Should Have Seen It...

The pain of steroid withdraw or the pain of living with no adrenals, I don't know. I am miserable but happy to be better. Better is a relative term. I don't think I am going to get better in months. I think my recovery is going to be years. It is sinking in and I am depressed that it could be a realistic view. Spirits are high along with the pain levels. Read more!

I started this BLA journey at 150mg of cortef. I am down to 25mg. I am doing ok. Ok is a relative term. if you call severe muscle and bone pain, joint pain, impaired memory, low stamina and no immune system ok, then I am doing super!

As bad as that all sounds, I do feel better than I did with Cushing's Disease. The weight is melting off in dribbles. My body is reshaping itself more than the weight loss should show. I think that is all part of recovery. From above the stomach up, I am starting to look more like my old self. The stomach still needs work.

What I am finding on 25 mg is slight signs of AI. It is subtle but it is there and I have to wonder if that is normal, at least till I adjust. I never thought I would get below 32.5mg, but here I am. I think as my body heals and the weight is coming off, I think I am able to lower them doses. Where I took four doses a day, I know take 2 and occasionally take a very small 2.5mg in the evening if it warrants.

It isn't all easy, but I am doing ok. I strain to do 15 minutes of house work without having to rest for hours. I think in time, this to will get better. The pain, I am not so sure. I will gladly live happy with all this and be thankful that the Cushing's Disease is gone. I am working hard to improve all those symptoms. Time will tell.

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Having something like Cushing's Disease is certainly easier being the patient. I don't mean in the sense that you feeling bad makes it easier. I am talking more in terms of emotional and all the baggage that comes with having it or having someone you love have a terrible illness or disease. I always told my wife that I was glad I was sick. I could never stand to see someone I love have this. I should have known fate was fickle.

My 10 year old daughter is showing signs of the same disease. Her symptoms are more pronounced. I don't mean the ones you can't see, although those seem to be getting worse. I am talking about the physical ones that can be. Other things, which if you have Cushing's you know, are starting as well. It is a terrible slide she is on and it is intimately familiar to our family.

You would have thought fate would give our door a pass when it comes to rare diseases for awhile. Fate came knocking several weeks ago when our doctor handed us 20 kits to test for Cushing's Disease in my daughter. Know I know what it feels like from the other side. It is much worse watching it happen than having it happen to you, in some ways. I watch the denial in my wife's voice, but I can look into her eyes and I know she knows.

We have one family we know (and love!) that has the same problem. Father, son and daughter all have Cushing's Disease. The mother fought hard to get the help they needed. We are inspired by their story and know we will make it through this once again.

Knowing how bad it can get, I would gladly take the Cushing's from her and live it again if I could. I don't know any parent who wouldn't It was much easier living it than looking at the terrible disease from the outside and wondering about the one you love. I have looked at it from both sides now.

This is the part where I could say it isn't fair. We, as a family, decided long ago fair has no part in it. We will spend our energy on keeping focused and getting well. Not on negative things we have no control over. If we save our energy, we can use it on the really bad days. Everything about this disease is awful. I can think of no other disease that takes months or years of testing to prove you have it and then to prove if it is a brain tumor, lung tumor, or some other tumor. The reality of Cushing's is that the patient sometimes has to get so sick before the tests start picking up the disease. Nothing is ever easy about Cushing's Disease. Read more!

I have never been this exhausted in my life.

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Muscle pain, bone pain, and hip pain are all worse on rainy days. Even my hands hurt. While I feel better since my cure, it is sinking in that recovery really does take awhile. Having no adrenal glands has it's own suckie moments. The things that really still bother me the most are:

• Bone and muscle pain
• hip pain
• short term memory loss
• mental challenges
• stamina

I am working with PT/OT on that stuff. It is just slow going...but it is going. While it sounds bad, the good thing is things seem to be improving, ever so slowly. With Cushing's Disease, I wasn't healing. So while my body is blah, my spirits are not.


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Dear My chronic condition:

I would like to clarify that, while you may wreak havoc on my body, and maybe even confuse my mind -- you cannot have my heart or my soul. You cannot have my faith, my hope, or my love. There are some good things that
you have given me, things I never could have experienced had you not come to possess my body.

You have given me:

• strengthened prayer life and increased dependence on God's grace and strenth, rather than my own
• renewed friendship with strong, close, true friends.
• appreciation for every precious moment I am given. A gift that is sometimes lost on the "healthy".
• growth in character, perseverance, and hope.
• inspiration for to help others.
• more compassion for others who are suffering.
• better knowledge of my own body & health.
• a reason to eat more nutritiously and take care of myself.
• reasons to rest when I need it.
  

You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life's journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others.

Sincerely,
ME

Article written by Brandi Lasnick, © 2007 butyoudontlooksick.com
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To whom it may concern:

Congratulations! You have been selected to be the host for (any chronic condition -- RA, FM, lupus, MS, you name it). You will begin to experience many or all of these symptoms -- and may even deal with several of them at the same time.

