Monday, July 15, 2013

I guess I am way overdue for an update.  So, I am more than 3 years post surgery to remove a teeny tiny tumor that basically ruined my life...well not my entire life but the physical part of it.  I wish I could be more cheerful but I am so tired of still hurting.  I really thought by now that my life would be semi-normal.  Don't get me wrong, I've lost tons of weight, no longer have the 'moon' face or hump on my back, my hair and skin are back to normal but I hurt all the time.  It is so sad to me that I honestly cannot recall the last time I felt good.  In reality, it has been about 5 years since I started to get sick.  It took 2 to get diagnosed.  My physician tells me that is the problem...going undiagnosed so long gave Cushing's ample opportunity to have a party inside my body causing damage that can't be 'fixed.'  It makes me angry because I begged and pleaded with doctors and specialists saying, "Something is wrong, I am not just fat!" It took 2 years and a midwife to diagnose me.  A midwife!  Not even a doctor, a lovely lady who was just doing my annual pap smear who knew me and knew I didn't look like myself and then took the time to listen to me.  God bless her. 
Now that my rant is over, I will tell you medically-speaking, my labs are good with the exception of my thyroid. We are still playing with the dosage of my thyroid medication because we haven't found the magic dosage just yet.  It keeps being increased and I am hoping we find my number soon.  No sign of relapse, which I am thankful for.  As much as I hurt, it is nothing compared to when I had Cushing's disease.  I will say I do miss one thing with Cushing's...the highs. I could clean my house in an hour..haha!  Of course the low after the high was hell but still...

Saturday, May 12, 2012 It has been a long time since I posted.  I guess I have good news and bad news for those wanting to know about Life post Cushing's.  The good news first...I am finally really looking better.  As in, I get daily compliments on how I look like the 'old' me.  For someone who deals with Cushings, that may just be the ultimate compliment.  It is especially nice when I run into someone I've known a long time that never knew I was that sick, for them to recognize me is an amazing feeling.  To someone who has never dealt with Cushing's...that sounds crazy but when my disease was at its peak, I'd see people I've known my entire life and it would take them a minute to recognize me and once they did, give me a look of horror like I had been in some horrid accident.  Looking at pictures from that time, I can't say I blame them because I didn't really recognize myself either.  So, my hair is now back fully and growing like crazy, my skin is clear and my face is thin.  I've lost more than 50 lbs and on the outside, I am well on my way to feeling like a normal woman again.  Of course, Cushings left many, many physical scars that I can do nothing about and no amount of weight lost will change.  So, unless I win the lottery and can hire a world-renowned plastic surgeon, I am stuck with that part of me.  The bright side is clothes can cover all that.
The bad news?  Well, I still have pain every single day.  I find that I cry when I stop & really think about it.  I cry because at this point, I cannot remember the last time I had a day where no pain existed.  I mean, I know they did.  I know my youth and young adult life was filled with energy and abundant pain-free days, yet I cannot recall what that felt like.  My body aches relentlessly, some days all over and some days one part more than the is very strange.  When I compare to 2 years ago, I have much more energy than I did then so I know I am making progress, however, it is slow.  I am 34 years old and I feel 70 most days.  It makes me angry to be honest...I feel cheated on the prime years of my life.  I have a 10 yr old son and I feel like he has been cheated, too...a Mom who just can't go like the other Moms.  Thankfully, he is an old soul and is content doing just whatever....he is such a joy.  As for the pain, I've mentioned it to my doctor and she assures me it is normal.  I went so long without a diagnosis and my body was damaged..add that to extra Cortisol it was getting then it all suddenly went away, leaving me with the damage.  She compares it to a drug addict going through withdrawals.  She said she has seen her patients have this type of discomfort for years but says it does get better.  As much as I want to believe her (everything else she has said has come true)...a part of me fears greatly that I will have to deal with discomfort forever.
The hardest part for those around me is the fact that I do look so much better than 2 years, 1 year ago.  They see this drastic change in my phsyical appearance and so they assume I am healed, all better.  The ones that I have shared my ongoing issues with have been very supportive but I don't want to burden anyone so I mostly keep it to myself. 
I have to keep positive though and look back to where I was and where I am...there IS progress so maybe in 2 more years, I can write that my insides match my outside.  I will keep praying for that and for some sort of preventative medicine or routine test that would catch this nasty disease early.  It breaks my heart for everyone touched by Cushings...

