Taryn

My Grandparents are Cool!

2008-07-28T14:11:00.001-05:00

I'm so excited - my grandparents now have email and I just got their address. Hopefully they will stop on by and read my blog! :)

My Dad - Surgery Update #3

2008-07-25T16:29:00.004-05:00

Just a quick note - dad is doing well. The name for the mass is: Cystic Pheochromocytoma.

I just had another crohn's flare and was in the hospital Tues 7/15 - Sat 7/19. My WBC count was high in my blood and stool but they didn't find any bacteria - which is good. I got IV Cipro, Flagyl, and steroids. They sent me home on Prednisone but luckily I'm already on a weaning schedule - I hate steroids! I also REALLY hate oral Flagyl and must remember to try and avoid it in the future at all costs!

Grammy's doctors are working on confirming that her pulmonary hypertension isn't a heart issue. It looks like she may have to have a lung transplant in the near future if this is the case - NOT GOOD! :(

My head is exploding but I did get the bills paid today - whew!

Adam and Lauren arrive on the 28th; I got Ben's office fixed up for them yesterday. Adam will be staying with us for a couple of months while he finds a house here - yes, he's moving back to Houston! As far as I know Lauren, his fiance, will be moving out here when things are more settled.

Happy belated 3rd b-day to Michael and 6th b-day to Alex! Where has the time gone???

My Dad - Surgery Update #2

2008-05-13T08:41:00.006-05:00

The Mass:
The mass was the size of a football and weighed 4-5 pounds. There was actually an indentation on the kidney where it was located. I got the example that it was like when you step on spongy carpet and your foot makes an indention. Hopefully that means that the indention corrected itself when the mass was removed, like the carpet rising back into place.

The doctor said the mass was pussy looking, like an abscess, but wasn't an abscess. Sharon got to see a picture of the mass on the anesthesiologist's phone. Apparently the anesthesiologist used his camera phone to photograph the mass; when he came to the room he showed it to Sharon on his phone. She said it was red with lots of veins running through it and looked like an organ.

The mass was 95% benign. The other 5% consists of the contents of the mass; we are still waiting on those results. The doctors had to crack at least 2 ribs to remove the mass (Dad says it was more than 2 though). His incision is on his side and is approx 10-12 inches long with 40 staples. Dad also said they had to cut the diaphram on one lung to move it out of the way so they could remove the mass.

The doctor's theory about the adrenal gland hemorrhage was wrong. The mass is what killed the adrenal gland. The doctor said the adrenal gland had been dead "a long time." (So the mass had probably been growing a long time.) I don't know what "a long time" means - months, years, decades?

Pain:
Friday, Saturday, and Sunday were really bad days for dad. I spoke to him briefly on Friday - long enough for him to say he was in pain and had to go. Then he wasn't up for talking again until Monday night. On Sunday night/Monday he finally figured out not to wait until he was in pain to hit the button on the pain pump, but to hit it as often as it will give him Morphine. Poor dad, I guess I should have told him that but it seemed obvious to me. Then again, most people aren't thinking terribly clearly after major surgery. Dad said he was able to sleep Sunday night. He woke up every 45 minutes to press the pump button but then went right back to sleep.

It sounds like most of his pain is due to his ribs, so breathing hurts. At least yesterday he was able to do his "breathing machine" (where you suck on the plastic tube to keep the ball suspended in a certain range - to keep you from getting pneumonia). He said it was a joke, i.e. he couldn't get the ball where it was supposed to be, but the doctor said that's to be expected due to the cutting of the diaphram. I'm just glad he's trying now; he refused to even try over the weekend due to the pain.

Movement:
Dad is able to sit for an hour and is able to take walks. He said walking actually hurts less than doing the breathing machine. Walking also helps prevent pneumonia so that's a good thing.

Gastrointestinal:
He is tolerating liquids and said they were going to start him on soft solids soon. He is passing gas so his guts are starting to move. This is important since you can't go home until they are working again!

Current Concerns/Issues:
Dad's pancreas is throwing off fluid like it is leaking. They have been analyzing the fluid every day. (Dad doesn't know if it is pancreatic fluid or what it is.) This is not a good thing. Currently they are waiting for it to stop. I'm not sure how long they are going to wait or what they will do if it doesn't stop, but I'm pretty sure they won't send him home as long as it's still doing this. They haven't discussed a plan for sending him home yet; Dad thought they might talk about the plan today.

Other:
Goldfarb (dad's urologist/kidney specialist/surgeon is presenting dad's case to about 60 doctors on Tuesday. I'm not sure if this is during grand rounds or what but it goes to show you that Goldfarb meant it when he said he'd never seen anything like the mass before. Boy how I wish I could be there for the presentation!

