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.

 

Chronic Illness See-Saw…. 1 Step Forward….2 Steps Back

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Chronic Illness can be like a see saw. Just like the one in the photo above. Sometimes the thing that makes the difference between whether there is progression or regression can seem so small but yet so big at the same time.

Years ago in Barbados there was a Soca song that was written to describe the government………..I think it was…………most songs written are about some social issue.

Anyway, today as I was thinking about the effects of being ill, besides the image of the see-saw with the slightest thing tipping the balance, that song came back to my mind. Its called “Breakdown” by Serenader.

The chorus of the song goes:

One step forward

And two steps backward

And tremble

Hold ya belly and tremble

 

How apt.

I feel like I take one step forward and then two back. Just when I think I am improving something happens that pushes me back again. This thing that occurs is not always physical, it could be a simple as a comment made by someone.

I misplaced an item, truth be told I have no idea where it is. It is not something that I would not place in a secure location……this just adds to the frustration.

I asked the one other person who could possibly have it to check through her things just in case. Her response was quick and sharp………….you are supposed to have that not me! I just left off what came before that statement.

My immediate thought was ” I really have to explain to this woman again………..sigh!”

When you don’t experience brain fog it can be the most difficult thing to understand. When you do, it can be the most difficult thing to explain.

I searched and searched every possible place that it can be in my home and I have not found it. All the while I am thinking to myself ” gosh girl, you really losing it”. The “it” there being my mind and not the item.

I really felt horrible………….I really feel horrible but there is nothing I can do about it now.

You may ask if something so slight can have such a devastating impact? The answer is definitely yes.

Its such a delicate dance from day to day to be in good spirits even amidst the physical challenges. Sometimes staying in that space is exhausting all by itself. Little things can seem like failures or statements of inadequacy and inability. Little things can make you question whether you should even try to do or to be sometimes. The slightest thing can lead to regression.

So when you take one step forward, then two back…………what’s left to do? Hold ya belly and tremble? Or just breakdown?

I don’t have the answer. It can be any or all. However, for me…I just keep on stepping and trying to maintain this delicate balance.

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.

Embrace the flat/ or nearly flat…

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Yesterday I looked at Embrace the stretch… and that was mainly about the adjustment I had to make in the type of clothing I wore. I promised to look at the changes I made in my shoes.

Let me say that I love shoes. I guess in that way I am a typical woman. I think that any day can be fixed with a sexy pair of shoes…..I’m serious here. There were many days in the past where I was in a bad mood and I just put on a popping pair of shoes and my entire attitude changed. There is just something about how I feel in the shoe. Anyway, enough of that.

I am 5ft 10inches tall. So I really didn’t need to wear heels to begin with. I just loved them from the time I started wearing them around age 12. I would wear heels between 2 and 4 1/2 inches high. To work, church and to any occasion that was not completely casual.

I realized whenever I had a period- before the hysterectomy, or whenever I was in pain- after the hysterectomy, I couldn’t tolerate the heels. I always wore flats of shoes with 1 1/2 inch heels of lower. There was just something about the angle of the heel that made the pelvic pain worse. I think it increased the pressure somehow. I’m not sure.

As things got worse I found myself less and less able to wear the heels for any period of time. I would wear to work my heels and after about 1/2 hour take them off. The same would happen at church. I found that the pain was just too much to bear.

It came to the point about a year ago, around the same time I was adjusting my wardrobe, that I had to stop wearing them all together. Standing alone was painful if I had to do it for more that 20 minutes furthermore in heels.

I was depressed over the shoe situation. Really depressed. One day I took all my heels and looked them over. Those that I could give away I did and the others I threw out. There were numerous pairs of shoes. It was a sad day.

Since then I have built up a store of flats. Nice flats. I have a few shoes that are 1 1/2 inch high but most are flat. Even those with the small heel I can’t tolerate when in pain.

So, another lesson learned. Test and adjust a friend of mine always says.

