Storm Warning

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People rush like crazy to the supermarket to stock up on canned foods, batteries, torches, water. Others jump in their cars and drive to the service station to fill their tanks with gas. A storm warning has been announced, people mobilize to do all the things they should’ve before hurricane season started, they rush to secure homes and life.Then we all sit and wait.

The rain begins to fall, the sky grows dark, there’s an eerie silence. The island is locked down and people wait in anticipation of the worst but hope for the best. Whatever comes, rain, thunder, lightning, flooding, fallen trees, damaged property, we will survive; we are prepared and we have support.

What do we do when the storm is not literal? What do we do when there is no warning? How do we prepare in that situation? What if there’s no support?

Illness is like that. A storm without warning, clear blue skies like in the picture above and then clouds just move in.  Even if we could prepare , no one knows what we are preparing for. Even if there’s support, we are all flying blind.

Just as with the literal storm, even if we prepare as best we could there’s no way of knowing what would happen. We can never know if the situation would turn out worse than we anticipated.

After, years of medical procedures, tests and medications; I thought I was prepared for the storm. After all I had been through some before. I had survived so whatever came I would just handle as before.

I’ve never been so wrong! Nothing could have prepared me for this life. Nothing I read, nothing the doctor said; prepared me for this reality.

 

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Junkie????

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I stumbled out of the car, my hands trembling, sweating profusely, up to the pharmacy door. I opened the door with my last ounce of energy and walked up to the counter. As his eyes met mine the pharmacist said “Lyn you look horrible, all the pain meds gone?”

In my head I was screaming “give me them, give me them, I need them NOW!” Of course in reality I said “yes” and handed over the prescription. I asked for the gravol first, opened the refrigerator and took out a bottled water, popped the cap and downed that one tablet as he prepared the Tramadol. 10 minutes later I swallowed the Tramadol and prayed it would kick in quickly. Another 20 minutes and I felt the edge get knocked off the pain and I sighed…..thank God for pain meds!

Relating this experience to my doctor he said to me :that’s drug addict behviour”; in that moment I thought “its official you are now a junkie”.

Is there a categorizing system for junkies? Are you a particular type of junkie when you need the drug for pain relief as opposed to achieve a high? I wonder. I take this medication because I have to that’s the only reason. If I can stay in bed and not have to get out for the entire day I will opt to stay in and not take the medication. Realistically though, that is not an option on most days. I don’t like the way I feel when I am taking the Tramadol but I hate the pain even more.

I used to be able to take NSAIDs (non-steroidal anti-inflammatory drugs) like Voltaren. Cataflam, Acteric, Vimovo and Baralgin. Layering the NSAID with the Tramadol worked and worked well for me. I went skipping through the day. Then I developed an allergy to that brand of meds so here I am. All I have left is Tramadol.

So am I a junkie? Or am I just a prescription medication for pain management dependent individual?

When I hear the word junkie do I picture myself or well dressed middle class working professionals? Most times we think of persons using illegal drugs and who look strung out and unkempt. I am definitely not like that; but on those bad days I need the drug like I need to breathe. Maybe its a thin line I’m walking; maybe another topic for therapy; maybe I don’t know; maybe I don’t care.

This I know, I am doing the best I can with a messed up situation. My best right now requires Tramadol; I wish it didn’t but it does. That’s the reality. Such is my life.

So if you look at me and call me a junkie that’s OK, you are entitled to your opinion. I’m just a girl doing all I can to survive……one day at a time.

My Time=My Life

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Today was just one of those days where I was reminded of how precious time is. First, the cat died. Let me say I really didn’t like the cat; I found him annoying but now he’s dead and I miss him already.

Much of my day was spent talking about issues surrounding death and dying, those we’ve lost and those we have. In this space now I look back and think “did I waste any time today?” That question really is “did I waste any of my life today?”

Sometimes we have experiences that push us into particular directions. I was the go to person who could get things done. If you needed help find Lyn, if you needed something organized, controlled, sorted, made, cooked, kept etc.etc.etc. find Lyn. Then that all changed.

Firstly, I got sick and realized that as much as I wanted to I couldn’t do so much anymore. I started to decline positions and drop some of the many hats I wore and people got upset and took it as I just didn’t want to help. Truth is I realized that as much as I wanted to it was in my best interest to say no.

