Please Read

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
  • Find a Toilet
  • Medical Alert Restroom Access Pass

Saturday, March 27, 2010

Oh My Gosh…..

Oh My Gosh…..I’m finally done with the Media Guide (takes a bow)! Its on a disk and I’m taking it to the printer today and NO ONE can stop me!!! Not players with late ads…Hello this fundraiser started Feb. 2nd and all ads were due Feb. 23rd and poor little johnie is still giving me ads on March 24th aaarrrrrrrrrrrrrrggggggggggg. Not Coaches who can’t seem to find the time to give the information I’ve asked 50 times for. Sorry it’s not going in. Why? Why you ask? Because of the yellers. Because of the yellers I decided that I would do it their way. Because for the previous two baseball seasons I have been the nice one waiting and waiting for players and parents and coaches to cooperate with me and give me what I need. I didn’t want to publish the media guide without yours and yours and your sons picture or profile or ads. I didn’t want to leave out the New Coaches profile or the returning Coaches updated information. I wanted to have a good team picture with all players not just half. So for the past two seasons I have put up with the yelling and moaning and groaning of people who love love love to complain. The people who just can’t keep their mouth shut - until you ask for volunteers. You know the ones. The ones who yell the loudest and do the least. They insist that it be done and to the printer by today no matter what is missing. Well you yellers have gotten your wish and the media guide will go to the printer today and guess what….there are names missing and pictures missing and profiles missing but hey that’s ok right. Right, until you realize that something about your son has been left out. So now I’ll get yelled at for that. It’s a no win situation but I’m ready for you. My answer to you is “Oh your son isn’t in there, oh that information isn’t correct or up to date….Sorry they didn’t meet your deadline”.

Oh My Gosh…..Someone please explain to me why….WHY….just when you think things might be improving (Crohns) something else gets worse. Just when you think one area is healing (Crohns) something else flares. Just when you think one medicine is helping (Crohns) another one fails or has an awful side effect. Up down, up down! Crohns is such a rollercoaster and I want to get off. The latest up is that I think being on the vitamin D and B12 (for only a week and a half) is helping. I wouldn’t go as far as saying I have my energy back but I’m not so exhausted that I feel like I’m going to pass out or throw up. I’m also having fewer headaches. Now here comes the butt (pun intended:). The latest down. My abscess/fistula which hasn’t bothered me in a long time (and I was just saying to someone that is has been great, no problems, the setons keep it under control. I swear that beast in my gut has ears). Well last Friday it got real bad. Pain like I haven’t had in a long time and closed…I usually have a little bit of drainage…no drainage at all. Of course being Friday evening I can’t call the doctor but I had some Cipro in the house so I started taking that. Fortunately Saturday it started to drain a lot. The pain continued till about Monday and has been off and on since. Btw, if you are wondering, its on today.

Oh My Gosh….B had his first scrimmage game a few days ago. I went, I saw, I took lots of pictures. He played well. I really enjoyed seeing him play again. He has been mentioned in a few local newspaper and online articles in the past few days. I will do a separate blog post with some of those highlights. I am so proud of him. J also had another game the other day. I wasn’t able to go because I had to get the blasted media guide done. Of course since I wasn’t there he pitched. They won! Woop! He closed the game. Three up three down. Awesome!!! I am so proud of him too. (see some pics from B's game below)

Again, thank you for your prayers. Please continue to pray for my family. My father in law continues to decline a little bit each day. They are saying that he may only live a few more days but I know from experience it can be a few more hours, days, or weeks. We know that it is in God’s hands and trust in his plans for us all. The nurses continue to keep him comfortable. He rarely opens his eyes and only takes a few bites of soft food a day. He sometimes responds to our voices and attempts to communicate but is not able to. Your thoughts and prayers are a blessing to us and very much appreciated.
Well that’s all for now. So until next time…..

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

Friday, March 19, 2010

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

Thursday, March 18, 2010

I'm still here :)

Sorry for the lack of updates. It’s a very busy time of year for me, baseball season is starting for both my boys (j has his first game of the season today woohoo), I’m working on B’s high school baseball media guide, my father in law is in the hospital battling the final stage of lung cancer, and with hardly any energy to begin with…..well bear with me I hope to have some time tomorrow to update you on my last doctors appointment. Please keep my father in law and my family in your prayers. Thank you

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

Friday, March 12, 2010

Me and the Restaurant Scene!!!

