Procrastination

pro·cras·ti·na·tion
noun
the act or habit of procrastinating, or putting off or delaying, especially something requiring immediate attention: Insert picture of me :0

After much procrastination I finally called and scheduled an appointment with a new GI doctor. Dr. R. comes highly recommended by Dr. L. who I will miss tremendously.
The earliest appointment I could get was April 30th. I have to call and have my records faxed and they will be mailing me an information packet to fill out. I hope she sends the packet right away because with my medical history this paperwork should take about a week to fill out.

At least my Crohns beast has been behaving. I hope that continues up until and long after meeting my new doc.

I hope he will refer me right away to an arthritis doctor. My joints are still hurting so much.

On a better note baseball begins in a few days...I can't wait to go to a game. I can't wait to try out my new camera with its telephoto lens!!!

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

Crohns Meet Chemo

Well its been a while since I’ve posted. I’ll try not to take too long to catch you up. I’ve been spending a lot of time dealing with the breast cancer treatment which has not been agreeing with my crohns beast. Even before my first chemo I was anemic and had to have some iron transfusions. I did have some side affects but I don’t think they bothered the beast. Those treatments were followed by a very busy week which included my first chemo treatment (Mon.) The treatment itself (4 hours) went well. I was just very tired that day and the next and I had an increase in diarrhea. I figured heck, diarrhea, I can handle that. Then Wed. night I started to feel horrible, even more diarrhea now with some bleeding and the constant diarrhea flared the fistula. That night every inch of my body hurt. It was like tiny knives/shards of glass racing through my body stabbing me. The pain and diarrhea and bleeding and fistula flare continued Thurs. which was the day I had a consult appointment with the surgeon who was suppose to put the chemo port in the next day. My heartrate was high and I had a slight temperature so needless to say they postponed that procedure. Friday the muscle and joint pain eased up a little but I had bouts of nausea and esophageal spasms and stomach/intestinal cramping. It felt like my entire digestive tract was in a knot. I’ve continued to have moderate diarrhea with some bleeding off and on and occasional spasms. The fistula is starting to feel better but is still making it clear that he is there and not going anywhere. I have a call in to my GI (who won’t be back in the office till Monday) and I’ve spoken to the oncologist (the surgeon called her too) I’ll have my blood checked on Monday and see the oncologist on Tuesday. My temp. is back to normal and my heart rate has lowered. I’m hoping I’m on my way back to feeling normal (for me) for the next few weeks before I have to go through it all over again. I’m hoping that this first treatment just woke the beast up to say HEY what is going on??? Maybe the next time he will just say “oh you again” and go back to sleep. A girl can dream!

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

New Med = Less Bathroom (so far)

I went to see my GI the other day and we discussed the Pentasa I’ve been taking for longer than I can remember. 2 pills 4 times per day. I was out of refills and needed a new script called in. He told me if I wanted I could take 4 pills 2 times per day or he could switch me to a different drug (Asacol ~ mesalamine ) that was 2 pills 2 times per day. I said sure I’ll try the Asacol. About a week later, after my insurance company approved it (don’t you just love insurance companies) I got it filled and started taking it. I’ve been taking it for about a week now and it is helping better then the Pentasa. I don’t have to go to the bathroom as often woo hoo. As a matter of fact it is 1:42 and I haven’t gone yet. This is like the closest I’ve ever gotten to constipation lol. Going less should be very helpful during mastectomy post-op. My surgery is scheduled for October 22nd which is creeping up on me quickly. I’ve found some very informative blogs that have given me lots of ideas of what to take with me to the hospital and what to expect after the surgery. I’ve started packing a bag already so that I don’t forget anything that I read about. The bad news is my fistula has been acting up. I got a script for Cipro so I hope that gets it under control FAST. I don’t want anything to postpone my surgery. I just want to get this over with. I’m also getting back on track with my gluten free diet. All the junk food is gone. B had some friends over and the gobbled it all up. I want to eat as healthy as I can leading up to the surgery (something I should have been doing all along). Since I’ve been off the vitamin D3 my joints have been hurting more and the past few days have been really bad. This could also be because of the change in the weather. I hope I can get back on the D3 quickly after the surgery is over. Well I will try to update you a few times between now and my surgery. Until then

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

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

The Week in Review

Monday I went back to the doctors to get the results of my blood work (trying to get to the bottom of all this joint pain and fatigue). I had her give me a copy of my results, something I intend to do from now on so that I can keep track of my health better. The good news is that my RA screen was negative. She had some concerns about my Thyroid level being on the high side based on new standards. Hypothyroid symptoms include muscle and joint pain, fatigue, weight gain is common even though appetite diminishes heavy periods, and mental activity— including concentration and memory—may become slightly impaired. I have experiences all of these except the weight gain; however, I have less appetite but I’m not losing any weight. My B12 was low, which can cause fatigue. I am now taking B12 under the tongue and will be recheck in May. If my B12 has not improved I will switch to the shots. My Vitamin D was deficient. This can cause bone pain and muscle weakness, as well as fatigue. I am now taking 50,000 IU once a week for 4 weeks then Vitamin D3 2000 IU daily. My Triglycerides are also high :( but I’m not really doing much different except the gluten free foods and now that I’m on the gluten free diet I eat less carbs. Maybe its because the food isn’t going through me as fast??? Everything else was good (all two pages of results). I will be having all these retested in May so heres hopping for improvement and MORE ENERGY!!!

