Tuesday, November 30, 2004
Wednesday, August 25, 2004
This is when I told him about the blogland discussion a while ago about knowing when enough is enough. I said that I am not one of those people who will try to get pregnant until I drop dead or we get divorced. If I don't have T then the rest of it doesn't mean as much to me. He comes first, WE come first. (Once I am pregnant or the children are here and we are parents then they become OUR #1 priority, until then, the marriage gets top billing.) Then he said "whatever it takes" is what we will do to have children. *groan* I thought he meant IVF with ICSI and PGD, etc. No, that's not what he meant. He said if we come to a fork in the road and we need to make a decision between future treatments and adoption, then we move on to adoption. The adoption would be the necessary means. He considers it just another means to and end, which made me so happy I can't even tell you. He doesn't get it all the time, how much the fear of TTC has been a cloud over my head for the last 11 years. He doesn't know all the tears that I have cried at the thought of the struggle I've seen ahead of us. I've cried about things I haven't gone through yet, because I have seen those things in my future. Now I'm at the edge, about to jump in with both feet, my eyes are closed, I'm holding his hand, and up until now I didn't know if he was willing to jump with me. I think now that he is, where we land, who knows. I think the road will be a bit rougher than he thinks it will be, but we're making the trip together.
Monday, July 12, 2004
I get this pain on the right side of my abdomen which feels like it may be my ovary but I'm actually not sure if the placement is right. It feels like a pressure, like the ovary (if that is in deed what I'm feeling) is full to bursting with both air and fluid. It just feels swollen to the point where it may burst any minute. I can feel it both in my abdomen and in my lower back, as if there is a rod that goes straight through me. All one continuous pain.
So here is the sick and wrong part...
I fantasize about having a large syringe-type needle which I could stick into my abdomen, right into that ovary and first let out the air in a small "Pssstttshshshshshshsh" sort of way and then drain out all the fluid. This sounds like it would actually feel good, like relief. I'm sure those of you who have gone through injectibles or an amnio will think I'm a complete moron for actually day dreaming of poking my tummy in this manner, but you have to understand that this seems to be the most direct and quite honestly the only way to relieve this pressure.
Ya gotta love Stage I Endo when you feel pain every day and your doctor looks at you like you're bonkers because there is very little to show for it once she gets you on the operating table. Excuse me for not backing up my pain with any actual physical evidence. My bad. Why couldn't I be one of those Stave IV Endo people who don't feel any pain? (It is strange how this disease does not correlate severity with pain.)
So, now you all can go about your days thinking I'm a freak...and possibly a masochist, and be glad how very normal you are compared to me. Just wanted to make you feel better about yourself anyway.
Thursday, June 10, 2004
My car was in the shop today getting new brake pads and rotors installed. This required me to take my husband to work this morning and leave him stranded while I drove his car to work myself. He was able to get a ride home with a friend after work where he would wait for me to get home and we would go pick up my car from the garage. Sounds simple enough right?
As I sat down at my desk this morning with my first cup of coffee (decaf for those of you who are keeping track) I powered up my pocket pc to see what was on the schedule for today. I realized then that I had completely forgotten my 5:30pm massage. This was a problem. There is no way that T will remember my standing appointment (every other Thursday from 5:30 to 6pm) especially since I had forgotten it myself. I would have to call him to see if he wanted me to cancel or just wait until later in the evening to go retrieve my car.
At lunchtime it occurred to me that not only had I not called T about the afternoon scheduling conflict, I had also forgotten to call my Tupperware lady about a couple pieces I needed to fulfill an order from the book party I had hosted a couple weeks ago. Damn. I have to remember to do that.
Sometime around 3:00 I realized that I still had not called T and immediately did so. His response was "So". We decided that I would go pay for the car right after work, go get my massage and we would pick up the car later in the evening. He also reminded me to put gas in his car since it was getting low. OK, good we have a plan.
Around 4:00 I got to thinking that there may not be time to get down to the garage and then out to my massage in the 30 minutes between quitin' time and my appointment time. hmmm. Maybe I should leave a few minutes early to give myself that extra time, 4:40 should be good. Great, that's what I'll do.
At around twenty after 4:00 I decide it is time to let my boss know (whoops, I mean ask him) that I wanted to leave a early this afternoon, say in about 20 minutes or so. No problem. Whew! So that's all set. (Maybe I'm not so bad at this after all)
So, at 4:40 I hit the road and get to the garage and pay for my car. I asked if they had taken the old car batteries out of the trunk that T wanted them to dispose of, no. This question also reminds them that they were supposed to realign my headlights which have been whacked out ever since November of 2001 when I hit a deer. The passenger headlight was replaced but not aimed correctly and I've just put up with it ever since. They can take the batteries and fix the headlight right then while I wait if I would swing the car back around in the shop. Ok, this shouldn't take that long, right? It didn't take long actually, I was still in good shape. I could definitely get to my appointment by 5:30.
