Planning

Overall everything I do is last minute, random, impulsive, on a day-to-day basis. I don’t like to plan stuff because I never know how bad the pain will be. Even same day planning has to adjust to the severity of my headache on occasion. When I do plan something ahead, like a trip or a visit to friends, I will sometimes prepare myself by taking ibuprofen after breakfast, but that doesn’t always give me enough relief, so I usually just tough it out.

I feel bad when my kids ask if we can go somewhere for the weekend, like Chuck’e Cheese, or some awesome park, because I can’t promise them. If I do commit, and have a terrible headache that day, my sweet husband will save the day, and takes them by himself, but then I feel so inadequate… I truly feel worthless as a mom and a wife. Family outings are rarely fun when I’m around.

My parents will come and visit me from Europe every year for about a month. I’m the worst host because I’m more often than not in too much pain to really hang out with them or take them anywhere. Sometimes I wish they wouldn’t come, but then at the other hand I’m so grateful that they do. I love my parents, they are awesome people and will do anything. Unfortunately I’m not an awesome daughter. I just hope their grandkids give them enough joy to continue to visit.

 

One pain at a time

Since I had the accident in 1997, I’ve had 5 surgeries on my right knee to repair the damage that was done when my ACL ripped off. When it happened originally they didn’t fix it right away, because they were focusing on my left open femur fracture, and the healing process for that was quite extensive and painful. So about a year an a half after the initial injury to me knee, they finally went in to repair the ACL. Holy effing shht, that was painful!! I had experienced some serious pain before this surgery, but that one topped it all. I told everyone around me that I would never let any doctor touch my knee again!! That was a lie…

My knee never really recovered well after the first surgery, so my parents found “the best knee surgeon in the country”, and he opened up my knee during my 2nd surgery to see what was going on in there and clean up excessive scar tissue. This doctor decided I needed another ACL reconstruction but this time with cadaver tissue. After my 3rd surgery, I encountered some complications and I was resubmitted to the hospital to treat an infection. Again, the pain was from out of this world. I cannot describe how horrible it was. The craziest part is that during all this time I still have this stupid headache to deal with, and when I was laying in the hospital and they were injecting Morphine straight into my IV, I still had this headache… Even the Morphine didn’t give me relief from that.

Even after the 3rd surgery my knee never felt much better, and it hurt 24/7. It got to a point were I could barely walk, so my husband urged me to go see an orthopedic surgeon here in the USA. It has been 12 years since me 3rd surgery, and still remembering the pain, I really didn’t want to see this doctor, because I knew what he was going to say. Sure enough, he recommended another ACL reconstruction. My knee was so “loose”, he didn’t even order a MRI to see what’s wrong. 3 weeks later I was having surgery number 4. I found a local physical therapist who was really good (the no mercy type of guy) and I started PT shortly after the surgery. It was brutal. Especially with the kids, and the new house we just bought (with an upstairs!). I was lucky to have found some great help in the neighborhood, but I was suffering big time. At PT it was going well, until I felt my knee getting inflamed, so I’d have to start over with the lowest weight again, and take it slow. This happened several times, and it was such a demotivater! At one point the doctor gave me cortisone shots in my knee to help relief the forming of scar tissue, but it didn’t help much. Six months later I had to have my 5th surgery to remove the excess of scar tissue that formed due to all the inflammations I kept getting. Eventually I just stopped going to PT (after 80+ sessions) because I didn’t feel it was benefiting me enough to put myself through that extra pain all the time (remember my headache is still interfering with my ability to work out hard).

Today my knee hurts more than it ever has. I don’t know what to do about it. I don’t want to see another doctor about this issue, because I don’t want another surgery. I feel as long as my headache is present, I will not be able to focus on recovering. I need this headache to go away, and then I’ll deal with all my other pain. One pain at a time!

Disabled

For a while I wished I would’ve lost a leg or something… I thought it would be easier to live with a visible disability so that I wouldn’t get judged by others if I blamed my pain on my inability to do something.

I wished people could “see” my discomfort, and would understand… understand why I look angry, understand why I’m quiet, understand why I limp, understand why I don’t want to go to “fun places”, and understand why I park on the disabled parking spot…

I’ve gotten to a point now where I really don’t care what others may think.451px-Handicapped_Accessible_sign.svg

Kids

I have 2 children, 2 years apart. I love them with all my heart. They are what keeps me alive.

When I first had my accident, I was worried I couldn’t have kids. My doctors assured me though that I shouldn’t have any trouble conceiving, but I would have to give birth via c-section.

When I started feeling the motherly instinct, and craved having a little person to care for, I seriously thought about it. I was also secretly hoping that a baby would make me forget about my pain. I sometimes feel like I was selfish, but I also know that nothing could’ve stopped me from being a mother. The urge was very strong.

My daughter complains sometimes about feeling a headache, and it breaks my heart. I don’t think she’s faking it, because I’ve read research papers stating that children of parents with chronic pain are more likely to hurt from these sympathy pains. Even though I never regretted having these two amazing little people in my life, I do sometimes wonder still if it was fair for me to give them a life with me. For them to have a mother who can’t stand loud noises, screaming, whistling, it seems like I’m limiting their childhood.

My daughter is 7 and my son is 5. They are amazing human beings, and I truly hope they’ll grow up to be happy, knowing they have a mother who truly loves them.