I think that's everything for now.

My Dad - Surgery Update

2008-05-08T07:41:00.000-05:00

My dad came through surgery well. The mass they removed was larger than a cantaloupe!! The good news is they were able to spare my dad's kidney - instead of removing the kidney, they shaved the mass off of it. They also had to shave the mass off the spleen and pancreas. The bad news is that they had to remove the adrenal gland because it was dead! That was shocking but might explain why my dad felt so run down all the time. I don't know if he will require any type of medication, etc. in the future since he now has only one adrenal gland. (Arguably he only had one before the operation since the second one was dead.)

The doctor said that the mass was horrible looking and he had never seen anything like it. The pathology on it should be back late today or on Friday. It's a 50/50 chance of it being cancer. So what in the world is this giant mass if it's not cancer? I'm told the doctor's theory is that the adrenal gland hemorrhaged and then formed this "thing." This thing then fed on everything causing it to grow. We'll know more when we get the pathology results.

Dad stayed in the ICU last night. He's got a pain pump (I don't know what pain medicine they are using) and an epidural. The epidural they are going to leave in for a couple days. Pain-wise it's bad that they had to cut on dad's pancreas. Apparently it influences a lot of other organs and tends to get pissed off when you cut on it, so to speak. Talk about cruel - as though dad wasn't going to be in enough pain anyway from such a major operation! Dad also said his bad shoulder was bothering him since he was on his side with his arm up over his head for the operation.

I was not able to be there for the surgery and haven't been to the hospital. Two reasons for that: 1) The truck isn't running well enough to drive out of The Woodlands - Ben drives the Honda to work.
2) My stupid health! The prednisone really got me this time. I look like the Pillsbury doughgirl from all the edema. It's terrible and painful. My doctors haven't officially declared it but basically I have Cushing's Syndrome due to the steroids. The "fix" - weaning off steroids, which is what I am doing. I can only go down 5 mg per week though - agonizing! I started at 40 mg; Saturday I go down to 15 mg. The only thing I can do is wait it out and I hate it! Anyway, the edema is so bad that if I walk much my lower back starts killing me!! I was also worried about sitting around the waiting room of a hospital with my (hopefully) depressed immune system.

I may see if Ben can take me up this weekend. That way he can grab a wheel chair at the front desk to avoid the walking issue.

Other things of note:
Grammy made it home from the hospital Monday night - yea! Of course, the only thing they solved was her pneumonia, but that's better than nothing!

My Humira is being delivered today so I will probably start it today or tomorrow. (This is in place of the Remicade which we discovered wasn't working when I ended up in the hospital in February).

That's enough info for now!

My Dad

2008-05-07T09:33:00.000-05:00

My dad is having his kidney removed today at 12:30 pm. Doctors found a mass bigger than a fist on it and think it is probably cancerous. A "pancreatic" surgeon will be present in case the mass has spread to the pancreas. Despite numerous tests, they could only see that the mass was close to the pancreas, but not whether it had spread.

He will be in the hospital for 5 days and recovering at home for 3 weeks (unfortunately, doing the surgery laparoscopically was not an option).

Please say a prayer for him!

Grammy's Pneumonia

2008-05-06T09:33:00.000-05:00

Grammy has been in the hospital with pneumonia since Friday. She's got terrible edema (although I told her she wasn't allowed to have sympathy edema!) which they are guessing might be a rheumatoid issue. Although, as usual, they aren't sure. I heard she might get released today but I don't know.

Health Update

2007-12-07T12:52:00.000-06:00

Today's slogan: "Taryn lifestyle."

This update is a combination of an email I sent on August 14th and some newer info.

There's no way to predict how I'm going to feel from day to day. I can feel pretty good & get some things accomplished one day and then end up spending the entire next day in bed. I hurt so much that I can't sleep on regular beds anymore. I have a queen size temperpedic type pad that I fold in half and put on top of whatever mattress I'm sleeping on. Chairs are not my friends; I have trouble sitting anywhere for any length of time (other than my bed) because of my neck. The now "non-existent"osteoarthritis makes my neck hurt and then I get a bad headache.

