04
Aug
10

…Of Sickness…

She said that she signed up for this, being with Aimee, even though she knew Aimee was sick. What she didn’t know was how sick Aimee really was. I know she would have still been with Aimee even if she did know how sick Aimee really was. It’s so frustrating to watch the person you love suffer, and that’s what Andrea does. She watches the woman she loves so much suffer in terrible pain. There’s nothing she can do but sit with Aimee, try to keep her calm, hold her hands, look into her eyes, breathe with Aimee to keep her heart rate down and keep her from hyperventilating. She whispers to Aimee words that I can never hear, but I know that Aimee is comforted by the way her heart rate begins to drop and the way her breathing becomes more normal. All Andrea can do is kiss Aimee and tell her that she’ll get through this just like she has every other time. She’s stopped telling Aimee that they’ll figure out what’s causing her pain and fix it, because we know what’s causing it and now, we know that there’s no fix.

It seems like every time there’s good news pertaining to Aimee’s health, we take a step back somewhere else in it as well. We found out about her B-12 deficiency and began treatment for it. Her paralyzed right  side began to regain feeling and, she began to walk more normally. Then her heart rate begins to elevate and now she’s in a constant state of tachycardia. She was hospitalized for five days. While there, her internist, Dr. Parker, told us that the pain in her head that she’s been suffering from for over a year now will never go away. Ever. He said that her Pseudotumor Cerebri will be a constant problem and that she should not expect to have a pain free day for the rest of her life. If she does happen to have a day free of pain that she should take advantage of it to the fullest extent and not expect it to happen again. Dr. Parker told us what none of Aimee’s doctors were able or even willing to tell us. The truth. Yes, it’s not what we wanted to hear. It was devastating to Aimee. She seemed numb for a while and then, light someone flipped a switch, I saw her face change and I knew it had hit her. This pain, this constant reminder of how her life was never going to go back to the way it was, was never  going to end. I watched Aimee as she broke down and sobbed.

Dr. Parker warned Aimee that she was going to have a hard time getting help for her pain in the ER’s and boy was he right. He said that a lot of people, doctors included, don’t believe the kind of pain that people with Pseudotumor Cerebri have. That she would encounter more and more resistance to her getting the drugs she needs to reduce the immense pain she’s in.Before, when she would go to the ER when her meds weren’t cutting the pain, they’d give her drugs to help her. Sometimes they would come after a million questions and questioning her sanity, but she would eventually get them and she’d be fine for a few days. Now, they act like she’s crazy and try to send her away with nothing. Today, we took Aimee in. She’d been fighting this pain for days and finally couldn’t take any more. The first thing her doctor did was suggest a lumbar puncture. I understand why they have to do that, after all a Pseudotumor Cerebri is all about the excess fluid in the brain and the pressure that it causes, but after they did the LP and found that her pressure wasn’t that high, they should have just done the drug treatment that has always helped her. Now, along with the debilitating head pain, she’s got the pain from an LP and all they would give her was a small dose of a shit drug that did nothing for any of her pain and they sent her home.

Aimee needs to get into some kind of pain management program, but all of her doctors are either out on maternity leave, out of the office, have shit staff or don’t have an open appointment for two weeks. Her trips to the ER, which helped before because of the drug regimen they knew worked, are now proving fruitless. The doctors feel that she is a drug seeker and because of their ignorance, they won’t give her the narcotics that she so desperately needs. They see her scars and know of her past mental health history and that completely blinds them to the obvious physical, organic issues at hand. We know she’s not a drug seeker. We have had to force her to the ER so she can get some kind of relief. I have heard her first hand (before we knew that her pain was permanent)  tell her neurologist that she didn’t just want to be prescribed a shit ton of narcotics to bandage the problem, but for the problem to be found and fixed so she wouldn’t need the narcotics to live. What kind of drug seeker says that? Aimee hates that she’s on so many medications. She hates that she can’t live the normal active life she had only a year ago. But the fact is that Aimee needs these drugs now. The pain has gotten so bad that there are days that she can’t get out of bed, she can’t eat, she can’t sleep and all she can do is cry.

To see Aimee in that kind of pain is devastating. To hear her uncontrollable sobs when the doctors tell her that yet again, she will be sent home without an ounce of their help, in excruciating pain, when we know exactly what will help her is beyond depressing. She has a serious issue that no one seems to want to do anything about. I’m afraid that in the end, Aimee will have to resort to self medicating. And nothing good can come out of that.

Aimee is a beautiful, brilliant, vibrant 26 year old woman who has been given the worst news; That she will be in pain for the rest of her life. That her dreams of being a fire fighter will go unfulfilled. That her EMT training has been in vain. That her hopes of having a normal life like she used to have are for nothing. She has been given a diagnosis of having a life filled with pain and no one will do anything to help her manage it. It’s a huge and vicious cycle that really isn’t necessary. Someone has the knowledge and ability to help her. I know it.

Andrea is so frustrated, as we all are, but she is the one who will be by Aimee’s side for the rest of their lives. Andrea is the one who will rush Aimee to the hospital when the pain is too much for her to handle. Andrea is Aimee’s life partner and love. Andrea is so worried that she’s going to lose Aimee to this. Whether it’s to the illness itself or to the mental toll it takes on Aimee, we don’t know. But I think we all are having the same fears. I can only hope that someone steps up and does right by Aimee.

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Vomitus of the Brainus © Aimée Easton 2006 - 2011 All Rights Reserved Material contained on this site are under copyright, whether my own or someone else's. The material here is published strictly for personal use, and may not be copied to any other place without prior permission. I have borrowed or linked resources from elsewhere and I have given credit to the source from where I got material. Any form of copying or distribution, may face legal penalty.

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