Rightly Worried or Paranoid

I am having numbness on my right hand side that feels like someone slapped a lidocaine patch on it. I have spongy skin on my right rib cage that appears to be bruising. I can't lay down to sleep. I'm just resting in the lazy boy chair now. I'm going to sleep in my lazy boy today. I'm kind of worried that I'm having another clot. I'm worried that the drugs they have me on don't work right.

Today when I went to have a blood test the doctor told me to have she hadn't put in the work. I got on the phone and yelled at their answering machine. I feel bad about yelling at the machine but I'm also so scared. Every time things start to go well something happens and I go spiraling out of control. I'm scared.

Test, Test, Test

So more tests and more pokes. I get more blood taken today. Yet, I'm actually upset by the lack of tests. My doctors run out of tests. She doesn't know what my problem is. She doesn't know and she doesn't want to figure it out. She doesn't want to know cause to her it doesn't change the outcome. She doesn't understand that I wont keep up with her treatment plan without a diagnosis. I wont give myself a shot every day for forever without a diagnosis. I need a diagnosis. I need to know. Now, I need to sit and wait for august to come so I can convince her that she needs to do more test. That or I find a new doctor. A new doctor. A new doctor means starting from the beginning all over again. I've been doing this since July. I thought we were good by August of last year. I was on a treatment plan and I was stable in my levels. I thought we were great. Then one day I woke up back in the hospital with the same problem again. Again, I had more clots. I can't just live everyday on a plan that may or may not be treating me correctly. I need a diagnosis. I need to know why. Doesn't everyone deserve to know why?

The Land of the Unknown

We need to talk about sex in this country. We have screwed up laws about teaching only abstinence in the class room. Sex is fun and we expect our teenagers to avoid it because a teacher or the church says so? I don't think so. Hell, most of us can't even avoid the chocolate cake with to many calories. When I was 17 my high school boyfriend asked me to marry his and I said yes. We didn't wait to have sex until the wedding night. I believed him when he said you can't get pregnant if you have sex in the water. I ended up pregnant, then I ended up in the courtroom, and then in an abortion clinic. All because people don't talk about sex in America.

Now I'm 33 and I'm 10 days late. I don't know why but I now know that a pregnancy test can incorrectly test for up to 14 days after your menstrual cycle was due. So, now I'm debating between buying a test and peeing on it tomorrow and waiting until the 14th day is up and doing it then. But I didn't know any of that until I started looking it up. We don't talk about sex but we get all upset about the mistakes kids make cause they don't know.

So here are a few tips
*If you are on the pill antibiotics make them less effective.
*If you are using and IUD and it pokes your counterparts penis the wires may be to long. Talk to your dr about trimming them.
*You can get pregnant if having sex in water.
*the rhythm method is only 75% effective with the correct information. If you're not really aware of your body it could be worse.
*Condoms are only 99% effective if worn from start to finish. They can also be easily damaged by fingernails.
*If you have any questions call your doctor. The internet is not always right.

You Can't Ask That

I'm a heavy girl. I'm over weight and I know it. You are not allowed to ask any woman for any reason if they are pregnant in anything other than a doctors office and then only if you're a medical professional. You are not allowed to ask your waitress. You are not allowed to ask the cashier at the store. You are not allowed to ask anyone no matter how you ask them. If the person next to her is talking about how wonderful her pregnancy is don't turn to the woman next to her and say so when are you due. It's just wrong people. Specially when the woman you're telling is not pregnant.

They Give Me Pills for My Pills

So you know the problem. This thing you gave me to cure me has caused x,y, and z. The problem is that their solution is to cover up the side effects with other pills that can have an x,y, and z of their very own. So my doctors have me on AriXtra. This is weight dosed. I've been trying very hard to work out all the time and so I've been losing fat. As I lose fat I get more symptomatic. My doctor doesn't want to switch my meds every time I get symptomatic so she give me scripts for other drugs to mask the symptoms. The AriXtra keeps my blood from clotting. It also makes me nauseated, light headed, gives me headaches, and diarrhea. I know probably TMI. Sorry. But supposedly most of those aren't side effects of the drugs. However, when you fix the dosage they go away so I don't see what else they could be from. So she want me to take 3 other drugs to mask the side effects of the first one. I have found that ginger helps with nausea. Other than pills I don't know what else I can do for them. I'm tempted to stop working out just to put on weight just to lose the side effects.

Pain - Is it good or bad?

One thing my father said when I was growing up was Pain lets you know you're still alive. It was not a very positive thing to say when you're 7 but it wasn't untrue. But so many other times people are unable to answer my questions about pain. Is this pain a good pain? Does it mean whatever I'm doing is healing the problem? Does it mean stop whatever you're doing right now? Stop cause you're doing damage? Is the pain a result of an old injury that's still healing or a new one that I should be seeing a doctor about? Does anyone have the answers?