My nausea was finally under control with 2 medications but has gotten bad again. Although surprisingly I am able to tolerate the Methotrexate without a problem. For about 2 months I have been having weird stomach pain. By weird I mean that the methods (medication, positioning, etc.) I spent 3 years figuring out and successfully using for about 7 years doesn't work for it. I haven't found a medication that seems to help and instead of lying on my right side with a blanket to put pressure on my stomach, I have to sit up. Sitting up is a real pain though since when it happens, it's usually around 4 am. So I fold up a comforter and pile 2 pillows on top of that. Then I can sit next to it, so I'm sitting up, but still rest my head on my pillow. If I'm not having a severe episode then I can usually end up falling back to sleep.

For about the past 2 months I have also had no interest in food, which is really a pain when you are hungry and NOTHING sounds good. I pretty much live on Instant Breakfast and Ensure. In the evening I try to eat something solid, like a sandwich, so I don't wake up starving at 5 am. I have lost some weight because of this but not as much as you'd expect. The last time I saw the rheumatologist, he said that if I wasn't absorbing protein well then that could be a contributing factor to my fatigue/tiredness. I need to ask him if I should add some kind of protein supplement or if the Instant Breakfast & Ensure are enough.

As far as being tired, they just had me do another sleep study (my first was in 2000). They diagnosed me with RLS (Restless Leg Syndrome) and PLMS (Periodic Leg Movements of Sleep). I have not been able to tolerate Mirapex, Requip, or Stalevo. (For some reason these days I've been having a terrible time with new medications; I end up with horrible side effects! They did put me on iron - I'm not anemic but my levels were too low for someone with RLS. I talked to my rheumatologist about adrenal fatigue and he agreed that I needed to see an endocrinologist. I also need to have all my hormone levels checked again (by the endocrinologist) since we know I used to be low on DHEA and testosterone. I scheduled an appointment but of course they can't see me until February.

If I could ever get the other stuff under control, then I might be able to deal with my mental health stuff - depression, anxiety, social anxiety disorder, etc.

As you can tell I'm just tons of fun these days. Can't stay up late, can't afford to eat out or wear clothes, can't eat beef, pork, etc, can't really drink, can't sleep unless the stars are aligned just right, etc., etc.

All I can say is 12/21/2012.

Today's Slogan & Life Update

2007-06-29T14:24:00.001-05:00

"Don't worry, Taryn takes care."

That's pretty accurate - I'd say I require a lot of care!

What's new lately? Let's see. I seem to have horrible reactions to every new medication I take. The latest was Sulfazine. I developed a mild, unconfirmed case (confirmation would require a biopsy) of .Stevens-Johnson Syndrome. I'm very thankful I didn't get a severe case! (In severe cases your skin can slough off like you've had thermal burns and it can be fatal.) Yuck! As though I need another brush with death - no thanks! Despite the lack of a biopsy, my rheumatologist said I should consider myself allergic to Sulfa drugs. Great!

So, having already experienced nasty side effects with Imuran, that means I now have to try Methotrexate. It's the only one left. (I'm already on Mercaptopurine but can only take 50 mg or else my liver levels start to rise. I certainly don't need liver problems in addition to everything else!) I dread starting Methotrexate! Despite taking Zofran, an anti-nausea medication, twice a day, I still have trouble with nausea on and off. And in my mind Methotrexate = nausea/puking! Both my mother-in-law & sister-in-law are on this medication.

I'm waiting on the results of my CBC, ANA, and cortisol levels to find out if I have adrenal exhaustion. That might be the answer to why I have narcolepsy/hypersomnia - since we know I don't truly have narcolepsy! After reading the detailed symptoms list, I was like, "YES - THIS SOUNDS LIKE ME!" (I also think I have Wilsons Sydrome (low temperature) which can often go along with this.) I would love to have an answer and then hopefully a solution! However, my neurologist still wants me to do another sleep study to see if gaining weight (from the stupid steroids) is causing apnea, making me more tired. I only have to do the polysomnagram (night study), not the MLST (daytime nap study). However, it's still a pain!! I'm not looking forward to it at all!!

That's enough for today. I need to balance the checkbook and pay some bills before my headache gets any worse.

Take care and enjoy your health!

Quick Update

2007-06-29T14:24:00.000-05:00

For those of you that don't know, on October 8th I had emergency surgery because my small intestine was obstructed. They removed 18 cm of it. Upon biopsy they discovered that I have Crohn's disease. If they hadn't done the surgery, most likely my small intestine would have perforated; I would have become septic and probably died. In fact, this is probably what happened to my mom's cousin, Karen, when she passed away in 2003. It's bizare when I think how alike Karen and I probably were.

