Counting the Cost of Illness

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I’m not sure if its the time of year and that my birthday is approaching OR the fact that I’ve been ill over the past few weeks in one way or another OR the seemingly unrelated conversations I’ve had during those weeks OR just wanting to do certain things but not being able to………….just feeling a bit morose right now 😦

As happens, in the midst of my pain and misery all the possible horrible things about my life come to mind. You would think that I should be looking at the bright linings on the clouds or something; that never happens by the way. It seems that as soon as I get a bit down I just ruminate on everything else that will push me further.

Staying positive is hard work!

I guess the first aspect of me counting the cost is financial. Its one thing for me to think that I can’t afford an item/ trip/ experience because I simply can’t and another to know that things would be different- at least from my present viewpoint- if I weren’t ill.

Truth is the cost of living in Barbados is pretty high. I remember when we could easily feed our family of 5 for an entire month on $600. Only returning to purchase vegetables and fruit on a weekly basis. That’s laughable now; yes the children are older and eating more but food really shouldn’t be costing $1200 or more a month. Yet, it does.

This of course is compounded by my gluten intolerance and fructose malabsorption; which both require that I have specialty items that are more pricey than the average.

Outside the food though, I feel like being ill has just drained my resources and as soon as I start to see my way back to saving and working on debt, up something else comes. I started to add my bills for surgery alone over the past 6 years and stopped when I passed $50,000. Yes the health insurance paid some of it but surgery year after year will deplete savings and incur debt. That total does not include bloodwork, ultrasounds, x-rays, doctor’s visits and meds which are regularly scheduled parts of my routine. My general medicine on a monthly basis costs around $100. In actuality that’s $500 since I only pay 20% of the cost and the health insurance covers the 80%……for most things anyway. Still grateful for that…yes.

A family member was asking last week if I had a retirement savings plan …….my response was “right now I am trying to live, retirement is a ways off and I may never get there”. Truth is, its on my list of things to do. However, with my total health care costs, health insurance, life insurance, my other debt and trying to save for college for the children…………there’s nothing left at the moment for it. In that moment I just went……if only.

So that’s financial costs. I am forever broke…………..long and short of it all.

Outside that, the cost to my family is constantly on my mind. I went to pick up my son from club two Saturday nights ago and he asked as soon as he saw me if he could attend the “social”. I just stared at him.

All his friends were looking and waiting on my answer. Since, they were all going and I could only tell him that I had to go home. This he knew. He knew I had to get home to take my meds and that I was out longer than usual and would crash as soon as I got into the house. Yet, he asked.

My son knows that I am ill and I cannot be out at night because I am just too tired and weak and its not safe. He knows that I truly am not able and his father has to do so much more because of it. Yet, the 11 year old wanted to be able to enjoy a night with his friends. So, I had to be the one to say no again….and again.

His teacher offered to take him and bring him home after ……………I was grateful. However, on the way home his sister was very quiet in the car. I asked her what was wrong and she said she wanted to go to the social also. Well, she’s 9 and not in his club or group …………..and honestly is someone offers to help with one child I won’t ask them to do the same with the other. I looked at her and my heart hurt. Then she said ” mummy I’m not angry, I’m just sad that you are sick and I can’t go”. I told her “I’m sad too”.

That scenario has played out time and again in my home. Event after event that either I cannot afford to pay for so they can attend because I can’t risk spending out of budget and then need the funds or I can’t take them to because its at night or I am just not well enough.

Families of the chronically ill have a hard time…………..especially children. I think its teaching them many valuable lessons but not all lessons that they need to have at this stage in their lives.

That sounds quite profound ………………….doesn’t stop me from crying…………sometimes daily.

In terms of counting the cost of my illnesses, the last major thing I fear losing is my sanity.

I know illness and especially chronic illness is a major risk factor to mental illness and depression. Sometimes I do feel like I am losing it. I do feel like I cannot do it anymore………..its too difficult. Sometimes, I do feel like I am just fighting a losing battle.

Some days are hard.

Some days I cannot even articulate how difficult it is to just push through the day.

A friend told me yesterday that “love goes a long way”. I know this to be true.

I believe that its the prayers of my friends and loved ones that keep me going. I know that many people don’t believe as I do but I know that there is nothing earthly that is responsible for the fact that I am still here and still in my right mind. In my human strength alone I would not be here today. It can only be God.

