Post-Op Day 6…

I woke very early to the worst pain I have ever felt in my life. I now have a new number 10 score for pain. Low and deep in the left lower abdomen. Felt hot and sharp as if I were being gutted that very moment. Tears flew out of my eyes uncontrollably. I found myself begging god to ease the pain. I spent a solid 20 minutes like this, which felt like an entire day. I had been getting worse every day instead of better. Everything I read said how you MUST take your pain medications on schedule and you MUST rest.

For the first four days after surgery all I really did was sleep, by the time I woke between sleeping spells to take medication, I walked around too much or I would grab up my iPad and things I needed and took them outside with me. No joke when they say DO NOT LIFT ANYTHING!

I did not want to ever feel that amount of fresh and horrific pain again in my life, so I sat down and made a plan. I set up alarms to go off every 4 hours for me to take my pain meds. To start it all off, I wrapped my belly snug in the binder I received at the hospital and I took my morning medications plus a double dose of pain medication and some ibuprofen with Baclofen and Ativan. In one hour I was unable to stay awake any longer, so I climbed slowly back in bed. I slept about 2 1/2 hours. I slowly got up and went to the bathroom, as I have to pee every time I wake. Peeing hurts. All I can say is relax as much as possible and lean forward and it tends to come out easier. I then spent the half hour until my next dose of meds checking my email, sitting and movements to a minimum. Then the alarm went off to take my meds, which I did and in under an hour, I was ready to go back to sleep. I did this the entire day and by mid afternoon I was feeling better with less unbearable pain. My friend stopped by, but I was only able to make it one hour awake so it was a short visit.

You have to sleep in order for your body to heal. When I had my gallbladder out it was such a breeze and I never even felt super tired, but it guess there is way more anesthesia used for a hysterectomy and way more areas to heal. I have set an alarm to go off at 3am so I can take a dose of pain meds in the night and go use the bathroom on schedule instead of waiting to be woke up by the horrid pain. I am going to stick to this plan this entire week. I have already seen a reduction in the intensity of the pain so that’s a huge plus. I figure after a couple of days I will get in front of the pain and things will begin to turn around.

They did not tell me anything at the hospital. Everything I did know, was from all the reading I did prior to my surgery. The web site called “HysterSisters.com” is fabulous! I don’t care how you feel, stay in bed and only get up to use the bathroom the first two weeks! You will save yourself from pain that is by far the worst pain known to man. Fortunately, I have been sleeping easily. It is a good thing I can sleep, because I am unable to sit propped up in bed to watch TV, it causes a boat load of pain.

I will keep you updated on all of this. No new pictures tonight, because it looks exactly the same. I did discover that the entire front of my coochy is also black and purple and swollen. Every time I stand up I feel like I am tearing open my stomach.

I am ready for bed, meds taken, teeth brushed, face washed. Now I need to change my nightgown and put the binder back on in hopes it will help with the middle of the night bathroom usage. I had been taking it off every night and putting it back on in the morning. I still have not had a BM, so I will most likely be doing a fleet enema tomorrow sometime………….

Post Surgery, Radical Hysterectomy with both ovaries and tubes removed…

I had a Radical Hysterectomy on Monday June 30th. I don’t even remember going into the OR, I just remember saying good bye to my mom then waking up in recovery. I was in horrendous pain. They refused to give me the only thing that touched the pain, saying that when they gave it to me my respiration went down to six per minute. Then I was just left there. I was told they were trying to get a room for me, but couldn’t find one. WTH!?! I had this scheduled for a while, how is there no room. I was left for several hours in torturous pain and I was not even given any of my normal medications while I was left there. I made sure everyone was aware of my chronic pain, depression and panic disorder prior to my surgery! Since they did not prevent the pain or my panic, I ended up in a full blown panic attack which wrenched up my abdomen in all kinds of ways. I pulled stitches and still have a set that are bleeding two days later. My stomach swelled up like I am pregnant with the right side much larger than the left.

I was sent home from the hospital the next day even though the said they would not send me home if I was in pain and that I had to pass gas, which I still have not done. To date that was the most torturous thing I have ever went through, just add it to the list.

I am still in way too much pain and I feel very sick. I am sleeping short spells then the pain makes me get up. I came home from the hospital with a prescription for 10 mg more of the medication I am already on. Needless to say, that is not doing much for me. Every time I wake up I pray I will Hurt less. It has been two days now. Maybe tomorrow will be better. I should of made them all write a plan on how they were going to manage my pain before I had the surgery, instead of trusting in them.

I am also having spells of crying. More joy! All of which, cause my belly to hurt even more! I will try to write more tomorrow and I hope this all makes sense, because I feel like I do not make sense.

Another Day…

I woke this morning to horrible pain, as if I wasn’t already dealing with so much pain anyway. No matter what I have tried I just can’t seem to ease this pain! I tried to go back to bed, but it hurt so much I could not stay in the bed. It hurts no matter how I am. I just want to get through this day! I am still deeply depressed, but I will see the doctor for that in two days.

