Don't Drink the Orange Juice

I’m still here!

Trisha — Sun, 14 Jun 2009 01:00:40 +0000

Sorry it’s taken me so long to update my blog. Things have been changing so fast. My wonderful angels organized and took care of the garage sale for me. My house looked so empty without all my stuff. The things I’m keeping are still there all packed and ready to go. I’m still not sure what my final destination is going to be. The house is going to be sold in August, so I need to get a plan together soon.
The weather here in Michigan is great. It was already getting too hot in Texas. It is still cool enough in the evenings to keep the windows open and have the fan going. No central air here, just portable air conditioners. That’s ok, because Chloe arrived here on Thursday. I’ve missed her so much! She will be here through the end of the month.
My appointment at U of M isn’t until July 1st, so I have no news on that front. I have found a doctor to take care of everyday management, so I’m not complaining. I also got to know some of the folks that work in the ER. Had a few problems, but still breathing and waiting for the first!
As I learn more, I will update! I miss everyone in Texas and send my love!
Trisha

Greetings from the trenches!

Trisha — Mon, 13 Apr 2009 18:27:22 +0000

I have had a rollercoaster week. It is so appropriate that its end is coming with new beginnings. Last week I finally got the test results I had been waiting for. The MRI didn’t show an obvious tumor. That means that it is still in the cellular phase, which offers its own set of challenges. Praise God that my bones are still in good condition. My bone density scan showed that they are still well above average range for women my age. Still at 105^th%. Awesome! The cortisol test that I took came back normal as I expected. I did another one and hope it reflects how I was feeling last week. That’s the health update, will keep posting as I learn more.

Saturday, I took Chloe to the church for the 10,011 Easter egg hunt. I was excited about getting her dressed up to go. I searched the town looking for red sandals for her to wear. How come they always have lots of every size but hers? It doesn’t matter what size she is in, I can never find the child shoes. I also got a web cam so Chloe and I can communicate when I’m in Michigan. I’m sure going to miss that little girl. She is becoming Little Miss Priss. She has to have her purse (with stuff in it), her jewelry, and hair in bows. It is so different from raising boys.

After the egg hunt, I was very sad. I have not made an outward announcement about having Cushing’s again, but it is starting to get around as they are organizing the teams to come help me with the house. There were lots of questions. I don’t mind the questions about the disease, I was having a hard time with the questions that started with the word “when”. I am such a control freak when I need to plan for my present and future. It’s hard not having a plan or a timeline. It was a good thing that I had someone to talk to later that night who cheered me up. It is amazing how quickly this person has become so important in my life. I am so very blessed!

Moods

Trisha — Sat, 04 Apr 2009 11:58:10 +0000

They say that no news is good news. I think “they” are STUPID! No news just keeps you stressed out longer! It has been over a week since I had my MRI and 4 days since I had the bone density scan. No news. Oh well, gives me something to hope for next week.

I have had to make some tough decisions this week, but now that they are made, I feel much better. I have decided to definitely let the house go. It is too much for me to handle and it just stresses me out. I talked to Lisa at church and she is organizing a team to come help me get things sorted. I have to figure out what I need to throw away, what goes in the garage sale and what gets packed. It’s like “Clean house” or “Clean Sweep” Christian edition! I need to reduce my stuff by at least 2/3rds. I have collected so much stuff over the years. I have 4 gravy boats for goodness sake! It’s going to be a great garage sale! These wonderful people are even going to work the garage sale for me since I can’t do it myself. God has put me in a great place during these difficult times. It is good to have family when my family lives so far away. Thank you Lisa and Joann!

What else is going on? Hmmm….let me see. I am so ready to get this going and get to Michigan to be with friends and family. It gets boring here looking at the same four walls. I am looking forward to walking down to the lake or sitting on the front porch swing and listening to the loons at night. I’m also looking forward to leisurely boat rides and fishing with Kevin. I am also looking forward to meeting Amy and Joe and all the Michigan folks from Facebook. It’s also really cool that my friends and cousins come up to see me when I’m in Michigan. I can’t wait to see Theresa and gang, Kelly and Ryan and Maggie. I hope to see the rest of the Urbin and Nuber crowd as well. We always have so much fun when we get together. It’s going to be a great summer. The only downside is that I will miss Danny, Chloe and my friends. I love them all so much. I hope Danny and Chloe will be able to come for a little bit this summer. Trevor is coming to visit for Jake’s graduation party. It will be wonderful to see him in person. I haven’t seen him since September. I miss him and our great talks we had. It’s tough letting your kids go out and make their own decisions.

Anyway, I can’t wait until life starts moving again. I am in a positive mood and ready to take this fight with Cushing’s on again. I have lost the first battle, but I WILL win the war!!

Love you all!

Trisha

I Love Spring!!!

Trisha — Tue, 31 Mar 2009 12:53:45 +0000

It’s the last day of March already! This month has at times flown by and at other times it was crawling at a snail’s pace. Chloe is growing as fast as the weeds in my yard . I guess I should go out and spray them today. I am putting my house up for sale, so I need to get it ready and “enhance” the curb appeal. I have a friend coming over this week to fix the hole that I put in the kitchen ceiling when I fell through the attic. The good news is it was only one leg, the bad news…you guessed it, it was one leg. I am hoping the house goes quick, the market is bad, but I have it under market value right now.

