Lost friends………friends lost

55065-broken-friendship

 

My friend says her circle is so small that she talks to herself.

I think I am almost there. I know that as we grow and mature we have to examine the people we associate with and sometimes redefine the terms of relationships. Some friendships have to come to an end and others have  to be tested and adjusted. That however, is not what I mean.

So I have pelvic congestion syndrome and the past few weeks I’ve been battling with all the new stuff- cysts , adhesions etc. So I really have no time to socialize.

“Friends” get offended when I tell them I’m tired or I can’t talk right now. When I say no I will not be coming to that or I will not be there at one event or another they act like I don’t want to be around them.

Most days I am trying to make sure my children have something to eat and at least take one shower. All this between the sleeping because I am am always soooooooooooo tired.

Trying to still do my work and make sure that I am making a positive contribution to society. Again all this between sleeping because most of my time right now, once I am at home is spent sleeping or at least in bed.

So in some ways I don’t want to be around them- this is sad and liberating all at the same time- this is my reality. I don’t know for how many more months or years, but it is.

So I lost some “friends”. Some have left and others I have said “I just can’t right now” and they have split.

I’ve also gotten stronger. I’ve grown. I’ve gained some new friends. Many I have never even met. The sisterhood is strong.

friendship-heart

 

I know I am not alone. I don’t have to talk to myself. My circle is not small.

Advertisements

I’m not dead yet…..sheesh!

large

Why do people keep treating me like I am dead or dying? I’m definitely alive ….dying I have no idea.

I think its most times out of concern and a misguided desire to help in a “helpless” situation but its also frustrating.

On one hand I think..”can’t they see that I’m ill?” and on the other its “I’m ill but I’m not dead o.m.goodness”

So ok I’ve got Pelvic Congestion Syndrome and now hemorrhaging cysts and adhesions which look like endometriosis which was previously ruled out so yes I’m ill. The addition of the cysts and adhesions is extra pain on top of the pain I had before, yes that’s true.

I’m honest so I admit that I can be pretty miserable and unpredictable and “piggy” when the pain is at its worse like now. I try to stay away from people sometimes but that doesn’t always work.

Those closest to me see my pain, they see me struggling to stand, get in the car, get out the car, get off the bed. I was struggling just today to keep a neutral face in church while at the same time breathing through cramps like contractions. So yeah…I get it I’m not Hollywood’s next big thing! People see. Fine!

Does this mean that you get to decide what I can and can’t do? Do you get to say :Let’s not ask Lyn she is ill”or “don’t bother her with that she is ill”….? Some people, friends and family alike, out of the goodness of their heart try to divert responsibility from me. They mean well…..but I don’t like it.I don’t like people making decisions for me………straight.

I have found this aspect of dealing with illness difficult to maneuver. I want people to notice when I am in pain and react accordingly but the reaction I get is too far south of what I need. Truth is …everybody has a struggle….I know this. So as horrible as I deem mine, you have yours as well. I don’t want to seem ungrateful for the help people give but when decisions are taken away from me and they are about me it increases my feeling of helplessness……….I feel powerless.

Reality is I am battling a disease that wants to control my life, my every movement and just when I thought I had the slightest handle on it…….more complications. Making decisions for me sounds like I have already lost the battle.

I am not dead……….I am still alive…….ask me……….let me be the one to tell you no I can’t do that right now. As much as I hate to……..let me be the one to tell you in the middle of whatever it is I am doing that I cannot continue.

You know what? The best way to help me is to talk with me first. Ask me what I want. Let me tell you before you do………..not after the fact; because when I do that and you have already put things in place it seems ungrateful.

And another thing…….don’t tell other people “Lyn is sick so ask somebody else”…………………..You truly have no idea what you are doing to me with that.

So here’s the thing. Ask me. I will be honest. I will tell you yes today for next week but truth be told every day is moment by moment. Yesterday at work I was doing well and suddenly I was in excruciating pain. All I could do was drop what I was holding and keel over. Such is my life.

So ask me and let me say yes ………….but I will also tell you to get a backup, just in case. Don’t get them behind my back but be open about it. I will even work with them so we are on the same page. This is me right now………..I accept it.

