Mandatory Sensitivity Training?

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Even as I type this title I am wondering why is it that people even need sensitivity training? What happened to our ability to empathize and treat people how we would want to be treated? What happened to thinking before we speak?

So, as you know I applied to a Doctor of Psychology programme and was accepted. I had originally set my start date to July 1, 2017 but due to everything that has transpired over the past few weeks/ 2 months I started to rethink that date. I though about it from the financial standpoint, since I just had surgery and will be doing a few courses of treatment over the next months. I also thought that as excited as I am to study again I need to take care of my emotional health as well before I launch into that.

Bearing this in mind I emailed my academic advisor and queried  deferring the start date of the programme and how exactly that could be done. I have yet to decide if I am going to push back to 2018 or attempt to start later this year. 2018 seems more logical at this stage.

I also queried if the university had any measures in place for chronically ill students or those who suffered from chronic pain. I just wanted to know; I like to have all the information together so that I can make an informed decision.

Anyway, she responded giving me various contacts to check for direct answers to my queries, including the university Registrar and Finance Department. She also informed me that I had been assigned a new advisor and she would be contacting me soon.

So, this new adviser contacted me shortly thereafter and the email went like this:

“Hi Lyn, I am Jane Doe your new academic advisor. I have read the email you sent to X and I think you should cancel your enrollment with the university. You seem to have a lot going on.” ;(

I was livid. I did not read anything beyond this point and I hit reply immediately. I just could not let this go. How dare she recommend that I drop out because of all the stuff I had going on? What had me even more upset was that she and I had never spoken or had any conversation, even via email, up to this point. I basically told her I didn’t understand how the response to my queries could be cancelling enrollment and from someone who has taken no time whatsoever to know anything about me beyond my name on a file at the university. I asked her what gave her the right to make any recommendation to me furthermore that one.

I then took the phone and called the university and spoke to her directly, I let her have it. I had to inform her that she was out of place as far as I was concerned and could benefit from sensitivity training. How would she feel if she was dealing with an illness that is impacting her ability to study as she wished and she was trying to find the best course of action and someone she had never interacted with told her to quit……..well then added on after saying quit………..until things have settled down a bit.

I also informed her that there will always be something going on, there will always be something to push through. If I quit at the slightest pain or struggle I will never get anywhere.

After I had said all I needed to say, she apologized profusely. Truth be told, I didn’t care for her apology. It meant nothing to me. …………This is why we have to be careful what we say to people. Once the damage is done the words cannot be unsaid and apologies do not cover the scars.

I requested a different academic advisor…..she and I will not do.

What is it that makes chronic pain/ illness synonymous with inability in some people’s minds? Why do we have to keep fighting to prove to people that we can do, be, learn, produce etc. just as well or better than those who may not have our struggle? Our process may be different and our path may have a few more twists and turns than others but we will get there.

I wish people understood the impact that their words spoken in ignorance have on others. If I was not as strong a girl as I am I probably would have cancelled my enrollment or at the very least been upset and said nothing about it.

Its about time that people learn how to relate to others. I thought it was something that came naturally to us humans but apparently it is not. People working in positions where they interface with the public and definitely in positions where their opinion has some bearing on decisions made should have sensitivity training.If it is already a part of them, great they will just be reminded. However, if it is not- as in the case of the advisor- they will do well to learn.

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The Measure of Success

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How do we measure success? How do I measure the success of the surgery? Is it an all or nothing thing?

This morning I awoke feeling crampy and aching all over. I’ve got pain on the right just around the ovary and my brain is kinda fuzzy. Feels like PMS………well in my case PNothingS. Great! Just wonderful!

Honestly, from Friday I was feeling like my hormones were getting wacky. I decided to adopt a wait and see attitude. I don’t know about others but after gynae surgery my cycling goes haywire and takes some time to settle down. According to my charting before the op, I should have ovulated last week. Obviously with all the organ handling, separating and removal on May 10, I was still in post op pain and mode last week. I now need to start charting again to establish what the cycle will be.

So, what does this pain today mean? As I am writing here I have already taken some meds and the pain is between 6 and 7…………livable/ doable. Does this mean that the surgery was not successful?

I think its too early to even think that. Things need to heal first before I can truly assess the pain. Even then, if the pain levels are still as they were before does that mean no success?

I’ve thought about this, spent a lot of time on it actually. I would say no; success is not as cut and dry as pain before surgery/ no pain after surgery OR horrible pain before surgery/ less pain after surgery. I think I should look at the little things, small progresses made and see how they add up as opposed to looking for the drastic change.