I pull my husband's car back out onto the road and the low fuel light comes on. Oh No! When this thing is empty it means it, my car you can squeeze out a few miles on fumes but not his Firebird. So, I have to stop for gas on the way to the massage. How long does it take to fuel a car, 2 or 3 minutes? That shouldn't be a problem. Except I got stuck at every red light between the garage and the gas station. Stopped at one of these lights I think maybe I should call K (massage therapist and fellow Endo sufferer) and tell her I'll be just a couple minutes late but I'm on my way. I reach for the phone and realize that I'm down to my last bar on the battery. I could probably dial her number before it quit. If only I had grabbed the phone charger out of my car while I was still at the shop! I returned the phone to my purse and said "shit"!
All fuelled up and ready for my massage and now having to pee really badly I headed off trying to think of the quickest way to get there and also the best way to explain a)why I was late and b)that I wanted her to wait a few more minutes while I relieved myself before we got down to business. I was stopped at a few more red lights which gave me time to swear a little more and also realize that though this is a standing appointment to which I am rushing, neither one of us had confirmed the appointment this time. hmmm. I hope she's there.
I finally pull onto the street and search the street and driveways for her car. (She does massage out of her parent's house so they can watch her daughter while she's working. They just moved last month and this was only my second time going to the new house.) I think I picked the right house but I didn't see her car anywhere. I check the clock. It is 5:40. Shit. Was I too late? Did she get a ride from someone else? She's had some issues with her dad lately, I wonder if she's not doing massage here anymore. She called me last time she had to reschedule, she didn't call me this time. Did she wait, decide that I wasn't going to show and leave early? Was 10 minutes fashionably late or a no show? I was thinking that it just required extra apologies and maybe the time deducted from my massage. Well, she wasn't there, according to my visual search for her car and I still had to pee and I still wasn't sure she remembered and I really didn't want to go knock on the door and ask if K was home. If she wasn't and I thought she was supposed to be that would make her look irresponsible to her parents and not help her situation with her dad. Shit.
I have to pee. Fuck it, I'll go to the library around the corner and use their ladies room and then go home.
So, lets review the skills in which I need improvement.
1)Communication (calling those I should, confirming appointments, checking with my boss about leaving early before I actually have to go,etc.)
2)Time Management (actually using the damn pocket pc, going to the ladies room before leaving work)
3)Organization (keeping my phone charged, actually using the damn pocket pc, etc.)
Sorry S, it looks like you've got the wrong gal. You'll have to find the master elsewhere, and let me know when you do, I need some pointers.
Monday, June 07, 2004
I am not alone in my body. My torso is being used as a host for the most frustrating of parasites. A chronic, incurable but not terminal disease. One causes real pain, with real muscle cramping, real teeth clenching, real misery, real depression, real fear and real tears. It has a name which is almost impossible to pronounce when first heard and once pronounced is quickly shortened into the first two syllables simply because saying the whole word out every time would become almost as exasperating as the symptoms themselves.
This vile and unwelcome occupant of my body plays tricks on me and reminds me constantly that:
1) I am a woman, and
2) I am not a normal woman.
It is difficult to explain to others that what they assume is a normal cause and effect relationship (menstruation, pregnancy, child birth, menopause) is complicated because I have to throw in that ever-present factor of my disease. I believe, even after all the years of physical struggles that the worst effect this disease has had on me is mental. It is like being in a dysfunctional relationship only instead of a husband who is emotionally, sexually and physically abusive it is my own body doing it to me. I can’t fight it because I’m too young or the treatments would do more harm than good. It is a disease you are supposed to live with, you don’t get over it. You are supposed to learn coping skills and join support groups. You seek what understanding you can achieve from family, friends and co-workers, but unless they’ve had it, they don’t really understand, they sympathize.
My husband has always been supportive. We were still high school sweethearts when I was diagnosed and, being an extremely personal topic we didn’t discuss it much at the time. He’s always been very squeamish about medical things anyway. He holds me when I’m in pain, he listens to me when I’m frustrated and need to talk. He didn’t leave me when I told him that I may not be able to have children. He married me knowing the health insurance would be stretched to its limits. He loves me for who I am and he hates my disease right along with me. For reasons I still don’t understand he loves my body. I still get flustered and confused when he tells me I am beautiful because I don’t really believe him. It’s not that I think he is lying to me; it is merely that I think empirically I am not beautiful and he, in erred judgment, believes that I am.
