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.

Cymbalta day 1

I took my first dose of cymbalta last night. Within an hour of swallowing that little blue and white capsule I felt strange. A wave of sleepiness slowly swept over me. I was soon dozing off to la-la land. I woke a few times overnight, conscious of being slightly nauseated, but promptly fell back asleep.

It's 642am. I am awake, tired but awake. I woke up an hour ago.  I'm not groggy. I have no pain or stiffness...yet. Slightly queezy. I'm usually not awake until 930am, and then it takes at least two hours to get out of bed. Thank God for my parents and sister! They take care of things until I'm up and moving. I'm going back to sleep.

At 917am I am awoken by a phone call. I don't like being woken up. I'm still drowsy. I lay in bed trying to fall asleep but to no avail. I finally drag myself from bed around 11am. I'm not achy or stiff, just tired. I think I'll take my next dose an hour earlier to see if I can sleep of the drowsiness. I'm weaning off of one pill and weaning onto cymbalta on an evey other day regimen. My next cymbalta dose will be Wednesday evening.

It's noon and I find my self putting some recycling out. This is something that I couldn't even think about yesterday, let alone do. Now that I am taking stock of my accomplishments, I realize that I have corrected the children's work without getting dizzy or nauseous. I made myself a smoothie, something I haven't done in a few weeks. I have been downstairs for over an hour. That's an achievement! I will still need an afternoon nap, but so far so good.

Possible diagnosis

My family doctor called me in last Friday. He had my blood test results. I had already seen them online so I had an inkling as to why he wanted to see me. My A1C is 6.4, down from 7. That's excellent! I'd like to get it down to below 6. That would make me "diabetes free". In my case this may mean no mess but I will still have to follow a specific diet to ensure my numbers don't go up again.

My liver reading is still high. According to my MD more weight loss is the way to combat this. So, onwards and upwards on this health care hike!

He had some shocking news from the rheumatologist. The rheumatologist has refused to take me on as a patient as he doesn't think I have a condition that relates to his field of expertise. Ok. So, no lupus? My MD is treating this as fibromyalgia. I was scared of this. There's not much that can be done. Fibromyalgia is tricky to diagnose and difficult to treat. I'll be starting cymbalta soon. We'll see how this goes.

Grief

Grief, it's such a hard thing. I'm mourning the loss of ability. I want to grocery shop, drive, or even crochet without exhaustion. I've had to rely more on my family lately. I don't like burdening them.
Glory to God in all things though, and as one friend said to me, "Keep your mind in hell and despair not." St. Silouan the Athonite. It's like saying, "Keep your head up", even though it seems as though you're drowning.  You may be in hell right now but do not lose sight of your salvation and the One who cares for you. We live in a broken universe. This means bad things can happen to nice people and vice versa. Illness is an unfortunate consequence of the brokenness of this world. I dont ask God why I'm sick. It's never crossed my mind. I'm more concerned with the 'what' (what this illness means for me and my family) than the 'why'. I am grateful for that. Glory to God in all things! Good, bad, or ugly.

Rough day

Today has been the worst since this flare up started. I'm feverish and hurting. Emotionally, I'm lost. I don't know what to do in my situation. At times like this I need help all day everyday. Being in limbo sucks. I don't know if I can get government help with that. We can't afford home care unless we move. I don't want to move, but wants and needs are two different things.

Busy bee

We took our "March break" early this year. We spent four days at Great Wolf Lodge. It was great! The kids had a blast, and I rested as much as I needed. I did have a little cotton candy. I have a new favorite flavour, green apple. I am going through a flare up right now, and I know what caused it. I had bread pudding for dessert on our last night there. The next day I ate fudge from Souvenir City on the Niagara Parkway (the best fudge), followed by pizza at my brother and sister-in-law's. So, gluten, sugar, and dairy...3 things I know I must avoid but have a difficult time saying "no" to. Thank God that lent is almost here. Lent helps me stay focused.
Once I'm feeling better I'll be able to get some blood work done and post those results here. I'm most interested in my A1C and cholesterol levels. I have high hopes that they have both decreased.

So far so good!

Things are going well. I see my naturopath for an assessment this week. We will then determine what our next step is. I'm happy with my progress so far, and I'm grateful for it. You don't know what you have really, until it is threatened to be taken away from you or is completely taken away. To date, I've been able to join the church choir on a biweekly basis and I've also joined our parish sisterhood. These two groups allow me to give back to my community in a way that I can manage. I'm learning to sing tenor for choir and I didn't even know that I could sing that high. They need tenors but we don't have any so the women step in and do the best we can for that part. I find it challenging and rewarding at the same time. It's allowed me to grow vocally and it gives me joy to sing in that setting once again. For the last few days I haven't been resting as often as I should. I woke up stiff and sore today. I went to church, sang in the choir, and attended the sisterhood meeting. I'm now in bed as a result of not resting as often as I should. My back is hurting all over and my eyes are starting to hurt  and get hot. I may end up taking 400 milligrams of Advil just to make sure the pain doesn't get too bad. Other than that, so far so good!