Wednesday, July 27, 2011

Less than a month...

and if all goes well, I will be off steroids for the first time in a long time.  I've been weaning since November and since then have lost about 30 lbs so I am beyond stoked at the hope of being done with them forever.  It is wierd, Cushing's is caused by your body producing way too much of the stuff, you get rid of the tumor causing that and then your body decides to stop making it all together.  At least that is what my body did.  Lab work is showing my body is making it, hence the wean but I will admit the nightmare of last Summer haunts me and makes me fear coming off it again.  Last Summer, my 'old' doctor stopped me cold turkey and I went into major withdrawals..spent 3 weekends in the ER and much longer on my couch. It was miserable.  Anyhow, I feel I am in good hands now and she has been slow with the wean but still, I am a little scared. 
In other news, I am feeling better little by little.  I still have crappy days and aches and pains that 'normal' people don't contend with but I can see progress.  Emotionally, I still have crappy days as well.  I have some serious self-esteem issues because of the weight & damage Cushing's has done to my body.  I get so angry when I think that even if I lose all the weight, some of the damage is there forever.  Logically, I know there is no reason to be one to be angry at and really, being angry changes nothing but still, I'd be lying if I said I wasn't sometimes.  Maybe that will change in time..I hope so.

Monday, June 6, 2011

Let's see where this road leads...

mm..well, I think I am still on the right path.  I am hesitant to get too excited because the road has been and really, still is long.  I've hit so many bumps that I am sick just from the ride!  Anyhow, I think I posted that I changed doctors back in November. I am pretty convinced that was one of the best decisions I have ever made.  It confirms the old 'go with your gut' type-thing.  I knew I had to.  It sucks because the new office is 2 hours away and I have to be there at 8:00 AM for labs and then an afternoon appointment.  It makes for a long day and more time away from work than I care to have to take.  Nonetheless, it is worth it.  My new doctor knows her stuff and everything she has said to me or done has proven it.  I am losing weight pretty consistently, which is soooo nice after gaining constantly for a few years.  I thought I was seriously going to bust at the seams if I gained any more but anybody with Cushings or who have been on steroids knows that weight is a losing battle.  You can eat nothing and gain 2 lbs.  And its not just the weight gain, you swell and hurt....blech.  Anyways, I am off track.  I have lost about 25 lbs so far but the very best part is that I am starting to feel better.  I have energy again..not tons and not much at all compared to the average woman my age but compared to a year, it is amazing.  And people tell me every day that I am looking like my old self again..that is worth a million bucks everytime I hear that.  It's hard to explain to someone who has never expierienced it but when you look in the mirror and don't recognize the reflection, it does something to you mentally. It's more than depressing, it is downright sad and it hurts.  And then you wonder if that's what you see, what does everyone else see?  A big, fat blob with thinning hair and bad skin....that's what I saw.  While I don't see what I want to see just yet, I don't see the blob anymore.  My hair is pretty much back to normal, skin is normal..still fat but not as..haha. 
Medically speaking--still on the steroid.  I go at the end of this month for lab work to see if I can wean more or need to sit still...I am sure hoping for more weaning.  I cannot wait to be off for good.
So, I guess my status for now is just trucking along...but looking forward to the end of this road!

Tuesday, April 26, 2011

Making a little progress!