So far I’ve noted success in:

  • Bowel function- I can have a BM now without intense pain, stretching and cramping and having to move from bathroom to bed and stay there for at least half an hour before I go anywhere or do anything.
  • Sleep- I am sleeping more now that being awake throughout the night from pain. I still need to wake up to empty my bladder but for the most part I can sleep.
  • All day pain- previous to the surgery I was in pain all day long. Up until today that was not the case since the op. There is pain yes but not consistently throughout the day. It will take me some weeks to work through what is happening now and see if the pain has reverted to mainly cyclical and minimal in between.
  • Mental State- the impact that chronic pain has on mental health should never be discounted. Previous to the surgery, the flare I was in had lasted so long that I was really down in the dumps. I smiled and did what I had to/ what I could to fulfill my various roles but beneath it all I was seriously struggling mentally. Right now I am in a better mental space. Partly because of the improvements  I mentioned above and also because I was able to get some questions answered by having the procedure i.e what was stuck to what, where the growths were etc. So no matter what happens going forward at least I start from a more stable space.

Each of these things is major in its own right. Each one was a source of worry for me before the op and contributed to my overall disposition. The improvement equals success to me. I claim the small victories.

If we continue to look for the big earth shattering changes, most times we miss the small but significant ones.

Yes, I’m in pain today. It may continue for a few hours or a few days I have no idea. What’s good though is that I am in a better place to deal with it now. That’s success.

As the quote above says, this is a storm that I am in. I don’t know how I get through most times (actually I do………it’s all God) and I have no idea if it is over or when it will be over. However, the one thing I do know is that when it is over/ when it wanes before picking up again I can see my growth. I can see how I have developed and how I have become stronger. The person I was going in is not the same person coming out.

This to me is success!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Pearls of wisdom :(

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This week is shaping up to be an epic week. Its absolutely amazing all that has happened and this is just the second day.

I wrote just yesterday about being tired of explaining to people that I am ill regardless of how I look in the post How to look sick………... I really am tired of it. I wonder sometimes how many people really believe me when I say I am in pain. I’ve had enough medical professionals call me crazy so I guess the average person isn’t that far off when they doubt me.

I was talking to an acquaintance this morning and the person asked me what were my plans for the day. I responded that there was not much on my schedule and I was in bed getting a bit of rest because I wasn’t feeling great. The response I got was ” you always in bed, try and get out, conquer the pain“.

As positively as I tried to regard that statement my thought was “what! really!” I really wanted to give a genuinely nice slant to it but it reached me as a negative comment about me and in turn the way I handle being ill.

The word conquer means to get the better of/ overcome/ master/ take control of. Those are the words that came to me in the first instance. How could this person say such a thing. As if it is sooooooo very easy to control the pain and not let it control me.

So what, I am always in bed. No, I don’t love being in bed so often but lying down helps significantly because it takes the pressure of my back and pelvis and the pain is less intense. So, if I can stay in bed and still do work on the computer etc. I will.

This morning though I was just in bed, in pain. I had already started doing laundry and stopped because of the pain. The washer was still running and I fully intended to at least hang the clothing when it stopped, but for the moment I needed to rest.

Conquer also means to surmount/ rise above/ get over. Unfortunately, these more positive meanings did not come initially. In the moment I responded to the individual “if only it was that easy”……. instead of all the other words in my head. This was good though, those other words weren’t reflective of my character.

After I had calmed down and was able to get out of bed again, I decided to look at it positively instead of negatively. I decided to process it, think all my feelings through. See what else was coming to bear on my reaction and look at the statement for what it was…..just a statement; not necessarily intended negatively.

Truth is that it is very easy for me to lash out, if only in thought, at others because of what they say and do or rather how I perceive what they say and do. I have to be so careful with what I say because in the midst of pain and especially extended periods of pain my judgement is skewed.

Pain causes me to be short and sharp with people. Many times this is why I stay alone……for fear of lashing out in anger and frustration at the person in front of me when it is the illness and pain that I want to shout at. I am working on this. Like most other things, awareness is where the change begins……. I am aware.

So, I will not let the pain define me. I will not let it change me. If I inadvertently hurt someone because of it I will apologize but I will try first not to hurt them. Even if the thoughts come, I will keep my mouth shut until I can process them. Some things when said cannot be unsaid.

I will take the advice given this morning. I will conquer the pain. I will rise above it and surmount it. This I will do by continuing to follow my dreams. I will continue to work and study. I will continue to do the best that I can from day to day.

