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.

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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!

Lost friends………friends lost

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My friend says her circle is so small that she talks to herself.

I think I am almost there. I know that as we grow and mature we have to examine the people we associate with and sometimes redefine the terms of relationships. Some friendships have to come to an end and others have  to be tested and adjusted. That however, is not what I mean.

So I have pelvic congestion syndrome and the past few weeks I’ve been battling with all the new stuff- cysts , adhesions etc. So I really have no time to socialize.

“Friends” get offended when I tell them I’m tired or I can’t talk right now. When I say no I will not be coming to that or I will not be there at one event or another they act like I don’t want to be around them.

Most days I am trying to make sure my children have something to eat and at least take one shower. All this between the sleeping because I am am always soooooooooooo tired.

Trying to still do my work and make sure that I am making a positive contribution to society. Again all this between sleeping because most of my time right now, once I am at home is spent sleeping or at least in bed.

So in some ways I don’t want to be around them- this is sad and liberating all at the same time- this is my reality. I don’t know for how many more months or years, but it is.

So I lost some “friends”. Some have left and others I have said “I just can’t right now” and they have split.

I’ve also gotten stronger. I’ve grown. I’ve gained some new friends. Many I have never even met. The sisterhood is strong.

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I know I am not alone. I don’t have to talk to myself. My circle is not small.

I’m not dead yet…..sheesh!

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Why do people keep treating me like I am dead or dying? I’m definitely alive ….dying I have no idea.

I think its most times out of concern and a misguided desire to help in a “helpless” situation but its also frustrating.

On one hand I think..”can’t they see that I’m ill?” and on the other its “I’m ill but I’m not dead o.m.goodness”

So ok I’ve got Pelvic Congestion Syndrome and now hemorrhaging cysts and adhesions which look like endometriosis which was previously ruled out so yes I’m ill. The addition of the cysts and adhesions is extra pain on top of the pain I had before, yes that’s true.

I’m honest so I admit that I can be pretty miserable and unpredictable and “piggy” when the pain is at its worse like now. I try to stay away from people sometimes but that doesn’t always work.

Those closest to me see my pain, they see me struggling to stand, get in the car, get out the car, get off the bed. I was struggling just today to keep a neutral face in church while at the same time breathing through cramps like contractions. So yeah…I get it I’m not Hollywood’s next big thing! People see. Fine!

Does this mean that you get to decide what I can and can’t do? Do you get to say :Let’s not ask Lyn she is ill”or “don’t bother her with that she is ill”….? Some people, friends and family alike, out of the goodness of their heart try to divert responsibility from me. They mean well…..but I don’t like it.I don’t like people making decisions for me………straight.

I have found this aspect of dealing with illness difficult to maneuver. I want people to notice when I am in pain and react accordingly but the reaction I get is too far south of what I need. Truth is …everybody has a struggle….I know this. So as horrible as I deem mine, you have yours as well. I don’t want to seem ungrateful for the help people give but when decisions are taken away from me and they are about me it increases my feeling of helplessness……….I feel powerless.

Reality is I am battling a disease that wants to control my life, my every movement and just when I thought I had the slightest handle on it…….more complications. Making decisions for me sounds like I have already lost the battle.

I am not dead……….I am still alive…….ask me……….let me be the one to tell you no I can’t do that right now. As much as I hate to……..let me be the one to tell you in the middle of whatever it is I am doing that I cannot continue.

You know what? The best way to help me is to talk with me first. Ask me what I want. Let me tell you before you do………..not after the fact; because when I do that and you have already put things in place it seems ungrateful.

And another thing…….don’t tell other people “Lyn is sick so ask somebody else”…………………..You truly have no idea what you are doing to me with that.

So here’s the thing. Ask me. I will be honest. I will tell you yes today for next week but truth be told every day is moment by moment. Yesterday at work I was doing well and suddenly I was in excruciating pain. All I could do was drop what I was holding and keel over. Such is my life.

