Fell asleep standing up ; (

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I woke up and realized I was standing and I started to freak out.

This was quite disconcerting because the last time this happened it meant something serious.

I had my thyroid removed in 2014 because it had two nodules growing in it, similar to the graphic above but with one on the right and one on the left. They were in effect crushing my windpipe and causing difficulty with breathing.

I did not realize how it was impacting my breathing until the thyroid was removed.

Anyway, after I had it removed I had to replace the hormone secreted by the thyroid with synthetic hormone. I have to do this everyday for the rest of my life.

Initially it took a while to figure out the right amount for my system.  Too much leads to hyperthyroidism and too little leads to hypothyroidism;both of which can be dangerous.

So back to that first time. I was exhausted,  dragging through the day and no matter how much I slept I was still tried. I was having difficulty focusing on things and remembering things. I stood by a door and leaned on the wall and the next thing I remember I was waking up. I had my thyroxine levels tested and found that the dosage of replacement hormone was too low for me. I was dangerously bordering on hypothyroidism.

So today, when I woke up from sleeping I was at first confused and then immediately scared. My thought was “oh Lord! not this now too”………..”am I not dealing with enough crap right now!”

Reality is, when I am down……..I have no tolerance to people or situations that increase my stress levels. Thyroid troubles have the potential to do just that. Just when I thought I had at least one issue under control………..here we go again.

Anyway, today I decided to engage in some self talk. “Lyn look at this rationally, you have been in loads of pain the last few days and heavily medicated, your body is tired that’s all it is. Right now you should be resting and you are not………that’s all”

The thing is though at this stage its difficult to distinguish because the symptoms are similar. I have brain fog, difficulty remembering and concentrating, extreme fatigue and I feel like I am dragging through the day. I have no energy……….it takes loads of effort and then some to move. This happens when the thyroid hormones are wacky and it also happens after I’ve been in pain for a while and medicated.

So what can I do?????????????? The best thing I guess would be to wait until I get over this pain hurdle and see if I still feel as I do now. If that is the case then I will need to have the levels checked.

Until then I can only continue to take the present dosage of thyroxine and pray its ok. Lord knows it has to be ok.

I am strong………….but I do break.

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Sick in bed…….sigh!

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Today was on the scale of bad days about an 8.

I went to bed last night around 10 and haven’t really gotten out as yet and its not that far away from 10 again.

I had a rough night, not much sleep. Lots of cramping and sharp intermittent pain. My abdomen is back to bruise status……..do not touch……..for any reason…..its tooooooooooo painful. The skin is literally sore. I have little to no appetite and whatever I do eat just upsets my stomach. Not great as far as starting the week goes:(

I messaged the doctor and he advised upping the dosage of pain meds. “Message me in two hours” he said. I took the meds and got back under the covers. In two hours the pain had shifted from 8 to 7 and I was able to sit up and spend a few minutes out of bed………Yayyyyyyyyyyyy! It was still bad.

I have the hospital on Tuesday and I really don’t want to be in an intravenous pain meds induced stupor before then. So, I got back into bed and here I have been all day. Praying that tonight will be better. If not come morning off to the office and drips I will be driven.

Some days are just hard!

 

Psychologist…no…..It’s just me

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He looked at my notes and said “oh you’re a psychologist, you should be good then, you won’t have any problems”. I responded to him “no it’s just Lyn today”.

This was the doctor speaking to me. I am not sure why he would think that my profession has anything to do with whether I have a pain issue or an illness. Maybe it was more about how I deal with it in his mind. I don’t know.

I have found in many other situations people have the perception that I am somehow psychologist all the time. Yes I am a psychologist and that colors the way I think and how I see situations. It influences my responses and how I approach people and issues but it does not define me.

My work does not make dealing with personal illness or issue any easier. It does not somehow reduce the pain I feel when something is awry in my family. It does not help me to cry less when I have a meltdown or keep a sunny disposition. The only thing I can see me doing differently than others is probably seeking help faster/ earlier. I am quick to therapy or to call a colleague and talk it out.

Otherwise I am just like everybody else.

Now if you were in my office with chronic illness or family issues or any challenges that may cause you seek a counsellor I could help you, sure! I could sit with you and work through it with you. In that space I am objective, I am the professional; just what you need me to be. When its me though all that objectivity goes right through the window. I am just Lyn.

You know what that’s ok. You see these moments when I can subjectively experience loss, pain , uncertainty and even all the issues I am now facing with PCS and everything else….it keeps me real. It gives me a level of empathy that otherwise I may not have or may take me longer to achieve. My life informs my work and my work informs my life but when I am not at work I am Lyn.

It would be great if people got this.

It’s just me today.

A Good Day!

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Today I had a good day!

I did not have a day without pain. In fact during the morning I was relatively pain free and by lunch I was in pain. It increased as time progressed but never got to the point where I had to stop doing everything.

It didn’t help that work was drama after drama and from one moment to another I felt as though I would blow my top. I have found that in the midst of my pain if there is any additional external stress it get worse. There is a psychological component.

Yet when I review my day now, I know it could have been worse. When I look at today in comparison to other days it was doable; it was livable; I survived!

So regardless of my pain levels, I am the one who determines whether a day is good or bad. I determine what perception will become my reality.

I had a good day today. I am grateful for the good days. It’s all relative!

No Cancer!……….No Cysts? Conflicted…..?!?!?

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The Results

I got back the long awaited results from the lab and there was no cancer found. Yeah!!!!!!!!!!!!!!!!

I am really happy about this. Waiting for results can be unnerving at times. This is not the first time in my life I have waited with bated breath on cancer results.

