Mummy you never……….

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“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……..

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Something else is wrong????

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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”

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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!

 

Storm Warning

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People rush like crazy to the supermarket to stock up on canned foods, batteries, torches, water. Others jump in their cars and drive to the service station to fill their tanks with gas. A storm warning has been announced, people mobilize to do all the things they should’ve before hurricane season started, they rush to secure homes and life.Then we all sit and wait.

The rain begins to fall, the sky grows dark, there’s an eerie silence. The island is locked down and people wait in anticipation of the worst but hope for the best. Whatever comes, rain, thunder, lightning, flooding, fallen trees, damaged property, we will survive; we are prepared and we have support.

What do we do when the storm is not literal? What do we do when there is no warning? How do we prepare in that situation? What if there’s no support?

Illness is like that. A storm without warning, clear blue skies like in the picture above and then clouds just move in.  Even if we could prepare , no one knows what we are preparing for. Even if there’s support, we are all flying blind.

Just as with the literal storm, even if we prepare as best we could there’s no way of knowing what would happen. We can never know if the situation would turn out worse than we anticipated.

After, years of medical procedures, tests and medications; I thought I was prepared for the storm. After all I had been through some before. I had survived so whatever came I would just handle as before.

I’ve never been so wrong! Nothing could have prepared me for this life. Nothing I read, nothing the doctor said; prepared me for this reality.

 

Junkie????

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I stumbled out of the car, my hands trembling, sweating profusely, up to the pharmacy door. I opened the door with my last ounce of energy and walked up to the counter. As his eyes met mine the pharmacist said “Lyn you look horrible, all the pain meds gone?”

In my head I was screaming “give me them, give me them, I need them NOW!” Of course in reality I said “yes” and handed over the prescription. I asked for the gravol first, opened the refrigerator and took out a bottled water, popped the cap and downed that one tablet as he prepared the Tramadol. 10 minutes later I swallowed the Tramadol and prayed it would kick in quickly. Another 20 minutes and I felt the edge get knocked off the pain and I sighed…..thank God for pain meds!

Relating this experience to my doctor he said to me :that’s drug addict behviour”; in that moment I thought “its official you are now a junkie”.

Is there a categorizing system for junkies? Are you a particular type of junkie when you need the drug for pain relief as opposed to achieve a high? I wonder. I take this medication because I have to that’s the only reason. If I can stay in bed and not have to get out for the entire day I will opt to stay in and not take the medication. Realistically though, that is not an option on most days. I don’t like the way I feel when I am taking the Tramadol but I hate the pain even more.

I used to be able to take NSAIDs (non-steroidal anti-inflammatory drugs) like Voltaren. Cataflam, Acteric, Vimovo and Baralgin. Layering the NSAID with the Tramadol worked and worked well for me. I went skipping through the day. Then I developed an allergy to that brand of meds so here I am. All I have left is Tramadol.

So am I a junkie? Or am I just a prescription medication for pain management dependent individual?

When I hear the word junkie do I picture myself or well dressed middle class working professionals? Most times we think of persons using illegal drugs and who look strung out and unkempt. I am definitely not like that; but on those bad days I need the drug like I need to breathe. Maybe its a thin line I’m walking; maybe another topic for therapy; maybe I don’t know; maybe I don’t care.

This I know, I am doing the best I can with a messed up situation. My best right now requires Tramadol; I wish it didn’t but it does. That’s the reality. Such is my life.

So if you look at me and call me a junkie that’s OK, you are entitled to your opinion. I’m just a girl doing all I can to survive……one day at a time.