Rinse and Repeat

While most of us don't actually follow the instruction on the shampoo bottle our illnesses do. My illness sure as hell does. We all have good days we all have bad days but some days you think it'll never get better. I know I am starting to think I should have just let them remove my right lung but then I'm sure I'd have some other kind of problem. Of course, I also have the same problem as yesterdays post. I sometimes wonder if my doctor is even worried about me. One day it feels all better, the next it feels OMG awful. If I get out of breath it turns into a horrible problem the next day. What self respecting 33 year old can't go up and down the stairs for fear of being paralyzed with pain the next day?

File or Face

If you ever have to see a doctor you'll probably come across a doctor who doesn't see you. Doesn't realize they are in front of a patient not a medical case file. They don't see you. If you see doctors in specialties you're more likely to come across to run across this. If you have something rare you're even more likely. It sucks. It's awful.
Here's a list of things you can do:
1 - When the doctor is in the room you can ask them to sit down.
2 - You can bring in a list of all your questions with you so you don't forget any when the doctor is trying to get on with his/her day. Don't worry if you're list is 5 pages long. Keep asking until you're satisfied. If you don't understand ask them again and again until you do.
3 - You can ask to speak with the Doctors Nurse Practitioner for fine details.
4 - You can ask the doctor to look at you when you're speaking. Make sure they realize you're a person.
5 - remember you can always find a new doctor. It may not feel like you can but it is an option.

For those doctors out there who are very very busy remember the person in front if you is scared. They don't understand what's going on with them. They really just want you to look at them and tell them that you're there to help. You want to help them. You're not just interested because they have some interesting problem. You're interested in them. Please don't run in say everything will be fine and you're not worried while they're vomiting on their shoes. They're worried.

Quality of life vs Quantity of life

My doctor seems to be very concerned for the quantity of my life. Normally I find this an important quality in a doctor. I want doctors who want to keep me alive. My doctor is however unconcerned with the quality of my life. She doesn't seem to care that I feel sick to my stomach, light headed, and I have the runs. She said yes my dose was showing up as high but she wasn't concerned. WTF I called and had a blood test so that if the meds were off they could be adjusted not ignored. I have felt on the edge of vomiting for a week and the answer is don't worry I'm not concerned. Go to hell. Plus she left this she wasn't concerned message on my voice mail after her office was closed and she wasn't available again til monday. WTF

Alone in my own head

I'm very good at never letting myself have enough time to think. I almost always have the television going. I'm always on the go. I always have things to do. When I go to bed it's usually because I've driven myself until I've passed out on the couch first. I think that I'm a nice person and I can't think of anything particularly awful about myself. Yet I don't like me. I don't know why. So when I go to bed before exhaustion hits and I have that moment before I fall asleep where I can reflect on me. In that moment I'm alone in my own head and I don't like being there.

Becoming Mortal

I have always been sick but I've always been strong. I wadded into bar fights to break them up when I was in college. I did competitive judo when I was in my twenties. While I knew I was mortal I didn't feel mortal. I didn't think anything could really hurt me. I could hurt but it would end. Now I worry I'm dying every day. I want to have a kid with my husband and he also worries I might die any day. He used to think I was immortal (not literally). Now he worries about me. He doesn't like me driving at night. He doesn't sleep well if I'm not in bed with him. He worries about me and I can't make him not worry. I want to be immortal for him again. I can't just join him in bed every night knowing if I'm in the other room he wont sleep as well. I don't like the look in his eyes when I say I'm going to be doing something he thinks might be dangerous.

My husband is a wonderful man. He does housework so I wont have too. He makes sure I'm safe. He worries about me. I want to be a wonderful wife that does everything for him and I'm mortal.

I want to be immortal again.

First Post

This is the first post in my self pity blog. I don't want to torture my friends with my wallowing any longer. I don't feel good. I never feel good. Even if my body is whole my spirit is flawed. My body is rarely whole.

I should probably give some back story. I'm sick. I've been kind of sick most of my life but I was always strong. I was immortal until July 3rd 2010. About 6 years ago I had heel spurs. My heel spurs didn't just go away like they thought they would. Eventually a Dr took them out and for a bit they got better but then suddenly they got worse and swollen. The doctors don't think this was the cause of my problem in July but I disagree. See on July 3rd 2010 I almost died. A massive pulmonary embolism lodged itself in my right lung. It was hard but I managed to live. I went on drugs which was a big to do cause I'm heparin resistant. A few months later I had two more pulmonary embolisms even though my warfrain levels had been therapeutic. So we played with more meds and they put me on lovenox which worked well for a bit. It made me very sick after awhile. nausea, diarrhea, vomiting, and dizziness. So they switched me to AriXtra. It was going well lately I've had nausea and dizziness again.

So that's what happened. Now here's why I'm writing this. Sometimes I wish I hadn't lived that night in July. Sometimes I wish I'd died anyway. Sometimes I think that it isn't worth it. And now cause I can't seem to get happy I'm losing friends. Apparently 7 months means I should be happy and bouncy even though I feel like I might have to go vomit at any minute. Apparently they have issues too and even though they haven't shared them I should know they can't handle my pain.

So here I post. I post to write things down and get them out without having my friends feel the need to read it.