A bit more of the story is that I went to the ER on Sept. 20th for horrible stomach pain. Ben was at work, Grammy was at the dentist, and Gumby didn't answer the phone, so I called an ambulance. The ER took x-rays of my abdomen and did a CAT scan with & without contrast. (You have to drink a massive amount of contrast fluid and then wait an hour before they can do the CAT scan. It took me a couple hours just to drink the contrast without throwing it up.) All they found was a UTI. They sent me home with an antibiotic.

On Oct 4th I had more pain so the doctor called me in some Zofran & Nexium. Then Friday afternoon, Oct. 6th, I had the horrible stomach pain again. Only this time the anti-nausea medicine didn't work. After puking my guts out all night, I couldn't take it anymore. Although Ben was home I called an ambulance. There was no way I was going to sit around the ER waiting room! Once again they wanted me to drink the contrast fluid and do the CAT scan. I was convinced they weren't going to find anything, after all I had just had the test 2 weeks before! It seemed pointless and I didn't think there was any way I could drink the contrast without throwing up. Plus I was in more pain - the Morphine they gave me on this visit didn't work near as well as the Demerol I had gotten the last time. The doctor half agreed with me about the test - he didn't really think it would show anything either. It's scary to think how close I came to not having the CAT scan - how close I came to dying.

Anyway, they offered to put a lovely tube down my nose so that I wouldn't have to drink the contrast. [Does it seem strange to anyone else that to get to your stomach they put a tube through your nose, but to get to your lungs they put a tube through your mouth?] I guess the Morphine was helping some because I agreed to the tube even though I knew it would hurt. (I had a pediatric tube down my nose in 2000 when they did my sleep study. It hurt and that tube was way smaller!) So they put the tube in, poured in the contrast solution, and somehow I managed to keep it down for an hour. I'll tell you, drinking the contrast down is much better than having the contrast come back up. Yes, after one hour I puked up all the contrast. Luckily, that didn't compromise the CAT scan. So I have the test and, lo and behold, it showed an obstruction. They decided to keep me overnight - much to my chagrin with the tube in (I made them remove it after they finished loading me up with contrast) to suck everything out of my stomach.

They implied that surgery would probably be necesary but wanted to monitor me overnight first. I'm not quite sure how they thought this would help. I mean, there was nothing left in my stomach to suck out. I doubt they thought the obstruction would magically resolve. My only guess is that, as it was getting rather late on a Saturday evening, they preferred to wait to do the surgery until the following day. Oh, and of course they left time for some morning golf, since the surgery wasn't till noon. I actually liked my surgeon just fine but I can't honestly think of another reason for waiting.

I think I will save my rants about ng tubes and the rest of the hospital visit for another blog. I have included enough info to basically get everyone up to speed.

Today's Quotes & Slogan

2006-03-31T11:53:00.000-06:00

Quotes

"If you want to live a life of integrity, eliminate the drama."
Rhonda Britten
Starting Over
3/31/06

"The word 'but' usually means some difficulty."
King Gunther
Dark Kingdom: The Dragon King

"That which is dead . . . cannot eternal lie
with strange eons . . . even death may die"
--Mortuary

Slogan

"Taryn - spice up your life."
Sloganizer

My Personality Style

2006-03-30T10:44:00.000-06:00

Rational Idealist
You are a passionate, caring, and unique person. You are both logical and creative. You are full of ideas. Sometimes you are so rational that you analyze everything. This drives people a little crazy!

You are interested in rules and order. Morals are important to you.

Intelligence is important to you. You always like to be around smart people.
In fact, you're often a little short with people who don't impress you mentally.

You're very serious, and people often tell you to lighten up. In fact, you seem distant to some - but it's usually because you're deep in thought.

In love, you tend to approach things with logic. You seek a compatible mate - who is also very intelligent.

You don't do well in conservative, stuffy situations. At work, you need to make your own rules. You crave personal expression and meaning in your career. With others, you are very honest and direct. People may not take your criticism well. It's probably very hard for you to keep a normal job. However, you are a hard worker and give your all at whatever you do.

You are the most compassionate of all types and connect with others easily. You can spend all night talking with someone. You seek out other empathetic people to befriend. Truth and authenticity matters in your friendships.

As far as your looks go, you're coasting on what you were born with. You think fashion is silly.

On weekends, you spend most of your time thinking, experimenting with new ideas, or learning new things. Charity work is also a favorite pastime of yours.

The Three Question Personality Test

"My Brain's Pattern"

2006-03-20T12:29:00.000-06:00

You have a dreamy mind, full of fancy and fantasy.
You have the ability to stay forever entertained with your thoughts.
People may say you're hard to read, but that's because you're so internally focused.
But when you do share what you're thinking, people are impressed with your imagination.

What Pattern Is Your Brain?