So ask me and let me say yes ………….but I will also tell you to get a backup, just in case. Don’t get them behind my back but be open about it. I will even work with them so we are on the same page. This is me right now………..I accept it.

My illness(s) do not define me. Stop walking on eggshells around me. stop making decisions for me. I can’t promise I will always be in a good mood because pain drains and frustrates me; but I will promise I will be honest.

As long as I am alive treat me like everybody else. Here in Barbados we have a saying “take the time from me” that means “follow my lead”. let me help you to help me.

Stop treating me like I am dead!

Mummy you never……….

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“The only physical thing you do is get up and walk from one place to another. You never play with me.”

I had no words to respond to this. My daughter wanted me to go outside and play with her…….catch or something……I said to her…”I can’t right now boo” and that was the response I got.

I have difficulty explaining the extent of the pain I felt. I wanted to cry but couldn’t. She was standing there with tears in her eyes and my crying would just make it worse.

I raised this child to express herself and be honest with me…..that’s all she was doing….trying to express her frustration and hurt over this situation that neither of us could control.

I sat with her and held her and listened as she spoke and as she cried. I was mummy but mummy needed someone to hold her and listen to her.

Today another piece of my heart died……..

Something else is wrong????

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The level of pain had not shifted from 8-10 for 2 straight weeks. I was going crazy…..I concluded something else had to be wrong.

After my “near death” experience as it is labeled in my mind, I was at home because I really could not work. I’ve been doing the minimum for a while now. I accept that I will win no awards for the cleanest or tidiest house EVER in my life. My reality some days is to just make sure we have all eaten something and had at least one shower. That’s how it is living in pain. All the unimportant stuff just drifts away.

The doc said he was concerned that something else was going on because at least the levels would drop between cycle and ovulation a bit. I would get a break (use that word loosely, but it won’t stay at 10). So we decided on an ultrasound- abdomen and pelvis.

I went off to have the scan done, thinking …something will show up…..and it did. So apparently I have hemorrhaging, blood filled, cysts in both ovaries. Along with these I have adhesions on the right ovary.

Let’s take a side bar and talk about this right ovary for a moment.

So I had the hysterectomy and because I am so young my ovaries were left intact. My body reacts as though everything is still there, hormonal cycles etc have not changed. I can clearly feel ovulation and cycle time. Together those are pain times.

The right ovary has always been more painful. While I do get some relief on the left side there is ALWAYS pain on the right and in the ovary. Always…..So at the worse of the worse the pain on the right is down the leg and spread across the back….more intense than anything on the left.

The previous ultrasound before the one I did a few weeks ago the right ovary was 13 cm across while the left was 5 cm across. It has always been a problem so I was not surprised.

So back to these cysts and adhesions.

Obviously, both ovaries were huge….as ovaries go…and I need to do something about them.

I don’t know if the internal scan aggravated things but the pain since the scan has been in my face. I am aware of it with every step I take. I have come to loathe stair and inclines; I can stand for 15 minutes tops and sitting and lying down hurt. I am back to propping with pillows at night just to find a comfortable position and sitting using both the donut and back rest.

So now I am staring surgery #8 in the face……….I am not happy about this but it has to be done. Things have to be unstuck and cysts removed. Actually, I would like them to ignore the fact that I am not yet 40 and just remove the ovaries. Its too many years of problems with them…..endometriosis, estrogen dominance, PCS…its time they go I believe. That’s just my lay person take on it.

This new challenge along with all the pelvic congestion stuff- I still get tired as the day progresses, tummy still expands in afternoon, still have the heaviness and weight etc etc- has made life over the past few weeks not great. I haven’t given up but I’ve definitely slowed even more.

I would like to do the holidays before I subject my family to the hospital run and recovery-

I am hopeful I will get my wish. However, even before the type of surgery is determined I have to rule out cancer they say…………..

I did the tests………now I wait on results.