So, today I am morose. reflective, down, weary, “depressed” and many other words. Thing is I’ve been here before. The one lesson I have learned through all this is “this too shall pass”.

I will have better days and worse days and good days and horrible days but I just have to hold on. Hold on to those I love…………..hold on to love. There are many of us all across the world fighting for ourselves and fighting for each other. One day it will make a difference.

Until then, I can record this all here……………………..so I can return and read it the next time I need to count the cost.

 

 

 

 

 

 

 

 

 

 

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Accept She’s Gone: Give up on hope…

thinking-face_1f914I’ve written many times before about creating a new self and coming to a place of acceptance about my illnesses and the situation created as a result. Today I feel like a fraud. This is because once again I am at the stage of having to accept my limitations.

I honestly thought I had done this before. I sat and talked with myself and accepted that I am just not the same person anymore. Then I got a hold of a little hope and I forgot.

We say once there’s life there’s hope and once there’s hope we can live but hope can be a dangerous emotion at times. You see its ok when the pain is horrible and it is clear that nothing can be done at the moment. Then when I meet a new doctor who offers a different perspective, or I use a new medication and it offers a higher level of pain relief…..I begin to hope.

I begin to believe that things will get better…………things are better. To be in the least pain you have been in for months is cause for hope. To have a new procedure bring relief is hope. To find medication that works amazingly at first is hope. Then something happens that dashes it all.

When the pain intensifies, or my body builds tolerance for the medication and I feel the pain more or when a few days/ weeks/ months after the procedure I am back where I started; all my hope disappears.

I know the social butterfly does not exist anymore- she’s gone. I know super mommy and super wife is gone. I know that I am just not able to do certain things anymore but in the back of my mind there is still that hope which pushes me to go on.

So the day when I can cook a few courses of a meal and bake gluten free and regular cake my hope is high. When I can stay out a little longer or do a bit more at work I have that hope in the  back of my mind that I will be able to do it again tomorrow or next week. Then the day comes and I am stuck in bed in pain and its all gone.

I’m not the only one who has their hope dashed time and again. My husband and children are also impacted. Although, they live with me in this state they hold on to hope as if its a life boat and they are drowning. They see improvements and increased energy/ ability to perform a function and start to treat me as if I am well. Their requests and desires come to reflect that belief. I am then left to remind them that I am not well…….just as much as I remind them I have to remind myself as well.

So the deal is this: I am ill. I have no energy most days and I fight to push through. The deal is I have controlled substances to take in order to function.  The deal is I will never be that girl again and I have to accept that. The deal is I may have to set more realistic goals for myself that I can actually achieve,

But I refuse to let her go……….I refuse to give up hope; so what do I do? I’m getting tired of the balance beam that I’m on. I feel like I am falling …………on one side is utter despair and the other is hope. Where does being realistic stop and letting go of hope begin? Idk.

More and more I realize that this chronic illness/ pain management dance is an everyday struggle. My positive disposition yesterday is not enough to last for today. Yesterday’s acceptance and working within the confines of the illness are not enough to cover today when I want to run and can only walk.

In theory I accept that she is gone………….in reality I miss her………..I mourn her.

Update….Helped one Condition….Hurt the other :(

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Life has been really interesting since my last post. I’ve been somewhat stressed to the point where I wasn’t letting anyone in. I felt as if I was losing grasp on everything and chose to take some time to regroup.

In the midst of this time I had the most unnerving experience. The pic above is my left foot. As you can see the veins are all popping. Truth be told this is minimal to what actually took place.

I could see all my veins right up my calves, up my legs and across my pelvis. When I saw this happening I knew that those inside my pelvis must be huge! That’s not all, I was in the most incredible pain I have had since having surgery.

Apparently, dealing with the Endometriosis has caused me some issues with the Pelvic Congestion Syndrome ;(

The adhesions which has everything in my pelvis stuck together and were causing me intense pain were also holding the veins in my pelvis (like bands) and constricting them/ restricting the amount of blood that could flow into them. Removing the adhesions has helped to reduce the sharp everyday pain that I was experiencing but has also freed the veins and they now exist without constriction.

Therefore, the veins can now have the maximum amount of blood pooled inside- thanks to the faulty valves…….