By the time I had the first surgical procedure for Pelvic Congestion Syndrome(PCS), I had previously had 5 surgeries. All were not elective, I was acutely aware at least once before that I needed to have surgery in order to ultimately save my life. After each procedure my level of awareness grew. Being in hospital does something to you, being in pain does as well.

So now, especially on the bad days I remember to value every moment. Yes we all know we will die but we don’t all think about it.

I think if I share any time with you, you should count it a privilege because I am sharing a piece of my life with you. I don’t have time to spend being idle and talking about people and not being productive.

Every moment that I have where I have the energy to do something or make a memory with my children I want. Every moment that is without pain or that has minimal pain I want to grab and “run” with.

Sometimes I wonder if I didn’t have the surgeries and didn’t have the pain if I would be more fickle, probably….but now I don’t have the time. Pain has given me discernment, I weigh each activity in the balance ; in the scheme of what is truly important in life. For me it is and always will be family first.

So when I tell you don’t waste my time…..understand I’m saying I won’t waste my life…………because life is too short and too precious. My time is my life!

Donut: My Self-Esteem Builder

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I work in a school and every day I do sessions with groups on self-esteem building and how to have positive self esteem etc…I talk all about affirmations and looking for the positives and celebrating your achievements and so many other things. All that I say is true but nothing prepares you for having an appendage, or apparatus that will draw attention to you and the questions and stares…….great self esteem and resolve test. Initially, I laughed inside because I knew I was failing big time!

These veins that I have on the inside of my body sometimes manifest themselves as hemorrhoids, well actually one hemorrhoid. From my research hemorrhoids are basically veins that are stretched and malfunctioning. Mine are caused by the faulty valves; so just another type of varicosity.

If you have ever had a hemorrhoid you know how painful it can become, itching and burning and just causing misery. I used to sit on the bias (diagonal ) so that I would avoid sitting squarely in the chair. The harder the surface on which I sat the more pain I would encounter. I found that even when I was not experiencing any hemorrhoid pain I would have increased pressure in my pelvis with sitting; especially on a hard surface. One day the doctor said “you should get a donut”. Ok I thought I will do that.

Initially I searched online and in rehab supply stores here and as I researched I decided that I would make my own. My donut looks nothing like the one in the photo. Yes it is the same shape but mine is covered in bright multicolored African print fabric with  an accent piece in another color. I would take a pic and post but right this minute its in the car and that is just too far away.

So I made it and from day one as I sat on it I found instant relief. It was a breath of fresh air. When the hemorrhoid was problematic it helped because that part of my bottom was not in contact with the chair. Outside of the hemorrhoid it shifts the pressure in my pelvis and eases the weight considerably, in turn easing the pain. I usually can’t/ don’t sit for more than 1/2 hour without standing and walking for a few minutes, if I have to though, Once I have the donut its ok.

Initially, I walked with the cushion in a bag. When I took it out to sit on people would stare, to the point where they lost focus on what they were doing. Then the comments began. Never questions but comments. “The last time I had one of those I was having baby”; “Oh you have a pretty donut cushion!”; “Look she is sitting on a donut, wonder what happened with her?”

Remember, I spoke about the expanding abdomen? Well some people actually stood and focused their attention on my stomach. Yet, nobody was bold enough to ask me any direct questions.

Now as strong an individual as I am and as self assured as I know myself to be; the days when the pain is at its worse and I am relying on medication are days when I feel least sure of myself. I feel ugly and unattractive. Every negative thing that I can find about myself is magnified tenfold. My hair doesn’t look how I want it to; my face has pimples; my clothes don’t fit well; I’m miserable. On a rational and objective level I know its the pain and at times hormones that are clouding my judgement. I know I’m beautiful and looking great in my clothes. I know I am quite attractive and my face regardless of one pimple or many is appealing…..the problem is I don’t feel that way.

In these moments of pain, psychology would say my right brain takes over, all the emotions rule my thoughts, facts and what is real are shoved in the background. I’m vulnerable. On some of these days I’ve thought ” I can’t deal with the stares and the comments today, I should just leave the cushion in the car”. I almost did on occasion. Then I said ” girl you don’t owe explanations to anyone”. I had to come to accepting for myself that this is my reality now. I need the cushion, hemorrhoid or not. Its about comfort and its about health.