On those days like this morning where I have to rest, I will not view that as the pain conquering me; rather, I will see it for what it is. That is just me doing the best that I can in the moment.

The only time the pain will win is if I give up………….and that is not an option.

I will conquer!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

How to look sick………..

641b9af8f29d699da4896b1fc2d25545I’m so tired of explaining to people that my looks have nothing to do with how I am feeling or whether I am actually sick/ ill or not. Time and again I say to people I am not well and hear them say “but you don’t look sick”.

Just yesterday, someone approached me; I was sitting hunched over with my head on a table. “Hi Lyn, I heard you weren’t well”. That comment made it seem like it was in the past so I responded ” I am still not well”.  The next response was ” but you don’t look sick, you, look healthy and bright”.

“Looks can be deceiving”, I replied.

You know there’s a book titled “How to be sick”? I thought I should write one titled “How to look sick”.

Now since I can’t write a book overnight, I have done what I am calling “Lyn’s Quick Guide to Looking Sick: All you need to know in one place”.

I should probable say that these steps are guaranteed to get people to believe you are really ill. Try one or all and tell me about results:

  1. Don’t Smile– Keep your face screwed up all the time. Never wear a smile, only frowns. If you smile people will think that you can’t possibly be sick. It’s a fact! Sick people always frown, that’s all they do apparently. So if you want to convince people that you are actually ill……… don’t smile.

2. Stay at home– This should actually read, never leave your house to go anywhere                beside the doctor and back. That is…..no shopping- groceries or otherwise; no                      conducting business of any type; no work; no driving; no going to the beach or                    park……… or anywhere else. It’s proven that sick people don’t leave the homes                     because if you leave you can’t possibly be ill. It would mean that you are faking it               because somehow ill and housebound are synonymous (no offense meant to those             whose illness leaves them housebound). So just stay at home.

3. If seen walk slowly– There is no way that one can be ill and walk at a regular pace             or faster than another person; that is absolutely unheard of! If you are ill as you               claim to be it must be manifested in your walk, you must move slowly and with                   caution (mind you depending on my pain level I do walk rather slow but I’m not sure       it makes a difference). People who are not ill walk briskly and get where they are               going quickly; the sick ones don’t……. that’s just the way it is. So walk slowly.

4. Cry Often and in Public– Ok, firstly I do cry often when it gets really bad. That’s not what I am talking about though. You need to cry and let loads of people see you crying. If you are actually ill with these chronic and painful conditions, you will be constantly sad……right? Actually, you would be depressed (truth is some of us get depressed and are depressed I know, this is not about those of us).

So someone who is sick cannot be happy and go through a day like any ordinary person without crying. We must cry from the pain and the situation and every and any other random thing. We do this because we are actually ill and that’s what ill people do. Apparently crying often and in public are sure fire signs of being sick………..if its not present we just don’t cut it. Cry in public ……….do it often.

5. Be Disheveled and Unkempt– Friends, this is a biggy. This really is a good indicator of illness. We must be disheveled, untidy………..somewhat not put together. There is no way under the sun that we can be sick and dress well, with everything in place, neatly ironed clothing, hair well done and styled or at least visibly combed. We definitely cannot have make up- even the basics like powder or lip gloss……….that is an absolute no no.

If we are actually sick, all those things will be things of the past. How can I look at someone and say that I am ill and look so amazing in my clothing and everything in it’s place? That’s impossible…………it must be! I must be lying!

 

This is as far as I have gotten in my “Guide to Looking Sick”. When the other tips come to me I will be sure to share with you all.

Unfortunately, even if I do all these things people will still look at me and doubt every word coming out of my mouth. Its hilarious because if I had to choose an illness to have……….if I had no option of being well but had to be ill and could choose it…………I would probably choose one that people could see manifested somehow.

I don’t like the term “invisible illness” because it makes it seem as if the people are invisible too…………..and I am far from invisible. However, I would choose an illness that was less stress to prove its existence. One that I won’t have to prove that my pain is real and I am not mentally ill.

So, I don’t care if i don’t look sick/ill to those looking on. The way I look on the outside says nothing about the constant turmoil and pain I experience. If you doubt me, that’s ok, just leave me be. I have no time for people who need proof. Truth is, for some they will never sympathize or empathize unless its hits home to them, either they become ill or someone they love dearly. Only then will they believe me and others like me.

That is sad and unfortunate……..but it is the truth.

