Separate, But Equal

That is the message Massachusetts lawmakers relayed yesterday when they voted to ban gay marriage, but allow for civil unions in Massachusetts. The numbers were close.........105 to 92. I would like to thank my Senator Charles Shannon and Representative Patricia Jehlen for voting to keep discrimination out of the constitution. This isn't the end however. Legislators wil meet again in 2006 where this issue will be voted on again before being put on the ballot in 2006. You can read more about this at MassEquality.

So what does this mean for the marriage licences expected to be offered to gay couples on May 17th? We'll see.

Just got a call from the doctors office. Looks like is in in Puerto Rico until Wednesday. I love that he called me with all this urgency and gloom and doom a week ago.......and then goes off to Puerto Rico...and leaves me hanging. Oh well..........I will know more at the end of the week.

Massachusetts lawmakers are meeting today to discuss gay marriage in Massachusetts. You can read all about it at MassEquality. I'm not sure I'm going to be able to make it to the State House today. I feel guitly. Maybe my guilt will push me towards the State House after work. We'll see.

The Massachusetts Catholic Conference distributed an anti-gay video to parishes and was shown in some churches this weekend. One gay Catholic took serious offense to the video and professed to the community that he was gay. You can read more about it on the Boston Globe website. I am appalled that such a video exists and that churches showed it. I am a practicing Catholic....and have been involved in my progressive Catholic community for years....and I'm a lesbian. I haven't been to church in over a month. The church is doing a good job at alienating some of their best members. For the first time in my life I am really questioning my place in the church.

I have some great news. My enzymes are down a bit. My ALT is 118 and my AST is 111. This is roughly 3 times higher than normal levels. Still..this is good news.....they are going down on their own. I haven't even taken any prednisone. Maybe....if I'm lucky.....they will decide to wait and see...monitor my enzyme levels and NOT put me on prednisone. I shouldn't get my hopes up. I amw aiting to hear back fro the hepatologist with a decision about my meds.

I walked from my apartment to the T today. It took about a half hour. I walked on Friday too. I had a mini revelation last Friday. For years I have dealt with this disease.....I have had cirrhosis.........had bloodwork every few months and stayed away from alcohol all this time. Aside from that...the disease hasn't prevented me from doing anything I have wanted to. I decided that I should run with the fact that I feel ok these days. Yes I have felt a little sick to my stomach lately....and tired....but I can eat......and my being tired hasn't stopped me from going out and doing things. I'm going to make more of an effort to walk...and exercise....and enjoy life.

Waiting.....and Waiting....still waiting...to hear from my hepatologist about my bloodwork. The bloodwork will tell me if I am getting better or not...and provide some background information for my hepatologist to use when making decisions about where to go with my treatment. He mentioned steroids the other day. I'm assuming this means prednisone. Which also means......big cheeks.....acne....irritability......hunger....weight gain.....and a lack of calcium. I'm not looking forward to it. A nice woman on the Autoimmune Hepatitis listserv I am on recently reminded me to focus on the positives....my function is ok....I can pretty much do what I have always done. I need to remember this.

I also have to say that response from my family and friends has been great. Thank you to everyone who has called or emailed to show their support. I really appreciate knowing that you care. I promise I will be in touch soon. I have been a little distracted.

I spoke with my hepatologist the other day. The biopsy was not inconclusive this time. It revealed that I have moderate swelling in my liver and that I have between stages three and four scarring. None of this was really a surprise. I knew that I had permanent damage from the severity of my first flare up. I had been healthy for so long....I had just sort of forgotten about it. I had more bloodwork done yesterday. My hepatologist told me that I will probably need to be on prednisone. I am optimistic because the inflammation was caught early on and my doctor is moving quickly.

Had a nice weekend. Went to a cheese and ale tasting. I didn't drink the ale. I had my cheese with VitaminWater. Saturday we had lunch at Bob the Chef's. We tried to go to the Museum of Fine Arts, but it was closed. Spent time with my mom and step-dad....and my father on Sunday.

