Friday, January 15, 2010

Scared

I get a really bad headache if I am sitting for more than 45 minutes. Therefore, I've been lying in bed most of the time. I called my surgeon earlier this week and was told I would receive a return phone call. No one called back, so I called again this morning. Again, no return phone call. I decided to research the subject online and I believe I have Orthostatic headache which "is a medical condition in which a person develops a severe headache while vertical and the headache is relieved when horizontal". The headache is caused from a leak in my dura. "Spontaneous Cerebrospinal Fluid Leak Syndrome (SCSFLS) is a medical condition in which the cerebrospinal fluid (CSF) held in and around a human brain and spinal cord leaks out of the surrounding protective sac, the dura".

"SCSFLS afflicts 5 out of every 100,000 people. On average, the condition is developed at the age of 42, and women are twice as likely as men to develop the condition. Some people with SCSFLS chronically leak cerebrospinal fluid despite repeated attempts at patching, leading to long-term disability due to pain and nerve damage. "

That's just fabulous. What in the world is happening to me? It's just one bad thing after the other. I'm beginnig to think having this surgery was the biggest mistake of my life. It has screwed up my life in so many ways. For example, I believe I have black mold in my house and it is making me and G sick. While I was in the hospital, my dog Trudy started peeing on the bathroom floor. G was the person to clean up the pee and at 12 years old, she really didn't do a very good job of it. The linoleum in my bathroom is very old and cracked and peeling up in one corner. Trudy's pee got under the linoleum and sat for a long time... possibly causing black mold. Also, shortly before my surgery I had a pipe back up in my kitchen and had a major water spill. I cleaned it up as well as I could, but I know a lot of water got under the washer and dryer. I couldn't move the washer and dryer to clean it up, so there was standing water under and behind the washer and dryer. Perhaps there is black mold in the kitchen too? AND... last weekend my furnance died. I asked G's dad to go down to the basement to have a look at it. Upon entering the basement, he found out a pipe had burst, and there was water all over the floor and stuff that I had stored in boxes. Yet another opportunity for black mold to develop. I really love my house. It's so cute and has so much charm. I fell in love with this house before I even saw the inside. But it was built in the 20s and it needs a lot of work. Also, I can't even get to my own basement and that is very frustrating. I'm thinking about moving to a condo. A new one. That way all the plumbing, electricity and everything will be in good condition, and it will all be on one level. I also wouldn't have a yard to worry about, which is good and bad. Good because I can't keep my backyard looking decent (which has caused at least one of my neighbors to hate me), but bad because I won't be able to garden anymore.

I don't know what to do. I just know that this single, aging, disabled mom can't keep up with the demands of this old house anymore. And now I find out that I could possibly have to live with this horrible headache for the rest of my life? I'm at the end of the rope. My life is falling to pieces.

6 comments:

  1. Oh Shannon, I'm sooooooo sorry all of this is happening! I know it absolutely sucks right now, but I also know you have the resiliency, heart, and intelligence to get through it. You have so many people who care about you, too. Beware of diagnosing yourself from what you read on the internet as it can scare you and be wrong. The emotional stress and fear of the unknown are not helpful to your healing process, or so I believe, anyway. Your doctor will get back to you. Also, there are so many resources out there for help in all of the other areas you mentioned! I'm rooting for you and I know so many others are as well! Thinking of you as always! xoxox Lise

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  2. It must be very frustrating that your doctor hasn't responded to you. I hope that happens soon. I did call Rebuilding Together and they said they can do a major overhaul of your house (completely free!) but you have to apply very, very soon. 503-943-7515

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  3. that last comment was from Justine. :)

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  4. Shannon.... I hate to hear you sounding so frustrated. I can testify that the surgery you had was MAJOR! I have not known you long but it sounds to me like you may have some unrealistic expectations of yourself. You will be recovering for A WHILE!! Your headaches could be stress.. either physical or psyhcological. I agree with Catplus about being careful with internet self diagnosis. I can relate with your frustration with trying to keep up with the demands of a house. I live in a house on a large lake with dock and boathouse that I cannot get to without help. Not to mention getting in and out of my boat. Your thoughts about a condo are actually pretty smart. Your life would be easier and most condos have garden areas where you could still play in the dirt!

    Hang in there girl and don't be afraid to ask for help.

    I am six months out of my surgery and "A DUDE" and I still struggle doing things I did before the surgery but progress is being made. I am starting to see more and more benefit from the surgery.

    REMEMBER.... It was NOT optional!!!!!!

    Keep your chin up!
    Grandin

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  5. Oh Shannon, I can see how frustrating it is. I hope your doctor gets back to you soon. Otherwise, I would just keep calling!

    As far as gardening in a condo, my sister lives in one and she has some lovely flower gardens. The only problem she has, is she has to remind the ground crew to keep out of them, as they will weed things out that aren;t weeds.

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  6. Thank you for the support everyone. Although I'm still very worried about the headache problem, and overwhelmed about everything, I'm not feeling quite so pessimistic today.

    Grandin, this ordeal has been so much harder than I ever dreamed. Remember when you told me that there were times when you didn't think you were going to make it? Someone else who had a similar surgery told me the same thing. I can understand now. This is the hardest thing I've ever been through, and being injured since 1978, I've been through a lot! I don't think most people understand what I'm going through, but I know you do.

    But... I know things could be a whole lot worse, so I'm trying hard to focus on the positive, such as the fact that I'm not dead!

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