Still addicted…..???

I was going through my stats on this blog for the past few months, and found it very interesting that the post with the most views is “I’m a recovering addict…” !!! I’m not sure – are that many people out there searching by “addict” tags and happen upon my site, or is it the “recovering” tag that gets their attention? Either way – thank you for visiting my site! And here’s another “addiction” story for you!

Yes, I am still addicted – rather, I am still in need of steroids. I certainly needed them to maintain my strength during my recent wound-vac episode following the seroma surgery, which was due to an infection from my hysterectomy surgery. (Bad luck, or bad/unclean practices by the OBGYN surgeon? You decide – I know I have.)

Anyway, I had the wound-vac removed on September 14th – what is left of the incision is healing nicely, with the help of a dressing called ‘adaptic.’ That same day, I developed a nasty upper respiratory infection (that is still hanging on, by the way). Then, of course, my family had to endure the funeral of my uncle last week…also quite stressful. So the past few weeks have definitely not been the right time to try and wean off my meds.

With things winding down over the weekend, I decided to withhold the steroids… mostly because the winding down part caused me to forget to take my regular dose of 10mg a.m. on Saturday! By the time I remembered, it was late in the afternoon. In fact, my husband and my kids and I had just returned from a 2mile walk in the woods (which I accomplished with no problems!!), and I knew if I took my meds then, I wouldn’t be able to sleep that night. Since the labs aren’t open on Sundays, I withheld that day as well and drove my sleepy butt to the lab by 8a.m. yesterday morning for bloodwork. I should have ACTH and cortisol level results hopefully by the end of the week.

Truth be told, I harbor a little fear that my body is still not ready to cease meds. I have been so wiped out over the past few days. In fact, yesterday afternoon I took a nap and slept so hard that when I was awakened by the phone ringing, I was completely disoriented and weak enough that I couldn’t pick up the phone in time. Then I was crabby because I had been woken up, and it just wasn’t pretty.

My point is, if my body were able to make enough cortisol on its own, I don’t think I would feel so “blech.”  Or, on the other hand…..are these just withdrawal symptoms that are less harsh than before because I’m on such a low dose of steroids? If this is withdrawal (and I know it only takes 3-4 days to get over it), then why would I want to go back to taking the full 10mg everyday until I hear the results of my bloodwork? Because if the results are good and I get word that I can discontinue steroids, I would have to go through withdrawal all over again!

I go back to work this coming Monday. At best, I have the weekend to recover from withdrawal if I can discontinue my meds. So I have made an “executive decision” to cut my regular dose in half. Here’s hoping 5mg will sustain me!

I’m a recovering addict…

That’s right – you heard me.  I’m a recovering addict!  Funny thing is, I never knew I was an addict until I was diagnosed with Cushing’s Disease.

As you know from reading my blog, Cushing’s Disease is the result of the body’s exposure to too much cortisol – a glucocorticoid (steroid) hormone released by the adrenal glands in response to ACTH (adrenocorticotropic hormone) that is released by the pituitary gland in the brain.  Cortisol is essential for normal body functioning (it helps us respond to stress and even low blood sugar), but too much cortisol over time can have devastating effects…and in some cases, it can be fatal.  Cushing’s Disease is an overproduction of cortisol caused by a pituitary tumor.  (I had my tumor removed on August 18, 2014.)  When the pituitary tumor stimulates the adrenal glands to produce cortisol in mass quantities, your body becomes used to the excessive amount of steroids; thus, Cushing’s patients become addicted to cortisol (steroids).

After the tumor is removed, your body “crashes” (the tell-tale sign that the surgery was successful) – cortisol levels drop and your body requires replacement hormone therapy (hydrocortisone or Cortef) so that you do not go into adrenal crisis.  However, part of the recovery requires patients to taper off the Cortef, which encourages the pituitary gland to function normally again – releasing normal amounts of ACTH to stimulate the adrenals to release normal amounts of cortisol.  Tapering is similar to withdrawal.

All I can say is “yuck!!!”  Recovery from surgery is not as easy or as quick as I pictured.  If you remember, I experienced a temporary setback with my right eye.  Due to swelling at the surgical site, the 6th nerve of my right eye was affected and I had what was termed a lateral palsy.  I had limited eye movement and moderate to severe pain.  In addition to the steroid replacement I was on, my ENT doctor put me on a 2nd steroid taper (prednisone) to help clear up the right eye palsy.  The additional medication worked nicely; however, within the last few days of the steroid taper for my eye, I started experiencing joint and muscle pain.  And I’m not talking about minor aches and pains – I talking about joint pain like your bones are gonna snap.  Muscle aches like someone took a chain and beat you.  NOT pleasant.  I also noticed some fluid retention in my legs and ankles, but it was minimal compared to what I was dealing with before my surgery. I tried going back to work at the end of September, but I only lasted a week.  I plan on going back at the end of October….I sure hope I can handle it this time.  You wouldn’t think standing up in front of a class, writing notes on the board, and lecturing would be tiring.  Au, contraire!!  (Recovery also means the constant need to rest!)

I feel very frustrated with my energy level.  I feel the need to get up and exercise and walk, but there are days when I just can’t.  Most days, it hurts to sit, but when I get up and move around, it eventually hurts to do that, too.  The only relief I can get is to lay down.  I know this is part of the steroid taper and the recovery process, but it seems ongoing with no relief.

I haven’t lost much weight – maybe 10 pounds – but I was told weight loss would be easier to achieve once I am off the steroids.  My doctors say I look thinner and that my appearance has changed.  Also, I’ve noticed a tremendous difference in my appetite – it’s pretty much non-existent!  Some days I can’t stand the thought, sight, or smell of food.  I’ve had to force myself to eat quite a few times.  I eat once a day, but I’ve been supplementing my diet with Boost or Ensure.  It’s funny, I really didn’t eat a lot before the surgery.  Now, I eat about half of what I used to for a meal.  We went out to Andriacchio’s for dinner with family a few weekends ago.  I ordered their incredible spinach and cheese calzone and ate…oh, I don’t know, a fourth of it?  That was it.  No salad.  No appetizers.  A few bites and I was done.  I even dread making dinner – mostly because I HAVE to (for the kids), but also because it makes me nauseous on certain days.

On the up side:  the easy bruising has gone away, the ancanthosis nigricans (black patch on the back of my neck at the hairline) is GONE,

and my Buffalo hump has gotten smaller.

I regret that I didn’t take pictures of these two things before the surgery.  While the Buffalo hump hasn’t changed drastically, the black patch on my neck has.  Here is what ancanthosis nigricans looks like:

I am no longer on blood pressure meds, and the acne and unwanted hair growth is subsiding.  My concentration level is also much better.  Even my hair is feeling and looking much better – more like hair instead of straw!!  These improvements are wonderful and I’m so thankful.  If the aches and pains would just go away….I know I’d feel so much better.