Doc says I have to return to the Daflon- meds for  venous conditions; in order to work on the veins all together and reduce the varicosities.  I most likely will have to wear prescription grade compression stockings everyday to work as well. Doc says the maternity ones that will come right up to just below my breasts 😦

So it truly is like a Chronic Illness See-Saw…. 1 Step Forward….2 Steps Back. I had an intervention to help in one area but because that area was the focus and not all two, that intervention has created an issue with the second area. We worked on the Endometriosis and now the Pelvic Congestion Syndrome is in full swing.

What now? More research- I’ve been doing quite a bit and will share in my next post; more treatment; more medication; more trial and error?

I guess this is what happens when we treat one when there are two to be considered.

Thankfully, my time of reflection has placed me in a pretty good frame of mind. I’m in a good space right now. Hopefully, it will last.

Truth is, it could be worse……….so much worse.

I remain thankful for each blessing amid this storm.

 

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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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!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

30 Day Chronic Illness Challenge- Day 22

0b25d42f697a41f0ad8f44f6e312d328How do you think you have been treated by the medical system? Explain.

My first thought when looking at this question was “oh boy…”

For years I went from doctor to doctor who basically told me that my pain was all in my head. I was attention seeking. I was making it all up. There was no medical basis for what I was saying. The tests came back negative.

That was the language as opposed to “I don’t know what is wrong” or “I have done all that I can for you”.

This language , let me qualify, was not in reference to Endometriosis. I was diagnosed with that at 16. My symptoms and then the diagnostic laparoscopy proved that. The “you really are a crazy woman” came after.

I was going along with the Endometriosis diagnosis and doing all the treatments, hormonal and surgical to no avail. I had the miracle babies, I had the hysterectomy and I was still in pain. The OBGYN basically said after that there was no reason for my pain.

It was quite frustrating.

However, the one medical professional who believed me from the get go is my GP. He never made me think that I was crazy or it was all in my head. He took me at my word and started to search with me. He selected conferences specific to my symptoms to attend and contacted colleagues around the world to get feedback and information. For that I am grateful.

It was through his work that the diagnosis of Pelvic Congestion Syndrome came. Then the referral and embolizations. The first of which gave me 6 blissful, pain free months and the second which proved that I was developing secondary re fluxes- veins that became incompetent after those which were leaky had been fixed.  This is a major part of my present issues – this tendency to develop new leaks. This is the reason embolization has not been effective in my case on a long term basis.

I still get the disbelief even now though. This is mainly from OBGYNs who easily acknowledge the Endometriosis but discount the Pelvic Congestion Syndrome as non-existent or an “exclusion diagnosis”; all this although I have the proof of the 6 months and photos of the leaking veins.

So the medical system has not been the most kind to me. In many ways the doctors still act as though I am lying or it cannot be as bad as I report. After all I smile and go about my business. I say I am in pain and am still able to get through examinations without breaking down. Its a struggle.

I think that some doctors are good at what they do but they should strive to be great. They look at me and see a disease. They need to see a person. Maybe then they will start to treat me and all the others like me differently.

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30 Day Chronic Illness Challenge- Catching Up- Days 18-20

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18. Do you think you have become a better person through illness? Explain.

Yes, I am definitely a better person as a result of being ill. I was always a generally empathetic person and sought to consider the feelings of others in everything I did; this is probably what guided me to my profession.

However, I have found that illness has given me another level of empathy, a deeper level; one that can only be reached through this type of experience. This has made me a better person, it has also made me a better Psychologist.

'I see a bright future, a transformation: Beauty, wings, elegance...'

19. How do you feel about the future?

I am very optimistic. If I am honest I would admit that sometimes I get down to the point where I can only see directly ahead, the next minute or hour.However, I also see God just setting me up for greater things.

Many plans and dreams that I have had and held for years, in some instances even doubted myself; I see falling into place. God has opened opportunities and caused me to meet people and make associations that are directly needed to fulfill these same dreams. Avenues that I didn’t even know existed have opened before me.

It gives me hope. My future may not be totally pain free or disease free; but I have a future…..and it is bright!

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20. Have you met anyone with the same illness? Did it help?

I have met numerous women with Endometriosis but I have not met anyone in person who has Pelvic Congestion Syndrome. I guess this is because it is relatively new and un-researched. I think PCS is also misdiagnosed and under- diagnosed; while Endometriosis, although enigmatic is a more common diagnosis and to some extent better understood.

Meeting these ladies whether in person or online has been encouraging to me. I felt as if I was alone for such a long time. Although it hurts to hear their stories and I cry with them it is comforting to know that others are fighting with me.