I wonder how many times I can do this and still get a favourable result? There must be some statistical equation .

Anyway, I truly am happy.

The Ultrasound

The “entitled” doctor requested that I repeat the ultrasound I did two months ago. So off I went to the hospital again to have the scan done. Surprise, surprise………..the doctor doing the scan said there were no cysts seen and the previously huge ovaries were normal in size………..all to the adhesions on the right one.

I was lying there trying to hold a straight face as he pushed and prodded the probe inside to get the clearest possible view of my organs. I heard him but wasn’t really listening.

So, where did the cysts go?

I do believe in miracles. I believe that God heals in many different ways; sometimes we need the doctors and meds and procedures and others the issues are just removed from us.

So for all intents and purposes I should be jumping over the moon. This means that the surgery will be less than previously anticipated.

Here is my conflict.

If the cysts were responsible for the extra, over the top pain then it stands to reason that they are gone so the pain should be gone also. Well that isn’t the case.  The pain is still here.

So this means that the pain and the cysts are not connected. Which in turn means that something else is still going on…………….Sigh!!!!

So yes I am happy the cysts are gone, just that feeling of elation is so short lived because I thought I had an answer which turned out to be erroneous.

I am not sure what I feel right now. I am unsure of the next step………….I know I keep on fighting and pushing and searching…………

This feeling reminds me of how I felt six months after my first embolization when I realized that the miracle I thought had occurred through the procedure was short term and not long term.

I am conflicted. I don’t know how I feel. To those close to me this is the best news but to me its tragic. I can’t take this one “victory” when it is a war I am fighting.

All I can do is fight on………………

 

Tired of ‘Entitled”Doctors

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I had my appointment with the OBGYN surgeon last Tuesday. His one chance to make a good first impression failed miserably.

He has the attitude that he is the doctor and I am the patient so I am to learn from him; there’s nothing that I can tell him. My granny raised me with manners so I didn’t walk out within the first five minutes of the visit.

When you have been chronically ill for a while, especially with something that is not well known you have to become a content expert. You have to do your research and know about the illness especially if you are going to be encountering “the entitled”.

I explained my history to him and got the impression he didn’t believe me. Like I would really make an appointment, find myself in a hospital, sit and wait, strip, have a pelvic exam by a man I’ve never met before………. just for the fun of it? I have nothing else to do with my life?

It was evident that he knew little, make that nothing about PCS. Endometriosis yes. PCS no. It was also evident he was not willing to accept that the disease even existed.

This is a problem on two counts…….there really is too little research done on this illness and many people just gravitate to what is familiar. This is in no way minimizing the suffering of Endometriosis or any other illness………its just all respiratory illnesses cannot be treated like the cold. Similar symptoms do not equal same illness.

It is an issue also because I am realizing a large number of OBGYNs don’t acknowledge PCS. Is it because it is mainly treated by Interventional Radiologists? I don’t know. but the little I have seen comes across sometimes as self-serving and not patient focused. I figure my doctor will be interested in helping me regardless of who ultimately performs the procedure or surgery; who gets the money; who gets the credit.

OK. he would be working on the cysts so his opinion on PCS in the whole scheme of things really shouldn’t matter but it rattled me to the core.

I left the hospital quite frustrated. I felt like I have been fighting a battle these past years and now instead of being around supportive, informed people I encountered an “idiot”. That’s harsh I admit. I don’t doubt his competence as an OBGYN……….he didn’t reach the position he holds through incompetence.

Long and short is I don’t like him. If someone is going to be my physician for any extended period of time we must at least get along.

I haven’t given up though, I will at least attend the next appointment. Maybe by then he will realize that he doesn’t know it all. I may be the patient and he the doctor but there is loads I can teach him.

New Year…New Challenges…New Hope!

d169a855be7d306799df69b3b3956dfeI’ve been thinking for a while about what it means to be at the start of a new year. What are my expectations? What will happen this year? Am I scared? Am I excited? Am I apprehensive?

I think I am all those things and more.

I don’t believe that all will be smooth sailing and this year will be perfect. I’ve been on this earth too long to believe that.

Here’s what I have found to be true. Just as you learn to to count  which prepares you to add, then subtract, then multiply, then divide, so it is with life. Everything that I go through is preparing me for a bigger test. That’s the reality.

So years ago when I thought that my health was at its worse and things could not deteriorate they did. The skills, knowledge and experience gained were of great benefit to me when faced with the next set of challenges.

What I went through in 2016 was rough, no doubt; but I am sure that I was being prepared for more.

So yes I am happy to be alive and to see another year. I am grateful for the lessons I have learned. I am a stronger person now than I was 12 months ago. I am more educated and informed than I was a year ago……..but I am not delusional.

I know that 2017 will have its moments that test my resolve. The situations that test my faith beyond anything I can imagine. I know there will be tears and loss. I know many days I will weep. I also know that once I don’t give up and let go I will get through each situation.

In church I hear all the time “we have nothing to fear for the future except we forget the way that God has led us in the past” Ellen. G. White. This is true. I know that my existence and my ability to move from day to day even in the midst of the deepest darkness is because of God’s Grace.

I walk into 2017 knowing there’s surgery ahead; knowing there’s pain ahead; knowing I will watch those I love cry and be sad. Although I know this, I also know that I will get through it.

I know that God and I together will get through it. So I look to this year with cautious optimism. I have hope and hope is a beautiful thing. I will travel through this year continuing to believe that life will improve. My health will improve. Things will get better.

I will not give up. This disease/ these diseases will not define me. I refuse to let them determine my every move. 2017 will be a good year!