Saturday, October 17, 2009

Does double the protection mean double the sex?

You have to love my life. It is never boring anymore. One would think my not working and being home and rarely leaving my house would get boring. But no, my body finds ways to entertain me.

I was told that if I attempted to carry another baby to term it would most likely paralyze me. From all of the very large and scary lesions on my spine, the doctor is baffled that I am walking as it is. When the time comes to switch out my IUD I am ready! insurance will not pay for contraceptives. It will, however pay for a tubal ligation. After much deliberation, a few tears shed, and an acceptance that I will never have another child, I agree to have this surgery.

I go in, get the surgery. Which I am told was a success. I wake up from surgery in excruciating pain with a nurse shoving ginger ale and graham crackers at me because my blood sugar is low. Well duh I wasn’t allowed to have anything to eat or drink before the surgery. They refuse to take me to the recovery room until I eat these crackers and drink the ginger ale. I ate the ginger ale felt great on my dried up throat (they had a tube in there) and they wheel me to recovery. A few minutes later the projectile vomiting starts. Man I love my nurse. LOL

After about an hour of excruciating pain and sitting in a bed smelling puke I tell the nurse I am ready to go home. I can lay in pain at my house just as well as in the hospital. So they send me home. Well, I made it to my moms. No way I was going to make it back to my house some 65 miles away. The pain was torture and I could not get comfortable. The Percocet did help that a little.

Spend the day being pampered by my mom. Sent the man home to take care of the animals. Made it back to my house the next evening. It was good to be home. Still in pain, and that’s when the uterus decided to try to run away. A whole new kind of pain.

Then I woke up and my legs were completely numb again. YAY I have MS! First thing you do when new things arise is take your temp. I had a slight fever and decided to call my doc. Of course, he needs to see me before he can call me in an antibiotic. And he can only see me around the time my DD is getting out of school. I have to leave the man here, get in my car and drive the 60 miles to the doctor’s office. Mind you at this point I have a fever, my legs are numb, I cannot feel the pedals and I have stitches in my belly that are showing signs of infection. Oh yeah, and my uterus is still spasming which feels like contractions and my left eye is acting up…and I am driving!

Get to the docs office who tells me to treat the stitches topically and that he does not feel comfortable giving me an antibiotic because I am on immune suppression therapy for the MS. He then offers me another prescription for Percocet and tells me to have a nice day. He gets cussed out at this point and I am ready to stab the man in his testicles with a scalpel. I then get to drive back home in the same condition. I hate this man.

Two days later my daughter comes home from school in a particularly foul mood and I discover she is running a fever. This is the same day my head got all stopped up. I take her to the doc and find out she has a sinus infection….which means another trip to the doc for me. Turns out I have a sinus infection and an inner ear infection. Two weeks later I am still fighting the sinus thing.
Then I get my monthly friend who I haven’t seen in 3 years…which is why I loved the iud so much. This friend comes with uterus spasms again and massive amounts of yuck. Call back to my OB/Gyn office. Talk to my favorite midwife. We go over a checklist of symptoms. Sounds like I have Post Tubal Ligation Syndrome. But we can’t be 100% sure because most of the symptoms are also MS symptoms which I was having before the surgery. And how do we treat this? Birth Control Pills! The same pills my insurance would not pay for when I wanted to get my IUD replaced. They will now pay for them because they are not being used for contraception, but instead for hormone replacement. You have got to be shitting me right?

I am now taking not one but two birth control pills a day to counteract the effects of getting my tubes tied. The MS symptoms are getting worse by the day and when I go in to see my Neuro on Monday I get to request another MRI because I am pretty sure I have grown two new lesions on my spine. I shall name them Bubba and Earl. This is my life. Welcome to it.

OH OH and as if this story isn’t bad enough…. My daughter comes bursting into the bathroom the other day at the MOST inopportune moment (while I am trying to clean up the yuckiness) and proceeds to freak out that mommy is bleeding and tells me I need stitches! I was then forced to have a very serious talk about menstruation with my 5 yr old. That was fun. Almost as much fun as getting a call form the school nurse the next day. My darling daughter went in for her hearing test and she asks the nurse “I understand when you get old you have blood in your belly for the baby and if it doesn’t come out it makes you sick, but WHY DOES IT COME OUT OF YOUR COOCHIE??? Shouldn’t it come out of your belly button?? Because my mom’s coochie is bleeding!” So we had to have another talk last night. This is fun.