--Pain can be anywhere you can imagine. We are equal opportunity destroyers, therefore we will choose many places for you to experience pain. We have even devised many different types of pain -- it could be aching, stabbing, throbbing, tingling, burning, gripping, or cramping. We are continually improving our repetoire of pain categories, so updates are to be expected.

--Dizziness. This can be accompanied by nausea, mental confusion, ringing in the ears, vomiting, loss of coordination, and sensations of spinning, rocking, or shaking. We try to simulate the experience of riding a never-ending roller coaster to satisfy your adventurous spirit. No safety harnesses required, and you have no choice of when the coaster ride starts,ends, or how fast it goes.

--Extreme fatigue (Now remember, this is not just being "tired". We will suddenly "pull your plug", so to speak, and you will have NO energy at all. Even dressing or taking a shower will be too daunting of a task for you to complete. And because we like surprises, we will NOT give you any advance warning, so you could be in the middle of the grocery store, at work, playing with you kids, or trying to clean the house.)

--Poor balance, lack of coordination. Let's just say you may walk or talk like you are drunk -- even if you haven't had any alcohol recently. And for those of you who have never indulged in alcohol, you are now going to
understand what it is like to be drunk and to have a hangover.

--Forgetting, losing, dropping things. These are just a few of the perks of your condition. You will learn to expect them, but never to enjoy them.

In addition to the symptoms above, we also want to eliminate some things from your crowded lifestyle. Here are a few of the things which will be taken away from you now that you are chosen to have a chronic condition:

The ability to stand or walk for longer than 15 minutes without experiencing pain in you feet, ankles, knees, or legs.

Tthe ability to sit for longer than 10 minutes without experience cramping in your legs and butt, or shooting pains in your back.

The ability to complete any task which requires more than 10 minutes of concentration, multi-step activities or long-term projects will take 2-3 times longer then average.

The ability to play and run with your children like you did before.

The ability to have a "normal" social life.

The ability to accumulate sick days at work/ school to earn the perfect attendance bonus.

As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available.

Sincerely,
Your chronic condition


Article written by Brandi Lasnick, © 2007 butyoudontlooksick.com

Thanks to Kim for sharing this on Facebook with many of us...I thought it good to repost! Read more!

When I think back prior to my surgery, had it been entirely in my control, I would have never went to surgery for the BLA. I think the cortisol had gotten that out of control that I would not have had the sense to do it. Like the doctor told me, I would always find a reason. A reason to not trust the doctor, the hospital or something. The Cushing's Disease was winning.

I sat in the room the morning of my surgery and tried to think of something to stop it. I knew for a fact the Cushing's Disease was getting to a point where the level of damage being done was drastic. The doctor(s) in a round about way were telling me I was going to die without treatment and soon...not years from now. MD Anderson told us the same thing. The Pit surgery put it hold for awhile, but it came back and it came back hard. I knew all that and I still wanted to run.

I wonder what it was about the Cushing's that made me feel that way. Did the high cortisol affect the mind? Or was it something from living with so much stress from a chronic illness for almost a decade? Was it really just something from the disease process or a character flaw and my fault? I didn't know then, and I am barely understanding it now. I know now that with this whole process there are things that happen to us beyond what the disease causes. Living though the process of chronic illness comes with it's own baggage and a lot of it isn't healthy.

Healing from Cushing's Disease began when I was cured with the bilateral adrenalectomy (BLA). I knew then that the muscles and bones would take months to a few years to heal. I found the help of physical and occupational therapy to help. In finding help, these people also opened my eyes to other things. They taught me that there is a disease process and that things we don't expect happens because of chronic illness.

However, I didn't know that curing Cushing's came with other unclaimed baggage. I am just now realizing what comes in the bags. It is a struggle. There are more things to fix than I had realized. Most of them, with good food, rest and love, will heal with time. I speak of more than just the body. I speak of mind, body, and soul. That won't fix everything and wishing it wasn't there won't make it go away.

There are many things left in the baggage. Instead of rooting through it and making a mess, I have decided to pull one thing out at a time and deal with it. It is my hope that I can concentrate well on fixing one problem at a time. Sooner or later, that bag marked Cushing's will be empty and Cushing's will be a memory. Time heals all wounds.
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...why I was told to stress dose with illness. I played hero with bronchitis and only took 5 extra here or there. Tried to fight it off with no antibiotics either. Just call me joe cool .

Felt worse than any day with Cushing's. Ended up going to urgent care last Friday and stress dosing the three days like I should have. It was a rough few days but I am feeling human again and on my normal dose. It is really hard to figure all this out. When I started the 2x stress dose, I didn't feel like I needed it. I felt terrible, but not really AI ish. After the stress doses I did start feeling better. Was still able to sleep like a baby. That, I figure, tells me I needed it, even though I didn't feel like I did.

I hope getting sick post BLA isn't like this every time. It was rough! (or maybe I'm just a big baby) Whatever it was, I'm sure I caused it to be worse. Joe cool indeed...more like joe fool! Read more!