Elephant in the room? Introduce it!

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You know how I spoke about Update….Helped one Condition….Hurt the other 😦 and the issues i am not having with Pelvic Congestion Syndrome? Well today I had an experience which told me I have not been doing too well introducing the elephant.

I actually said to my colleagues “ignore me”.

I am doing training in a CVQ- Caribbean Vocational Qualification. Elsewhere in the world they’re termed NVQ- National Vocational Qualification or some variation of that. This training requires that I sit for 4 hours straight with just one 15 minute break about halfway through. Problems!

I cannot really sit for 45-60 minutes without having to change position, stand, walk around a bit. Well actually I can but my legs would have to be elevated or I would have to at least be wearing the compression stockings/ leggings.

Did I mention that one pair of those cost over $100. Anyway, I did order a few but they haven’t arrived as yet. Since I am 5′ 10″, those available here were just too short so I am waiting on them to arrive.

In this conference room setting with a group of people I have just met for the most part, its sit at the table and write/ listen. There’s no foot rest or extra chair for elevation like in my office……even if there were….this is a new group.

So, I intentionally sat at the back of the room so that I would be able to at least stand every 40 minutes or so without having to walk the length of the room and disturb others.

Well, that didn’t work. Every-time I stood, everything stopped and all eyes were on me. “Do you have a question/ comment?” “Are you ok?” The questions came.

In my head I was thinking, what can I actually say to these people? I said “just ignore me”; but is that what I want? Do I want them to know why I am standing? Then I thought I have to introduce the elephant next training day.

Question is though, what parts of the elephant? How much of the elephant?

This is the dilemma many of us with chronic pain face. We don’t want to stand out, we would rather just blend in most of the time. However, that is hardly possible the majority of the time. Then we don’t want to be the focus of attention and be fielding questions and comments but how can we avoid it.

How do we give enough information for understanding but not too much to create “oh how sad/ wow so sorry/ oh no”. Where is the balance found?

I have no idea, I just know the elephant is in the room and it makes no sense acting as though it is not. I will just have to find a way to introduce 2 chronic pain conditions and still be a part of the group who is treated like everyone else and viewed like everyone else.

I’ve got a few days to figure it out….sigh!

 

Post – Surgery Update

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I arrived at the hospital just after 10:00 a.m. and was immediately processed in by the staff nurse on duty at the time. She informed that the doctor was already in theatre with another patient and that she had been looking for me earlier.

We went through the usual review of all documents and anaesthetic checks and then I changed into a gown, anti embolism stockings, booties and head cap; got the IV attached along with the blood pressure cuff and waited until I was to be escorted into the theatre.

I walked into the operating room and proceeded to lie down and prepare for all that was to come.  The last thing I remember was the Anaesthetist saying that they were just about ready to proceed because I was going under and the oxygen mask being put over my nose and mouth.

The next memory after that is being pulled from the most exciting dream by people calling my name and becoming aware of the most intense pain and feeling as though I was about to freeze.

Sidebar: This is always my experience coming out of anaesthesia. I am always dreaming and not immediately aware of being in hospital and I am always cold; cold till it hurts.

I tried to talk but my teeth were shattering and my legs hurt like I could not remember them ever hurting before. The nurses covered me with the electric blanket to get me warm quickly and the doctor came over to examine my legs (they had told me to bend them and I could not get it done, I tried but was unable to move them).

Looking back, my feet (legs) were placed in stirrups for the entire procedure, which was around two hours. Not your ordinary GYNAE office type. these ones held from my knees down in a special boot to keep circulation going. I was positioned as in the photo….my boots were a bit longer though.
933267_dMy thighs were rebelling from the pressure placed on them for such an extended period. After another 15 minutes or so I was able to bend my knees and move my legs however I chose. Despite all this progress the pain was not easing enough for me to rest and I was just too groggy to be discharged anytime soon. I ended up being admitted to the ward and spending the night in hospital. I didn’t sleep much since I was monitored- vitals taken etc. and medication given every few hours or so.

The Results??

Well the doctor’s words ” we didn’t find much in the way of Endometriosis”. No surprise for me there. That should be he didn’t find much that he can identify as Endometriosis. What he definitively identified was excised. However, he did say they found numerous “unknown” deposits throughout my pelvis. Those were also “cleaned up” but most sent to pathology for examination.

