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The following blog posts are based solely on my personal experiences. I am not a Doctor, Nutrition specialist, Comedian, or Professional Baseball Player. If you have a health, nutrition, humor, or baseball issue please seek a PROFESSIONAL.

Favorite Bathrooms

  • Home Sweet Home
  • When I'm @ someones house: the one farthest away from the crowd
  • @ the Mall: Macy's (as public bathrooms go this one is very nice)
  • If I can't make it to Macy's...JC Penney's will have to do (they recently remodeled so it is better than it was. I don't know why they didn't ask for my input???)
  • Monterey Bay Fish Grotto in Monroeville has a great bathroom
  • Ponte Vedra Inn and Club, My fav place to vacation, their rooms have the most wonderful bathrooms

Helpful links

  • FREE Crohns Disease Support Network www.CrohnsDiseaseSN.com
  • Find a Toilet www.sitorsquat.com
  • Medical Alert Restroom Access Pass http://myibd.org/restroommedalert/index.php
Showing posts with label Cimzia. Show all posts
Showing posts with label Cimzia. Show all posts

Monday, March 28, 2011

Its almost April…why is it so cold!!!

Its because I don’t have any hair isn’t it???? I have to go and sit at baseball games in the cold (30ish degrees) with three hats on and I’m still cold??? (Plus the layers and layers of clothing) But I do love to watch my boys play baseball and so far my crohns beast has been cooperating. If I eat an early lunch I’ve been able to make it through the game. Double headers are another matter! Now that things have settled down after the surgeries and chemo I need to get back to my gluten free diet. That should help baseball season go a little smoother. I still haven’t called to schedule my GI appointment…shame on me. I need to do that soon. I’m wondering what he is going to say about meds. I don’t want to go back on the cimzia (I don’t even know if that’s an option). Right now the Pentassa is working well so hopefully I can just stick with that. Of course he is going to want me to have the dreaded colonoscopy but that’s going to have to wait till all my plastic surgery is done. Turns out I may have to have some touchups done sometime in May or June. That’s ok thou because after everything I’ve been through I want my new boobies to look their best so I’ll do whatever I have to do :)

I’m happy to say that my hair is starting to grow back YEAH. Unfortunately its growing back on my legs and under my arms the fastest!!! BOO

Well no early lunch for me today (no lunch at all). I am off to meet J at the eye doctors and then B has a game at 4:00…Its 32 degrees right now!!! I think I need more hats!!!

Love, Laugh, and Always know where the nearest bathroom is

Wednesday, September 8, 2010

In A Nut Shell

So here it is in a nut shell (well it’s more like a coconut shell):
Way back at the end of May I had a routine CT Scan for my Crohns (I blogged about this previously). Somewhere in late June I got the results which showed several things about my Crohns and a few non-crohns things. One was something near my uterus and the other appeared to be the cyst in my breast that has been drained many times. Since the something near the uterus was new I followed up with my GYN about that first. After some testing it proved to be just some fluid in my fallopian tube, no big deal, common when there is a lot of scar tissue in the abdomen. So then I scheduled a mammogram to check on the cyst and I was due for my yearly anyway. I was right, what they saw on the CT Scan was the same cyst but the doctor who looked at my mammogram noticed something else. So after more mammograms and ultrasounds and a biopsy the diagnosis was breast cancer. Let me just say that I thought there were a lot of doctors and test with Crohns hahaha but we have a new winner!!!. Here are the particulars in medical mumbo jumbo:

Diagnosis from core biopsy:
1. Invasive Lobular Carcinoma, Intermediate (this is good) Nuclear Grade
2. Lobular Carcinoma In Situ, Intermediate Nuclear Grade

Strongly positive for estrogen, strongly positive for progesterone (this is good, lots of success treating this type)
Negative HER-2/neu, score 1+ (1+ (negative = good))

MRI Findings:
No chest wall involvement (very good)
The mass is about 2.2 cm (small = early = good)

CT Scan:
Lungs clear. No nodules. No enlarged lymph nodes (good but won’t know for sure if there are any lymph nodes involved until surgery pathology is done)

Whole Body Bone Scan:
No evidence of bone metastases

No date for surgery (possible early to mid October). My surgeon is wonderful and very good of course. He is very positive and so am I.