I have never been at peace with my body. I remember when I was ten years old and got my first period. I felt sick all day and didn’t understand the stain on my underwear. My Mother almost cried she was so excited. All I knew was that I felt like crap and this dark brown stuff coming out of me did not look like the blood I was expecting. Blood was red and fluid. I’d seen it hundreds of times on cuts and scraped knees. This was entirely different. Mom laughed out loud. So, at the tender age of ten, I had breasts and my period, I became a woman! Let me say now that I would gladly go through life flat chested and hairless if it meant I didn’t have to put up with my constant unwelcome companion.
It is a reproductive disease. It is literally the endometrium (the lining of the uterus) in patches outside of the uterus. These “implants” can settle anywhere, on the outside walls of the uterus, on the abdominal walls, on the ovaries, on other organs, on the connective tissues in between. Anywhere they can float, they can land and make their home and feed on the estrogen my body produces. Of course, the whole point of this tissue is to shed itself periodically, hence the term menstrual period. As I mentioned before, I am not a normal woman. Not only are my periods erratic in timing, but also in nature. One could be short and light with only mild twinges on the first day; other can go on f-o-r-e-v-e-r (my longest was 7 weeks) and have heavy bleeding and intense cramping. The best part is the breakthrough bleeding. This is when you are on birth control pills but bleed anyway. Of course the pills do hinder it some, so you could get light spotting or in my case thick black sludge-like mucus discharge which won’t be absorbed by tampons or panty-liners. You simply wear them to protect your clothing and must take regular trips to the ladies room to clean yourself up before too much builds up and it spills over your Always.
Sex of course must wait until the bleeding (or sludge expelling) has stopped. It is hard not to think about it when your husband tries to remind you that you are still newlyweds and you can actually have sex during the week. Then the sad and shameful part comes into play when once again you have to explain to the man you love and desire that you are not in charge. Your body has taken over again, and you would love nothing more than to be intimately embraced, skin to skin but the disease always comes first. You could have sex if you really wanted to, but it would be a very NASTY affair. Such things are not signs of affection; they are for the depraved with a fetish for the Swamp Thing.
My chant, my mantra that keeps me going is “Take it out, I’ll adopt”! This would seem reasonable enough were I not diagnosed at the age of 18 when marriage and children were so far out in my distant future my doctor refused to discuss fertility. Now that I am married but still not seeking children I am actively taking steps to convince my doctor, or if she refuses, another doctor to give me a complete hysterectomy. Take it all and take it now, while I am still young enough to recover from it quickly. Doctors of course wouldn’t dream of this since I am only 26 and have not had children yet. What if I change my mind in the future and come back to sue them for malpractice? So, I am keeping a log of my symptoms. Writing down pain, pain relievers, describing my periods, break through bleeding and every explicit detail I can fit into those little calendar squares. I hope at the end of two years, with a lot of encouragement and maybe a disclaimer, I will get my wish. I could be post menopausal at the age of 30. This requires extra planning on my part. Heart disease and osteoporosis will be significant factors in my life at an earlier age than most women. Again, I remind you that I am not a normal woman. I am a super-woman.
I continue to hide my secret from the public. My horrible burden that I carry through life while pretending to appear quite ordinary.
Friday, May 28, 2004
I awoke from the anesthesia to hear a woman in the next bed say to the nurse; "Hopefully the next time I'm in the hospital it will be to have a baby." It was after this that I heard my diagnosis and even later that I found out what endometriosis was. I still remembered what that woman said. I don't know for sure that she had endo, I just assumed.
On the fourth of July that next month my family and I went to a park downtown to see the fireworks. There were two women sitting behind me talking about one of their sisters. She has endo and has just about given up on fertility treatments, they're looking into adoption, poor thing. -ok, so I'm paraphrasing, but that's what I remember from the conversation- I decided that I was not going to be able to have children of my own. I told my boyfriend T that I may not be able to provide him with biological children and that if that was important to him then he could feel free to walk away right then, no hard feelings. He stayed. -I love him so much-
I remember walking through the mall with some college friends, I was only 19. We went through the baby clothes section in search of housewares and looking at those cute little dresses and overalls made me tear up. I want a baby. Why can't I have a baby? I was only 19! I wasn't even engaged! I mourned for the children that I wanted to have down the road. I was the essence of self pity. At the age of 18, I declared myself infertile.
In 1994 I tried Lupron for 6 months. We had to convince the insurance agency that it was a viable treatment. Lupron was only used for prostate cancer at that time and they didn't know why a young female should get it. The irony of Lupron is that each month before you receive the Lupron shot they have to give you a pregnancy test. Each month, just because they asked the question, I wondered if the test might come out positive. This would have destroyed my life. As much as I wanted kids later in life, I knew that in college was not the right time. I breathed a sigh of relief each time the test came out negative and I received my Lupron shot. I didn't have all the side effects that other people have with Lupron. I had mood swings according to T but I really don't remember much of that time. I was in a deep depression whether from the shots or just coincidence of timing. I was a zombie just going through the motions of working, going to class and crying myself to sleep at night.