I decided to make a few more and have them as accessories to my clothing. Haven’t gotten around to it as yet but I will. I accept the way things are for now. They may change for better or for worse. Whatever comes I will handle. There will always be those days but I will continue to use my donut;I will continue to build my self esteem!

 

Today I cried….

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Today was a bad day as far as bad days go. I have been feeling under the weather for the past three days and have been taking pain meds to lessen the pain and help me through the day. On my 1-10 scale the days before this one were 6-7.5; still tolerable for the most part.

Last night I went to sleep and to be honest don’t really recall sleeping. I guess that is how it should be since you are asleep . What I really mean is I don’t think I really slept. I am aware of tossing and turning, shifting and moving pillows around to support my back and my pelvis. I didn’t find a comfortable position until about two hours before I expected to get out of bed.

I awoke to pain so intense I was crying and did not even realize until I attempted to sit up and it instantly multiplied and I felt the tears on my face. I think  I was in a state of shock, trying to process it all quickly. The pain was mainly surrounding my right ovary and down the right leg. I felt it all across my abdomen and into my back once I attempted to sit up.

I lay there just crying for about 10 minutes. It was still pretty early in the morning; my husband was already out for his morning run and the children were still asleep. For all intents and purposes I was alone……I felt alone. I started to wonder how would I get out of bed? Would I have to wait until hubby returned to get help? As I lay there my doctor messaged me (good support that he is) and I chatted with him for a bit. Recommendation: take the pain meds and remain in bed for about 1/2 hour. Great!!! Just how would I get the meds?

I crawled off the bed (that should really say walk but honestly I crawled) and took the meds and crawled back in. Yes they did kick in about 20 minutes later and I was able to walk…actually walk this time….rather slowly into the day. Doc recommended I keep meds and water near bedhead for moments like this one.

I dragged into the day still in intense pain but with enough edge knocked off to look to the average person as though I wasn’t that well but not as horrible as I felt. Upon arrival at my workplace ( I was driven) I took some more meds, tried to sit and keep quiet.

The pain peaked and waned (no less than 7 out of 10) throughout the morning. When it peaked I would start to sweat and with it I would start to cry. I sat with my feet up on the same level as my hips and just tried to breathe, but I cried.

I cried because of the pain; I cried because I was frustrated; I cried because people saw me and asked what was wrong; I cried because I had a plan for the day that I could not achieve in my present condition; I cried because I was miserable….I just cried. It brought an emotional catharsis but did nothing for the physical pain.

If I could’ve chosen I would have stayed home and wallowed. I hate days like this where the pain seems to define my every thought.

After lunch I took some more meds and did what I could for the afternoon….I then came to a point where I just said “I’m done”. I was done for the day. I knew I had tried all I could but nothing else was achievable.

On the way home, I dozed in the passenger seat. I arrived at home, did an extra quick supper for the family and I (so I could take some more meds) and just got into bed.

Here I am now, exhausted and spent. No energy, just pain and still I cry. I’m just praying tomorrow will be better.

It hurts my heart….

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Last post I was trying to figure out where acceptance and resignation end and where giving up begins. Many times  in life we have a hurt or a challenge and sweep it under the “carpet” and move on as if it isn’t there. In the early stages of PCS I did that as well.

I think the biggest challenge was not being able to fully explain what was taking place in my body and people….doctors even not believing that I was actually in pain. I even started to doubt myself.

I mentioned I’m  a Psychologist. I studied Psychopathology and read all about various disorders in DSM IV and now V. On many days I said to myself “you must be a hypochondriac” or “you must have Munchhausen”; you must have something wrong with your head because there certainly is nothing wrong with your body. Then I would answer back “but there is something wrong with your body, you can feel it. No matter what anyone tells you there is something wrong!” Then I would go on for a few more days and do the same thing all over again. then I would say “girl, stop talking to yourself!”

I’ve found that in the midst of the most horrible physical pain the emotional pain becomes more intense. It hurts when I have to constantly say no to my children OR I can’t do that with you now OR  I just don’t have the energy; then I see their expressions and it breaks my heart. It hurts to see them crying out of pure frustration with a situation they don’t and can’t understand. Then I begin to cry as well.