Old dreams

When I was young I loved to dance. I was quite good at it, too! I was always dancing, everywhere there was music. Didn’t matter what genre either, I would automatically move to the beat, and be happy. I started dancing in a group when I was 3. When I was a little bit older my friend and I would mimic cool dances we saw on movies like Dirty Dancing, Fame, Footloose, … and we would captivate an audience every time we made it out to a dance floor, or we’d just take our little cassette recorder to school, and danced during each break! I had a great time growing up. I loved Michael Jackson (still do) and would copy his moves. Dancing was my life. A short time before the accident I told a friend that I would kill myself if I couldn’t use my legs anymore.

I will always remember the first night I was conscious after I woke up from the coma I was kept in. Even though I had been awake the whole day, I didn’t realize the extend of my injuries. I didn’t ask any questions, either. Somehow I seemed to think that it was normal for me to be in the hospital. That first night, I woke up in the middle of the night, and needed to pee. It didn’t dawn on me that I hadn’t been up all day, and because I didn’t want to bother the nurse I decided to try and go to the bathroom by myself. The rails on the bed were raised, so I tried to lower the rails first. I was pulling, and pushing as hard as I could with 1 arm (because the left arm was in a full cast) but the rail didn’t budge. Since I wasn’t thinking clear, I figured I could just climb over the railing! So, I brace myself and wanted to swing my leg over… THIS is the moment I realize my legs don’t move! I was terrified! I started hyperventilating. I called the nurse and told her I had to pee. She then reminded me I was wearing diapers, so I didn’t have to call her! (She was annoyed)

That night was the worst night of my life.

The next day when the doctor checked on me, all I wanted to know if I could ever dance again. He said “sure!” but it could take a couple of years. He was wrong. I know now that I’ll never be like before.

The beginning

2 days before my 17th birthday, in 1997, I was the victim of a car accident. My boyfriend at that time was driving at a high speed on wet roads, and lost control which resulted in the car crashing into an utility pole. The pole broke in half, and so did the car  (Honda CRX). My boyfriend broke his leg, and I was ejected from the vehicle because I failed to wear my seat belt, and I landed about 65 ft further on grass land. According to the fire men who showed up shortly after, I survived because of the lack of my seat belt, just so you know. The “soft landing” on the grass is another reason why I’m still alive. At the scene of the accident apparently I stayed conscious. I don’t remember anything. I don’t even remember I got into the car that Sunday afternoon. I do want to be clear to state that no alcohol or drugs were involved, just irresponsible driving.

I was transported to the hospital in a big, decked out ambulance and I was accompanied by actual M.D.’s from the medical response team on call. This is when they lost me the first time. I was revived in the ambulance. They drove about 100 miles per hour on local streets. I know this because my parents were right behind the ambulance and they followed closely.

My injuries consisted of a left open femur (compound) fracture, a right broken knee and torn ACL, fractured pelvis and pubic bone, left broken elbow with torn ligaments, a ruptured spleen and liver, a neck, and back injury and a severe concussion with some limited brain damage.

During the splenectomy (removal of the spleen) they found about a gallon of blood floating in my abdomen. In other words, I completely bled out. I went into cardiac arrest at least 2 more times during surgery. After the first operation, they let me recover and immediately after that they put me under again to repair my open femur fracture. They originally assumed my right leg would have to be amputated, but they luckily decided to wait it out. They put me in an induced coma for 7 days to give my body a chance to recover without too much discomfort.

The initial stay at the hospital lasted 31 days. I’ve had 16 or 17 surgeries total since (I lost count).

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Changed blog name

I changed the name of the blog to something that makes more sense.

You cannot see my pain. You may see sadness or despair in my eyes but other than that I look “normal”. I should be happy about that though, because I would look seriously fugly if my pain was visible…Invisible Pain

Lonely

Pain is lonely.

I know I’m not the only person in this world who is in pain, there are millions and millions, but when I’m experiencing this debilitating, son-of-a-bitch headache, it feels like I’m alone. *I* have to deal with this, all by myself, all the freaking time.

Sometimes I wish I had this pain indicator right on my forehead, so I wouldn’t have to tell anyone I’m hurting, or I wouldn’t have to pretend like I’m okay. I’m soooo often not okay, but I can’t let it get to me. I’ve got to give my life a chance, a purpose. I owe it to my parents, husband, kids, friends, to look happy, to act happy. I need to remind myself all the time that I should be happy… I AM happy… My life is good, it’s just my body that sucks big time. It’s like my body works against me.

Good morning

My least favorite part of the day is waking up in the morning.

There’s nothing good about the first moment of the day for me. I have hated for over 18 years, and I see no change in that anytime soon. My headache is always very present, and no matter what I do makes a difference. I’ve tried different mattresses, taking a bath at night, getting a massage before bed, diffuse oils in the air, a mouth guard, incline the bed, changed my pillows, taken meds, … It’s all the same. My headache is horrible EVERY SINGLE MORNING.

I used to be a happy morning person. I’d say good morning to all my friends in boarding school, whistle in the hallways, sing. Now I’m this grumpy bitch. I sometimes look in the mirror, and all I see is this sad look in my eyes. My husband and everyone else who knows me say that I always look mad. I hear the word “smile!” often, but all I want to do is punch that person in the face. I’m sorry but I don’t feel like smiling when it hurts this bad.

Once I can find the strength to get out of bed, get dressed, wake the kids, make breakfast, lunches and take them to school, my headache is usually bearable. I’m just too busy to have time to dwell on the pain. If it is still too bad to get on with my day I may sometimes go back to bed and try to sleep again, because that’s my favorite thing to do. When I’m sleeping I don’t feel pain. The suckiest part about taking a nap though, is that eventually I’ll have to wake up again, and I’ll have this ridiculous headache to deal with once more.