I had such a hard time recovering from my first lap that I swore I would never have another one. The gas in my abdomen hurt for a week, I was sore and exhausted and depressed and scared. In 1996 I went back to the doctor and asked for another lap. I was having daily pain and bowel trouble. I was convinced that the endo has grown onto my colon and I would need a bowel resection during surgery. This was not the case. I was still at Stage I and there was no endo on my colon at all. She did find some on my urethra, bladder and Fallopian tube (not sure which side) which she left alone for fear of harming the tissue that it was on. This caused years of anxiety in me thinking about those cells left in there growing and spreading and wreaking havoc on my insides.
I took birth control pills from 1991 through 2000. I had regular cycles as long as I took the pills and had a monthly period. I had cramps on CD 1, bled for 3-5 days and started the next pack of pills. I did this not only to prevent an unplanned pregnancy but as a treatment for my endo. In the year 2000 when T and I were engaged I went off of the pill to give my body a break. I heard a woman in my local Endometriosis Association Support Group say that she felt better than ever since going off of the pill and she was younger than me! So, I thought I'd give it a shot. I stopped taking the pills, and my period stopped too. I went without it for 9 months. I finally went back on the pill to ensure that I wouldn't have my period on our wedding day. The first period I had when it started back up again was pure agony. It felt like all the blood and all the pain that I had been missing those months were just saved up and all came out at once. I had all the symptoms of a bladder infection. I was tested 3 different times for a bladder infection, I drank cranberry juice (I HATE cranberries) and took antibiotics. The thing was, I didn't have a bladder infection, it was the endo. I tried taking the pill continuously, not taking the week off to have a period. I thought I would take three months in a row, then stop for a period and do another three months. This didn't work. I was a month and a half into the first quarter when I started spotting, not just normal spotting either, we're talking black sludge that looked like it came from the swamp thing! Gross! My first thought was that I was having a miscarriage and hadn't even known that I was pregnant. This scared the begeezus out of me and T. This went on for 7 straight weeks. I had started calling the doctor at 3 weeks to ask when I should start to worry about this. She said to double up on the pills, I did, it didn't work. She said to stop taking them and just let the period come. I did, it did, and then I went back to taking them monthly. I guess my body just refuses to be suppressed.
Finally, in September of 2002 I stopped taking the pill again. I had been spotting and break through bleeding for 2 weeks out of each cycle and couldn't stand it anymore. I read the book Taking Charge of Your Fertility and thought that I would try charting my cycles so that I could learn what "normal" was for me. T was not ready to try to conceive (TTC) at that point so we decided we could just use condoms for protection. He wasn't as scared to have sex this time, probably because we were married, had a house and we both had good jobs. We never really got into using the condoms. We've been relying on the withdrawal method since then. I read somewhere that the withdrawal method is 79% effective in preventing unwanted pregnancies, for the "normal" population. Just for the record, I'm not normal. My periods started coming late again. When my cycle was somewhere near 73 days I convinced my Dr. to give me Provera (a Progesterone pill) to bring on my period. I was supposed to take them from day 16 through day 25 of each cycle. After two months of that I was having 22 day cycles. I decided that I needed to back up the pills and take them starting on day 20 through 29. This has given me an average cycle length of 33 days. I discovered this month that I usually O around CD 19 so by starting the pills on CD 16 I was actually starting the Pregesterone before I even O'd!
The withdrawal method has been very effective for us so far. My OB/GYN is surprised by this. She seems to think that I will "try" for the standard 12 months before declaring me infertile or doing the tests to check out what the trouble might be in becoming pregnant. I will not wait a year. I will give it 6 good cycles once T agrees to TTC whole-heartedly. That is 6 months temping, BDing at least 3 times around O and coming up with 6 BFP's before I waltz into her office and demand intervention. I'll probably start with Clomid and Progesterone suppositories. After that she MAY convince me to do a couple IUI's, but this is pushing it. I'm really not inclined to spend thousands of dollars (not covered by insurance) on injectibles only to end up adopting anyway. I'll give it two years. If I am not pregnant by May of 2006 I want to start the adoption process.
But, I'm getting a little ahead of myself...
In March of 2004 I had my third lap. I am still at Stage I (Whoo Hoo!) which is a huge welcome surprise considering I've been off bcps for over a year and the endo has been left unchecked/unguarded/running rampant since then. My tubes are clear! The endo cells she left behind last time have disappeared.
She said we were all clear to TTC whenever we wanted to. T doesn't want to yet. :-( This has not stopped me from temping, and hoping that each time I O we will just happen to BD around that time. Things didn't work out last month (cycle 1) so now we are around O time of cycle 2 and we'll see how it goes from here.
Stay tuned for the next installment of ...I Hate My Body, You Would Too If It Were Yours.