Sunday, April 22, 2012

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!

Thursday, April 19, 2012

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.

Friday, April 13, 2012

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.

Sunday, April 8, 2012

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!

Saturday, April 7, 2012

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
(I don't need progesterone because I had a hysterectomy)

And because I had both adrenals removed:

Hydrocortisone split into 3 doses a day

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!

Thursday, April 5, 2012

Flipped diurnal rhythm

When you have Cushing's Disease, you get a flipped diurnal rhythm. When you are cyclical, this can change around. Sometimes you have insomnia, and want to sleep all day. Other times, you are up at regular hours, and sleep at night. It makes it hard to function and fit in with life and people who are not sick. They often don't understand. They think if you just go to bed earlier, you will get up earlier. Hahaha! No.... it doesn't work that way! We wish! Even sleeping pills don't work well for the most part. You might get a few hours of sleep out of them, and wake up suddenly in the night, feeling startled. I can't tell you how many times I sat straight up in bed, out of a dead sleep, feeling like someone just woke me up by scaring me! At times, you have this drastic fatigue come over you that you just CANNOT fight! It's like a huge black cloud! It feels like when you are put under for surgery. You just can't fight it. It just happens and you have no choice but to go to sleep!

Now, I mentioned "cyclical". What that means is, sometimes we have tumors that turn on and off. We can go through periods of time where the tumor is functioning, and we call that a "high" cycle. When the tumor turns off, we often feel extra sleepy, have diarrhea, nausea, and aches and pains. We often just feel like we have the flu! It's cortisol withdrawal that causes those symptoms. Typically, when you are in a high cycle, you break out in acne, feel extra hungry, feel wired, can't sleep, but feel pretty good for the most part. If you stay in an extended high, it really starts messing with your mind. It's no fun either!

Having a disease like this makes it hard to hold down a job, or go to school. Many people have to quit working, or drop out of college. It's easy to see why, when you know how Cushing's really affects the body.

Wednesday, April 4, 2012

Memory issues and speech!

For a while after my adrenals were removed, I seemed to have the memory issues improve. I still deal with this symptom all the time. That's why I'm always running late on this blog! Hehehe! I always forget! My brain seems to function best late at night.

They have proved that Cushing's causes the brain to shrink, in the part that deals with our memory. My long term memory is good, but short term is a joke! Sometimes I ask my kids the same question over and over. I don't do that all the time. Sometimes it's just worse than others.

When my Cushing's started getting really bad in 2006, this was one of the most alarming symptoms to me. Especially since my dad had just died with Alzheimer's the previous year! My grandmother (his mom) had it too. I started forgetting what I was talking about mid sentence while taking with someone. Talk about embarrassing! More than it being embarrassing, it was downright scary! I thought I must have early onset Alzheimer's!

Another symptom I had with Cushing's was saying words wrong. I actually thought this was funny most of the time. We always made a joke of it. Once in a while it would just make me mad that I couldn't talk right, but mostly, it was just funny! Somehow, the brain will mess up and make you say something you didn't intend to say. Most often, I would instantly combine words and create a new one. Like one time I called a handicapped ramp a "slamp". That was a combination of slope and ramp. I once told one of the kids to "mair" up the socks. That was a combination of match and pair. Those are some examples. At other times, I just had odd "words" that were not really words at all... not a combination of anything, and who knows why it came out that way. I can't even remember what I called our RV one time. I heard the word come out of my mouth and was puzzled. I meant to say either camper or RV (I don't remember now), but it was some odd combination of letters! I was in shock. Those were particularly alarming to me. I can make sense of combining words, but this other deal was just bizarre! I was once reading to one of the kids, and I read the word "newspaper" as "recorner". I had no idea where that came from! I was looking at newspaper, and meant to say newspaper, but "recorner" came out of my mouth!

Besides those problems, we also often have a hard time thinking of the word we want to use, or we have trouble spelling words we've known all our life. They suddenly don't look right when typed out. We often have to sit and think of another word that means the same thing, because we can't think of the one we want to use, or can't remember how to spell it.

Thankfully, I don't have a lot of problems with this now. I will occasionally have something odd pop up. Mostly I still deal with memory issues. That is still frustrating and embarrassing!

It's hard to say what "one" symptom is the hardest, or worst to have with Cushing's. Aside from the physical changes, the brain changes are often one of our hardest things to deal with. Many of us were very smart before Cushing's. We had high positions in jobs, or high IQ's. Cushing's often makes us feel like we are losing our mind, or that we are now "dumb". We aren't dumb, and we are still very smart, but everything is more challenging for us with Cushing's. Cortisol literally affects everything in our body. It spares nothing!

Tuesday, April 3, 2012

Yikes, I'm already falling behind! Let's talk about our body with Cushing's!

I'm pathetic! Well, actually, I have a good excuse. I had a doctors appt. in the big city today. I took the girls with me and we went out to eat, and to the mall after that. We got home late. Now that it's after midnight, I'm into the following day, putting me a day behind. Oh well.

Since my appt. at the doctor today was to see about a tummy tuck, and maybe some other work, let's talk about what Cushing's does to our bodies.

The excess steroids that our bodies produce with Cushing's causes us to gain a lot of extra weight. That is the most obvious outward sign to everyone, except most people want to blame you... that you are just not eating right, or exercising enough! Doctors do it, friends and family do it! Depending on how your tumor acts, or how long you've had the disease, you may or may not have gained a lot of weight. I have most likely had it all my life, as it looks like Cushing's is genetic in my family. I believe my mother had it, and I think 4 of my 5 children do as well. So far, I'm testing 2 of them, and they have some positive results.

