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………………

 

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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.

Went back to bed……my family stopped moving :(

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I tossed and turned last night and as I tried to sleep I knew that today was just going to be a bad day.

I awoke nearly three hours later than usual today. That’s never a good sign, good thing I am on vacation. I lay in bed and reached for my devotional book and proceeded to do my devotion and say my prayers all the while trying to gauge the extent of the pain I was in.

I got out of bed, said good morning and realized that although everyone else was up no one had eaten or made breakfast as yet. They were waiting on me. Hmmmmmmmmmmm. This was somewhat disturbing because usually by this time everybody would’ve eaten and showered. It seemed like the pace of the day was being set by me.

I ate some fruit, took some meds and went straight back to bed, no shower, just back to bed.

I awoke in the afternoon. My husband had cooked lunch but my daughter hadn’t eaten. I got out of bed and went to get something to eat. I asked her if she was ready for lunch and she said yes she was waiting on me. Sigh!

While I ate, I observed that no one else had taken a shower either. They were all still in PJs. Not good. In one way or another everyone was looking at me. Trying to see what would happen next.

I just went back to bed. I was not in the take care of everybody, calm everybody’s fears mood today. I just needed to rest.

The scary part about this is that sometimes it seems like we set the tone for everything that happens in our family during a particular day or period when we aren’t well.

It makes me scared that they won’t function well or can’t function well when I am not well. I hope they can.

Reality is I don’t want that responsibility on my shoulders I’ve got enough.

 

Sex………Love to Hate to Love It!!!

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Firstly, let me qualify what I mean when I say sex. I will use the official medical language since whenever I say sex my doctor says “intercourse”. So, yes I mean intercourse.

I’m 38 and I have in many ways just discovered my vagina. I always knew where it was and what it did. I pushed two children through it and obviously would have been having sex for years. What I mean though is I have finally come into my own and am comfortable with the body I have; scars, fat areas, soft areas etc.

I can give myself freely without reservation and inhibition, without hiding any aspect of me. I can have intercourse with all the lights on and no covers and be uninhibited. In lots of ways this is liberating. Many of us women struggle to be here. I’m happy that I have arrived.

My reality of sex though is in many ways directly opposing the above.

For many years sex has been a delicate dance between levels of pain, hormonal stage, energy levels, positioning, interest, fears, doctor’s instructions and desires. So much for spontaneity!

Sometimes, in my mind its “why bother”. Other times its “am I prepared to deal with the pain” Reality is that every-time I have intercourse I risk having pain. Pain that will knock me off my feet and “cripple” me for a few hours at least.  At most I could have pain for days.

So there’s no quickie before work and out the door or lunchtime and back to work in my life. I accept that I must ensure there are a few hours at least between the time it’s over and when I am required to do anything else.

Doc says “preparation is key”; so just as I have meds within arms reach when in bed in the event that I awake in pain, I have to prepare for sex.  In theory this is possible, I can pre-medicate ( take some pain meds about half hour before I plan to have sex so that by the time we’re through the levels of meds in my system are high). This as I said is theory because arousal is not dependent on plans.

Yes I have little people in my house so there is some measure of planning or rather waiting till they are asleep, downstairs, occupied, away etc. but still all can’t be scheduled.

It is what it is yes!

Let me separate the pain into two categories. Firstly, is the pain as a result of the Pelvic Congestion Syndrome. This is for the most part pain that I experience after intercourse. It correlates with the level of the pleasure I derive i.e more pleasure….more intense pain. I don’t know if this is a researched and scientific finding (probably not since research on PCS is greatly lacking) but it’s been my finding.

This is akin to the pain I experience after exercise or other physical activity. After the endorphin and adrenaline levels drop I feel the pain intensely. Added to this though is pain as a result of vaginal penetration, I can’t quite quantify this pain but I have found that anything inside leads to pain after e.g after the internal ultrasound there was pain for days. Obviously, an internal exam or ultrasound does not compare to the penetration, movement etc. of intercourse.

So it’s those two combined.

The second category of pain is recent and as a result of the cysts and adhesions I believe. This is pain during intercourse. This is instantly sharp and potentially “crippling”. Just as with an internal examination the doctor applies pressure to feel ovaries etc. and it hurts………..same thing. With some care and positioning adjustments this can be minimized.

So two categories of pain.

 

Did I mention that I do love sex?

 

A friend told me once  “hands are for release, mouths are for pleasure, inside is spiritual”.

These 11 words ring true to my experience as well.  I do believe that there is a spiritual and psychological  component to intercourse that many overlook and at times deny. So yes, the physical need can be met otherwise but there’s more to it than physical release or pleasure.

My marriage is not made or broken by the amount or frequency of intercourse. However, intercourse is an integral part. There is the physical need to be met but there is a much deeper connection that I find lacking the longer we go without.

Side bar: My husband is an amazingly patient and understanding man. I praise God for him each day. I know that some of my sisters are not so blessed and I pray for them because many men do not handle this situation with grace.

So in spite and despite the knowledge and expectation of pain.  Even outside the pleasure I have learnt to derive and give through intercourse. I seek that deep, spiritual connection.  I continue in the midst of the pain believing that one day things will improve.

I will be able to say:

Sex………………..Love to Love It!