Because of my strong family history of breast cancer (mom, sister, first cousin) I am having a double mastectomy, reconstruction (Yay for perky boobs), followed by chemo, and 5 years of tamoxifen

I saw the plastic surgeon yesterday and he is wonderful as well. We went over all the options and now he just needs to coordinate a date with the surgeon. So I am waiting by the phone and hoping I can get this over with as soon as possible.

I’ve stopped the Cimzia. I can’t be on any drugs that suppress the immune system. Today my tummy has been a bit out of wack so I am trying to stay relaxed and praying that the crohns beast will stay calm through all of this. I have the most wonderful family who has always given me so much love and support and (no surprise) they have been by my side every step of the way. I am usually what one might call a “worrier” and I have to admit that I cried almost nonstop through the testing and for about a week after the diagnosis but I am amazed (once I stopped crying) at how calm I’ve been. A calm that can only come from God. I am so blessed to have so many people praying for me.

“And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.” Philippians 4:7

“My faith is strong because I know my God is faithful, and His faithfulness is my shield”

Friday, August 6, 2010

Kinda Crazy!!!

Hate by itself is the emotional dynamic of the ability to sustain long periods of concentration and meditation. It does not require an object to focus on (it mirrors pure love in this respect) ; it is a general-purpose tool for cutting positive attachments, especially in relationships (for example, pride in hate mode rejects another person, whereas hate by itself rejects any pleasant attachment to the other person). Hate produces clear thinking and strengthens a person’s will power. It supports the desire for solitude. It cools the mind and may easily be mistaken for a mild sense of peace. It is likely to be the prevailing mood when a mediator claims that they are no longer acting from a sense of ego. The skilful way of using hate is to clear the mind of redundant attachments and desires.
Copyright © 2002 Ian Heath All Rights Reserved
Psychologistworld.com

Hate is related to hurt out of a sense that someone has done you wrong and you deserve better treatment.
http://thecapt.blog-city.com

I HATE to think that I am a HATER but there seem to be more and more people that I am certain I HATE. I’ve thought a lot about this emotion because I would much rather LOVE. I came to the conclusion that most of the people I HATE are people who have been HATEFUL to my kids. I have always been of the opinion that if you don’t like me that’s fine because chances are I don’t like you either. I have certainly allowed many people to walk all over me and treat me badly and haven’t really cared one way or another but doing that to my kids is a whole other thing. I freak, flip, have a “CT”. I’ve already mentioned Mr. FF in previous posts. Well there is another person…we will call him Mr. Pee. He was very HATEFUL to my son for a period of time and unfortunately I run into him here and there. I am not one to be rude to anyone so I just keep my distance. If I must walk past him I do just that and say nothing. If he says something to me I answer politely and move on. If he approaches a group that includes me I move on to another area. Recently my son and I ran into Mr. Pee and he came up to my son and acted like they were best friends. J was very polite and answered all his questions about where he was going to school and how college baseball was going for him and I just kept on walking and paid no mind. Mr. Pee went his merry way and J joined me. A few days later I saw someone who knows very well how I feel about Mr. Pee. He saw Mr. Pee a few days after Mr. Pee saw J and I and proceeded to tell him that I stared at him and shot daggers at him and he doesn’t understand why I f-ing hate him and he told him that I am crazy. I told him that Mr. Pee is well aware of why I f-ing hate him and is clearly paranoid (among other things) because I barely looked at him and if I had stared at him I would have to gouge my eyes out. So I came across this t-shirt (which is the reason I am sharing this story with you). It is now my favorite t-shirt and I hope to be wearing it the next time I see Mr. Pee (and I will be sure that he knows exactly what it is like to have daggers shot at him). CRAZY…he ain’t seen nothing yet!!! Hahaha



Well now that I got that off my chest I can tell you what a nice relaxing week I’ve had. No baseball has meant that 1. I can catch up on all the things I’ve let go around the house. (This is going to take a while) 2. We took a weekend and went to the camp which was pure relaxation and enough free time to read/finish a book.



