Uterus, be gone!

Hello out there in internet land!  Just popping by to give you the latest.

For about a year and half I've been dealing with endometriosis.  Its a condition that causes uterin tissue to over grow and grow in places it shouldn't.  This overgrowth aggrivates nerves and is VERY painful.  A few things were tried (hormonal stuff) that didn't work so I was sent of to a doctor who specializes in pelvic pain.  This doc tried one more hormonal treatment called lupron.  It was great!  Wow!  No pain at all after I had been on it for a couple of weeks.  This is not a medication that can be used longer term so the hope was that after three months of it the endo would be beat back enough that my regular birth control could keep it in check. 

Sadly, that did not turn out to be the case.  Within six weeks of stopping the lupron I was having pain again.  The specialist that I saw told me flat out that she was so concerned about my CF being an issue that she would not operate on me, which is what I would need to deal with the endo for good.  Uhg.

Right about that time my mom was diagnosed with ovarian cancer.  She was sent to Seattle from eastern Washington for her surgery.  Mom is going to be fine, her cancer has a 95% cure rate with surgery alone!  While mom was here I met her surgeon and he seemed fantastic, as did the rest of the staff who took care of her at the hospital!

When things had settled down a bit in my life I marched into my general practitioners office and asked for a referal to mom's doctor.  After listening to my reasons for wanting it my doc put it through!  A couple of weeks later his office called me and was ready to schedule surgery the following week!  While I was very impressed by that I told that I needed some time to get this organized.  So it was scheduled for the second week of October.

Well, last week I had my total hysterectomy!  I no longer have a uterus, ovaries, or felopian tubes and this is just fine by me!  I spent two nights in the hospital with wonderful nurses who were only concerned for my care and comfort!  They brought a vase for the flowers that someone gave me, they offered my mom coffee and juice, they made sure that my pain was under control and that I was eating.  Seriously, I have never had a better hospital stay!  There was no worrying about getting my meds correctly and on time, the nurses would just magically appear with the right thing at the right time.  Someone came right away any time I needed help with something.

I am now recovering at home with my dad taking care of me, and the cat of course.  I'm almost off of the heavy pain meds entirely and getting around pretty well.  Dad will be going home on Saturday but after that I have tons of friends that are willing and able to help me when I need anything!  It seems weird to say that the most invasive surgery I've ever had has been one of the easiest to deal with, but its the truth!

Summer, be gone!

Sorry for the lack of posts.  This summer has been, in a word, hell!  I've had to take a step back from some things (this blog for one) in order to deal with others. 

At the beginning of the summer I went on 3 weeks of IV antibiotics.  That was rather uneventful which is always good.  It was, as always, exhausting and painful but nothing unusual happened.

Right as I was finishing that up my mom was diagnosed with ovarian cancer.  SCARY!  My parents came to Seattle for her surgery because they live in East Bumblefuck.  Before the surgery they didn't know it was cancer 100% even though the surgeon was pretty sure.  While mom was under they did a quick test on the tumor and, yup, cancer.  So they opened mom up some more and poked around looking for more tumors.  They didn't find any, YAY!  The tumor was about the size of a grapefruit and had just started attaching to her pelvis.  They dug out a chunk of her pelvis to be sure they got rid of that.  The plan was for mom to have six months of chemo.

It took about another week for the full pathology on the tumor to come back.  It turns out that they caught it very early, YAY.  It was also a very rare cancer that when caught early does not require chemo, SUPER YAY!  So mom doesn't have to deal with any of that mess!

Right as mom was getting this awesome news, word came down that a good friend of mine who had been dealing with breast cancer for a year and a half was stopping treatment.  She passed away on August 1st.  This was very hard for me.  Lisa was such a good friend and all around amazing person.  She was only 34, much too young for this!  The unfairness of it was almost too much for me.  Of course, there was the relief that she wasn't suffering anymore.  However when someone dies we're always a little selfish in that we just want them back with us. 

Not too long after Lisa died I had a dream that I got a tattoo of a pink daisy at the top of my right boob.  Pink daisies were her favorite flower and her cancer started in the top of her right breast.  I knew right away that this will be my next tattoo.  I'm currently shopping for an artist to do it.

The week after Lisa's memorial service I had to go on IV antibiotics again.  I only made it two months between rounds.  That had me pretty down for a while.  Now I'm starting to feel like my MAC might be back too.  I'm waiting on test results for that.

One of my CF friends passed away last week.  This is always hard.  I wasn't super close with him and I think, still a bit numb from Lisa's passing so it hasn't really hit me yet. 

So, as you can see its been a rough summer.  There have been some good things too, but right now I'm still in a place where the bad is easier to see.

Internet Dating 101

Internet dating.....where do I start?  Its clearly a part of life these days.  Its not going anywhere.  However; there seems to be a disturbing lack of etiquette!  So, I'm going to outline some things that should and should not be done based on my experience!

1: Read the profile of the prospective date.  All of it.  Bonus points for actually retaining some of the information included in it!  If you have trouble retaining such things then revisit the profile as needed.

2: If you are interested in the person send them a message that includes some information about yourself.  "Hi" is not sufficient!  Extra points for paying the person a compliment.

3: Don't send a vegetarian a photo of your barbeque covered in chicken legs (someone actually did this to me!?).

4: If, during the course of the electronic conversation you feel that you are not clicking with the person, just say so.  Don't just disappear off the face of the earth.

5: If someone tells you that they aren't interested then don't message them again.  You will get blocked.

6: If you progress to the point where you would like to have a date with someone, for the love of Jeebus don't stand them up.  You are an adult, act like it!  If you can't make it for some reason then call the person.

