Worthless

So last weekend was my birthday-weekend and I received hundreds of messages from friends all over the world. It was very sweet, and I felt special!

2 days prior to that though was my re-birthday as I wrote about earlier, and it was a very sucky day! I was fine until my husband came home and never said anything… He came home early for once, and I thought it was to surprise me, but it wasn’t. He came home and went and lay down on the couch. I was so disappointed and bitched him out in front of the kids. It ruined my rest of the day and the day after, too. I don’t know why it affects me so much, but it did. To me the 23rd is way more significant to my life than the 25th (my actual birthday) and of course I don’t expect anyone to know, remember, or even care about my accident’s anniversary, but I had hoped my husband would have known better… But than again he isn’t really the considerate type of guy.

Yesterday I called my doctor’s office to let him know that the referral he gave me to Cedars Sinai wasn’t going to work out, since the headache specialists there don’t accept my insurance. A few hours later I received a call back that he was referring me to Dr. Kim, who’s the doctor I saw last time, who told me flat out he had nothing to offer me I hadn’t tried before. The doctor’s assistant was surprised and told me she’d call me back. 30 minutes later she did to refer me to Loma Linda, which is the group who gave up on me in the beginning of last year. So I told her that Loma Linda referred me to Stanford, and they’ve thrown in the towel as well, that’s why I asked to be sent to Cedars Sinai. I could hear the panic in her voice not knowing what to say or do, but she then referred me to another local pain management clinic. I haven’t been there yet, so I’ll give it a shot, but I have absolutely no hope or expectations.

It’s really disheartening to realize there’s no cure. Once in a while I’ll think positively but I know I’m just fooling myself to please others. I don’t want to give up trying because that’s not setting a good example to my children, but it is tiring. I’m tired of telling my story, and I’m tired of having to answer the same questions. The most annoying part is probably seeing the lack of interest doctors show once they see all the medications they generally prescribe I’ve tried, and the procedures they’d consider I have already been through. There’s no straight answer, and no comparables. I’m not interesting enough because I’m not dying. I cannot be “saved”, so I’m worthless.

Rebirthday

Today, March 23, 2016 marks the 19th anniversary of when my old life ended and the new one began.

I never really know how to feel about this day. I could be grateful to have overcome another year of agonizing pain, or I may be sad because another year of pain has passed and there’s no end in sight… I also feel like the longer it’s been, the lesser understanding you get from people. “Why are you hurting?” “I was in a car accident.” “Oh, I’m sorry to hear that! When was that?” “It’s been 19 years now.” “Oh, okay…” Like,  what would you expect? If I’m still alive 19 years after I must be fine.

When the accident happened I was 16, and it made me have to snap out of puberty real fast. All of a sudden, instead of worrying about which shoes to wear, I had to worry about learning how to walk again. I had to overcome strangers coming into the hospital room every day to give me sponge baths for a month straight! I couldn’t finish my school year. I couldn’t stay at my boarding school anymore. I had to live with my mom 24/7, and trust me, that was rough! We butt heads all the time, because we’re both stubborn people. I guess the stubbornness did pay off for me…

Anyhow, I consider this day my rebirthday since they did have to resuscitate me several times that night in 1997. So no matter if I’m happy or sad, I’m still alive and that’s all that counts, I guess.

 

Winning

I realized in my last post I started off one way and changed the subject completely. So, what I was saying about not letting the pain win…

Most of the time the only thing I feel like doing is laying down, and hoping I fall asleep so I don’t ache. After I do that though, I’ve noticed I feel worse. I don’t know if it’s psychological or physical, but I’ll feel like total crap. I hate wasting time. I always have a lot to do, just running the household and it bothers me to have things laying around, or laundry stacked up that needs to be done. So despite not feeling like doing anything, I usually decide to stay busy.