I have not come out of my room yet. I feel so bad and I am afraid someone will say something that will irritate me and I will feel anger. I am tired of it all. The rash on my neck is now covering my entire neck and very puffy. It itches but if I scratch it, I then have horrible pain there too. I cannot go to the doctor for this, because it have to pay too much and I have NO money! I need just one area of my life to be easy. Sitting here to type this, my tailbone, left low back, left hip and buttocks are is in major pain. Crushing me and throbbing and jabbing me.

I Must find something to occupy my mind away from this hell. I am going to try to crochet again. I want to scream! It hurts so much…. Please, just give me some relief…..

UPDATE: (Venting…)
I am so sick of LAZY people in this house! I am in a ton of pain, my right leg is stuck in a cramp that won’t go away. I wobble my way out of my room to the living room and my sons girlfriend is laying on the couch, because she is just so tired and just can’t seem to get enough sleep. My grandson has not even been fed lunch at this point, which it was 3pm! He tells me he is hungry and wants a hotdog. Of course my son and his girlfriend are just laying on the couch and they do not bother to get up and fix him something to eat. So I get up, wobble to the kitchen, with tears in my eyes, get a hotdog and heat it up, then cut it up and put it on his plate with a few chips. Then I get my grandson to the table and in his chair to eat his lunch. The entire time She is just laying there. I mean really!?! Why can’t anyone seem to grasp the amount of pain I am in? Why do I have to live in a house full of lazy slobs that can’t even take care of a three year old! Then She gets up just to get her iPod, which she is always glued too! FU! I want to slap her and say, “You might wake up if you got up off the damn couch and moved around!” I know I am depressed and in too much pain, so I have been getting very annoyed with things lately! The kitchen hasn’t been cleaned up. There are NO clean knives and everything is piled all over the kitchen counter. The kitchen is very small and the rule is who ever gets up with my grandson is supposed to clean up the kitchen. I can’t do it all anymore. I don’t ask for much. I don’t know what else to do. What can I say to knock the sense into these people? How do I get them to realize the amount of pain I am in? Come on!

The PAIN woke me at 4am…

I finally was able to go to sleep around 1am, then at 4am I was suddenly awakened to crushing pain in my low back, hips, tailbone and abdomen. I took two Aleve Liquid Gels and waited 40 minutes. Nothing, still being crushed to death! I took my muscle relaxer and waited a half hour. Nothing, still being crushed to death and quite tired of it! So I took a pain pill and after a solid hour I attempted to go back to bed. I finally fell asleep around 8:30 am. I then woke up again at 10am. Ugh……….

Needless to say, I am going back to bed as soon as I am finished with this post. I am really struggling to get through these days. It’s horrible! Pain that intense is impossible to busy the mind away from. Then you are also so exhausted on top of it all. I am listening to my body today and I will stay in bed or go back to bed as many times as is needed. Lack of sleep and the pain drains the energy from your body as well. Not a good combination, my mental health is showing definite signs of it already.

What are some things you have found to help you get through the severe episodes of pain? I have tried many things. Usually, on a normal day, I can occupy my mind and not dwell on it so much. Yet the severe days seem impossible to get away from. I appreciate any and all comments or suggestions.

Struggling………….

I have been struggling the last couple of days. I have had to go back to bed every morning because I cannot get a handle on my pain. New pain in new areas too. Stabbing, hot lightning bolts in my toes and feet. Throbbing aching in my knee. Muscles seizing up in my feet and legs. Hips crushing upon me. Burning deep knifelike pains in my tailbone. The hard penetrating pain in my low back. The never ending deep aching and crushing pain in my neck. It would be easier to list what does NOT hurt me…

I really feel like I can NOT continue on this way. I cannot and have not in a long time, been able exercise or move about much at all and yet I keep loosing weight. Not complaining, since it did need to loose some weight, yet it worries me how it is happening. I have been unable to occupy my mind on other things, due to the intensity of the pain. My mind feels like it is going mad, on a crazy ride where I fear I may never return. Pain does that, you know! When you cannot catch a break from it. My daughter has even told me how she feels very worried about me, because she saw my recent picture and noticed the amount of weight I have dropped. I wonder why it doesn’t seem to concern my doctor at all. Isn’t that a significant sign of ‘something’ being seriously wrong? I have not weighed this low since the birth of my first child 27 years ago. I am pretty comfortable with my weight as it is right now. Another ten pounds would put me right at normal weight. I have Not built any muscle mass, because I cannot exercise. So I have really skinny legs and a pouch of extra skin at my abdomen. When my own mother told me I was skinny, that shocked me! She insists that if I had cancer they would have discovered it by now or I would already be dead from it, due to the level of pain I am in. I have NO clothes that actually fit me. Everything just hangs off of me by the straps at the shoulders. Just four months ago I fit fine in my older clothes from loosing weight back in 2006. It just seems so quickly that I reduced so much in size. I am pretty sure the neighbors are convinced I am on some kind of drugs.

