March 30, 2011

I went to have my blood work yesterday. The technician did only the first test on the list instead of all three so I had to go back and get the rest done. Don’t know why she read the order wrong, but it’s done now and I don’t have to have them done again until April 11th.

Thinking about watching The Phantom of the Opera. Don’t know if I will or not..just having a Patrick Wilson and Gerard Butler craving. LOL

Haven’t felt good all week…since Sunday. Hate that my periods are getting so bad. Very painful cramps and dizziness from low iron levels.

I’m getting really tired of not feeling well. It seems to have taken over my life at times.

Onto happier thoughts…

Logan is in here with me tonight. He’s sleeping like a baby! LOL

Logan is 3 months old so of course he’s going to sleep like a baby. My flat attempt at humor. LOL

Watching South Park. This show is so stupid that it’s funny.

Tired.

Gonna lay down with the baby for a while.

Goodnight and try to keep smiling..no matter what!

🙂

Questions To Ask My Dr….

….on the next visit to my U of M Dr on April 11, 2011…..

1. How long do I need to take the Prilosec and what med. is it protecting my stomach from?

2. As close at you can get, how susceptible to getting sick am I, while taking the azathioprine.

3. Will I ever be able to get a job in retail while taking azathioprine?

4. On average, how long does the azathioprine work?

5. What is the next step if the azathioprine fails to help me?

6. Is it possible to have a flare up while taking the azathioprine, use prednisone to get it back under control then continue on with the azathioprine or will I have to move to the next step in treatment?

7. It it OK to use an antibiotic cream for  scrapes and cuts?

8. How do I work going to the dentist for cleanings and extractions that I need to have done?

9. Can I use a product like Gas X to combat the gassiness caused by the aziothprine?

Ulcerative Colitis Is…

Ulcerative Colitis is an autoimmune disease. This means the immune system attacks the affected area, in my case, my colon.

I have left-sided ulcerative colitis. Most of the inflammation that I get is confined to my colon, on the left, not across my stomach or on the right side.

There are other parts of your body that can be affected by UC. For instance, now and then I get a nasty case of iritis…inflammation of the iris..the eye. Hurts like hell. Can’t see very well out of the affected eye(s), very sensitive to light and nasty headaches. The only treatment is a trip to the eye dr. and some eye drops. Within a couple of days it starts to clear up and then all is good.

UC can also affect your kidneys. I have been lucky and have avoided kidney problems. If I can keep my UC under control I shouldn’t have to worry so much about kidney problems.

There is only one cure for UC and that’s the total removal of the colon. You need your colon so try everything you can to keep it. Try the different drugs. Use colon removal as your very last option. Keep what God gave you for as long as you can.

The new meds I am taking, azathioprine, is a drug that suppresses the immune system. This means that my immune system is going to be very low. I have to stay away from anyone who may be sick. This makes it hard for me to even go to the grocery store. I will probably never be able to have a job again…something I was hoping to do when I was older, just a few hours a week…something to support my crafting.

Every job I’ve had in the past I’ve had to quit because after about 6 months, I would have a major flare up and have to call into work a lot and that wasn’t fair to the people I worked for and worked with. I don’t know if I’d be able to collect disability or not. It would be nice but I’d feel like I was taking the bread out of someone’s mouth…someone that really needed the benefits. My husband has a good job and we do pretty well. My only concern is if anything should ever happen to him, I’d be screwed, because I wouldn’t be able to work. I have no special skills so any job I’d ever be able to get would be something in retail…and that’s dealing face to face with the public and potential sick people…making me sick, having to call into work, and around and around it goes…

Now I feel a bit depressed…

 

Sure wish I could have had a normal, healthy life. I guess it could be worse so I need to be thankful for what I have and not whine about something I have no control over.

Keep Smiling!

🙂

My New Meds…

….make my pee smell bad. LOL

It’s a side effect, said so in the printout that came along with the meds.