Hormone test results

Glory to God! I got my hormone test results back about a week and a half ago, and there were some surprises. I have no progesterone. None, not a drop! My cortisol levels are too low. I've got the highest melatonin levels in the morning, and the lowest in the evening. This is why it is so difficult for me to wake up in the morning and get out of bed. It should be the other way around, low levels in the morning and high levels at night, so I can actually sleep at night. Oh and my adrenals are pretty much shot. So now I'm taking a progesterone cream, an adrenaline support supplement, and sublingual melatonin at night. I've been told that the progesterone cream may take at least 3 months to work. I shouldn't expect an overnight change. The melatonin is working, I also have valerian tea at night to help me fall asleep faster. I'm staying asleep longer and I'm able to get back to sleep if I wake up in the middle of night. As for the support supplement that I'm taking for my adrenals, I haven't noticed a huge change yet. At first my craving for salt late at night which is the key symptom of having fatigue adrenals went away, but it's come back. This could be a result of my sister having her baptism and engagement party on the same weekend and me coming down with a cold. These three things combined really took a lot out of me this past week. And I'm only just starting to feel a little bit more energy throughout the day. I'm still going ahead with my vitamin IV therapy. It really works. It's helped me so much. It boost my energy like nothing else I've tried. I've been able to reduce the vitamin C amounts that I have to take everyday and the probiotics. Eventually I'll be able to come off of the probiotics which is good. Because it would be nice to just allow my body to cultivate all of the good bacteria in my gut and then they can have a big ole party and create even more little bacteria babies to help keep my digestive system in good working order.

Foods

So...I stuck to my new anti inflammatory diet for 4 weeks. I did cheat a few times. It wasn't anything drastic, a tiny piece of cake here or a bite of baklava there. The fifth week I fell off of the wagon and sat in the middle of the road for a couple of days eating foods made with flour, sugar, and a bit of dairy.
It was Nativity! I wanted those perogies! I'd been sooo good, I could treat myself...right? No. No you may not treat yourself, my body said. After two days my symptoms came back. Hot eyeballs, fever, pain all over. Oh, and my skin freaked out too. I had the large cystic acne spots on my chin. They were huge and painful. I've been treating them with a benzoyl peroxide cream and it's helped a lot. The swelling and pain are gone, but two weeks later I still have the remnants of these cysts on my chin.
I am back on track but my right hand still hurts. I've learned my lesson. My naturopath has taken me off of all gluten containing foods. I remember that I always got heartburn after eating oatmeal and I would have a mild bout of asthma after eating bread or pasta. I didn't know at the time, that this was a sign of inflammation. Little signs build up over time until they form a massive wall, which you then run right into. It knocks you down, and as you sit there gazing up at this monstrosity you can see all of the little signs it's made out of. I'm at the point in my journey where I am pulling the wall apart, one sign at a time. Glory to God one day I will be able to get through my wall.

Vitamin IV treatments

One of the first things I did when I started seeing my naturopath, aside from a new diet, was vitamin IV therapy. A small butterfly style needle is placed into my vein and a solution of antioxidants, vitamin B12, and magnesium are flooded intro my blood stream.

My first treatment had me drowsy. I actually nodded off in the chair as I waited for the drip to do its thing. I returned home and slept most of the day. The next morning I felt as if nothing was wrong with me at all. I could conquer the world! That sense of euphoric well being lasted only a few hours, after which I completely crashed and burned.

My second treatment did not make me drowsy. I felt great for about a day and a half, and I didn't crash as hard. I only had one really bad day that week. Fever and pain but it was one day out of seven. I count that as a win!

The last treatment I had was my third. It was this past Tuesday.    I've been feeling great for the past 4 days! I've rested when I need to and I have not over worked myself. I felt the effects of the vitamin treatment slowly wearing off today. I had a nap this afternoon, and my dizziness has returned. Nevertheless, this treatment is working. It has returned some of the ability I had lost. Onwards and upwards!

I thought you were better.

"Why are you using the cane?"
"Because I need it."
"But I thought you were all better."
"What mommy has is not going to go away. Some days are good and some days are bad."
This is a quick conversation that I had with my 8 year old while getting ready to venture out to the grocery store with my husband and our two youngest children, after taking one 400 milligram advil to take the edge of the pain off. This is something I will have to explain not only to my children on an ongoing basis, but to grown adults as well. Some people seem to think that you can get better but there is no getting better. This is a new way of life. My plans have to be flexible, and so do theirs. I may lose touch with some people through this illness but it can't be helped. I can't go out when I want or when someone else wants me to. I need to listen to my body. I need to take care of myself, even when I feel well, because right around the corner a crash looms.

Naturopath

I've started seeing a naturopath. It's been almost 2 weeks. Why? Because i t will take 4 to 6 months to get an appointment with the rheumatologist. I can't just lay here and wait! I have a life, however limited, to live!
My naturopath is very clinical. She's not hippy dippy at all. She doesn't push products, or try to get me off of the pharmaceuticals I'm currently on.
My family physician has warned me to be cautious, but he is willing to pass on my lab tests to her so they are both on the same page.
I have seen an improvement in my energy levels. It feels as though I am approaching my old level of coping. The goal is to get beyond coping and try to function as close to a normal level as possible. I don't think things are ever going to be the same again. I do have an inflammatory disease. It won't go away but I would like to have the ability to be out of bed for more than an hour without getting so tired I feel as though I'm gonna throw up.

Say what? Part deux

My hearing test is done. I can hear in the normal range. My left ear is better at picking up certain sounds compared to my right, and vice versa. Everything is fine. Oh, and yes, I switched my boots to the correct feet :D
Now I'm off to bed for the afternoon.

Say what?

I am sitting at the audiologists office, waiting for a hearing test. I thought I had wax built up in my left ear. Not so said my doc. Everything looked good to him, so he sent me here.
I just noticed that I put my boots on the wrong feet. Oy!