I'm A Scared and Confused Newbie

Post by **tex** » Sun Jun 22, 2008 12:04 pm

Hi Jodi,

Welcome to our online family. We consider ourselves a family, because of the rather unique condition we find ourselves in, namely, learning from each other, how to get our lives back from a miserable, life-altering disease. Because of the nature of the disease, we tend to have special feelings for the health and general well-being of our family members. As you have already found, no one truly understands MC, unless they have it.

The constant threat of accidents, makes MC a very humbling disease, and most of us have had that problem, at various times, so we certainly understand what you're going through. I don't believe that we have any "Speedy Q" stores here in Texas, but if I ever encounter any, I can guarantee that I will never stop at one, and I'll do my part to steer others away from them, also. That was definitely an unforgivable way to treat you.

I'm not aware of any card that would grant a right to obtain universal bathroom privileges in public places, but that doesn't mean that it does not exist. It's something that's certainly worth checking out, though I have some doubts that some of the store attendants that are out there would have sense enough to honor such a card. They might get stuck on the "no exceptions" orders from their boss.

One other option that some of us have used in order to gain a little security when leaving the house, is "Depends", or some other brand of adult diapers.

Encort is probably the most practical choice of meds available for MC, but we've found that it almost always takes six months or more of treatment before the dosage can be safely reduced to a maintenance dose. Note that MC cannot be cured, so most people who have it must remain on a maintenance dose of a med, or restrict their diet, pretty much for the rest of their lives. Once you find a treatment plan that works for you, though, you should be able to achieve remission, and get your life back.

Again, welcome aboard, and please feel free to ask anything. We no longer blush very easily, because we've been there, done that, and we understand how isolated and helpless you can feel, with this disease.

Tex

Post by **tex** » Sun Jun 22, 2008 12:11 pm

Joan,

While I think of it, if you'd like to reconsider flying for that trip you mentioned, it's possible to get a card from your doctor that most airlines will honor, to allow you to sit in a special seat next to the bathroom. I'm sure that card exists, because one of our members has one. This might be the same type of card that you were referring to, for all I know, though again, I would think that airline attendants would be much more likely to be accommodating in a case like this, than convenience store clerks.

I apologize for the fact that most of us did not officially welcome you to the site. You sort of "snuck up on us", rather than posting an introductory message. I can't speak for everyone, but it's a little tough to keep track of members who are actually new, and those who registered months or years ago, posted once or twice, and then lurked a long time, before posting again.

Please do feel welcome, because you are a great addition to our "family", and we most definitely appreciate your input. I hope you can find the solutions here, that you're seeking.

Tex

jodibelle352 · Post by **jodibelle352** » Sun Jun 22, 2008 12:35 pm

Hi Tex:

Thank You for the Welcome and I really appreciate the support.

For the 1st time in a very long time I'm starting a day with a smile. I came across this site early early this a.m. after trying to find out as much info I could on CC and other related illnesses. I know for a fact that my guardian angel was watching over me. LOL

I'm not new to autoimmune deseases as in March of 1995 is was DX with SLE (Lupus). I also have Fibromyalgia as well. Now I've been blessed with CC and am just finding out that to get to remission of sorts I'm in for a long haul. Reality really hits hard when you realize that there is NOT going to be a quick fix and you're on your normal way!

My GI told me last week that it's going to take time for me lg. & sm. intestine and colon to heal. As I went several months without realizing I even was having a problem. I'm not real bright sometimes. My husband was hospitalized 3 times this past year when he had a hernia rupture and there was a lot of stress happening so I chalked all my symptoms up to "stress related" and ignored the signs and symptoms.

By the time I finally realized I was having medical problems I was in constant pain, throwing up, not able to eat and as you know the list kept growing and growing!

At this particular time I feel truly isolated because I'm not comfortalbe going anywhere unless I have to. Hopefully, with time that will change. And I'm hoping that I at least start gaining just a little weight back. My weight loss is not "moderate" by any means and it scares me.

Thank You So Much For You Reply
Take Care and God Bless:
Jodi

May God and All His Angels watchover, protect and continue in guiding you with all the love and support you give to others.

Post by **tex** » Sun Jun 22, 2008 12:40 pm

Jodi,

I forgot to mention. The penguins are there to represent various levels of the number of posts written, and are automatically coordinated by the system. I'll try to find you a set of angel images to represent your posting rank, when I get some free time.

Tex

jodibelle352 · Post by **jodibelle352** » Sun Jun 22, 2008 12:48 pm

Tex:

That would be awesome, Thank You. All I could find for my image was a hummingbird so far.........LOL

Thanks and God Bless:
Jodi

hazel · Post by **hazel** » Sun Jun 22, 2008 4:35 pm

Jodi,
The hummingbird you chose for your icon is actually a beaded hummingbird that is a necklace that one of our members makes. Her name is Irene and when she logs on she is Momster, because her daughter Peggy is the one with the colitis.