Daily or Monthly or Whatever Quote

2006-02-27T03:18:00.000-06:00

"Extreme mood swings are my goal for the day, as they are so invigorating. " -http://attrition.org/misc/affirmation.html

Updates:
Looking for a house to rent.
Still tired all the time.
My obsessive-compulsive personality disorder (NOT OCD) is running rampant!
Anxious to the max.
Isn't life grand? (sarcasm here, duh!)

Today's Personal Slogan: "Taryn - to feel free!" (HA!)

Christmas, Stumbleupon, Slogan

2005-12-29T15:04:00.000-06:00

OK, I realize Christmas is over, however I found an interesting article about it anyway - how it came about in the larger scheme of things. Check it out here: http://www.book-of-thoth.com/article1440.html. Besides, how can you resist reading about "the cosmic egg?"

Ironic that I felt like putting this on a blog since I didn't celebrate Christmas this year (other than being grateful for Jesus' birth!!) I had such wonderful Christmas' as a kid with my family. As an adult I tried to recreate them. However, as my family split apart and died off, Christmas has just always seemed lacking. Now, when you add no money on top of that it's just too depressing to even acknowledge. However, thanks to my dad, I did get two Christmas presents this year - Zone Alarm Pro (A personal firewall plus more). I love it! My free trial ran out but I was addicted. I also got money from him to get my hair done - another major present!! THANKS DAD!

I love the web; I wasn't even looking up anything regarding Christmas. I was simply starting to watch one of my horror movies on TV, Hellboy, & it had a quote from something called Des Vermis Mysteries. I wanted to see if this book really existed, yada, yada, yada, & there you have it.

If you want to see more about the things I like, check out: http://kd5baz.stumbleupon.com/about/. I really like the stumbleupon tool bar. I have found some really interesting things with this. I highly recommend it. Thanks Ben!

Today's Personal Slogan: Taryn for your life (http://www.sloganizer.net/en/)

Signing off for now.

"Thanxiety - Anxiety about getting a reward you actually want." - Citibank

Updates: Michael's Surgery, Cheryl's Baby, My Mentality

2005-11-16T15:30:00.000-06:00

I thought I'd let everyone know that Michael (my nephew) had open-heart surgery to fix his VSD (ventricular septal defect) on Nov 4th. The surgery went very well and he was able to come home from the hospital a day early (Nov. 9th). He is still healing but is doing very well - smiling again, starting to eat as much as he used to, etc.

In other news, my dad just told me that my stepsister (his wife's daughter) just had a baby 2 weeks ago. Wow! I didn't even know she was pregnant.

Of course, I haven't really been keeping up with people like I should, like I want to. I'm a hermit these days as much as I can get away with it. I think it's mostly due to my hypersomnia, anxiety, and depression. My doctors and I are still working on the magical medical combination to get them under control - as much as that's possible. I at least want to feel like I can function.

Although I do manage to help my sister (technically sister-in-law) take care of my 2 nephews 5 days a week, there is no way I could hold down a normal job - unless I could totally work from home! Anyway, due to fatigue and anxiety I just can't even bring myself to pick up the phone. I totally prefer email!! In fact, everytime the phone rings I cringe, worried that it might be for me! This is quite ridiculous, especially considering Ben & I are still living with his parents and the phone is probably for me less than 1% of the time it rings.

Ah life . . . you can't live with it and you can't live without it.

First Blog

2005-07-08T14:39:00.000-05:00

Ok, so I'm new at this whole blog thing. I decided to make a blog just because I can and as sort of an online journaling thing. So, what to expect from me? Anything, everything, and nothing. Probably no one will even read this anyway, so no big deal. Who knows though, maybe one day someone will type my name into Google just to see what happens and this will show up; it's happened before (the name part, not the finding the blog part).

Mostly I'm still messing around with the settings. Considering I create websites and HTML email (yeah - anyone want to give me a job?) I can't just leave it as is!! The template's handy for a starting place, but really!

There is no schedule here; currently I am VERY anti-scheduling! No, I'm not spontaneous I'm just having my midlife crisis at 29 - actually it started several years ago and currently has no end in site. Ah, well, C'est la vie, n'est pa?

I'm going back to messing with the settings.

Let's see though, I love quotes and write them down all the time as I have no memory for such things. So I will part with a quote for now. This quote is from Starting Over (one of the many reality shows on tv). I love reality shows! If I could learn to embrace the following quote then I would probably be a lot more sane or chilled or something!

"Life is an adventure. It's not the destination we reach that's most rewarding, it's the journey along the way."