And does double the protection mean I get to have double the sex? Hell no. I can't stop the bleeding from getting my tubes tied. Moral of the story here: Don't ever think that it can't get worse because it will find a way!

Tuesday, October 13, 2009

It's just one of those days!

Depression, frustration, and anger. These are some of the things the doctors warn you about when you have MS. They warn you about a lot of things in hopes of preparing you for what life has in store. But there really is no way to prepare for any of it, and this is the case with life in general not just with MS or any other disease.

Fatigue, optic neuritis, balance issues, pain, insomnia, numbness, depression, hypersensitivity, bowel and bladder dysfunctions, sexual dysfunctions… These are all common symptoms with Multiple Sclerosis. You can read about these symptoms, you can research treatments, but you cannot prepare for any of it, until you experience it. And most of the time the doctors don’t tell you what to expect because there is no sense in getting you worried over something that may or may not happen. And I have not read anything in a book, or online that has prepared me for any of this.

One of my biggest challenges with this disease is the frustration I feel when I am no longer able to do the things I enjoy. In the beginning of summer, we were hitting the beach almost every day. We were at the park, we went hiking, we played and we laughed and although I had this disease life was good. By July I couldn’t step outside without the heat causing my legs to crawl, and causing my eyes to act up. I couldn’t pick my daughter up from the bus stop when school first started without taking my air conditioned car. We live 3 houses away. I knew if I attempted to walk down and stand there for the 10 minutes or so that we wait for the bus I would not be able to walk back home. And although you learn to adapt to these changes in your body and in your life you cannot help feeling frustrated.

I have a very aggressive form of this disease, and the only way to treat an aggressive form is with aggressive therapies. So I pump these toxins into my body each week. I take pills for the MS symptoms, I take pills to counteract the symptoms of the medications. I inject myself every week with a drug that tries to shut down my immune system. I get sick, and I stay sick because my body cannot fight these attacks. And your entire life becomes one big science experiment. This drug makes it worse, this drug is effective for most people but not you. Let’s try this one. Let’s try that one. It’s all one big guessing game. What works for some doesn’t work for others.

There is such a thing as “MS Fatigue”. We have our own class of fatigue, and until you have experienced it, you have no idea. I can tell you there are weeks at a time where I am completely useless. It takes every ounce of energy I have to get dinner cooked. I can’t get off the sofa, and when I do it’s because I am going to get into my bed. But even sleep is terrifying, and painful. Am I going to be able to see when I wake up? Am I going to be able to walk? Is the crawling bugs feeling on my leg going to let up so I can fall asleep? I look around my house at the laundry piling up and the floor needing to be cleaned and I cannot find the energy to get off of the sofa and take care of these things. Mommy doesn’t want to play today sweetie she is so tired. And you lay here and watch life as it passes you by and this is the fatigue they talk about.

People can see that you are having a hard time walking. And even if they can see the physical impact and they can understand the cause of these symptoms. But no one can see the emotional impact that this disease has on you. No one can feel what is going on in your mind when you realize you cannot walk across the room. No one feels your heart sink when you look at your shoe collection and you remember the days when you could actually wear them. No one can see the disappointment in yourself when your body refuses to respond to the drugs. Or the absolute feeling of hopelessness you feel when you look into your child’s eyes and you don’t know that you are going to be here to watch her grow up. You can no longer run around the yard with her, and you don’t know if you will even be able to walk with her tomorrow.

You see people who take life for granted and it makes you angry. You used to be one of those people. You worked too much, you didn’t take time for yourself, or time for your family. And now you can’t get that time back. And it makes you angry.

Every day isn’t a bad day. And you do learn to appreciate life a lot more when you have something threatening to take it away. Every day is a battle in the much bigger war called life. And every day that I wake up I awaken with the knowledge that I am alive and this disease didn’t win, and this war is not over.

But, some days, like today you just don’t want to fight anymore. Some days you just want one day where you are not reminded that this thing is here and it’s kicking your ass and there is absolutely nothing you can do to stop it. These are the days when you have to fight harder. These are days when you have to use that anger and that frustration to push you through to tomorrow. And you cannot worry about what tomorrow has in store because even if you do there is no way to be prepared. Life happens, and there is nothing you can do to stop it.