Stupid Knee

I have had problems with my knees since I was 12 years old. I have a condition called Chondromalacia ( http://orthopedics.about.com/cs/patelladisorders/a/chondromalacia.htm ). It hasn't bothered me in about 15 years, save for weather changes (yes, I can predict the weather with my knees). But ever since this past Monday night, its been a whole different story.

I can barely walk. My right knee is swollen and really painful. I bought a brace at CVS on Tuesday morning and without it, I don't think I'd be walking at all. Yesterday, Finn and I went to see "Transformers" (which was AWESOME) and I couldn't get comfortable in the seat ~ my knee kept cramping up. I'm even thinking of going over to Goodwill today to see if they have a cane or crutches for sale; something to help keep the weight off my leg and maybe help it heal.

Went to the doc yesterday. She says I need an MRI. Well, I told her I probably need an MRI or X-rays and she agreed. She verified that the knee is swollen in comparison to my left one. She also prescribed some ibuprofen (which works much better than trying to take four OTC ibuprofen) and some Ultram for the night. The Ultram works wonderfully! And the ibuprofen keeps most of the edge off during the day. We're trying to manage the swelling and pain until I get my benefits in a couple of weeks so I can get that MRI.

The only thing I'm afraid of is this is the beginning of my journey to a new knee. I've always known that that's a possibility. The chondromalacia has continually worn away the cartilage in my knees. I'm afraid that the right one has given up its fight. I'm sure that having the Crohn's, which is an auto-immune disorder, hasn't helped the cause either. There are things that are going on in my body that are related to the Crohn's. In all honesty, I've had a feeling that things were getting worse, that my body wasn't feeling the same for a few months now. I just haven't had the money to get blood work and such done to confirm.

I will keep you updated as the days/weeks go by. But I wouldn't be surprised if I post from my hospital bed after replacement surgery.

Making Sense of Things

I was reading a friend's blog post from over this past summer. Seems he was going through some personal changes. And it got me thinking. He speaks of an internal struggle with his ego and id. Gee. That sounds familiar.

There are times that I really wonder if all that I've been through these last months is worth it. I'm living apart from my children. I miss them horribly. I don't feel whole unless I'm with them. Its extremely difficult. One of the challenges of life.

To move on with accepting myself, I realize that I must sacrifice. I'm supposing that being apart from my children at this point is a big sacrifice. I wasn't myself for so long. I am now rediscovering who I am. I have also sacrificed the security I felt with my ex. I had a beautiful home. I rarely asked for anything (any material object was given to me without question). But it wasn't enough.

I sacrificed everything I have known for half my life. For what goal?

I often sit and reflect on the decisions that I have made. I made a decision to regain myself. To learn who I am. Who I was. I think I'm finding her. I'm a lot happier than I was this time last year. I feel more comfortable in my own skin. It's such a wonderful feeling to say, "I like this or that" and not feel you have to have acceptance from others. I feel as though I am becoming my own person. I'm becoming stronger day by day.

I know that I have a really good friend to thank for a lot of this. He reminded me that even though I am a mother, I am also me. I am pretty. I am intelligent. I am creative. I am funny. I am lovable. Etc., etc. I was so lost in being a mom and a wife that I had forgotten this. My friend, I am eternally grateful to you for this. I feel I shall never be able to repay you for the gift that you continually give me.

And then I left. Or rather, I was kicked out. But, I'm thankful for that now. I needed that kick in the ass. I wallowed in my sorrow for a few weeks. There was barely a day in which I didn't cry. Then I got a job. I started making my way. And then I met Finn.

In a lot of ways, Finn is like my friend. He pushes me to be me. To be more comfortable with myself. I can truly say that if I happen to stay home at night, all is right with the world. I can read, I can design, I can sew, I can hang with my online friends. And its all good. If I start to get down on myself, Finn makes me see that I'm being silly. He calls me smart. He calls me beautiful. We talk about everything and nothing. We laugh. We share. We've connected.

But, while I don't know where my relationship with Finn is going, I'm enjoying it while I can. In a relationship where two people have serious chronic illnesses, one never knows what will happen from day to day.

And that's another thing that I've really begun to accept. My Crohn's and depression and anxiety. There's not a whole lot I can do about the Crohn's. It's there. It's not going away. There is no cure. But what I can do is live with it. It is part of me. It is a part of who I am. As is the depression and anxiety. The dark cloud still threatens me from time to time, but I'm able to push it away. I haven't had a full on panic attack in a while. I feel as though the more in control I feel over my life, the more control I have on my illnesses.

I feel freer than I have in years. And I don't mean free from responsibility. I still have that. I have myself. I have my children. I mean free from the restraints that I placed on myself. Making myself into the person I thought I was supposed to be rather than the person that I am. I like sewing, dancing, singing, hanging out, my family, my friends, renn faires, short hair, tight jeans, music, reading, fantasy, sci-fi, astrology, cats, ghost stories (even sharing my own), computers, arcade games, Broadway shows, Rocky Horror, Disney. I could go on, but I believe I'll end this post here.