My meds, and what they’re for…

Ulcerative Colitis

Asacol HD 800 mg. 2 pills, 3 times daily

Folic Acid 1 mg. 1 pill daily

Azathioprine 50 mg. 1 pill 4 times daily

Prilosec 20 mg. 1 pill daily

Prednisone 10 mg. 2 times daily

Allergies and Asthma

Prescription Claritin 10 mg. 1 pill daily

Advair Diskus, 1 puff 2 times daily

Albuterol – as needed

Miraines

Amitriptyline 25 mg 1 pill nightly

Blood Pressure

Cozaar 25 mg 1 pill nightly

Verapamil 240 mg 2 times daily

Cholesterol

Vytorin 10/20 tabs 1 nightly

PMS

Prozac 20 mg 2 times daily

MISC

1 low dose aspirin, 81 mg, every morning

Iron Supplement 27 mg 2 times daily

Fish Oil 1000 mg. 3 times daily

High Potency B-Complex 1 twice daily

Sleep-Aid

Ambien 10 mg. at bedtime

Lots of meds, huh? Thank the good Lord above that my husband has good health insurance.

I absolutely HATE taking all these meds but I want to LIVE so I’ll take what I have to in order to be here for my kids and grandkids.

I use a 4 week pill case to divide my meds up for a month at a time. It takes a little while to get it done but it’s much easier than trying to remember if I took what and when. I have everything on a schedule, which is very important when taking any amount of any type of medicine.

I drink plenty of water, which is important for anyone, but if you have an intestinal disease you need to drink LOTS and LOTS of water.

An Iffy Day

Felt pretty good when I got up this morning. Hubby was in a bad mood because he couldn’t find insurance papers he put away. I hate it when he gets all worked up over things that will resolve themselves. He overreacts a lot. Drives me nuts. ARGH! (Pirate joke between me and my youngest. LOL)

Went to WalMart to get hubby some slacks he’s been wanting to get. While I was there I noticed how awful the store looked. I was going to look for shoes but it was so messed up that I gave up. The craft department left a lot to be desired. There are 3 Walmarts close by and two of them were dirty and gross this past weekend.

Took a nap with Logan this afternoon…the highlight of my day…watching his beautiful face as he slept. He’s so gorgeous!

Went to Jo Ann’s today. Got sick in the store and had to use their restroom to relieve myself…bowely speaking. LOL I hate doing that in a public restroom but it was better than messing myself. Haven’t done that ever with this disease…or any other time after I was potty trained! LOL

My new meds are making me feel a bit worn out but I guess that’s to be expected when you’re suppressing your immune system. Matthew is sick so I’ll be staying at least the house length away from him. I can only imagine how getting sick would strike me right now. I’m glad I had my flu shot. A little bit less to worry about with that.

One day I’ll list all my meds. I take meds for my Ulcerative Colitis, PMS, blood pressure, cholesterol, asthma and allergies. I’ve had asthma for at least 10 years and I hate it. As long as I keep up with the Advair I do really well. I’ve been taking meds for PMS for even longer. Before I was given them, I would just go nuts for a week or two before my period. To this day I can’t believe the difference a little Prozac makes!

I love you, God.

I know You will help me through my rough times and I thank You.

🙂

My Tribe

My Tribe

I call them my tribe because there’s a lot of us now-a-days.

Starting with my husband Larry.

Larry works for Ford Motor Co. He’s been at Ford for 10 years now. It’s a good living, good money, but bills always sky high makes that money go fast.

He has “hobbies” outside of work. He loves model trains and has a couple but they’ve never made it out of their boxes. He just took over an acoustic guitar my son had that was broken. He took it into Guitar Center and got it fixed. It cost only $40.00 to get it fixed and get 3 or 4 sets of strings for it. Does he know how to play the guitar? Not a note. He wants to take his time and teach himself to play. We’ll see how this progresses….

He’s a good husband, father, grandfather and provider and is involved in his UAW union activities.

Next is Matthew. He is my oldest son….28 years old and the father of my 1st grandson, Xander.

Matthew is a hard working young man and an awesome father to Xander. Matthew puts his son first in  everything he does and provides very well for him.