My illness(s) do not define me. Stop walking on eggshells around me. stop making decisions for me. I can’t promise I will always be in a good mood because pain drains and frustrates me; but I will promise I will be honest.

As long as I am alive treat me like everybody else. Here in Barbados we have a saying “take the time from me” that means “follow my lead”. let me help you to help me.

Stop treating me like I am dead!

Mummy you never……….

one-of-your-hugs-would-be-nice-right-now

“The only physical thing you do is get up and walk from one place to another. You never play with me.”

I had no words to respond to this. My daughter wanted me to go outside and play with her…….catch or something……I said to her…”I can’t right now boo” and that was the response I got.

I have difficulty explaining the extent of the pain I felt. I wanted to cry but couldn’t. She was standing there with tears in her eyes and my crying would just make it worse.

I raised this child to express herself and be honest with me…..that’s all she was doing….trying to express her frustration and hurt over this situation that neither of us could control.

I sat with her and held her and listened as she spoke and as she cried. I was mummy but mummy needed someone to hold her and listen to her.

Today another piece of my heart died……..

Something else is wrong????

ovarian-cysts-s3-cysts-types

The level of pain had not shifted from 8-10 for 2 straight weeks. I was going crazy…..I concluded something else had to be wrong.

After my “near death” experience as it is labeled in my mind, I was at home because I really could not work. I’ve been doing the minimum for a while now. I accept that I will win no awards for the cleanest or tidiest house EVER in my life. My reality some days is to just make sure we have all eaten something and had at least one shower. That’s how it is living in pain. All the unimportant stuff just drifts away.

The doc said he was concerned that something else was going on because at least the levels would drop between cycle and ovulation a bit. I would get a break (use that word loosely, but it won’t stay at 10). So we decided on an ultrasound- abdomen and pelvis.

I went off to have the scan done, thinking …something will show up…..and it did. So apparently I have hemorrhaging, blood filled, cysts in both ovaries. Along with these I have adhesions on the right ovary.

Let’s take a side bar and talk about this right ovary for a moment.

So I had the hysterectomy and because I am so young my ovaries were left intact. My body reacts as though everything is still there, hormonal cycles etc have not changed. I can clearly feel ovulation and cycle time. Together those are pain times.

The right ovary has always been more painful. While I do get some relief on the left side there is ALWAYS pain on the right and in the ovary. Always…..So at the worse of the worse the pain on the right is down the leg and spread across the back….more intense than anything on the left.

The previous ultrasound before the one I did a few weeks ago the right ovary was 13 cm across while the left was 5 cm across. It has always been a problem so I was not surprised.

So back to these cysts and adhesions.

Obviously, both ovaries were huge….as ovaries go…and I need to do something about them.

I don’t know if the internal scan aggravated things but the pain since the scan has been in my face. I am aware of it with every step I take. I have come to loathe stair and inclines; I can stand for 15 minutes tops and sitting and lying down hurt. I am back to propping with pillows at night just to find a comfortable position and sitting using both the donut and back rest.

So now I am staring surgery #8 in the face……….I am not happy about this but it has to be done. Things have to be unstuck and cysts removed. Actually, I would like them to ignore the fact that I am not yet 40 and just remove the ovaries. Its too many years of problems with them…..endometriosis, estrogen dominance, PCS…its time they go I believe. That’s just my lay person take on it.

This new challenge along with all the pelvic congestion stuff- I still get tired as the day progresses, tummy still expands in afternoon, still have the heaviness and weight etc etc- has made life over the past few weeks not great. I haven’t given up but I’ve definitely slowed even more.

I would like to do the holidays before I subject my family to the hospital run and recovery-

I am hopeful I will get my wish. However, even before the type of surgery is determined I have to rule out cancer they say…………..

I did the tests………now I wait on results.

 

NSAIDs…..nearly the death of me

The pain was horrible and I didn’t want a rash.

For years upon years I had taken NSAIDs- Voltaren, Cataflam, Acteric, Vimovo etc. for pain and they work well. Along with the Tramadol I can knock the edge off the pain quickly. Then I got a rash every time I took one or the other and we realized that my relationship with them was on shaky ground.