I love going out to eat. The food, the company, the conversation, the atmosphere can all be very enjoyable. Unless……

For some reason I am ALWAYS the innocent victim of someone else’s clumsiness and/or stupidity or carelessness in restaurants. Here are just a few examples plus two victims who sat across from me:

Lot 17: Our waiter walks towards our table with a tray of food that includes a lovely honey mustard dip for my nephews sweet potato fries. He bobbles the tray, the cup of dip slides off the tray hitting the floor and splattering all over me.

Damons: Waitress brings our food trying to juggle too many plates one tips and everything is in my lap. Free meal….thanks and how about my dry cleaning???

Lone Star Steak House: Eating my salad and I crunch on something hard and sharp that jabs me in the tongue. I’m thinking great now I have to spit my food out to see what the heck this is. Spit it out…..its a piece of glass. Needless to say my meal was free but somehow I did not have much of an appetite left. They also gave me coupons for just about everything free for my next visit…..ummm I don’t think I’ll be back.

Monterey Bay Mt. Washington: Sitting eating my salad, waitress is walking by with a tray of empty glasses, guy at the next table pops up out of his seat, hits the tray, the glasses land on our table right in front of me, shattering, glass in my food and all over me.

Monterey Bay Monroeville: Waitress walks by with a pitcher of ice water, trips, dumps the whole pitcher down my back….why me!!!!!!!!

Eat and Park: Dead fly in my food ….nough said (except don’t ever eat there again)

Bob Evens (Ohio): Waitress brings my blueberry crape, juggling to many plates, plate tips, blueberries and whipped cream splatter right in the middle of the table between me and J….gets us both….I think J has just inherited my curse. Or maybe its just because he was with ME.

Apple B’s: Out for a nice lunch with my sister-in-law, my two nieces, and my beautiful great niece. This time my niece is sitting across from me. Waitress brings her a cup of coffee and spills it in her lap. When she came back to take our lunch order I told her that my niece would prefer her meal on a plate.

Haha this is the story of my life when I dare to eat out hahaha. Next time I will tell you the ridiculous things that have happened to me in public bathrooms hahaha if there is a crazy person in the building (female or male) I am not kidding you they ultimately will follow me into the ladies room hahaha.

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

Thursday, March 11, 2010

Did You Know That These Famous People Have/Had Crohns Disease?

Shannen Doherty, actress, has Crohn’s Disease. She has been battling the ailment for years. She will be on Dancing with the Stars this month.

Dwight D. Eisenhower, 34th president of the United States suffered from Crohn’s disease and underwent an emergency resection in 1956 while in office.

David Garrard, the Jacksonville Jaguars quarterback was diagnosed with Crohn’s disease in March of 2004.

Mike McCready, lead guitarist of Pearl Jam was diagnosed with Crohn’s at the age of 21.

Rolando McClain, a college football player & NFL draft prospect recently revealed he has Crohn’s. Read about him here

Anastacia, the American born singer and song writer, was diagnosed with Crohn’s disease at the age of 13. Anastacia has sold over 25 million albums worldwide.

Mary Ann Mobley, crowned Miss America in 1959, was diagnosed in her early 20’s with Crohn’s disease. She starred in sever films with Elvis Presley. She is also the co-chairwoman of the Celebrity Club of the Crohn’s and Colitis Foundation of America.

These are just a few. If you do a web search you will find many more.

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

Did I Mention That I HATE NEEDLES!!!