I have come to accepting that I have to do what is best for me. I have come to accepting that flats look nice also. I have come to deciding that pain will try to define me and bring me down ………………but I won’t let it.

I am stronger and more flexible than I thought.

So what, my clothes and shoes are different………….but you know what? I am still here and that to me is victory!

The Space I’m in….

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I am slowly learning to accept and embrace my present space.

Many times someone would ask me a question and upon my response I would say “I’m just not in that space right now”. Meaning whatever it was I was not in a position to think about it or deal with it, my mind was elsewhere and I was not trying to shift it.

You know I have been talking for the past few weeks of the levels of pain and the challenges I have been having with just everyday stuff. Things like the ordinary cooking and sweeping and just trying to have a relatively tidy space.

I’ve been doing the physical back and forth to hospital, insurance company etc. in preparation for surgery. I’ve also been doing some reflection and just getting myself emotionally ready for the procedure and really going in blind as I will be.

As part of this have been turning down speaking engagements and presentations; trying to ensure that I am unencumbered and can just take the time to recover. However, over the past week I have had a few commitments to meet including a presentation to colleagues.

I have been “suffering” along with everything else with some serious brain fog. Just can’t remember anything. I prepared for the presentation as usual and although I really didn’t feel well I was off to do the presentation.

Sidebar: I have been on the other end of someone cancelling on me the last minute and I really try not to do that to others. Yes, they are aware that I have been increasingly ill recently, yes, I am sure someone else could have done the presentation even if I was still at the meeting but….I like to keep my commitments as much as humanly possible.

If I’m really honest as well I still want to be able to do something besides staying at home……….so I went to do the presentation that I had agreed to do two months ago.

I stood to do the presentation and I was trembling, not from fear, rather from the pain and fatigue.

I made it through the presentation but in my mind it was horrible. I was lost so many times and just filled in the spaces until I found my way again. I guess persons thought it was planned.

They complimented me and said it went very well. I decided to just accept what they said. I know though, it was far from reflective of my abilities and my preparation.

So what space am I in?

I’m in a space where I just have to accept that I can’t right now. Not even those things that I can usually do when in pain.

The brain fog on top of everything else is too much now. I haven’t given up……..I’m accepting that in this space some things are not possible.

I’m in a space where stress is not my friend and it makes no sense to worry about what I cannot do…..what I cannot change. I just have to work with it. It won’t last forever. This I know.

For the next week I will just continue to prepare for the surgery emotionally and psychologically.

As all else ………….this too shall pass. Until then I will embrace and accept the space……..

 

 

 

 

 

 

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 16

What is your favorite inspirational quote?

There are so many quotes that I absolutely love that I had difficulty choosing just one. So I chose three that surround the same theme but speak volumes to me:

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This first one reminds me that there is value in my tears. Many times I have wanted to cry and either out of fear of embarrassment or just thinking it was not an appropriate time I have not. This quote tells me that my tears are a language all their own and its ok to cry.

I have been able to use it to help others and myself in some really tough times. We can’t always enunciate everything but tears speak for us.

 

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This next one reminds me that the dawn is coming. Realistically just before dawn it is extremely dark, then the sun peeps out and all the darkness quickly dissipates. In my struggle I sometimes need to be reminded of this. Its dark now and I cannot see my way but dawn is just around the corner. Hold on!

 

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This final one is one of my favorite Bible verses. Weeping may endure for a night but joy comes in the morning. This is a simple verse but such deep meaning.

Sometimes the night seems to last forever. Sometimes the pain and challenges I face seem never ending. I feel as though I cannot get a break, not even a moment to catch my breath. I am reminded that although I may weep there is joy around the corner and the metaphor of the night is a strong one.We all know that nighttime always gives way to daylight.

Therefore, my weeping will come to an end, there is no doubt and there will be joy in the morning. This too is sure.

What quote/ saying has been an inspiration to you?