I had my check-up yesterday.  Down 17 lbs!  Can we say woo-hoo?  So, it appears the steroid-wean is going well.  I am now at 10mg once per day..a long way since November.  My cortisol level is still a tad on the low side so we are gonna stay here & cruise for a little longer.  The doctor is optimistic that my body is recovering and hopefully in a couple of months, we can wean a little more.  As long as I am headed that way, I am content.  When everything in your body has taken a turn for the worse for several years, any step the other way is more than welcomed!  Baby steps but steps nonetheless.
I still have days where I struggle physically and that leads to a mental struggle.  My mind tells me I can do a lot more than my body is quite ready for and that is frustrating.  My doctor tells me to be patient and just move a little more each day.  She & I both are excited that the swimming pools will be ready soon because that will be a great form of exercise for me.  Recovering from Cushing's is sort of a viscious need to exercise to get stronger, lose weight but your body is so damaged from it, that you are limited to what types of exercise you can do.  You eventually can do more & more but it takes much longer to get there.  I see people that I know could do things if they just wanted to and to be honest, it frustrates me.  Not so much mad at them but I think back to when I was healthy and could have done so much more and I get ill at myself.  Not that it would've mattered to much since Cushing's was lurking but still...oh well, I guess there is really no sense in the 'what could have been' game.
While at the doctor, she was telling me about my tumor and that she got the sample of it from the hospital I had my surgery at..she was telling me how tiny it was.  They say the pit gland is the size of a pea and this tumor was on that and they say it was teeny-tiny.  That just blows me away....something so incredibly small caused such enormous damage to my body.  Cushing's affected almost all my internal systems, my muscles, my skin, my hair, my I slept (or didn't sleep) weight.....and the list goes on and on.  Insane, really.
Anyhow, sorry I got off on one of my rambling sessions.  The doctor was pleased and I will admit it was so great hearing positive things instead of more reports of damage.  That little light at the end of the tunnel is getting a little brighter.

Friday, April 8, 2011

Still truckin' along...

I cannot believe it has been so long since I last posted. Let's see...a good bit has happened.  I ended up switching Endo docs because, well, to put it nicely, I just wasn't getting the care I deserve as a patient.  I am now going to a clinic that specializes in pit gland disorders such as Cushing's.  I started in November and in my first visit, felt like I got more information that I had in a year with my old doctor.  I was told that the dosage of steroids I had been on for the past several months was way too high for my body size and she was not surprised one bit that I wasn't feeling any relief from the Cushing's symptoms.  She said she had no way to confirm I hadn't relapsed or that the tumor wasn't fully removed in the first place at that point but had strong suspicions that my lack of freedom from symptoms was steroid-related.  So, we started a wean.  Luckily, my body has reacted well thus far.  Don't get me wrong, I still feel the aches and pains that come along with coming off steroids but I haven't been sick-sick.  I am now on 10mg per day and hoping to keep on the downhill slope.  I am still being tested regularly.
I did have a major set back in December.  I ruptured 2 discs in my back and had to have surgery 2 days before Christmas.  Then, shortly after surgery, learned they accidentally left a piece of the surgical tube in my back and had to have surgery yet again.  Happy Holidays, huh? lol
So...that combined with the weaning process has not been fun but I think..maybe...just maybe I am starting to see a small light at the end of this tunnel I've been in for years now.  I am hopeful anyways.

Saturday, October 2, 2010

5 months post-op...

My surgery to cure my Cushing's was 5 mths ago.  I am still fat and round and still get tired quickly.  I guess I was hoping that by now I would see some major improvements even though I was told it can take years to feel and look 'normal' again.  I am still on dexamethasone..without it, I feel like death.  At some point, I will have to try and 'wean' again but the thought scares me to death because of how sick I was when I was taken off the first time., it's not all bad.  My hair is thickening back up and growing and I don't hurt nearly as much as I did.  I guess I am just so sick & tired of not being well so I am whining today.  I so long to be well and be able to spend an entire day out and about without paying for it the next day.  Everyone tells me I look so much better in terms of the color in my face, etc and that along with the other small improvements tell me I am on my way to healing but I sure wish I could speed it up.