Still no word on the liver biopsy....I should know something tomorrow. My side is feeling better. I've noticed a slight lack in appetite and that my blood sugars feel low if I don't eat every few hours. I have been feeling more tired than usual. I had physical therapy today. My Physical Therapist said I have swelling in my left ankle. I'm hoping I will have some ankle relief soon. I will be starting a new anti-inflammatory medication for my ankle tomorrow. Mom had a UTI last week. She ended up having to go to the emergency room. She was there for six hours. YIKES! Mom says she is feeling better.

I was supposed to get the results of my biopsy today. No such luck....they called to tell me that they didn't have any results for me. They suggested that I call back on Tuesday.

I decided that the piece of liver they took from me on Tuesday was more like angel hair pasta or spaghetti....not dentle floss.

Happy St. Patricks Day!

I had my biopsy yesterday. I arrived at the hospital at 9:30 a.m. I was put into a room and got an iv....and changed into a beautiful johnny that they provided. I was rolled down to radiology at 10:45 a.m. and prepped. They did a pre-biopsy ultrasound and gave me some demerol. I learned that not only is my liver small, but that my gall bladder is in a different place than most peoples. The marked the point of entry with a plastic straw and gave me some lidocaine. For some reason I was thinking that with all the relaxing meds and numbing injections that I wouldn't feel any pain. I was wrong. Frankly it felt like they were jabbing me with a big needle when they took the biopsy. I didn't see the needle, but I hear it was at least six inches long. They showed me the piece they took out of me. It seemed awfully small for the amount of pain I went through. It was probably an inch long.......and a little thicker than dentle floss. It was all red. I was wheeled up to my room at 12:00 p.m. I was on my side for an hour. I had some discomfort so they gave me a shot of demerol. My blood pressure was low...so they gave me some iv liquids. I ate a chicken salad sandwich and some graham crackers. I went for a walk at 2:30 p.m. and I was out of the hospital by 3:00 p.m. On the way home I managed to vomit twice...gross huh? I called the doctor....looks like it was a response to the demerol. I got home and slept for a few hours. Eventually I woke up.....ate some yummy onion soup and watched A Mighty Wind. I was in bed by 10:30 p.m.

I am working from home today. I have some pain in my side. It feels like I got punched really hard in the liver. Sometimes I get sharp pains when I breath deep. I took the bandaid off the entry site a few hours ago. It looks ok.

I was just eating lunch with some co-workers and the locally produced Community Auditions talent show came up. Does anyone remember this Sunday morning television show, from the late 1970's, with Dave Maynard as the host? "Star of the day......who will it be..." I always wanted to go on Community Auditions...it never happened.

I wrote an email to the Autoimmune Hepatitis listserv introducing myself. Everyone was really nice and supportive. I think it is a good group.

I have my liver biopsy tomorrow. I cannot eat after 9:00 p.m. tonight. For those who do not know the procedure...... I will go to the hospital an hour and a half before the procedure. I will get an iv.....and some medicine to relax me. Bloodwork will be done. Then I will lie on my left side and the outline of my liver will be marked. They will numb the area with a topical anethetic...such as lidocaine. The will use an ultrasound machine to guide them. The procedure should take a half hour. I will lie on my right side for a few hours...and then they will send me home.

This is the first time I have had an ultrasound guided biopsy. My first biopsy was a transjugular liver biopsy. That was awful..and took about four hours. They put a tube into jugular veing....into my vena cava and then snaked it into my liver. They put a needle through the tube into my liver and took a piece. The last biopsy I had was a regular old blind needle biopsy. It literally felt like someone was jabbing me.

I hear this ultrasound guided biopsy will be a breeze in comparison. I hope so. I am planning on working from home on Wednesday. AND...I am not to do any heavy lifting for a week.