Other news, my lilac bush is getting leaves!!! I had a few flowers on it last year, hoping for more this year. They have always been my favorite flower since living in Grand Ledge and having the bush outside my window. They would make my whole room smell heavenly. I’m hoping that I can catch them in MI one of these days when they are all blooming. I miss seeing and smelling them. The candles just don’t smell the same. I want to take pics of them so I can blow them up and put them on the wall.

As far as testing, I am still waiting for the MRI results and the Bone density results. I will update more when I find out. In the mean time, I have one more test to take for now before the doc calls it. Cross your fingers and hope I fail it.

Trisha

MRI Day

Trisha — Thu, 26 Mar 2009 03:19:30 +0000

Today I had my MRI to see if the tumor can be seen and where it is. It is always fun being put into that tight little tube. I figured out a long time ago that even with the noise of the magnets, it is a great place to meditate and talk with God. The hardest thing about having the test is trying not to swallow. When you swallow, you move ever so slightly and have to start the series again. I should have results in the next couple of days. Last week I grieved for the time I have and will lose. This week, I have given it to God and am relying on Him to lead the way.

What is Cushing’s?Cushing’s syndrome, also known as hypercortisolism or hyperadrenocorticism, is an endocrine disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol (in the blood) from a variety of causes, including primary pituitary adenoma (known as Cushing’s disease), primary adrenal hyperplasia or neoplasia, ectopic ACTH production (e.g., from a small cell lung cancer), and iatrogenic (steroid use). It is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year. Cushing’s was discovered by American physician, surgeon and endocrinologist Harvey Cushing (1869-1939) and reported by him in 1932.Normally, cortisol is released from the adrenal glands in response to ACTH being released from the pituitary gland. Both Cushing’s syndrome and Cushing’s disease are characterized by elevated levels of cortisol in the blood, but the cause of elevated cortisol differs between the two. Cushing’s disease specifically refers to a tumor in the pituitary gland that stimulates excessive release of cortisol from the adrenal glands by releasing large amounts of ACTH.

In Cushing’s syndrome, ACTH levels will normally drop due to negative feedback from the high levels of cortisol. All forms of Cushing’s are correctly called Cushing’s Syndrome.

Cushing’s syndrome occurs when the body’s tissues are exposed to excessive levels of cortisol for long periods of time. Cortisol helps maintain blood pressure and cardiovascular function and is responsible for helping the body respond to stress. Many people suffer the symptoms of Cushing’s syndrome because they take steroids such as prednisone for asthma, rheumatoid arthritis, lupus and other inflammatory diseases, or for immunosuppression after transplantation. Prednisone is well-known for a “bloating” look that it gives people who take it.

Symptoms include (Note: Not every patient has every symptom):

Fatness of the face, sometimes called “moonface”, neck and trunk, Facial plethora, Puffy eyes, Softening of the spine, Ruddy complexion with purple markings, Pink or purple stretch marks may appear on the abdomen, thighs, buttocks, arms and breasts (striae), Easy bruising, poor healing after cuts and bruises, Acne, Diminished resistance to infections, Hypertension, Osteopenia, Osteoporosis (thin, weak bones), Diabetes mellitus, Muscle weakness, Kidney stones, “Buffalo hump“, a fat accumulation over the upper back and trunk, Facial hair in women (Hirsuitism), Peptic ulcers, Low resistance to infection, Mental disturbances, including depressions and hallucinations may occur, moodiness, anxiety or irritability; confusion or psychosis, Severe fatigue, weak muscles, lack of energy, high blood pressure and high blood sugar.

Here we Go Again!

Trisha — Sun, 22 Mar 2009 00:25:04 +0000

Well Hello there, it’s been a long time since I wrote on this site. I got confirmation this week that I indeed have Cushing’s disease again. Not the greatest timing to not be able to work. It’s a good thing the Lord knows what he’s doing, cause I don’t have a clue. Anyway, the good news is that it isn’t going to take as long this time as it did last time. I only need to get one more positive high test before they go in to take whatever it is out. I have an MRI next week to see if they can spot a residual tumor. Once I have the next high, I go see the neuro-surgeon. I was really lucky and found an awesome endo here in Dallas. He is communicating with my doc in Seattle. He has treated other Cushing’s cases before and didn’t dismiss me. I actually went to him because I thought my meds were off. I started getting sick and not sleeping. After almost two years, I once again have diabetes. I was shocked when he called and told me that my tests were all screwed up.

I’m not sure how this is all going to work out. I am taking it one day at a time. My mom is going to come down when I have surgery and when the doc says it’s ok, I am going to go to MI to recover at the lake. Hopefully, I will be able to start back to work in the fall. By then, I don’t think I’ll have my house anymore, so I don’t know where I’ll be. At least I won’t be homeless. I will miss Chloe so much if I don’t come back to Texas.

Anyway, the shock, anger and sadness is pretty much behind me and I am ready to get this show on the road and get this thing out of my head. If the surgery isn’t successful this time, they will know right away and go straight to radiation. It has its own problems, but at least the Cushing’s will be gone. I will keep everyone informed through this website again. Thanks for caring! Trisha