My baseline pain level I would say is around 6/10. When it increases significantly, and I’m out and about, I avoid going home. If I do go home I know I’ll go lay down, and I usually either don’t have time, or I just don’t feel like it. I will instead go shopping. Not necessarily buy anything, but just walk around, slowly, and tune out the world. By the time I go home, I’ll be completely exhausted, and barely capable of moving, but at least I feel like I had a little victory over the pain.

 

Heartbeats

When I’m in so much pain, that all I want to do is lay down and sleep, I avoid going/staying  home… I don’t want to let the pain “win”.

It’s been rough lately. Sometimes I feel like I was better off when I worked full-time, because I would be forced more to just deal with it, and I felt more productive. It’s hard. Life sucks, really. All I want is being able to enjoy myself, and not be in pain all the time.

Have you ever noticed that when you’re having a blast, your heart rate increases? Anytime you have an emotional reaction, no matter if it’s happy, sad, fear, anger, your heart rate goes up. When you go up the stairs, walk a hill, run, ride a bicycle, even when you go to the bathroom (!) your heart will beat faster…. When my heart rate increases, even the slightest, my headache increases. Every single time. So basically, no matter what I do, my headache will constantly remind me to take it easy. I can be having a good’ol time with my friends, cracking jokes, and laughing so hard my belly hurts, but as soon as the first rush of excitement is over, my headache slaps me in the face.

Every day I walk to the bus stop up the street (we live on a hill) to pick up the kids and every time when I’m halfway I wished I would’ve taken the car. It’s not far! Yesterday I drove there because my headache was just too bad… Today I will probably drive as well. The reason I have the kids taking the bus, is because the school’s parking situation is terrible, and I would have to park too far to pick up the kids from their classrooms (which is mandatory because they’re too little still), and my knee pain is preventing me from walking long distances.

I just wish something would improve… if I could feel just one less pain all the time, my life would feel a little easier I think.

Scents and flavor

For the last week I’ve been experiencing some allergies due to the beautiful spring air around us here in Southern California. My sinuses are stuffed and I can’t detect any scent or taste any food!

This reminds me of when I lost those 2 abilities right after my accident. The nerves to smell scents and taste food were damaged with the severe concussion. The doctors told me they’d “grow back” if I was lucky. Well, for once luck was on my side and they did start working again, but it took them a good 8 to 9 months.

When people would ask me how the food in the hospital tasted, I would always say it was delicious, because I couldn’t taste it anyway! While I was in the hospital during that first month, I had daily visitors and nobody would come empty-handed, so many of them brought a gift of perfume (what else do you get a 17 year old?), unfortunately I couldn’t smell them until much later.

When my senses reappeared  (slowly) I noticed a big change in the way I experienced them. My favorite foods weren’t any longer that great, and I didn’t like the scent of my favorite perfume any more.

It was very bizarre at first. For a while it was very confusing to rediscover food and scents, but now obviously I don’t know any different. So having this flashback this last week, made me realize how difficult or different life would be without having those senses. The pasta sauce I was cooking turned out still delicious, because I’ve been cooking for a long time now, but if I couldn’t smell the foods I’m cooking, I’m pretty sure my kids and husband wouldn’t love my food as much as they do! It totally sucks when all you can “taste” is texture!

I’m sure glad my senses returned even though they’re different from before! Now if I could only get rid of these allergies!

Immunity

Due to the lack of having a spleen in my abdomen, I’m way more prone to infections and they can turn deadly much quicker than with “normal people”. My immune system is seriously compromised.

I get a pneumococcal vaccine every 5 years and the flu shot yearly. I still get sick way too often. Every time my kids come home from school with a little cough I’m bracing myself for what I know is coming. I had mono at one time too, and I’m sure it’s because I’m so susceptible to any and all germs. I get UTI’s all the time, and after doing some research I found out that my fatigue and lack of interest could be related to the splenectomy as well.

I have to be very careful with high fevers, and go to the ER if I can’t get them under control quickly. Fortunately that hasn’t been necessary in the last 18 years.

Is anyone else out there who’s felt negative effects from missing their spleen?