Secondly, my ovaries were left intact…yeah (NOT)…sigh….because all the cysts had disappeared and they looked fine.

My left ovary was stuck to the bowel, which was then adhered to the pelvic wall. There were also numerous other spots of adhesive tissue/ bands which were cut and the scar tissue removed.

In effect, there was more to be done than I anticipated.

Progress?????

Well its been just about 7 days and I am slowly improving. The 5 incisions are healing but they still hurt. I am able to walk around the house but tire quickly. I have been mainly just resting and taking my pain meds.

It will take a few beats for me to really gauge the success of the procedure and improvements. However, I can say that the separation of the ovary, bowel and pelvic wall has been immediately noted on my end. Whereas, before the op I would have  a BM and feel the stretching and most times have cramping and have to lie down for a bit; since the op I have not had that experience…..no stretching……..no cramping….no pain. So, that’s one positive!

Beyond that, I am hopeful and I do believe that overall things will be better……….especially with the pain.

I have no delusions. Whether Endometriosis of Pelvic Congestion Syndrome; both are chronic, progressive and degenerative. I take whatever I get from the procedure and move on. Continuing to fight, advocate, research, learn and grow. I know that whatever happens God’s got this …………..and that’s good enough for me.

My Chronic Pain Labor Lessons: When you can no longer push.

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22 hours before I gave birth to my daughter I was sitting in my doctor’s office, it was just the weekly check-up. I was 39 weeks and feeling horrible. The doctor did an in office induction. He told me to go home and rest because I would not make it through the night, the baby would be born by morning.

I went home, spent most of the day in bed and as he said went into labor close to midnight. Off to the hospital I went.

As the contractions grew closer, the doctor arrived and we got ready for the delivery. let me backtrack a bit and say I was exhausted. It had been a rough day. My body was worn even before the labor began. I had an IV and oxygen and was just trying to have a living baby and stay alive myself.

In the room were the doctor, midwife, my husband and me. People were asking me questions and I could not answer:

Lesson 1: When in pain its difficult to think

This has been my experience over the past few weeks as my pain has continued. I have an increasing amount of brain fog. To the point where I am making a statement and midway I completely forget what I was saying. I forget people’s names; things that were so simple and almost second nature to me have become difficult in those moments.

Back when I was in labor, it was Ok. It was accepted that I was in too much pain to process what I was being asked. Now people just call me forgetful or question my brain function.

I wonder why?

As the labor progressed, I started to whine. really whine. I had come to the point where I thought no other person understood what I was feeling and I didn’t have much energy left.

Lesson 2: When you talk about your pain……….people think you are exaggerating.

I was telling everyone how I couldn’t take the pain any longer. The responses I got while in labor were meant to encourage but came across as being ignored. I was reminded that I had done it before and that my body knew what to do and not much  more to go etc.

I have the same experience now. Only thing nobody really bothers to encourage. Let me say here that I do have my small, faithful group of cheerleaders; they are exempt from the “nobody”.

Generally though, people think I am exaggerating when I speak about pain. I’ve gotten so many “it can’t be that bad” and “you’re making it seem worse than it is” comments that I actually stopped talking about it. I’ve gone silent…for the most part.

Although labor was painful, it was better because at least people believed the pain existed…….even if it was minimized in order to provide encouragement.

 

As I stated earlier, I had oxygen and an IV during labor and I was becoming exhausted. After the doctor checked and said I was ….cm dilated I told him that I couldn’t do it anymore. I needed help.

Lesson 3: There comes a point when we can no longer push through…we need to ask for help and keep asking until someone listens.

The doctor did two things at that point. He got me some pain meds and asked me to pull myself up into a sitting position using the bar over my head. the meds helped with the pain and sitting employed gravity to help the labor progress.

I came to the point this year where I could no longer push. See, I am accustomed to just pushing through the pain. Doing what I have to do regardless, just getting it done. I realized that all that I was accustomed to doing and using were proving ineffective. I needed another level of intervention.

 

Again, people understand and accept this with labor. In my case they just behave as though I am making the choice to stop doing what I am accustomed and using an illness as the excuse……….instead of just saying I don’t want to do it.

Labor is known to or known of by everyone. I guess that makes it easy to empathize and sympathize. My illnesses being unknown and misunderstood must automatically place me in the category of someone who is pretending or lying.