So back to the story…

I’m in the doctor’s office and needing IV meds because I am going crazy, talking crazy, acting crazy, shouting at my family, not sleeping, not eating, not functioning because all I can see is the pain….nothing else but the pain.

Although I have a sensitivity to the NSAIDs I do on occasion take one tablet to get over a “hump” and no negative reaction or if any a slight rash and I am good.

So on the day in question I decide to get IV antihistamine, IV NSAID and then IV Tramadol….in that order. Its a risk I know but 10 days of blinding pain have made me crazy. So yes give me the meds.

About 5 minutes or so after the NSAID goes in I have a slight rash….very slight and I think “hey this is not too bad”. I then relax a bit and start to drift off to sleep.

My throat starts to itch and I think “something is irritating my throat” ….I start to cough and cough and cough and then eventually wretch….the IV is still connected and I am coughing uncontrollably, all the time wondering what is irritating my throat to this extent.

Only after the doctors comes and changes the IV do I realize my throat is sore…..and swollen…..swollen like tonsillitis where I can hardly swallow.

In that moment I think “Oh my….I was coughing because my throat was swelling closed”. So many other thoughts come to me then but chief of all is how in the midst of incredible pain I need help making decisions because the one I made just for relief could have cost me my life.

I looked at the doc and he looked at me and said….”we can’t do that again”. I know.

But what do I do next time? That level of pain I cannot bear…..what do I do when the meds I can take do not work.

I don’t know ……………..and that is a scary thought.

Too sick to think…..

I couldn’t think, it seemed as though my brain shut down. I wasn’t functioning on any level……I knew I was ill but really? Something else had to be wrong.

The past few weeks have been the worse I’ve had in a long time. Even the tablets that make me “junkie” weren’t working. I got desperate, went to doctor and said help I need something. Nothing was working……….even crying was too much energy. It still is….

All I’ve got in my head to write will just have to wait……….pain overwhelms and controls me……….too sick to think…..too frustrated to try……..too everything.

“The All Clear is Given- The Storm is Over”

beautiful-blue-sky-sun-shine-raises-clouds-images-for-desktop-iphone-free-download

 

The all clear is given,the storm is over. You may now leave your homes. Businesses will open today at ….a.m. and public transportation will resume from …..a.m.

After the passing of a hurricane, storm, depression or unspecified weather system those words are the most anticipated. Life can return to normal now. Everyone is safe and the storm is forgotten. Life is bliss.

My question is when will I hear that? Rather when will I hear it and it be actually true?

I noticed early on in my teens that my pain levels were high and maybe something was wrong. I sought gynecological help and was initially given birth control pills (innocent as I was at that time I just knew them as cyclical hormones).

I took them, changing brand after brand until I found the one brand that my body and system did not reject. All Clear!!!!

Nope!

After a while it made no difference and we started to search again for the cure to a yet undefined/ unnamed  problem.

Laparoscopy #1 “revealed” endometriosis which I later learnt couldn’t really be seen like that more the effects of it. So I had a diagnosis. Now it could be managed. I could live my life knowing I may have all these side effects but I would manage. All Clear!!!

Nope!

The pain still increased. Laparoscopy #2 revealed one totally blocked and one partially blocked tube. Definitely endo right? So “you will not be able to have children and there’s nothing to do about this pain but have a hysterectomy”. So I knew what I had to do. I knew the path of my life. I could manage. All Clear!!!

Nope!

I went on to have two beautiful children (those I would never have) and a few years after the second one had the hysterectomy. So after the recuperation I was finally out of pain, no more issues. All Clear!!!

Nope!

6 months later. Pain unspeakable. so what now????

“There is no medical reason why you should have any more pain”. I listened but I heard “its all in you head you need a psychiatrist”. So what to do now? I don’t know. I keep doing what I am told and nothing is working. Maybe its all in my head. But I knew it wasn’t.

Pain meds for years and here comes along my present doctor who starts to search. While trying to manage the present pain. Trying and changing meds and combinations of meds. Then finally the diagnosis: Pelvic Congestion Syndrome. Along with the diagnosis comes a treatment that’s revolutionary and done by an Interventional Radiologist. Could it be that easy. All Clear!!!

Nope!

Two procedures later and the all clear has not been given. The pain is real!

The storm continues!