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.

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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!

Best Laid Plans…..

bestlaidplansRobert Burns in To a Mouse said “the best laid plans of mice and men often go awry”. Otherwise we are told that if we fail to plan we plan to fail. What happens when you plan but still fail?

The last 24 hours of my vacation were filled with so much pain ……it was a good thing I planned so well……….I think…..Sigh!

I sat with the calendar and carefully planned to eek out 10 days vacation between cycle and ovulation. I had it done well…….if there was ever going to be any “good” days in this month there they were.

Honestly, I knew I was pushing it a bit with the 10 days. I really should’ve done 8. Anyway, vacations are not generally part of my family’s life. My money is spent at doctors and on tests and medication. So this was a major thing……..reach for the stars if I didn’t get it at least I would land on the moon. In theory anyway.

So we were to return to Barbados on Tuesday December 27 in the evening. Ovulation for me would’ve been December 29. However we know how this goes I have pain before. I figured that by the time the pain really set in I would be in the air at least or at home. Its only an hour to Barbados.

Well sometime around 10 a.m on Tuesday I started getting cramps and pain in the right ovary. Not to worry, I swallowed some pain meds and went about packing. We got to the airport around 5:30 for the 7 p.m. flight and by then the pain had spread to the left ovary and into my back……..but home was in sight.

Then we heard the plane was delayed because it went from Antigua to Guadeloupe and was delayed there for a bit before taking off for Dominica. Hmmmmmm…..well my meds were in my checked luggage because I really didn’t want to be trying to explain controlled substances…….despite the fact that they were in the approved prescription packet with my name and details on. It was safer that way.

Then the flight went back to Antigua after reaching Dominica because the winds were too high to land. The flight was eventually cancelled and we had to find accommodation to spend another night.

The situation went south quickly but was worked out by God’s Grace through a brother in Dominica but I was in horrible pain by the time we got to the temporary location. I could hardly walk.
I tried not to cry but when the children went to sleep I broke. The pain was so bad. I couldn’t stand on my own. I just prayed that whatever happened I wouldn’t collapse in Dominica. The best laid plans yes!
Reality is the ER in Barbados is not a place I like because doctors don’t know enough about PCS to really help me so I couldn’t fathom an ER in another country.
Above all I prayed that the children wouldn’t see and lose it. I just wanted them to have a break without mummy being sick all the time.
I didn’t sleep that night because of the pain and the next day before going to the airport I was just in bed…..moving very slow. By the time we got to the airport the next day I was zoned out. You know that place you get to with all the pain and meds battling in your system…..kinda distanced from reality because the reality is too much to handle?
The whole experience gave me pause though. I already plan everything around my cycles as much as possible. What else is left for me to do?
I refuse to stay home out of fear. We all have a struggle………life goes on……. just sometimes this struggle is terrifying.

 

 

I’m fine!?!?

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You know I say I’m fine but I’m really not but there’s nothing else I can really say.

So we were on vacation in beautiful Dominica, known as the Nature Isle of the Caribbean. So many natural wonders to see and places to explore. My family was so excited and ready and rearing to go. Me I just wanted to sleep, really.

We set off to explore the island with a friend who was acting as our tour guide. We went up “hot Soufriere” to the Fresh Water Lake and then made our way to Trafalgar Falls. I was walking a pace behind them as they rushed ahead to see and just trying to pace myself. Then he asked “are you OK?”

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Trafalgar Falls (One of the falls there are two side by side)
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View from “Hot” Soufriere

“Yes, I’m fine.” I replied and continued walking.

We saw the falls, the children and hubby bathed in the pool at the bottom and we moved on driving past location after location as we headed to the southernmost point on the island “Scott’s Head”. This is where the Atlantic Ocean and Caribbean Sea meet and it’s covered with the smoothest multi-coloured stones.

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View from Scott’s Head looking towards Caribbean Sea

Again the question is asked “are you OK?” By now its hours and a few questions in between to which I answered always “yes, I’m fine”. This time I asked “why do you keep asking me if I am OK?”

The response “you are so quiet, moving so slow, don’t really seem to be enjoying yourself” I paused for a beat. Really what could I say to that comment? To say I’m not well would encourage further conversation that I was not willing to have. To say I am fine would obviously not suffice since I was saying that all along and it was still being asked. What could I possibly say?

I responded, “I am not feeling very well, I’m very tired”.

This question is a problem to me though. I don’t want to lie but I can’t exactly explain anything. Even to those around me on a daily basis it’s difficult to understand. Especially when I look fine, most days besides the occasional slower than usual movements I walk just fine, look just fine, go about doing my work just fine. I don’t look ill.

Most times when I am in pain people will notice me sweating a lot and maybe breathing deliberately but most persons just assume I am hot. I just need to cool down a bit.

I am truly at a loss with what to say to persons when they ask. Many of them are not random people who are just being inquisitive. They are people who have spent time with me or around me and had the opportunity to observe and interact with me. It’s these ones that I am conflicted in terms of answering.

I don’t believe that my business is any other person’s business but at the same time I cannot lie.

I tell my interns that clients can tell when we are being authentic and genuine and will be the same if we are, so we are always to strive for honesty. I am not known as a fake person or someone who is not genuine but what happens when you hear the truth and it’s too much for you?

Most people can’t handle my truth.

Even in this blog. I know many persons have read it because I have invited them to. The majority act as though they didn’t. It’s too much for them to handle, too intense, then again what can they possibly say………..or at least maybe this is what they are thinking.

This is my truth.

So sometimes I will tell you I am fine. How you interpret that is really up to you.