Matthew’s hobbies are reading and playing online computer role playing games. He doesn’t have a lot of time to donate to his hobbies because he works a lot and spends most of his spare time with his son.

Next is my youngest..Larry, Jr. Larry is 22 years old and the daddy to my 2nd grandson, Logan.

Larry is currently in school and is doing great. His college grades are far, far better than his high school grades. He is taking the pre-req classes for pre-med and music theory. He’ll be a guitar playing dr. strollling the hospital halls strumming a soothing song to send patients into the sweet dreams they’ll need to regain their health and happiness. If you believe he’s actually going to roam hospital halls playing his guitar, you’re very gullible. LOL

This coming September, Larry will be marrying Crystal, who has 3 children from a previous relstionship. Larry will be a step dad to a 3 year old and 2 year old twin girls. Crystal is Logan’s mommy.

Crystal is a sweet young woman that I am happy to embrace as my own daughter.

I also have a stepdaughter that lives in California with her husband Josh and kids, 2 boys, Caleb and Jacob. I’ve only met her once but that was more than long enough for her to capture my heart. I’m looking forward to one day visiting them in California. Caleb is autistic and I think it would be easier on him if we went there to visit and meet him for the 1st time.

So…for the tribe living in my house:

Larry(59), Me(47), Matthew(28), Larry Jr(33), Logan(3 months), Crystal(22), Brennon (3), Miah and Hannah (2 year old twins)

Can’t forget about the pet turtle…

🙂

March 20, 2011

I’m still amazed that it’s the year 2011 and were almost 3 whole months into it! Time flies when you get older but seems to never pass when you’re a child…or want something really, really bad! LOL

Woke up at about 10:00 this morning. Had a late night with Logan. Larry had a show and was pretty late getting home because he had to rely on getting a ride from people that wanted to stay later than he did. That’s OK. Stuff happens. At least his band is playing live shows now.

I don’t have a lot to say at the moment but I intend to get back here later today and give a bit more background on myself and my family.

Keep smiling!

🙂

Good Morning?

Woke up with a bit of pain this morning…actually, it’s afternoon. I had my grandson sleeping with me most of the night so when he went to his own bed at about 8:00 this morning I fell asleep for a few hours. It’s hard to sleep with a nearly 3 month old little sweety laying next to you. You just want to look at him all night instead of sleep. He’s so beautiful.

Took my prilosec and now I have to wait 30 minutes to take my other meds and eat.

I think the discomfort I’m having today is from going out to eat with my family last night. We had a blast! It was a buffet setting and I always eat way too much at those places…which is why we seldom go there.

I think that after I’m up and moving for a while that I’ll feel better. It’s just a slow going start to my day. Other than that, I feel pretty darn good. I am in a good mood and I plan to stay in that good mood all day long.

More later…

 

🙂

So Far… So Good

Today was my 2nd full day on the new meds.  I seem to be tolerating the azathioprine pretty well. I’ve had no stomach upset but I’ve been a bit tired. I don’t know if it’s from the meds or if I’m just tired…after worrying so much about even starting the meds and finally relaxing because it isn’t affecting my stomach in a negative way.

The prednisone has helped a lot. I didn’t have many problems today with my bowels. A bit of pain and a little gassy, but not too bad…nothing like it was even yesterday. That’s the good thing about prednisone, it works pretty quickly.
I am taking 20 mg a day of prednisone until I go back to U of M hospital on April 12th for a follow up with my Dr., then I’ll start tapering off.

I am scared of getting sick with the azathioprine…because it supresses my immune system, but all I have to do is be careful and avoid catching anyone’s cold..or worse.

I guess it’s probably hard for people not going through this to fully understand how frightened I am of getting sick. I don’t want to spend any time in the hospital. I am a big baby when it comes to hospitals and there’s no way I want to have to spend any time in one.

My last hospital stay was due to pains in my chest. I had to spend the night and have a nuclear (??) stress test the next day. I found out my heart is in great shape and the pain I was feeling was caused by a flare up of my UC. Yup! My UC caused all the pain. All the way up my back and in my chest. That was last year and resulted in the new meds at the time, the Asacol HD 800.