I keep telling myself that I should stop hating needles, after all they are a big part of my life so I should just accept them, learn to love them, enjoy their purpose in my life. So go ahead and stick me with a needle, take some blood, find out what is wrong, and stick me with another needle full of medicine to fix the problem. Whats not to love??? Nope, not gonna happen. I hate needles no matter what their purpose and that hate was reinforced today. I went to have my blood work done and I heard those dreaded words again “Your veins are so tiny”!!! As I mentioned in a previous post these words are usually followed by a traumatic needle experience. So here we go, make a fist, rub, rub, rub, tap, tap, little pinch………….hmmmmmm I must have missed……..let’s try your other arm. Rub, rub, rub, tap, tap, tap, little pinch…………hmmmmm I must have the needle in funny…….(ya think cause if feels like your using a crochet hook)…..wiggle, wiggle, wiggle, yes it must be in there funny because its coming out so slow and strange wiggle, wiggle, wiggle,……..finally one tube filled……only four more to go……….Uggggggggggggggggg.

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

Tuesday, March 9, 2010

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

Monday, March 8, 2010

A Sunny Gluten Free Weekend

Well the sun continued to shine all weekend and the temperature convinced me that spring really is on the way. The snow is starting to melt to reveal the green beneath (ok brown in some areas). Birds are singing and J is playing baseball. Yes it really is almost spring. Now I just need some energy so I can enjoy it all.

The Gluten diet is going well and continues to prove to be a good diet for me and my Crohns. It is getting easier to stay away from the gluten foods as I find more and more new gluten free foods to enjoy. See my previous post. I made some more gluten free cinnamon raisin bread yesterday. I’m so thankful for gluten free bread mixes. I’ve also decided to try to start limiting dairy and eating less sugar. I’m a big cheese lover and so is B so there is always lots of cheese in the house but I think I can do this!!!! Next time I go to the store I’m going to get some rice milk and try that on my cereal. I’m also a big pop drinker so I’m going to cut that out and drink more water and 100% juices. I know I’m doing this much slower than most people would but I think for me that is the best way. I’ve never been good at “quitting cold turkey” so why set myself up for failure.

In baseball news J’s roommates mom has been keeping me updated with the games. Unfortunately they have lost their first two games. J got to pitch a couple innings in the second game and did an awesome job. No runs were scored during his time on the mound; as a matter of fact they only got one hit off of him. Kudos to my J-man!!! Mandatory practices and tryouts start at the high school today for B. However if they don’t get that snow off of the field it will not be playable till the seasons over!!! B has been working out with his new summer traveling team on Sundays. Yesterday was the last workout until after the high school season. The head coach is also B’s high school coach so I know him well but I don’t know any of the other coaches or parents so I went to the workout today to check them out. Everyone seemed great but you never can really tell till game time. Baseball can make people crazy!!! This is why I go find a spot away from everyone and take lots and lots of pictures. More about that another time. So until then

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

Friday, March 5, 2010

Today was a very nice day for two reasons.

1. The sun was shining and it felt so good to be outside soaking it up. So good in fact that the dirty piles of snow everywhere couldn’t even ruin the day.

2. My sister and I went on a Gluten Free Hunt at Whole Foods. I got some very tasty Sovella Bakery Gluten Free Biscottines (choc. almond) very yummy. Some NuGo Free (gluten free, soy, and dairy free) Protein Bars. I tasted the Carrot Cake one, also very yummy. Some Blue Diamond Natural Almond Nut Thins (Cheddar Cheese Flavor) Nut and Rice Crackers (wheat and gluten free). I of course tasted these too by themselves and w/ some Mediterranean Tuna Salad that was also purchased at Whole Foods. These get a yummy vote too. They are much better than the other rice crackers I tried. I also bought a jar of Wedderspoon 100% Raw Organic Active Beechwood Honey (some info. from the label: chemical and pesticide free, antibiotic and GMO free, never feeding the bees sugar, hives are made from environmentally friendly material, each jar is traceable back to master beekeeper). I haven’t tasted this yet because I don’t want to open it until I finish the honey I already have. I can’t wait to taste it. I’ll let you know what I think. Once we left Whole Foods we just HAD to stop at the nearby Starbucks to get Chai Lattes (my fav). After a quick lunch we went on a hunt for a bread maker for me. We went to Target first. They only had one and it was more money then I wanted to spend. Of course since I ate lunch I had to make a pit stop in the Target bathroom. You’ll notice it did not make my list of favorite bathrooms above. A brief stop at B’s high school to drop off Media Guide fundraising information to the baseball players, then back to the hunt. We went to Macy’s and JC Penneys neither of which had any bread makers. Darn, the search will have to continue another day. If anyone knows of a good bread maker that isn’t too expensive please leave a comment and let me know about it.
Now for some baseball news: J is on his way to FL right now for his college baseball spring training trip. The players always do something in honor of the trip…dye their hair, a mohawk, creative facial hair… My J shaved his head!!! All his beautiful hair is gone hahaha. Maybe the girls will leave him alone now. What do you think:

Naw…he’s still my handsome J.

