Sunday, July 26, 2009

My head is out of the sand, and I don't want to do this!

I took my oldest daughter to her pediatrician the other day. She had fallen on the cement right before I had surgery, and hurt her knee. It was still bothering her some, so we had him check it out. That will just take time to fully heal.

While we were there, she asked me if she should tell him that she can't smell. I told her to mention it to him because we always forget to tell him that. She told him and he said, "HMMM!" He's never had a pediatric patient with that disorder (I forget the correct name, but I'm sure I'll get familiar with it) and he said one of the causes is a tumor pressing on one of the cranial nerves that makes us smell. So, he thinks she needs to see a neurologist. Since he said that, I said, "I also think she has something endocrine going on. She has the brown neck, elbows, knuckles, stretch marks, weight gain..." He knows all of my kids. We've been going to him for years. He knows she is different than the others. At least the 3 younger ones. He also knows I had Cushing's, so he said he thinks she needs to get checked out and see an Endocrinologist too. He's sending referrals into Children's, but I know she is not florid. If she has Cushing's, she is cyclical, and that will get us nowhere at Children's. I'm going to see if my endo takes her insurance and if we can get the referral to him instead.

I just want to stick my head back in the sand! I don't want to do this. I don't want to deal with this. I've seen it for years, and my husband commented once, before I was ever diagnosed, "Whatever you have, she has it too."

To top it all off and make matters worse, all of the rest of my hormones have taken their final bow. I'm replacing them now, but I just started that, and I just feel emotional. I feel like crying for no reason, or I feel grouchy with everyone, for no reason. I hate hormones! Why didn't they call them horrible moans? Anyway, add on the news of Ciera needing to test, that really makes me want to cry. I've known it for a long time, I just didn't want to deal with it. I've been in denial about it.

Friday, July 17, 2009

Zane’s 5th birthday

Zane had a fun birthday. He had been telling my cousin he wanted a Spiderman web shooter, and he’d been telling me he wanted a Nerf blaster. Before, it was a tool set. I seen some nice tool sets back in March, so I picked up his gift early. He’d forgotten about wanting tools by this time.

I got him 2 tool sets. One had the regular stuff like screw drivers, wrenches, etc. The other had a screw gun, flash light, level, etc. My cousin made him a shirt (she works at a t-shirt place) that said, “Dad’s helper” IMG_0083_1

and she made one for Carrington that said, “Dad ’s other helper”.


She also got him some work gloves and candy.

At the end of the day he said, “I got everything I wanted!” LOL! He’d already forgotten that he didn’t get ANYTHING he wanted, just recently!  Here are some cute pics. He had his safety goggles on before some of the pics and they left a red mark on his forehead and cheeks.IMG_0090_1


He was thrilled with his cake. It was actually a bunch of cupcakes together. It had a transformer on top. He was so excited about that!


Love those goggle marks! LOL!

Thursday, July 16, 2009

8 weeks post op and new pics

I haven't really noticed looking a lot different, but I have seen many changes as in how I feel. I do notice my clothes fit looser and I can wear things I couldn't wear before my BLA. I've taken new pics in the same dress I wore before my pit surgery. I forgot to take pics right before my BLA, but I was back up to the same weight as I was for the pit surgery, so it's comparable.
I don't like how this program puts pictures in. I can never get them to go where I want them on the page. Anyway, the new pics are with the straight hair, and the old pics are with the frizzy hair. That is the one thing I've seen a huge change in, my hair! It looks much healthier now. It's so shiny. I don't have any shine spray in my hair in these pics!

I don't have bangs in these pictures either. Those are all of my new hairs growing in! People have mentioned that my hair is getting thicker! I pulled all of the new hairs down and curled them with the straightening iron so you could see how many there are and how long they are!

I've been alternating doses of hydro from 22.5 mg. to 20 mg. every other day. I'm weaning down to 20 mg. It's easier on the body to alternate doses every other day and ease your body into it! It works good for me!