On March 11th Massachusetts senators and representatives passed a constitutional amendment legalizing civil unions and banning gay marriage. You can learn more about the decision at MassEquality.

I went to work that morning and left at noon. I went to the State House at around 1:30 p.m. and stayed until 8:45 p.m. We spent hours across the street from the State House...then more time right in front of the State House. Eventually we got into the State House around 6:30 p.m. We watched the debates on a large screen in Gardner Auditorium....sung songs on the 3rd floor and watched a little bit of the Debate in the Great Hall on the 2nd floor. I held signs that said things like..."I support the SJC Decision"..."MassEquality"......"Marriage for All Couples"....and "Don't put Hate in the Consitution." It was amazing to witness such an event. The fight isn't over yet. The convention will re-convene in two weeks.

I joined an Autoimmune Hepatitis Listserv yesterday. I am really glad that I did this. I have never really known or spoken with other people who have my disease. I hope to learn lots from this group...and maybe help someone else.

I'm getting ready to leave work to head over to the State House. My friend Mary works across the street and she said it s crazy over there right now. I just got an action alert email from MassEquality saying that they need as many people and as many voices at the State House as possible. They say they wil be there until a decision is made about gay marriage in Massachusetts.

I only have a second. Works is very busy and I am trying to get a lot done today. Went to physical therapy this morning. Had fun at a birthday party last night. Mom is having her staples removed today. I'm taking tomorrow afternoon off of work to spend time at the Massachusetts State House. Tomorrow is the big day on Beacon Hill. Lawmakers will vote on a proposed amendment to the Constitution. This amendment would put me in a separate, but equal category. This is apalling. If you haven't contacted your Senator or Representative yet...please do so. This is a civil rights issue.....and I would like to keep mine.

I went to see my hepatologist about two weeks ago. I had blood drawn and I scheduled a liver biopsy for April 2nd. He just wanted to take a look at my liver...it had been a long time (over eight years) since my last biopsy...and frankly he thought that things were probably much better.

Last week I got a call from my doctors office telling me that I had elevated enzyme levels and that I should move my biopsy up to a closer date. Here's a little liver lesson for the day. When your liver is hurt it makes enzymes. The higher the number of enzymes...the more liver inflammation you have. There are two tests they do to monitor the enzyme levels. They are the ALT and and AST. Currently my ALT is 165 and my AST is 133. This is four times the normal level. To put things into perspective....when I was very sick 11 years ago my enzymes were running into the thousands. It could be worse. The wierd thing about this is that I have been taking the same amount of medication for years and never had any problems. My last flare up occurred five years ago and it only happened because they had cut my dose in half in hopes of taking me off of it. I was back on my normal dose within a month and all was well.

I rescheduled my liver biopsy for Tuesday March 16th.

The first time I got sick was a surprise to everyone. I only got so sick because I didn't know I had this disease and didn't know what to look for. Fortunately this time they caught it early and the doctors are all over it. I don't expect it to turn into anything near as severe as that first time.

About my Mom....she is home from the hospital. Her visiting nurse came on Sunday. She has a telemedical appointment today. AND...she is seeing her surgeon on Wednesday. All the samples they took out of her on Monday were clear of cancer. Looks like she has some adhesions (scar tissue)...which might cause a small problem. She has pain and is trying to adjust......but she also seems positive and optimistic about the future.

Happy International Women's Day!

Oops...I made a mistake. My mother's telemedicine appointment is tomorrow....not today.

I just got back from physical therapy. My physical therapist used ultrasound to bring blood flow to my ligaments to promote healing.......I got a massage....and exercised my ankle and foot. I am feeling encouraged by all this treament.

The following email came to me from my friend Michelle. Make a call and make a difference!

MassEquality wants you to make the call to your legislator again on Monday [TODAY] in support of same-sex marriage. The Constitutional Convention reconvenes on Thursday, so we want to have as many contacts as possible.