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

Wednesday, March 3, 2010

Good News and Some Other Stuff:

First things first…Thank you to all of you who kept me in your thoughts and prayers while I went through my prep and colonoscopy. Your support means the world to me and helps me get through the tough times.

So I made it through my prep day although I must say I almost did not keep the phosphate toxic crap down. I’m gagging right now just thinking about it. Also a friend just enlightened me on the dangers of drinking this horrible stuff so guess what my dear GI doctor…I will never drink it again. So unless you come up with a better way (which my friend has already told me about but don’t tell my doc) you better enjoy this peek inside me because it might be your last…. In case you are wondering I WOULD LIKE IT TO BE HIS LAST!!! Okay to the good news… The scope went well from beginning to end hahahaha no pun intended. What I mean is the nurse had no problem starting the IV. I was a little worried when I heard those dreaded words “Your veins are so small”. In my experience those words are usually followed by a traumatic needle experience. She flicked and slapped, and rubbed, and flicked and slapped, and rubbed my right arm then went over and flicked and slapped, and rubbed, and flicked and slapped, and rubbed my left arm. So I held my breath and prayed and she did fine, got it in on the first try (sigh of relief). Then my favorite person came in…the anesthesiologist woop. She talked to me for a bit then did her thing and the next thing you know I woke up and it was over (another sigh of relief). Then the doctor gave me the good news…Normal mucosa in the whole colon! The ulceration, granularity, friability and congestion at the resection area that was seen on my previous scope has healed. The Cimzia is helping PTL!!! I have been so discouraged lately with all the fatigue and joint pain that seems to be a side effect of the Cimzia (for me) and not really knowing if the Cimzia was helping. Now I at least know that it is helping.
So here is the plan…

More blood work to re-check B12, and CBC, and check Vit D level to try to resolve the fatigue issue.

Since I still haven’t heard from the Rheumatoid Doctors office about when he can see me my GI Doc is going to contact them to see if he can get me in soon. He is hoping the rheumatoid doc can help me with the joint pain and find out if it is a side effect of the Cimzia.

I am also going to see the Nutrition Doctor again for help with diet and vitamins (B12, D, and whatever else I might need).
I hope I can get some quick answers because it is March and if you know me you know what that means!!! It’s almost baseball season and I NEED to go to ALL my boys games….PLEASE!!!

Which brings me to the other stuff…..BASEBALL. The title of this blog really should be Crohns and baseball lives with me. Like I said its March so here we go. J will be headed to FL for his spring training and his first game will be on Saturday. I really really wish I could be there. He is so excited because Coach R wants him to pitch more this year. He always did a lot of pitching from little league thru high school and for his summer travel AAU teams, but he was recruited as a 3rd baseman so his coach wasn’t even aware that he pitched till the end of last season. I hope he does well in FL.
B’s high school season is due to start with his first scrimmage game on March 18th. There’s only one problem. There is still 2 feet of snow on all the baseball fields in the area??? I did get some other good news today though. Mr. FF (use your imagination) will NOT be helping with the team (jumping for joy). It’s a very very long story but Mr. FF is someone that I hate. Yes I Hate!!! He has done some awful things in the past (as a so called coach) and therefore I do not want him anywhere near my kids. Long story short, even though everyone in this baseball area hates him no one has ever had the “hardware” to tell the man NO except my husband (a few years back). So when Mr. FF didn’t get his way he spent the next 2 years trying to keep my kids from playing baseball and my husband from coaching baseball. Now he has wormed his way into the coaching staff at the high school but it appears that the head coach has come to his senses and is not going to have him be a part of the varsity teams staff as originally planned. (Jumping for joy again). Well that’s all for now. I will be sure to keep you posted with updates of both J and B’s seasons!!!

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