Everything is going good. I wish I had even more energy. I do have more than I had before surgery, that's for sure. I still don't have enough as far as I'm concerned. My body is still healing, so it's still slow going. I hate getting worn out after doing a day of anything, or doing much of anything at all, but that's just the way it is right now. I'm still happy with my choice to have a BLA, and I feel so much better than I did with Cushing's!

Monday, July 6, 2009

Another example of why it's so important to get diagnosed as soon as we can!

Monday, July 6, 2009

Accidental death verdict on 40-year-old mum

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Published Date: 03 July 2009 By Garth ApThomas
A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.

Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.

A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body's hormonal system.

The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.

Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.

Contributory factors in Mrs Richardson's death had been Cushing's disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.

The court was told by Mrs Richardson's husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.
Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.

Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.

She had been given a scan involving the pituitary and there was no evidence of a tumour.

It transpired the post-mortem had found Mrs Richardson did have a tumour, which had experienced bleeding.

Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.

Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.

Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.

Legal representatives for Mrs Richardson's family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson's treatment while at the Maelor.

He said that with hindsight the only potential other avenue may have been if she had been given steroids.

But Dr Stanaway stressed he doubted this would have been successful, emphasising Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.

Recording his verdict of accidental death Mr Gittins emphasised: "This is not an indication of responsibility, blame or judgement.

"That is not my jurisdiction.

My very sincere condolences go to the family."

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Thursday, July 2, 2009

6 weeks post op

I'm still feeling pretty good. I'm still not losing weight. I lost some with one of my weans, but stopped. I've weaned again, and now I'm on 20 mg. total for the day. My only "complaint" is that I am tired a lot. I suppose that's pretty normal for 6 weeks post op. If I get up early in the morning, then I need a nap in the late morning, or afternoon to make it all day. Or, if I just don't get up until late morning or early noon, I can usually go all day then.

I'm on a full pill of florinef now. I'm totally off of the BP meds. I have been for a while. My BP is doing good. Now I just have to watch that it doesn't go too low. It was going lower than it should, so I went on a full pill of florinef. Decreasing my hydro this last time made my bp drop more. I also ordered some salt pills. Those should help a lot too!

I've had a lot of headaches lately. I wasn't sure what from. I needed adjusted at the chiropractor, so I thought maybe that was it. That didn't fix it. It's not my BP. My sodium was on the lower end of normal last week, so I wondered if my sodium was dropping too much. Today, I ate a dill pickle and it went away for a while. It came back later, so I ate another dill pickle and it went away again. It's coming back. That makes me think it's my sodium dropping too low. It could also be causing my tiredness.

I feel 100% better than I did with Cushing's, but I don't feel 100% normal, if that makes sense. I don't know if I ever will. I had Cushing's for a really long time. At least since 1992-1994. That's when all of my symptoms began. I know I'm only 6 weeks post op, and it will take a year or two to get to the best that I will be. In some ways though, I feel like things will never be the same. That's ok, though. I'll take my new normal and be happy it doesn't include Cushing's!

I went to calling hours for a friend's father today. When I was getting ready, I had to check the time to see when my medicine was due, make sure I had my medicine in my purse with me, etc. I thought, "What a pain! And, and I'm going to have to do this the rest of my life!" But then I quickly thought, "Oh well, it's a small price to pay to get rid of Cushing's!" I don't think there are enough words to totally capture what it feels like to live one day with Cushing's in your body. It's horrid!

Anyway, the other thing I was going to say was that while I was at the calling hours, standing in line, I felt a bit funny. I don't know what it was. Kind of light headed maybe. I'm not sure. Those things just come on suddenly. I had been totally fine before that. You never know when stuff like that will happen. That's the pain of Addison's disease! I was fine, and it passed. If I felt much worse, I would have sat down. Those kinds of things make me think that I'll probably never feel 100% normal again. I'll always have Addison's now. I'll take it though! It beats Cushing's any day! I'm forever an optimist! LOL! Can you tell? Even as bad as Cushing's is, and I'm not downplaying it at all, I still think there are things in life that are worse, and I'm thankful I didn't have to deal with those other things instead! Cushing's is curable, and some diseases are not. I'm thankful I had a disease that was curable. There are always things to be thankful for, even in the worst of times!