It hurts when I look at all the things I can no longer do or am afraid to do because of the anticipated pain. Case in point, for the last few years I participated in several 5 km walks and had decided last year that I was going to run this time around, whatever the race, whatever the route. This decision was made in the 6 “good” months after the first embolization where I thought “wow, this procedure really worked; it’s miraculous!” Well 6 months passed and I started to realize “worked…..not so much”. So since then I have been struggling with exercise. Truth is I love to run, I love the adrenaline rush and the burn. I can still run on the “good” (I use that word extremely loosely) days. I have the capacity to run. Running is not the problem. Its what will happen after. As soon as the levels of adrenaline and endorphins drop in my body the pain sets in. Most days I have 10-15 minutes tops after any physical activity before I’m struggling to walk or “running” for pain meds. Then people will say ” you really need to exercise” OR “you putting on some size though”. I fake smile and keep moving but it cuts me to the core. So I can exercise but the fear of pain cripples me….in more ways than one.

Even when the physical pain is somewhat under control the emotional is ever present. I can sweep it and cover it and pretend not to see it but I know its there under that carpet.

My doctor always says “chronic pain isn’t easy”. Its true because most persons focus on the physical aspect but for whatever reason neglect the emotional.

So what do I do? I cry, I stay away from people, I mope, I wallow and then I go to therapy myself. I go and talk it through with someone who does what I do; knowing full well that for me its not about what they say but just about getting it out, about “speaking my PEACE”

I do the things I like doing when I can. I make memories with my children and I focus on whatever positives I find. Then I start from the top again. It’s an everyday struggle, what works one day doesn’t necessarily work on another. I handle it how I can and that’s enough for today….it has to be; tomorrow will take care of itself….

Pain

Have you ever had a period where you thought you were going to die? Really, I mean die. The pain was so intense that you figured this was the ultimate/ Nothing could be worse? Then it got worse?

Its difficult to quantify the pain I experience with PCS. Many people have said to me ” nah it can’t be that bad” or “that’s all in your head”. They say this because they cannot fathom pain to the extent of which I speak.

Let me separate the pain into sections: back, legs, pelvis and periphery.

I have constant lower back pain. Interestingly enough I’ve had this issue for years before the PCS diagnosis. I always knew it was tied to my pelvic pain but couldn’t quite figure it out. I realize how acutely aware of the model and make of chairs I have become. I examine each chair as though it is on trial for murder and I am the prosecuting attorney. I know all about the slant of the chair back, the angle of the seat and arm rests, whether the two together will make a right angle and have the sitter upright or not. Most days I sit with a back rest to ensure that the angle at which I am sitting is one that causes least pain. When the back hurts sitting, standing, lying down…its all problematic.

My legs get weak and feel as though they are going to give out beneath me. There is a radiating pain through each leg that causes me sometimes to just stop walking or moving for fear of falling with the next step. This happens most often at work when I am moving from one point to another and most times in the afternoon. I literally stop and stand in one place; most times against a wall; and pretend to be looking at something so I don’t look totally weird just doing nothing.

The pelvic pain is akin to childbirth contractions. The difference is that I knew the contractions were for a time. I was not going to be in labour forever. Just as its near impossible to walk around as contractions intensify in labour, so its impossible for me to move when the pain intensifies. There is really no first day vs third or fourth day pain; its all the same. Cramps akin to contractions that cripple. Without some pretty strong meds I am confined to bed, need assistance with walking or moving. just lying there in a ball.

The periphery is everything else. The headaches, nausea, mental fog and confusion. Put all of the above together and most days I am of no use to myself or anyone else. The thought alone of doing is too much. My children look at me and say “mummy is ill again” or “mummy needs a break” and just go on about their day.

My doctor would usually ask me to rate from 1-10 with 10 being the worse. Actually he can look at me and see 10. That’s when my husband all but lifts me into the office. 8-9 I can walk in albeit slowly but still need the intravenous meds. Most days I am between 4 and 7, I can live at 5; there’s some pain and discomfort but it’s controllable with meds and not too many. The pain never goes below 3, so 3 for me is like 0. Its been this way for a long time now. I accept it…which is not necessarily a good thing…I guess…… but there’s a thin line between being resigned to a reality and being hopeless. Sometimes I am not sure which one it is .