And then there was Saturday...Paying the price!

So after spraying the front of the house and power washing it, I could hardly move on Saturday! Going up and down the ladder kills me! I was so tired, I slept all night Friday night, got up at about 11 am, then fell back to sleep before 3 pm and slept until 7:30 pm. Now I'm wide awake.

My husband has often told me to pace myself, but I've told him, you really can't. You can either do something, or not do it. If you have a good day, you know you need to get as much done as you can, while you can. You also know that you WILL pay for it, but at least you get something done. Is it worth it? Yep, it sure is!

Rejoicing in the little things

Today was a pretty good day for me. Lately, it seems every day has been a "bad" day. I have not felt well enough to do much of anything. I feel drained of energy and just yucky in general.

Today, I went to the store and got some groceries. I also got some stuff for landscaping. I started scrubbing down the siding on the house, too. I have a lot more to do, but it's looking really good! I also started weeding the one flower bed.

You say, "So what? No big deal?" If you had Cushing's or Addison's disease, you'd know what a big deal it really is! We live for those "GOOD" days, when we can finally get something done.

Today was one of "those" days...

I've not been doing good on keeping up this blog every day, like I had planned. Sadly, this disease has made me an unreliable person. I hate that! I just never know how I'm going to feel from day to day. My husband was really sick lately. Now I'm not feeling good. I slept most of the day. I was dizzy if I got up and tried to move around. Being dizzy is really hard to deal with. I think it has to do with autonomic dysfunction more than anything, but it's part of my package. I never know when it's going to hit, or how long it will stay. Having health problems makes it hard to plan ahead for things. I hate to make commitments to do something because I don't know if I will be feeling well enough when the date rolls around.

Let's talk about the mental aspect of Cushing's

Cushing's has a huge impact on our physical body. As I've said before, it spares nothing. It affects our minds. Besides the memory and speech issues, it invades our thoughts. It causes us to doubt ourselves, sometimes doubt our doctor's diagnosis once we get diagnosed, etc. It makes us depressed. I would not say it is the typical type of depression. It is a depression from being sick all the time, and not getting help from the medical field. We seek doctors to figure out what is wrong with us, and we often feel like they are not even listening, let alone running the right tests. We feel so sick, and we are unheard. We often feel like NOBODY cares. That includes close family and friends. We know that nobody understands what we are going through but another Cushing's patient. Unless you have had the disease, you can't fully grasp the magnitude of it. You could read all the books and articles on Cushing's, and still not know first hand what it feels like. Having head knowledge of the disease is just not the same as having a physical experience with it!

Sometimes we feel like we are just going to lose our minds. We wonder what is happening to us! It's scary! It helps so much to talk to another person who has Cushing's. It eases your fears, and it just helps to know others understand what you are talking about and feeling.

Some of us have a lot of pain. Let me tell you, a person can only take so much! Imagine being in pain 24/7 for weeks or months on end. When it's like that, it consumes you. There is no escaping it! People who are not in chronic pain do not understand that!

I have always thought suicide is sad. As a Christian, I believe suicide is wrong, but I am not judging anyone. I've been in THAT much pain before. I can understand why someone would commit suicide when they are in constant pain. I've heard people say before that they think it's selfish when someone commits suicide. They think it is selfish because of the hurt it causes the people left behind. There are lots of reasons someone would commit suicide, and I'm not talking about every single case. I'm talking about what I know about, and that is someone dealing with chronic diseases and chronic pain. It's not about being selfish. It's about getting relief. It's about being at the end of your rope and not being able to hold on any longer. This is why I think it's sad! If doctors would help these people more, and get them pain relief, or get their disease diagnosed and get them to treatment, you wouldn't see most of them feeling suicidal! Most people have a will to live. Most people do not want to die. There is a threshold you cross. I can't tell you exactly what it is, but I've been there. I've never wanted to kill myself, but I didn't care if I died. I sometimes wished I would just die in my sleep, so I wouldn't have to suffer any more. That is a sad place to be in, and nobody should judge someone else unless they have walked a mile in their shoes.

To all my Cushie friends, I hope you have the strength to hold on until you get the help you so desperately need! It does get better!

Do you know what Panhypopituitarism is?

The pituitary gland is the master hormone gland. Panhypopituitarism is when you have lost function of several of your pituitary hormones. In my case, I've lost all but 1! When you have pituitary surgery, it's common to lose at least 1 hormone. Some of us lose function of all of them. I was already deficient in Growth Hormone before I ever had surgery. The tumor was causing that. After my surgery, I gradually lost more and more of my hormones.

When your hormones are out of whack you don't feel good. In fact, you are just downright miserable! All of this comes in to play when we have Cushing's. Getting a "cure" isn't always all fun and roses. We often pay a pretty heavy price. We gladly trade off because living with Cushing's is even worse. Trying to balance hormones is hard. They fluctuate, and if you have to adjust one, it often throws something else off. They all work off of each other.

As a result, my daily medicines are:

Thyroid medicine
Growth Hormone
Estrogen
Testosterone
(I don't need progesterone because I had a hysterectomy)


And because I had both adrenals removed:

Hydrocortisone split into 3 doses a day
Fludrocortisone

Other every day meds are low dose naltrexone and prenatal vitamins (they have more stuff in them, that's why I take it).

Those are just my every day pills/shots. I also have other things I take on occasion, or as needed. I have medicine for nausea. One that makes me sleepy and one that doesn't. I have allergy medicine, anti anxiety medicine, vitamin D3, and vitamin B-12.

I get sick of taking pills, but I have to in order to stay alive and function on some level!