 

Shortly after the sitting and meds I was ready to push. One push and she came screaming into the world.

Final lesson: Regardless of the journey, bruises and bumps along the way….I can make it through.

By the time my daughter was born, I was spent, physically, emotionally and psychologically. I was hungry, sweaty, bumped and bruised but I made it.

I take comfort in that. I know that chronic illness is not like labor. Labor is an event. It passes and then is no more. I am not going to have these illnesses one moment and then a few hours later no longer have them.

However, there will be acute pain episodes and sometimes weeks or months where the pain flares beyond the norm that can be likened to labor.

From January to now I’ve been in labor. The contractions are almost back to back now and I know it will soon be time to push. Through all the challenges with brain fog, talking about pain and being ignored and having to ask for help I know I will make it.

I will still be ill. However, this period shall pass. I will have the scars and memories but I will be ok.

After that, whenever next my labor experience begins again…..I will remember the lessons I learned to get me from one point to another.

Unrelenting pain :(

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These past few weeks have been rough, extremely so. I cried more than I have cried for years. I cried from frustration, from depression, from “isolation” (I wasn’t isolated but felt so), I just cried.

As you know I was at home from work for a while because the pain was just too much for me to cope with. It was not only physical, it became emotional and psychological. That combination threatened to undo me. I felt as though I was just unraveling and was powerless to do anything about it.

Reality is that emotional turmoil and psychological stress lead to decreased levels of coping. In my mind I just hit rock bottom. Truly, hit it. I had many days here at home alone in bed to consider all that was taking place in my body and mind. It exhausted me to the point where I just slept for hours on end. I needed to sleep, so I did.

I wish I could say that the pain has subsided or eased up any……it hasn’t.

I went back to work on Monday, not because I am any better, rather I felt I needed to go. This week is the last week of school here and I wanted to terminate with my interns and close off the office for the holiday.

Although happy to see me, my office personnel were and are concerned about my pain levels. I have been “surviving” on the maximum dosage of pain meds throughout the day. Just today, I had to put my feet up and lean back in order to stay at work. When the pain increased it jumped from 6 to 8 and began to threaten 9.

I came home after work, ate a little, took some meds and went to bed. I stayed in bed for 4 hours before I was actually able to get out. I tried before and it didn’t work. The pain was just piercing my body. As usual it was mainly concentrated in the right ovary but extended across my lower back and down the right leg. On two occasions I attempted to get up from the bed but the pain just pushed me back down. Its unrelenting.

So, from January to now my spiral continues. Yes there are moments where I can do stuff; I was able to bake the children some cake for the children on two occasions. They were really happy about that. I still cook, although I do most of it sitting instead of standing like before. For the most part though, my bed and couch have become my best friends. I loved them before but we are almost inseparable now.

How do you answer the question when you forgot what normal feels like? You don’t. At least not in a way that makes any sense to those who ask it. I’ve also learned that normal doesn’t exist, not really. It is what I make it. Right now, normal is more hours in bed than out, that’s ok. Normal evolves as things change.

I continue to pray and trust that my normal will one day be free of pain……….and if that’s not an option……….then that the pain will be manageable. I refuse to let this pain define me………I cry….. but then I move on.

 

 

 

 

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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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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30 Day Chronic Illness Challenge- Day 21

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What networks or websites have you used for support or information about your illness?

I haven’t used many networks or websites in the past. The main one I frequented in the past was http://www.hystersisters.com.  

I also frequented https://endometriosis.supportgroups.com. I found that there was lots of information and help regarding Endometriosis.

I have not been as successful with PCS. I generally perused websites that came up when I googled PCS. Most times I got something unclear like

“Pelvic congestion syndrome. Some doctors believe enlarged, varicose-type veins around your uterus and ovaries may result in pelvic pain. However, other doctors are much less certain that pelvic congestion syndrome is a cause of pelvic pain because most women with enlarged veins in the pelvis have no associated pain.”

Retrieved March 21, 2017 from http://www.mayoclinic.org/diseases-conditions/chronic-pelvic-pain/symptoms-causes/dxc-20208136

These sites and statements in essence made me quite doubtful since the medical fraternity itself was in doubt about PCS.

Recently I have been perusing  https://themighty.com. and just looking around for other networks.