) fries. I had already tried to have dinner with nothing but an increased upset stomach and the inability to rest to show for it. So, I'll resume taking magnesium citrate and B12 methylcobalamin.