I will revisit this as I see fit. For now, I am searching for the next modification to mark this realization in my life. A branding? A piercing? I want something significant. Something lasting. Something to remind me of the sacrifices I've made and will continue to make in the quest that is life.

UGH.

Not to whine, but....OK, just a little whining to get this off my chest.

I HATE BEING SICK.

I have a combination of a minor flare and a head cold. I knew the sinus thing was coming. Yesterday, while at work, I was really dizzy and my head felt fuzzy inside. The flare, I could feel too as I felt crampy and that I wanted to throw up.

So, although I just started my job, I had to call out today. I don't need to be cutting meat while trying to choke down the puke and dripping snot.

So, today, I'm having a private pity me party. I'm cursing my body for failing me, once again. Why does my body hate itself so much? I just don't understand. And then, a sinus headache and sore throat on top of the bloatedness and pain? What the hell have I done wrong?

I know. I know. What doesn't kill us, makes us stronger, right? But, why does life have to bring us to the brink and then slowly draw us back?

Bleh. I'm going back to bed.

Uh oh....

I think another flare is beginning to rear its ugly head. And I'm none-too-happy about it.

For a few days now, my belly has been feeling swollen and yukky. Can't imagine why. I don't have any stress in my life. Everything is perfect.

Then, why do I have this pain?

I'm going to try the "If-you-ignore-it-it-will-go-away" approach. I really don't have the money or time for this right now. I know, not the best approach. But, they can't do anything right now for it. It's still early in the flare. What will they do? Throw pills at me and hope that does the trick? I'm not in the mood to have to down a hundred pills.

Right now, I'm just taking some Zantac for the heartburn (that's really bad this time). One pill is cool and that's not even everyday. I'm still drinking coffee. But, the food intake is slowly decreasing. I find that on the days I run (running through the pain...probably not the best), I'm hungry and will eat. But, on the days that I don't, I won't eat.

Don't pity me. Don't feel bad. This is the nature of the beast. I knew that this was going to happen. Its about time for my treatment (have to call the nurse tomorrow). My life is upside down right now. But, also, the medicine doesn't work forever. Its a temporary fix. Of course, if the Remicade isn't working as well anymore, I have no idea what's next. There's not a whole lot of medication as strong as Remicade out there...

Home

I got home early yesterday afternoon. Princess was the first out to see me. Then Hubby came out. Little Man didn't realize right away that I was home. Princess was so excited to see me. Hubby enveloped me in his arms. Little Man was mad at me and told me to go away. But, after a little while, he didn't want me to leave and was hugging and kissing me.

I haven't decided if I'm going to leave Hubby yet or not. We talked about some of what was going through my head last night. He wants to help. He wants to fix things. But, this feels like old hat. Things go awry and we try really hard to fix things. Then, after a little while, we don't try as hard and we go back to just being.

I told him that some of what I was feeling (and this scared the hell out of me) has to do with the fact I've been ill with a flare for so long now. When one has a chronic disease, they can't help but think that their life is going to be cut short. I've taken Pentasa, Endocort, Prednisone and Remicade so far for this flare. I'm still having pain. I see a blockage. I see surgery. I see Grim Reaper knocking on my door...

Yes. These are the thoughts that have gone through my head over the recent weeks. That I don't have a lot of time left. I mean, I'm at an increased risk for colon cancer due to the fact that my grandfather had it. The Crohn's ups that risk even more. Then heart disease runs in my dad's family (he did die of a major heart attack after all). All the medicines I've been on mess with your heart. Then there's that little factor that while taking the Remicade, I could develop lymphoma.

I'm not suicidal. Lord knows I don't want to be there again. I fought way too hard to come back from that edge. I'm actually a little mad that I fought so hard to be alive today only to be thinking that my disease is taking my life for me. I'm 33...i ain't ready to check out yet! Damn it!

But, this is what goes through a sick person's head. Especially a person with a potentially fatal disease.

So, part of what I need to think about is: do I stay somewhere I'm mildly happy, or do I set off and find myself and what truly makes me happy for the remainder of my time on Mother Earth?

Doctor Update

A recap: Very painful Crohn's flareup right now. Had to go to the doc on Friday afternoon. Here's what happened...

So, he confirmed that yes, indeed, I'm flaring up. Duh. So, he gives me medicine. First one: 500 mg of Pentasa, two pills, twice a day. Second one: three mg of Endocort, three pills, once a day. He then gave me Vicodin for the pain until the other stuff kicks in (so far, not happening). I now have to call the office this week and set up and appointment for my Remicade infusion. And, I have to go get an endoscope next Monday.


What's that? An endoscope? But I thought Crohn's was in the intestines...doesn't an endoscope go through the mouth?