Surgery on the horizon: bittersweet decision

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I finally had my appointment with the surgeon last weekend. Over the past few months I have been back and forth to my GP, the hospital, OBGYN and finally the surgeon. My last visit with a doctor other than my GP didn’t go very well. I wrote about that in Dear Doctor from yesterday 😦 . That visit was horrible. However, he did give a referral to this surgeon who specializes in Laparoscopic surgery. I really don’t want a large cut. I had that with the hysterectomy and it took sooooooo long to heal. I don’t want it opened again if I can avoid it.

I went to this surgeon and the visit was as far as night from day when compared to the last one. The appointment was at 8:40 a.m. I arrived a few minutes early and was immediately ushered into the nurse’s office for the urine, blood pressure and weight checks. The doctor came and ushered me into his office shortly thereafter.

I spent probably 30 minutes in his office with him. We discussed the referral from the previous doctor and then he put that aside. He was interested and invested in just listening to me tell my story. He took a comprehensive history of all my illnesses and medications, not just the pelvic issue related ones. He took the time to hear and see me. It was the most relaxing conversation I have had with a doctor, outside my regular doctor, in a long time.

We then spoke about the examination he wanted to do and why. He left me in the office to speak with the nurse and then ushered me into the examination room with the ultrasound machine. He took the time then to talk to me and ensure i was ready for the exam and then proceeded to do the pelvic exam. It was very uncomfortable but not painful. As usual it was most painful on the right, also as usual there was nothing “abnormal” about my examination.

After this was the trans-vaginal ultrasound. Again uncomfortable, but not painful. He concluded the examination and left for me to dress. He then returned and ushered me once again into his office where we spoke for just over half hour.

The ultrasound revealed that my left ovary appeared normal in size but for whatever reason he was unable to see the infamous right ovary. Trust me he did look and probe and probe. I actually asked him if something was lost while the exam was being done. It just seemed like he was probing a bit too much. However, the ovary couldn’t be seen.

Food for thought that is. Not sure what there is inside that could be hiding the ovary. Time will tell.

The doctor suggested that I go on a course of treatment with GNRH agonists. These would put me in a state of menopause. If the pain decreased then we would know for sure that the extra pain that I’ve been experiencing is due to Endometriosis. If it worked then I would have to use it indefinitely……..in reality more than 10 years.

The good thing about the visit was that although an OBGYN, he didn’t discount my Pelvic Congestion Syndrome diagnosis. He accepted that it exists and rightfully stated that there is still a lot of unanswered questions as far as PCS diagnosis and treatment is concerned.

He also accepted that surgery would help in determining and hopefully fixing the problem or at least alleviating the pain. I decided on the surgery, mainly because I had done the hormonal treatment before and it had not changed anything.

We put the wheels in motion for the surgery. I did the blood tests, made the appointment to see the anesthetist and sent the quotation to the insurance company. Due to the doctor’s schedule I will not be scheduled until May. I don’t have the date as yet but its better than nothing. I see the doctor in two weeks.

This decision is bittersweet to me. I am happy that there is some progress and we are going ahead. I am afraid though, that this op may change nothing. I am afraid to hope……….yet I can’t give up hope. Its all I have sometimes.

I accept that things may remain the same. That is the risk that I take. I am going in for an Operative Laparoscopy. While I am under, the surgeon will determine what is to be done. If Endometriosis is seen or any indicators of it they will be excised. The adhesions that are suspected, if seen will also be dealt with (this is a catch 22, this op will also potentially lead to adhesions). I also go in with the understanding that depending on what is discovered the op may be converted to open surgery. I’ve no control over any of this.

Yet, I am at peace with my decision. Like all else before, God and I will get through this together. He promised, and I trust His promises explicitly. This will get better, this too shall pass.

 

 

 

 

 

 

 

 

 

 

Jealous of my illness! What now????

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Have you ever had anyone become jealous of your illnesses?

This is the most ridiculous thing to me. From a psychological standpoint I can see how it could happen or how it can be manifested but still its crazy.

When I started this blog, my intention was to do some research. I wanted to find out if there were other people out there who were having the same challenges as I was; especially as it relates to Pelvic Congestion Syndrome. I wanted to find out what others knew and had experienced. I did not anticipate it to be the therapeutic tool that it now is.

From time to time, I would invite people to view the blog and give me their comments. I tell them also to share it with their friends etc. so that the information can be disseminated. It’s not really about them getting information about me but more about raising awareness.