7: Do not start calling the person "hun" or "baby" before you've met.  Don't start with that before you're actually seeing each other on a regular basis!

8: Always meet the person in a public place for at least a few dates.  Note the word MEET.  Do not offer to pick someone up at their place or give them a ride home.  Creepy.

9: Can we please do away with the bathroom mirror pics and duck lips?  Thank you.

10: Do not send unsolicited pics of your genitalia.

11: Do not ridicule anything in my profile or try to change my beliefs on things.  Instant block.

12: If you really want to date me, act like you're interested in ME.  Yes, I want to know about you but you don't need to make all your messages about how wonderful YOU are.

13: Have a picture that accurately represents what you look like.

14: Be honest.  I don't need to know every detail of your life but "fudging" things is lying.  

I will add more as it comes up.

/rant

So even though I finished two weeks of oral antibiotics a week ago I'm not feeling so hot.  I called today to ask for IVs.  I just got off the phone with the doc.  We're running out of options of things to treat me with.  Wonderful.  My options are : immipenem or merropenum (both of which are famous for lowering the thresh hold for seizures and I had a bad reaction to merro in the past), tobramycin (which they almost never use on me because I have some minor hearing loss that I doubt is even related), zosyn (which I had an allergic reaction to last time so it would require I get desensitized to it in the ICU), or one of the cefs (ceftaz or cefipime).  So I'm going on ceftaz, cayston, and oral cipro.  Joy.

The doc acted like he was listening to my concerns but then just blew them off.  I just....uhg!  I have a track record of going on and off IV antibiotics when they don't take a chance on them with me.  I'm supposed to go to Oregon in a month.  I don't want to be doing this back and forth shit while trying to take a trip too.

I want to move to a place that has doctors who are willing to be a little bit risky if it means I will do better!

/rant

My Invisible Illness

Here are 30 things about my invisible illness that you may not know:

1. The illness I live with:  cystic fibrosis
2. I was diagnosed with it in the year:  1981
3. But I had symptoms since: 1981
4. The biggest adjustment I’ve had to make is:  going on disability.
5. Most people assume:  I'm very non-functional.
6. The hardest part about mornings are:  breathing treatments.
7. My favorite medical TV show is:  ER.
8. A gadget I couldn’t live without is:  my vest!
9. The hardest part about nights are:  more breathing treatments!
10. Each day I take 30+ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have had great results with massage and acupuncture!
12. If I had to choose between an invisible illness or visible I would choose: invisible.
13. Regarding working and career:  can't do it anymore.
14. People would be surprised to know:  I wouldn't give up my disease if I had to give up everything it has taught me.
15. The hardest thing to accept about my new reality has been:  this has always been  my reality.
16. Something I never thought I could do with my illness that I did was:  live on my own.
17. The commercials about my illness:  there aren't any.
18. Something I really miss doing since I was diagnosed is:  I don't feel like I've missed anything.
19. It was really hard to have to give up:  sports.
20. A new hobby I have taken up since my diagnosis is:  doesn't apply.
21. If I could have one day of feeling normal again I would:  I've never felt normal, I wouldn't know what to do!
22. My illness has taught me: what is important.
23. Want to know a secret? One thing people say that gets under my skin is:  you're so thin! 
24. But I love it when people: treat me just like anyone else.
25. My favorite motto, scripture, quote that gets me through tough times is:  "This too shall pass."
26. When someone is diagnosed I’d like to tell them:  Its not the end of the world!  Life is wonderful!
27. Something that has surprised me about living with an illness is:  I don't know any other way to live so: NA.
28. The nicest thing someone did for me when I wasn’t feeling well was:  house work.
29. I’m involved with Invisible Illness Week because:  I have 3 invisible illnesses!
30. The fact that you read this list makes me feel:  hopeful that maybe you understand things a little more.

*face palm*

I seriously cannot believe that I did this.  I started oral antibiotics last week and at the time I had a few days worth of my pills left in my pill organizer.  I went through those but never bothered to refill it because sometimes the antibiotics and my vitamins upset my stomach.  Well, my antiepileptic usually lives in its little pill pod waiting for its turn.  I, uh, forgot about.  For three days.  Big surprise, I had a seizure yesterday.  I think I still had enough in my system to make it a smaller seizure than my past ones.  I wasn't completely out of it all day long like in the past. 

When I woke up from my long nap my laptop was on the floor upside down, the bathroom door was closed (I never close it because the cat's litter box in there), and I had hit my on something at least twice.  I have a couple of sore spots on my forehead and the top of my head.  I don't remember doing any of this but the cat certainly didn't do it! 

I called my doctor but since this happened because of human error, not breaking through my meds, they aren't going to change anything right now.  I'll have a clinic appointment on June 1st where I'm sure I'll get scolded.

Vegan update.

This vegan thing ain't so hard!  Today I embarked on a quest to Whole Foods for vegan noms.  I got some veggie burgers, "cheese", "mayo", and "bacon" and made myself a yummy cheese burger when I got home.  A vegan friend introduced me to Veganaise, a vegan form of mayo.  Its great!  It looks and tastes just like regular mayo but it doesn't have eggs.  The same friend also pointed me toward Smart Bacon.  Cooking this stuff will probably involve a bit of a learning curve but it wasn't bad.  Even the cat liked it and the chunk of Boca Burger with "cheese" that I accidentally dropped on the floor.

Tomorrow will be my first adventure with milk substitutes.  I got a soy milk and an almond milk to try, also a soy creamer for my coffee.  Stay tuned for how those test out!