3. Then more relaxing time at home (I started reading another book). I even spent time relaxing on the deck. I haven’t done that since early spring. 4. Shopping (for something other than baseball stuff) 5. Eating three (or more :) meals a day. I haven’t done that since early spring either. 6. More time to blog…I know you all are thrilled about that! The only thing missing is the beach oh how I would love to go there for some R&R.

The crohns beast has been quiet during this resting time except for the last couple days. I have had some pain but so far today I’ve been fine. I think the Cimzia is helping keep the beast happy for the most part. The Vitamin B12 and D3 seem to be keeping my joints happy (very little joint pain since I’ve started those). The new medication for my migraines has been helping but I’m still getting headaches a few times a week so he increased the dose. I hope that helps. J will be moving back to school next week :( and B is having surgery again (the cyst is back) on August 20th. I’m trying not to let the stress of that feed my beast!!! Well I think I'll go relax...

Love, Laugh, and Always know where the nearest bathroom is

Thursday, July 29, 2010

A little bit of this a lot of that!!!

Busy bee was me…

Don’t know where to start. I’ve been so busy busy busy yet I feel as though I’ve gotten nothing done. How can that be??? Oh yeah…I’ve spent 90% of my time behind third base!!! Baseball season is officially over. J had his last game a few days ago. B had his last game last night and his last workout this morning. I am ready for a break before fall ball starts.

Heres whats been happening:

My crohns beast has been somewhat calm with a few flares here and there. Nothing major thankfully. The new med for my migraines is helping but not as well as the last one that made me crazy. Now that baseball is over I need to schedule the rest of my follow up appoints…Ugh hopefully there won’t be any more poking or prodding. I’11 be getting my Cimzia shots tonight…woo hoo! I've been on it now for over a year and it seems to be working well.

As if I don’t have enough baseball in my life I went to the Pirate game with my hubs, sister, and my lovely girls and some of their guys.



I love this baseball field!!!





And it was fireworks night



We spent a week in Atlanta with B and his team. They played in the Perfect Game tournament and did very well. They placed in the top 25 of over 200 teams.
This was my first gluten free trip and well it wasn’t really all that gluten free…Yes I cheated and I ate gluten foods. Yes I paid for it. I know shame on me but there were just some foods I could not resist while eating on the run. I just had a nibble of these because everyone was raving about them.





While the food was great the hotel was...well NOT. Our room/problems were not too bad (compared to others) but its hard to believe they stay in business. Heres why:

We had two phones in our room



Neither one worked. The maintenance guy could not figure it out and he was very creepy looking so when he offered to come back later I said that’s ok we have cell phones so we don’t really need these to work. Except when we had to call the desk for something and convince them that we were guests of the hotel and no we don’t want someone to come and check the phones.

Our air conditioner did work



But as you can see we had the temp set at 50 degrees and the room was a constant 70+ degrees

Housekeeping was a bit daft. We started off with 4 towels but the next day we got 3
Then the next day we got 4 towels but no wash cloths. Then we got 3 towels, 4 wash cloths and no hand towels and so on for 6 days. They never gave us more shampoo.





One family was moved 3 times because the AC didn’t work at all in their first room, the second room they tried to give them they couldn’t even get into because there was a problem with the door. The third room the toilet didn’t work (a crohnies worst nightmare). Then there was the day the creepy maintenance man pulled a mouse out of the pool filter and a RAT out of the pool drain. He had a little trouble with the rat. He kept trying to pull it out by the tail with pliers and pieces of the tail kept breaking off…needless to say we stayed far away from the pool after that!

If all that isn't enough there was a storm and the hotel got struck by lightning...8 hours without power and we were on the 9th floor. However they had food and an open bar in the lobby to keep us happy.

Right before we left for Atlanta our pool collapsed…a wall of water down the street…14,000+ gallons of it!



J’s season of coaching is over. Other than a few hairy moments with crazy parents and umpires I’d say he enjoyed it. Heres a pic of him coaching:



So thats about it in a nut shell.

Love, Laugh, and Always know where the nearest bathroom is

Thursday, June 3, 2010

Picnics and Piggy Toes???

