Sunday, November 22, 2009

Anonymous letter to normal people


Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
author unknown

Friday, November 13, 2009

Sunday, July 26, 2009

Monday, July 13, 2009

Better days

This slide show goes back to better days, when Mister Gallbladder would regularly pump out enough bile for Bobby to actually eat chicharrone burritos. A thing of the past now. A slice of bacon or two per month is about all in that department getting down here lately. Fats. No good way to deal with fats. We do take a lot for granted.

Saturday, May 16, 2009

"Win some , Lose some"

The scan is over. Commense glowing in the dark.Radioactive iodine, and the post ct scan doldrums from the contrast allergy are in full swing. I love the catch 22's you humans get to deal with. NPO before a test means the patient is almost sure to become a human pin cushion when they try to start an IV for a dual phase computed tomography. This was the case with Bobby yesterday. The nurse (male,... bummer) punted to the other nurse (female,... hooray) after four sticks, all missing the vein. The last one almost had our former beer drinker fainting. It must have something to do with anticipating one stick, but after three misses, panic starts to set in. For the patient as well as the nurse. You could see it all over his poor face. Two years ago for Sharon's brain decompression surgery, the anesthesiologist missed over 10 times. Bobby stopped counting at 10, and it took 20 minutes after that with 4 large men holding her down to get a large catheter in to her artery on her forearm. No blame on the doc, it wasn't in the card for him that day. Yesterday did not even come close to that kind of torture for Bob. Especially when you take in to account that he didn't crap out from the iodine contrast with was auto injected in to that carefully placed IV, and that the scans showed no liver cancer, which is a big risk now, and that at the end of the day, because the nice lady who placed his IV and did his scan asked him if he had any other tests later in the day, which he might need a blood draw, and they decide to keep the IV in just case. So, later after meeting with the WORLD FAMOUS HEPATOLOGIST he couldn't stop smiling, as they flushed out his hard won IV, and managed to draw fresh blood , 6 vials out of it, sparing any more punctures for one day. Win. As my old grand dad Juan D BillyBob used to say-"Unas veces se gana y otras se pierde" . Win some, lose some.

Say Cheese!

Friday, May 15, 2009

CT time once again

I am beginning to feel a sense of deja vu. How about you? The last time the CT scan happened, Bobby got really sick presumably from the contrast, prednisone premedication, plus benydril, and Iodine contrast ( allergy). So, the doctors tried to have Bobby take a different kind of test this time, a stand up MRI. That was last month. He lasted 4 minutes in the machine before begging to be let loose. Pain. Squeezed me and SPLEEN Mc Queen big time...It was a combined spine/liver MRI. So, on Monday, he had an open scan MRI which looked like this...He tried something new. He took a small spray bottle from the cosmetics section of the grocery store, and filled it with water. He told the tech that he would have a much higher rate of success if he could wet his mouth with the spray bottle. She had no objections, except to say to please only spray when it was quiet. He did. No panic inducing dry mouth, or difficulty swallowing, gagging, or throat clearing. . None. At all. He held the spray bottle next to his mouth, and every thing was cool... and moist. Daughter hates that word, moist. Moist. But Moist is in a key player in Dr Horrible's sing along blog. Bobby's thing this summer. Big time. Freeze ray... stun ray... computer aided x ray. Tommorrow.
Be there, or be square. Bill.

Saturday, April 25, 2009

Thursday, April 2, 2009

Friday, March 27, 2009



it seems like a non stop showdown

between me ...

and him...

Thursday, January 22, 2009

Mayo Clinic Researchers Develop Improved Tool to Rank Sickest Patients Waiting for Liver Transplants

Someone in Bobby's support group posted this article. They are going to add serum sodium levels to the MELD score calculator to help identify the sickest, and most urgent transplant candidates.