Today was a good day.

I plan on tomorrow being a good day, too.

Yes. I am an optimist.

🙂

A Little Bit Of A Backstory

Today is March 18, 2011.

The date on my 1st post is wrong. Technical glitch, I guess.

 

I was diagnosed with Ulcerative Colitis in 1984. I began having problems with it in 1983 but it took almost a year to get a diagnosis of UC.

Symptoms began with diarrhea, constipation and one hell of a jabbing pain in my left side.

The first test I had, that officially confirmed my diagnosis was a colonoscopy. When I had my 1st one, they did not give me drugs to put me out or make the test bearable. It was just…prep up…lay on your left side and shove in the tube…at least that’s what it felt like. It was a very uncomfortable test and I resigned to have it done as LEAST often as I could get away with.

I must have gone a good 10 years before having another colonoscopy. The 1st one I had scared me half to death and I didn’t want to repeat it EVER!

I had many, many flare-ups in the 1st 10 years and the Drs. I had in those 1st 10 years told me that I basically had to tough it out. Tough it out? I had two small children and I was sick  almost all the time.

Fast forward to the move.

In 1994 we moved to a new town and had to find a new Dr. We went through quite a few Drs. before we found one we really liked. Our new Dr. was adamant about yearly physicals…which is a good thing. After a certain age you NEED to have that yearly physical, especially if you have a chronic illness.

Along with those yearly physicals came yearly colonoscopies. That didn’t sit well with me. I skipped them whever I could get away with it and never complained about any flare ups I had. You see, those first years of having this disease scared the hell out of me and I was afraid to seek help. I kept to myself and tried to never complain about being sick.

Let’s go forward to the past 5 years.

I finally decided I had enough of being ill and sought help with a major flare. I was given prednisone and finally had another colonoscopy. Much to my surprise, they put me out…or gave me a drug so I wouldn’t be uncomfortable and/or remember the procedure. It was the most pleasant colonoscopy I ever had! LOL

My flare was brought under control and I felt great.

Right then and there I decided the yearly examine was well worth the uncomfortable prep.

Now we’ll go forward to last year….2010.

It all started in January. A bad flare up sent me back to the Dr. It also coincided with my next colonoscopy. The flare up was bad. I was put on prednisone. As long as I stayed on the prednisone, I was fine…except for the unpleasant side effects of prednisone. I really wanted to get off of that drug.

I was on prednisone for 9 months.

NINE Months!

As soon as I went below 20 mg in a day, my flare up came back.

It was horrible!

I went to see my specialist and the news was grim….the meds I had been taking for 27 years was no longer working.

I was referred to a specialist at University of Michigan Hospital’s GI Unit.

The Dr. there was very nice. I had to do the prep and have a colonoscopy again in late September. He found 2 polyps and removed them. Otherwise, everything was good. The prednisone pushed me into remission enough for him to put me on a new drug.

Enter…Asacol HD 800.

I hate taking meds but I’ll do what it takes to get and stay healthy. I am a “new” grandma” and I want to be around to see my grandchildren have children.

The Asacol HD 800 kicked in and was working great. I tolerated it really well and its supposed to help prevent colon cancer…an enemy I hope to avoid all my life.

6 months after starting the asacol, I started to have another flare. Another trip to U of M hospital…another new drug.

Azathioprine

Tuesday, March 15 started my journey on azathioprine.

I was horrified when I was told I had to begin a drug that would suppress my immune system.

I have 4 babies living with me…a 3 year old boy, 2 year old twin girls and a 3 month old baby boy.

How am I supposed to be able to stay healthy when I’m living with 4 adorable little petrie dishes?

I am supposed to avoid sick people like…well…like the plague!

How do I do this living with 4 babies?

I guess I’ll find out.

I refuse to be the “grandma in the plastic bubble”

I am a hands-on grandma and my grandchildren are my ‘lil loves.

My new journey has begun and I need an outlet to help me through the depression I have been dealing with while trying to deal with this disease.

I’ll be blog-blabbing to help myself through it all.

🙂