Yes, an endoscope. Yes, my Crohn's is in my ileum. Yes, an endoscope goes down in to the stomach through the mouth.


It turns out that the last time I was hospitalized (December 2006), they performed both a colonscopy and endoscope. During the endoscope, they discovered that I have an ulcer. An ulcer! Can't ever imagine why!? So, the doc wants to go in and see how that ulcer is doing. Of course, he makes it sound so easy. In the meantime, this is what I have to do:


Hubby has to take a day off work. I need someone to take me to the hospital and drive me home after. There also needs to be someone home to watch the kids. Hubby will do that, maybe bring them to the park or something for a couple of hours. I have to starve myself starting midnight the night before. That means no coffee on Monday. NO COFFEE. My appointment isn't until 11:30! Thank goodness they give me good drugs, otherwise, the migraine that is going to ensue from no coffee will kill me. Once I am home, I will be so out of it. It should prove for some funny stuff. Too bad we don't have a video camera. They will also probably do a biopsy. No reason why, they just like to cut tissue while they're in there just in case. I don't have cancer. I think they just like to cut and make it hurt.


So, this is my life right now. Popping pills, laying in bed, feeling bad because I don't have the energy to take my kids down the street to the park. It's enough to make dinner or load the dishwasher. I do my best, but sometimes, it doesn't feel good

I HATE THIS DISEASE

First off, I must say (picture hearing a seething voice, through gritted teeth),

"I hate this fucking disease."

I hate the fucking pain that's associated with it.

My husband was trying to say good bye to me before he left for work. Lately, he gets a bit frisky to make me think of him during the day (I do that anyway, I don't need the friskiness, although it is nice). So, this morning, he pushed down a little too hard on my belly. I saw stars. He quickly got up and practically ran out the door with barely an "I love you".

I fucking hate it. No one deserves this. He doesn't deserve it. My kids deserve a mommy that's not sick.

Even on medicine, I still get sick. True, the flares are longer in between, but they still come. Then, this feeling comes on again.

I'm not doing a pity me sch peal. I'm just venting. One needs to do that. And I apologize for the strong language.

I first got sick at age 17. I'm 33 now. I've had two hospitalizations. I've had two blood transfusions. The first transfusion later almost made me lose my pregnancy with my son because of some really rare antigen in it. I miss out on so much because I get too sick to partake in anything. I will have this for the rest of my life. There is no cure; only maintenance. Fucking great.

And, now to be shunned by my husband.

I fucking hate this disease.

Boredom

I've been so bored the last couple of days. I have Crohn's Disease and have been flaring a bit. So, because of that, I'm needing to rest and stay close to the bathroom. My side hurts to lift anything, so even doing laundry is out. I get tired so easily that cooking dinner is a major feat.

Crohn's Disease. How does one delicately describe this affliction? Since I'm bored, I'll try my best.

Crohn's affects everyone who has it a bit differently. Some have problems in their colon, others in their small intestine. Crohn's has the ability to affect everything from the start of the digestive system (mouth) to the end (I'm sure you can guess where that is). On me, it affects the ileum; that's the little flap that goes between your small and large intestines.

When I have a flare, I get a lot of pain on my right side just under my ribcage. Now, before I'm told that it's my gallbladder or liver, it's not. Trust me. I had everything tested for seven years before coming to a conclusion of Crohn's.

Once the pain starts, I know that the gas and runs aren't too far off. That's the fun part. To be a girl that farts and gets away with it because I have a condition. My husband hates it - he doesn't think it's funny at all that I fart. On the other hand, because I have the mentality of a 12 year old boy, I think it's friggin hysterical. So do my kids. They think it's funny that mommy Heine burps.

So, I fart.

And then other things happen. I won't go into that because that's just gross. I mean really gross. But, it's all part of the disease. You deal with it. It interrupts your life. You move on.

The medicine I take for it (which I missed my last dose due to illness) is called Remicade. This shit's expensive! Just the medicine alone is $10,000! This does not include saline, needles, etc. It's an IV infusion that I'm supposed to get every two months. It takes about two hours to be infused. Not fun when you've got two kids and need to keep them happy in a doctor's office for that long. It's a nasty medicine that suppresses your immune system. While on it, I have to be tested for TB. I can't have any kind of cold before the infusion. Every bug that flies along the sicky highway crashes into me and I'm sicker longer than anyone in my house. Great stuff, let me tell you.

Of course, when I have a flare, I also get some good stuff. Usually, the pain is bad enough to require pain killers. And, I'm not talking Tylenol 3. I'm talking percocet and vicodin. I've been on and off pain killers for so many years that I have to take the harder stuff. It's quite fun, though. The pain goes away and I get sillier than normal. Give me a drink and we're good to go!

So, I keep my chin up. The Remicade flowing. Pop some pain killers. Fart a lot. Poop even more.