So, I just don’t really know what to do next. I see my actual PM doctor in December instead of his PA, because I insisted on it. What should I be bringing to his attention besides the weight loss and increase in pain? I’m miserable more often than not and mentally I feel over run. How can anyone deal with this amount of pain and in so many areas, without a break? It has to take you mentally over an edge. It is rare that I smile or can even not be miserable. I hate that. I don’t want to drag anyone down with my negativity that emanates from me, because I am consumed in too much pain. I will have 10 minutes, if even, to get my doctors attention. What do I need to say? It is taking everything I have to just try to make it each moment to the next. I have tried so many searches in what is the cause of it all. I cannot pin point it. Severe pain that seems to be spreading through my body over time. Muscle cramps that wrench my feet and toes up. I do soft stretches every single day. I have circulation in my feet and toes even though I cannot feel half of them and the other half hurts to high hell. What do I do now? How do I get through this? What will it take to give me a break from it all? One month until my appointment. I am on a much higher dose of a skeletal muscle relaxant, that does help the leg cramps, yet nothing is touching my feet! I take my pain medication on schedule and never miss a dose. I take my night time medication so I can sleep, which I do for about six hours usually, then I am up due to the pain, take my next dose of meds and back to bed I go. I have spent the entire day, that I have been out of bed, in the recliner in the living room. Normally I can find a two hour window in the afternoons to get something done, like some laundry or pick up a bit. Though, the past couple of days I have been able to do nothing. This is when it is so hard to move forward. When you cannot occupy your mind away from the pain!

It Is Time For Me To Throw In The Towel….

Halloween has always been my favorite time of year. I would spend months making new props and preparing to scare the trick or treaters as they walked through my haunted walk to receive candy. We were unable to do Halloween last year due to lack of participants, so this was the first time I was able to do Halloween while I have been in severe chronic pain. And let me tell you, I have to throw in the towel and not do it ever again, unless they find and fix the cause of all my horrendous pain! I couldn’t even make it just sitting and handing out candy. I was in so much pain I wished death would come swiftly! Even today I am over run with the intense disabling pain. It is so very frustrating to me. Disappointing too. As if I am not allowed to enjoy a single thing anymore. What am I being punished for? I have always been a caring and loving person that over looked others issues and accepted them no matter what. I may not be in a wheel chair this year, yet, but I cannot continue on in this much intense pain! This is so unfair! Am I not allowed an ounce of happiness? Living life mainly from my bedroom is not living life!

I will take today and rest and hope that tomorrow is a much better day, however, lately I say this every day. Something has got to give! I am thankful that I have a comfortable bed to lay upon. Now I will go lay upon that comfortable bed and pray that my pain will ease.

I just want it all to end…

I am in so much pain that it takes every ounce within me and every single medication I have to just get through a single day…
Dealing for over three years of constant pain with the levels running from a minimum of a 6 up to the highest of total hell at a 10. Six would be after a lot of rest and an arsenal of medications, that will last for two to three hours. When you cannot get down to a number that allows you to do things to occupy your mind, you become severely depressed. The pain eats away at you and your life becomes pure hell. The light can no longer be seen at the end of the tunnel. Darkness surrounds you and you are completely alone!

No position is comfortable. No place to go to hide from the torturous pain that has consumed you. You cannot sleep, or eat or even find one little thing that will bring a smile to your face… I know the importance of keeping your mind busy. So you can move your focus away from the pain. Being able to work on crafts or anything that will occupy your mind is key in survival for anyone who suffers daily in the hands of chronic pain! One thing is for sure, it costs money. And money I do NOT have. Not only that, but when the pain stays consistently at such a high level it drags you down the depression tunnel. It is next to impossible to even think, let alone, of something that will occupy my mind. Here I am, lack of sleep and unable to think or do much of anything. Fearing the inevitable, which is being in a wheelchair again. Wishing something would lessen the pain and that you would find some money so you could go to the store and get something to work on. All creativity has vanished, now unable to even think of one single thing that I could do to keep my mind busy. Pain is hell, it is pure torture. It takes everything away from you! Being positive is a must in dealing with chronic pain, but yet, it is impossible when the pain is just too high and for too long. Now the only thoughts you have are dark and depressing. You just want the hell to stop, once and for all! Suddenly, all hope has left you and there is no one there to tell you it is ok. Try telling yourself it is ok when the pain has consumed all the light you were ever able to find.

I miss my family so much. To be able to see them on the weekends and hang out. To have my sister always there for me. Now I am just here, very far away from my sister and brother and nieces & nephews. I have missed them all these years, but when the darkness consumes you, you can’t seem to stop feeling so lonely and in desperate need of my family!