I did such with a group of acquaintances. Most of them read it and acted as though they had not. Don’t know why people do this but I suspect they are unsure of how to respond so choose not to. That’s ok.

Anyway, after I passed the link to this group one person responded immediately, that they were going to read it before bed. About two hours later I checked my messages and to my surprise there was a long rant. This acquaintance started out by saying that because they do not talk about their illnesses does not mean that they are not ill. This does not mean that they are ok. The person went on to explain about the last time they were seen by the group and how they were not well at that time. They went on to speak about being at home from work because of illness and basically ended the rant by saying they are ill too.

It came across as if the person was trying to prove that they were more ill than I was. I was absolutely taken aback. Truth is, I had known that the individual was ill but the extent or details were not known to me. This is a person who refused to accept any help from others even when they were visibly unwell. The group members would treat the individual like all others, no difference at all.

The entire group that read the rant was stunned. I was completely speechless. I wanted to empathize with the individual and acknowledge their challenges. However, all I got coming to me was “you think you are the only one who is ill? I have more problems than you” WOW! This was also the impression the others in the group got as well.

I saw this individual today and that is still the same vibe. All I can think is, how can someone be jealous of my illnesses? Really, is this a thing? Do people do this? I never put my illnesses on display or try to advertise that I am ill. Rather, I act for the most part just like everyone else. I could be in the worst possible pain and go along as if there’s none. I hide it more than I let it show. Not because I am ashamed but because I just want to have a normal life, a normal day, a normal event. I don’t want everything to revolve around me or to be impacted of impacting other negatively. So, I find it challenging to understand this individual’s behaviour.

Then the Psychologist steps in and acknowledges that the behaviour is not about me at all. Its about whatever insecurity or issue that individual is working through or needs to work through. For whatever reason they need to be the one in the spotlight, the one receiving the attention and/ or sympathy. As if there is not enough to go around.

I just never saw someone being jealous of my illnesses as something that I would ever have to deal with. I never even saw it happening. I leave it be though. I think dealing with the illnesses are enough stress. I just leave that individual and all like them to God.

The Storm Rages

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A few days back I wrote The Calm Before The Storm . In that post I spoke about what was going on in my body, what I was feeling and the gradual decline that I felt taking place.

The calm now has passed and the storm rages. Funny thing is I don’t believe its at full strength.

Over the past seven days things have just gotten worse and worse. I returned to work last week Monday, March 13 and was only able to remain at work for three days. Each day, by afternoon the pain was so intense I could do nothing but lie on my desk and wait until my transportation was ready. Upon arrival at home I went straight to bed and stayed there for a few hours, unable to do anything else.

I have been home since then. In varying degrees of pain.

On Sabbath I took the children to church and to participate in the Global Youth Day activity- where they go out into the community doing acts of kindness for others- and I was in trouble from the time I sat behind the wheel of the car. People may ask why I went although I was in pain but the truth is, I have to try. I have to do things with and for the children, my husband cannot do every single thing all of the time. He has been doing most of everything for a while now. Sometimes he needs a break.

So, I drove them to church and sat in the car propped up on cushions while they went out into the community.

Sidebar- its amazing the number of people who asked me if I was going with them and dropped remarks about it; made comments about my sitting in the car and not in church or just looked at me in a disapproving manner.None of these people asked how I was doing. Only the one or two who were responsible for the activity in which the children were involved inquired of my health. Just another example of how quick we are to judge others.

So, I sat in the car and waited for about 1 1/2 hours until they returned. As soon as they returned I left and returned home to bed. I stayed in bed for the remainder of the afternoon and evening. Hubby took them to the evening activity. Although this is my life, I still have to try to let the children do stuff.

Sunday was horrible. Along with the constant heaviness and dragging pain I also found I was having sharp blinding pain in the right ovary. It drove me to the codiene – which I had decided I was done with- I took both the tramadol and codiene in layers as advised by the doctor. Thankfully, the two together knocked the pain down to 7, which is still not a good level but reduces the probability of me having to go in for urgent care and IV meds. When I took the codiene I literally could not move from the bed but about an hour later I was able to at least go to the bathroom on my own and move from the bed onto the sofa and spend some time with the children.

That has been the story since then. I have been taking both meds and living between 6 and 7 on my pain scale. I have been mainly in bed or at least on the sofa laying down.

My appointment with the surgeon is still days away on March 31st. I am lucky to see him since his office was booked up to July when I took in my referral but still its a long way off.

For now I stay quiet, trusting that God will either calm this storm or calm me but either way I will be ok.

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