Anyway, back to the body. I gained 130-140 lbs. with Cushing's. Now I have LOTS of skin (still some fat too). My muscles are shot as well! After 5 babies and Cushing's, which causes muscle weakness, they are just falling apart. My skin under my biggest belly flap (yeah, that's gross, but it's a part of my life that I've just had to deal with) often breaks down. It will tear and bleed. It also gets rashes. It's quite painful. I'm sick and tired of it! It's no fun at all, and SO NOT sexy!

I feel akward in my clothes. My belly shows through my clothes. There is no hiding it. It makes me look odd! You can tell I have smaller legs, and a smaller waist. My belly skin makes me look like I have wide, odd shaped hips. It's not my hips at all. It's skin from my belly, spilling all over the place. And underwear? That's a joke! Nobody makes underwear to fit a body like this! It's just not sexy to have your belly hanging out the leg holes of your underwear!

Cushing's also causes excess hair growth for women, in places that women just should not have hair growing! I'll admit, I have resorted to shaving my face. I'm not happy about it, but I didn't like the female werewolf look either! I have no idea why this symptom did not disappear for me. Some of it did, but the facial hair did not. Actually, it did for a while, but came back. I gave up and just started shaving it. It looks much better!

With Cushing's, my breasts exploded. I was wearing an H cup! Unreal! Well, I've went down quite a bit, but now I look like I've been run over with a steam roller! Those poor old Ethiopian women have nothing on me! I'd like to have them put back in place and fluffed up a bit (by removing the excess skin and tightening). Also possibly some reduction. You know, I don't consider myself a vain person at all. I never figured I'd EVER have any plastic surgery, but I never counted on my body being stretched like taffy and left laying all over the place, either! :)

When you have Cushing's, you often have a very odd  body odor that no shower and no soap can get rid of. It has to do with the hormones, I'm sure! I don't miss that symptom at all! It's embarrassing!

With Cushing's, we also get stretch marks called striae. They can be pretty much anywhere, and they are unflattering as well. We also get boils, acne, and a lot of other skin conditions. They can be painful, and embarrassing.

We also often lose a lot of our hair, and it just turns into this frizzy, haystack consistency that you can't do anything with. Oh, and don't forget the big red face!

I'm sure that there are other symptoms that I have not listed, and I've painted a very unflattering picture. WELCOME TO CUSHING'S DISEASE! :) Please, everyone, before you make fun of that fat, sweaty, stinky, greasy, hairy person that you see, please consider their feelings, and consider that they might have a health problem that is beyond their control! They don't like looking at themselves any more than you do, and they have to live with it every single day! Doctors miss this diagnosis ALL the time! They say it's rare. That's not true! It's just rarely diagnosed! Cushing's patients often go from doctor to doctor, trying to find out what is wrong with them. They are not hypochondriacs, looking for an excuse as to why they are fat. They are very sick people who are not getting the proper medical treatment, and doctors are not listening. They only see what they want to see!

Do you know someone with Cushing's symptoms? If so, please learn all you can about Cushing's, and help them learn all they can about Cushing's. Cushie's need lots of love and support as they go through this disease!

Sunday, April 1, 2012

What is Cushing's Disease?

Cushing's Disease is caused from a tumor. The most common location for the tumor is in the pituitary gland. The next most common place is the adrenal glands. After that, the next most common place is in the lungs. The tumors can be anywhere, but those are the most common sources.

The tumor secretes a hormone called ACTH. The ACTH tells the adrenal glands to put out more cortisol. This causes an over abundance of cortisol in the person's body. What is cortisol? Cortisol is the natural steroid our bodies make. We have to have cortisol to live. However, too much cortisol causes major destruction in the body.

Throughout this month, I plan to talk about how Cushing's Disease has affected my life. It spares no part of our body or mind. It's a horrible disease!

I had a pituitary tumor. It was only half of a millimeter, but it was wrecking havoc on my entire body! That tumor was removed, and I had a brief remission of 3 months. My symptoms began to reappear, and I started testing for the disease again. I did not have new tumor growth showing on my pituitary, so we took out both of my adrenal glands. That surgery is called a Bilateral Adrenalectomy, or BLA for a shortened version.

I am suppose to be "cured", but when you take out your adrenals, you trade one disease for another. I will forever have Addison's Disease. However, I still have some symptoms of Cushing's Disease, and suspect that I have a bit of rest tissue where my adrenals use to be. Finding that is like finding a needle in a haystack.

I do not regret any of my surgeries. I am better off than I was before my surgeries! I really wondered if I would live long enough to get on the operating table, I was that bad! I felt really good for the first 7 months after my BLA, and made lots of progress. Then it all stopped, and I started gaining weight again. A lot of weight! I put back on 50 lbs. within 4 months! Then it stopped, and I've lost some of that. For quite a while now, I have not felt very good. Each day is a struggle. I don't know what I will feel like from day to day. Some days I feel half way decent, but it can change within hours. Most days I'm very tired, dragging, and no energy at all. I'm pretty sure I have Dysautonomia as well. That is dysfunction of the autonomic nervous system. The problem is, there are not a lot of doctors who diagnose it. The best in the state has a year waiting list to see him and they won't put me on the list until they have all of my records. That's a huge task! I also know that I have Fibromyalgia and Chronic Fatigue.

All in all, I'm still better than I was with Cushing's! I'm just not back to being healthy. I may never be. I've had Cushing's all my life. I believe my mother had it, and we are discovering that my children have it. It looks like it's genetic for us. I don't want my blog to see down and depressed, but I want to be realistic about how Cushing's makes us feel, and all of the aspects we have to deal with when having this disease.

Anyone reading the blog, feel free to ask about certain symptoms, and I'll answer! The whole idea of this is to bring more awareness to the public about this disease!