Tell them:
1. That you are their consitutent~ they're getting a lot of calls from loonies out of state.
2. That you support the Goodridge decision and oppose discrimination in the constitution.
3. Any personal story that will help sway them like: I'm straight, but support my friends and their families; I'm gay and civil unions will HURT my family because....; or I'm a Catholic and I support everyone's right to marry and oppose discrimination. Things like that! Or, I'm not a Catholic and I don't want
to live in according to the rules of someone else's religion!

If you have any friends or family members that you can call and ask them to call their legislators, too, that'd be great!

They can find out who their legislator is (and how they voted last time... in case you need to thank or encourage them) on MassEquality or at Where Do I Vote.

Please spread the word, and thanks! It's gonna be a busy week!

Mom was disharged from the hospital at around 2:30 p.m. on Saturday. She managed to hold down two meals...and yes pass gas......so they let her go home. I went over to her apartment that afternoon to see if she needed any help. She didn't need any help really. I spent some time watching her sort thourgh her mail and watching tv. I spoke with her yesterday and she told me that she had had incredible pain on Saturday night and almost went back to the hospital. fortunately the pain went away and she did not end up at the hospital. Her visiting nurse came yesterday morning. She has a telemedicine appointment today. Coo huh? They sent her home from the hospital with laptop. She has to take pictures of her incision with the laptop and send it to some doctors at the hospital. At 10:00 a.m. today she will log on and meet with these folks via the internet. Ah.....technology. This is an experimental thing.....we'll see how it goes.

Mom is bouncing back slowly. She had a bowel movement yesterday, but they cannot send her home until she passes gas and keeps two meals down. They took her off the iv yesterday, she took a shower today and is up and walking more. She's still not allowed ot eat solid food. Twice they have given her a liquid diet tray.......she takes two bites..and they take it away. You think the doctors would get it straight. It's like the left hand doesn't know what the right hand is doing. Argh! mom is expected to be in the hospital through the weekend.

Mom was moved up to her room at the Brigham and Women's at around 2:00 p.m. yesterday. Russ and I went up to see her at around 3:00 p.m. She wasn't as out of it as the last time she had surgery. Mom said she did not have a lot of pain...just discomfort. She rarely used the morphine drip. I spoke with Mom this morning and she said she had gone for a walk three times between last night and today. She is no longer wearing the leg air pump things....and they are giving her heparin shots to prevent blood clots. Mom had a slight fever last night, but appears to be feeling better after taking aspirin. She said she is in more pain today.

We watched the Average Joe finale last night. Please let me throw in a disclaimer......I hate reality tv...I've never watched an episode of this show ever. We only watched it because Mom asked me to tape it for her. What an awful show. I hate to ruin it for people.....but here you go....she chooses the annoying not so average hunk guy...over the sappy Bostonian.....and then reveals that she used to date Fabio.......and the hunky guys leaves her because she used to date Fabio. Is anyone else confused? Why would he leave her because she used to date fabio? What kind of twist is that? How is that a twist?

Today is primary day in Massachusetts. Make sure you go out and cast your vote for your favorite democrat.

Mom is in Recovery. I got up at 4:15 a.m. today and got ready. I arrived at the Brigham and Women's Hospital at 5:30 a.m. and met up with Mom and Russ. Russ and I stayed with Mom and escorted her into pre-op. She went into surgery at 7:30 a.m. At 10:45 a.m. we got a call that she was out of surgery. We finally got to see her for a few minutes in recovery at around 11:30 a.m. She looked good and seemed alert. Russ and I had lunch at the Longwood Galleria at around noon. We are currently waiting for her to be moved into a room. We expect her to be here for most of the week. Russ and I have been waiting most of the day in the Family Resource Room........Bretholtz Center....something like that. It's pretty nice here. They have two televisions...and free snacks...and computers...and a library with a nice librarian named Cara who is also a Simmons GSLIS alum. I should get back to Russ...and my free beverage.