A special thank you to everyone who has been praying for my father in law and my family. We are so thankful for your love and support. Please continue to pray. Wednesday was a difficult day. We had to take my father in law to the hospital. He is now in the last stage of lung cancer. My husband and brother in law tried to take care of him at home but it was getting too difficult. In the last few days he had become too weak to walk and started having a lot more pain. The pain meds/disease have been making him so confused, sometimes not knowing where he was or who his sons were, seeing people and things that aren’t there, angry one min. and raising his fist, then so sad and crying the next min. He is settled into a comfortable room and the wonderful nursing staff is regulating his pain meds and trying to keep him as comfortable as possible. The transition to the hospital has really worn him out and he has been sleeping most of the time. It is so hard to watch him go from such a strong independent man to this. I hate cancer. I have lost so many people I love to cancer.

On a happier note…J had his first home game of the season. It felt so nice (normal) to be out in the warm sun watching a baseball game. He is one of the many pitchers on the team and he did not pitch for this game :( so I went off (like I always do) and took some pictures of his friends. (see some pics below) He has a double header tomorrow so hopefully I will get to see him pitch and get some good pics of him. B has three scrimmage games next week (if the weather cooperates and the fields are playable). I am so excited that it is finally baseball season. I just hope I have the energy to get through it…….in the meantime

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

To the Doctors…Again!!!

I think I spend more time with doctors then I do with my family. I know that can’t be true but that’s how it feels sometimes. So in case you haven’t guessed I went to the doctor’s office yesterday. This was supposed to be my yearly check up/yearly TB test. The office called me last week to tell me that my doctor was going to be out of town this week so I could either reschedule or see the Nurse Practitioner. I choose to keep my appointment and see the Nurse Practitioner. I had some second thoughts in the morning thinking that I would be wasting my time and that I should just cancel and reschedule with my doctor when he gets back but I went. I went and I’m so glad I did. She was absolutely wonderful. Not that I don’t like my doctor, I like him a lot. He has always been wonderful but she was WOW. I talked to her about everything that has been going on lately, all the Crohns problems, GYN problems, and Cimzia problems. She had a very interesting take on all of it. She does not think it’s the Cimzia at all that is causing all the joint pain and headaches, and fatigue. She believes that it is hormonal, perimenopause to be exact. Now normally I would have been very insulted by such a diagnosis. After all I am still way way way to young for that (stop right there those of you who are tempted to leave a comment with malicious facts when the truth is I have always done things ahead of my time why should this be any different…so there). Okay back to the point, I am not insulted because I’m thankful for any answer that explains the problems and any help that can be received. Joint pain, fatigue, bad headaches can all increase from the hormonal changes. She is also sure that the joint pain is also Rheumatoid Arthritis (not the Cimzia) I also have swollen lymph nodes in my neck but no sign of infection. Apparently this can also be a sign of Rheumatoid Arthritis. My other doctors have been telling me that my B12 levels are fine but she feels that by the new standard my level is too low and I should be getting the shots. She also agrees that my vit D level needs to be checked. I go back Thursday morning for a boat load of blood work. She is going to check everything. When I go back on Thursday I am going to schedule a follow up with her so I can find out exactly what my results were and what I need to do. I think I’m seeing a light at the end of the tunnel………I hope it’s not a train!

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

An Update and a Special Request

I am happy to report that this week I am feeling a little better. Still exhausted but the joint pain is not as bad, I have less nausea, and I think I went an entire day without a headache. I am hoping the next three days will continue to be good ones because, are you sitting down, on Sunday I have to prep for my colonoscopy!!! Blahhhhhhh!!! So think of me in my corner sipping my clear liquids and toxic waste but try not to picture me running to the bathroom.

I am also happy to report that I (with the help of my wonderful husband) made my first loaf of gluten free cinnamon raisin bread last weekend and it is very good. I am so happy to have some bread in my life again and I am looking forward to finding/making other wonderful gluten free foods.

Now I would like to ask a favor. If you happen to have an extra $5.00 or are looking for a wonderful cause to support please consider making a donation to a fellow crohnie who is participating in the Take Steps for Crohn’s & Colitis walk this summer. You can donate online at:

http://online.ccfa.org/site/TR/Walk/Chapter-SouthwestOhio?px=1957383&pg=personal&fr_id=1797

More than 1.4 million patients across the country suffer from Crohn’s disease and ulcerative colitis. Beyond raising money for research, Take Steps brings together the community in a fun and energetic atmosphere. Participants are encouraged to make noise and be heard—raising awareness of these little known diseases.
If you are able to please consider supporting their efforts by making a tax deductible contribution.

Your support of even $5.00, will help fund important research and raise awareness of diseases that affect millions of people.

Another way you can help spread awareness:

If you have a twitter account on 3/14 please use #Crohns at the end of all your tweets in hopes of a trending topic to spread awareness.

Thank you so much

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

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