Here http://www.craftycathys.com/hummingbird.htm is a similar one to give you the idea.

jodibelle352 · Post by **jodibelle352** » Sun Jun 22, 2008 4:44 pm

Thanks for the info Kathy, does she make other jewelry besides hummingbirds and does she have a site where someone can check out her creations. I would love to see her work. I don't make jewelry but I make "One of A Kind" crocheted doll clothes for Scootle dolls, Knickerbocker dolls as well as Berenguer 7.5 soft body baby dolls. Do you know if she makes any jewelry with angels? I'm a collector of angels and love anything to do with angels. You see.............I have my very own "Cherub Angel" her name is April Jodi. She was my first born and would have been 37yrs old June 19th. She passed at 4 mos. but was one of God's many blessings to me while she was here and so I truly believe in Angels. LOL

Love and God Bless:
Jodi

hazel · Post by **hazel** » Sun Jun 22, 2008 4:49 pm

I was looking for her things online but didn't find them. You could write her a message by going to the memberlist page and clicking on pm by Momster. She's number 35. She doesn't log on too often but she'd see it when she does. I'm sorry you lost your angel April so young.

jodibelle352 · Post by **jodibelle352** » Sun Jun 22, 2008 5:27 pm

Thank You for the info, I will deffinately check it out and try and reach her. Your thoughtfulness about April Jodi is grately appreciated. I was only 19 when she came into my life and left way before I expected. I surely aged fast, went from 19 to 30 real quick with a lot of heartache but even though I thought my world had ended there was another path that was already being paved for me to follow. But that's quite another story and it wasn't a very good experience for me because her Father decided to leave both April and I while I was still in the hospital because I refused to place her in a home because she was born with Down's Syndrome. I just couldn't leave her nor put her in a closet so to speak and forget she ever existed so he left.

Have to get our supper ready so hopefully I'll beable to chat and reply later.

Love Ya:
Jodi

starfire · Post by **starfire** » Sun Jun 22, 2008 6:12 pm

jodibelle!!!

I have been "unplugged" for a few days because I had to move computer and accessories in order to paint the room and shampoo the carpet.

Anyway, I just wanted to welcome you to the group and I surely hope you can find some useful information (I'm pretty sure you will).

Shirley

jodibelle352 · Post by **jodibelle352** » Sun Jun 22, 2008 6:33 pm

Shirley:

Thank You for the beautiful Welcome, I've already been welcomed by so many new people who all share the same illness, the ups and downs of getting to a remission and in 24hors, this is the best I've felt in a very very long time.

Love and God Bless:
Jodi

Gloria · Post by **Gloria** » Sun Jun 22, 2008 7:26 pm

Welcome Joan and Jodi. I believe that I responded to your posts on the other site. When I first went on that site, I felt like it was a ghost town. There was a lot of useful information, but everyone seemed to have "left the room". Then I saw a link to this site and realized that they formed this new one. So the "old timers" here are actually the same people who posted before May 2005 on the old site. They can obviously explain the situation better than I can.

Even though I know this is a better site with more support and current information, I will visit the old site every week or so because I know that there are people on that site that are desperately looking for help. I would direct them here, but I don't think that's the polite thing to do. I just hope that in reading the earlier posts, they will run across a reference to this site like you and I did.

This site is the best thing that could have happened to you both. There is a wealth of support and knowledge here. You won't feel discouraged for long because someone either has already been there or they know how to help you out.

I'm pained to read your stories. Jodi, I'm so sorry that you had to lose a child and her father at such a young age. I hope you were able to enjoy parenthood again.

Gloria

jodibelle352 · Post by **jodibelle352** » Sun Jun 22, 2008 8:50 pm

Hi Gloria:

Thank You for your thoughtfullness. This is a photo of my little cherub angel; April Jodi

God has blessed me with 3 other children and 4 grandchildren whom I love so very much.

This is my son; William, his wife; Amanda and daughter Bailey Elizabeth

My oldest daughter; Renee, husband; Todd and daughter Erica.
Renee's biological mother passed whe she was 8 yrs. old so I never refer to her as my step daughter. But thought I should explain when you saw the difference in ages of my children with David.

This phots shows all 3 together from right to left; Kara Ann, William Robert and Renee Ann

Last but not least my 2 grandsons; Brett and Dylan. Brett is the oldest of the 2 boys.

Now you've experienced first hand what I've been blessed with.

Love and God Bless:
Jodi

starfire · Post by **starfire** » Mon Jun 23, 2008 4:09 am

What lovely family photos!!! Have you found the "room" for our photos yet? We'd love it if you posted them there so they don't get "lost" as the posts move further down the line.

Love, Shirley

jodibelle352 · Post by **jodibelle352** » Mon Jun 23, 2008 6:53 am

Goodmorning Shirley:

I'm pretty proud of what I've been blessed with and am not quite certain how to go about putting photo's anywhere yet.LOL Can you lead me to where I need to go? Would appreciate any and all help I can get navigating around.

Love and God Bless:
Jodi