A three day weekend and here we are in June! And a busy weekend it was. What a way to end the month of May. Baseball, picnics, sunshine, family, good food, homeruns, and a beautiful baby girl I love with all my heart!!! After a little break B had two baseball games. They were just practice games but still a nice opportunity to get to see him play and a homerun is a homerun in my book practice game or not GO B!!!





J is officially moved back home for the summer (doing a dance right now)and I have the piles of laundry and maze of extra furniture to prove it plus a very large supply of creatine???



Three Picnics this weekend, all with wonderful family and friends who I love spending time with and the food YUM! There is nothing better after starving all morning and afternoon at a baseball game then going right to someone’s house and eating a LOT of wonderful food (none of which you had to prepare) Nom nom nom!!! Then spending the rest of the evening taking pictures of my favorite baby girls piggy toes!!!





The weekend was so great I almost forgot that this Wednesday was my forth week Wednesday which meant it was time to shoot up the Cimzia WOOP!!!



I can’t believe I almost forgot…I usually stress over it for a few days before. That hate of needles thing ya know. It was kind of nice doing without the stress for a change.

Well we are getting closer to our walk date. 9 days and counting, nails are painted purple



T-Shirts are here (I have to tweak them a bit; need to add cousin, niece to a few of them :)



Fundraising continues

http://tiny.cc/63lsy

Excitement level very high YAY!

Love, Laugh and Always know where the nearest bathroom is…

Thursday, May 6, 2010

Gee Thanks Crohns

So you all know that I have been having a lot of nausea and fatigue yadda yadda yadda, and baseball season is always a difficult time for me. For me Crohns and baseball just doesn’t go well together. As I’ve said before I don’t do porta johns unless it’s an extreme emergency. So I avoid extreme emergencies by not eating. As you can imagine this makes even a good day turn bad very quickly. So I’ve been struggling through the season going to all of B’s games and most of J’s home games. This week however I was just worn out and feeling extra nauseous and fatigued on Tuesday so I decided not to go to B’s game. Now my kids are wonderful and they completely understand if I can’t make it to a game. As a matter of fact when they know that I’m not feeling well they encourage me to stay home because they want me to feel better more than anything. It’s me being stubborn and not wanting/letting Crohns interfere with any part of my kids lives. But I do know my limits (most of the time) so I stayed home and it felt good to stay home until I hear “B hit a homerun” his third one this year and I missed it. I missed it because of you Crohns. You are such a pain in the butt Crohns (pun intended). All I can say is it’s a good thing I got to see the first two. I am very thankful for that!!!

J’s team is doing very well! They qualified for the Quarter Finals that will be played on Sat. at their home field. If they win they move on. GO TEAM!

I got my Cimzia shots last night and I hope its kicking your butt Crohns. Blood work today, ugh more needles. Hoping she can get it on the first stick this time. I’ll be sure to let you know. So until then

Love, Laugh, and always know where the nearest bathroom is

Thursday, February 18, 2010

Another crappy day….pun intended

This is not a good day. Dragged myself out of bed this morning. Two hour delay for the school district so I crawled back to bed. Dragged myself out of bed again. I started off with just joint pain but its joint pain that is off the charts. Almost brought me to tears today. The monster in my gut seemed to be sleeping but now it is stirring too. GO BACK TO SLEEP!!!

I scheduled my colonoscopy (woop) for March 1st. I am anxious to see if there has been any improvement since being on the Cimzia. I have a bad feeling that the Cimzia is what is causing the horrible joint pain. I have had joint pain for many years but never ever this bad and earlier this month when I had to postpone my injections because of my head cold I noticed my joints were starting to feel better. When my head cold was gone I got my injections and a few days later the joint pain was back. I tried to get an appointment with the rheumatoid doc. today but silly me I called during their hour and a half lunch time. I couldn’t call back because I had to drag myself to the high school and work the concession stand, although if it weren’t for my commitment to help the coach I would probably never leave the house. How sad is that! So I will try to call the doctor tomorrow. Better days are coming…..Right???

Love, laugh, and always know where the nearest bathroom is