Feeling like crap!

It always seem 2 steps forward must have a step backward. That's where I'm at now. I think I either have a cold or the starting of a sinus infection. But OMG when it hit, it's like a ton of bricks!

I didn't feel so hot yesterday. I was weak, fatigued, and didn't want to eat much at all. But overnight it got worse. I had weaned down to 50mg a day (30/20), but last night I ended up stress dosing back up and even took extra this morning. This sucks!!

But I'm resting today in hopes its just a cold & not anything else. An infection would suck at this point. And it's Friday of all days! I hate steroids and illnesses!!

Merry Christmas Eve & quick update!

Wanted to wish all my followers a very Merry Christmas! I know I don't post as often as I should, but thankfully my life normally is very, well, normal. Lots of day in day out stuff with the kids & I feel great 95% of the time. It's when I have things happen like this last surgery that I feel I can post & share how I manage.

In this case it's been 2 weeks since I left the hospital & I'm down to 60mg of hydro daily. (30/20/10) I'm feeling it now & my body craves it by the next dose. Hate the headaches, achiness & weakness that comes with it. Especially at this time of the year. I'm holding doses now for 3-4 days before weaning & I think my next cut will only be 5mg in the evening. We'll see. But for the most part, I'm hanging in there!

Thanks again for following me & have a blessed holiday!!

The CSF leak back story

No one has any idea why I had a CSF leak again after all these years. It was so slow, I had no other symptoms other than the annoying drip in the morning & then every so often during the day/night. No unusual headaches or anything. The headaches I did get went away with Advil or Aleve. 

I think I've had it for awhile (I'm going to guess since the summer) and it progressively became worse. In October, I had my annual butt-kicking sinus infection & I went to my primary doctor for antibiotics. I noticed the drip more then & mentioned it, but she said to take the meds & it'll go away. It didn't. 

So in November I went to the ENT because it was still dripping. He scoped my nose & because of all the scar tissue, he couldn't see anything. He gave me allergy meds & a script for a CT scan. Two weeks later, the allergy meds/sprays didn't work and the CT scan was inconclusive, due to not being able to see through all the scar tissue. So he said I need to see a neurosurgeon to rule out a CSF leak.  So another 2 weeks go by & I finally see the Neuro. I explain this long story, lay down for 5 minutes, sit up giving him 3-4 drips to analyze & get back to me. He was pretty confident it was a CSF leak hearing all this. That was a Friday. First thing Monday morning I get a call from his P.A., saying it was a leak & they scheduled me for surgery on Thursday. 

I was floored. I was in such denial, I just lost it. It was all happening too fast. I had to go in the next day for all sorts of preop tests etc. Not being in Seattle where they knew what to do and how to handle everything with me was terrifying! The Neuro had done hundreds of these and I felt I had to trust him & God that they would get me through it. 

Thankfully he did his job well & I no longer have the stupid drip. But from now on, there's no more roller coasters, diving & swimming to the bottom of the deep end or anything that puts pressure on my head. I've even sworn off straws indefinitely. They give you wrinkles anyway. Anything to not have to through this again. 

Follow up!

ENT says everything is healing nicely & gave me some breathing relief by pulling the old snot sucker out and getting rid of some of the congestion I had. He said it may last an hour, but I swear it cleared the majority of it up. Still no nose blowing, using straws, sneezing etc. I see him as we'll as the neurosurgeon in 3 weeks. 

I'm also weaning well. Down to 80mg - 30/30/20.  I still feel weak & my stamina is taking a while to come back so I can't do very much, let alone quickly.  But most of my Xmas shopping has been done online so that's not been an issue. My kids are old enough to do a lot of the wrapping & hubby can do the rest.  So overall things are moving right along! 

Merry Christmas to all!

Current update...

First off I want to start out by saying I'm feeling ok! But I found out 2 weeks ago today that I had a CSF leak. Not going to give the back story right now, maybe another day. But I saw the neurosurgeon 2 weeks ago, explained the situation & managed to give him some drips from my nose. Monday he calls me & says indeed its a CSF leak & I need surgery ASAP! So they scheduled it for last Thursday right here in the armpit of NJ. 

The surgery itself went well & thankfully was successful. But this recovery will be similar to my pituitary surgery. The hospital experience was much worse. The nurses were great but I swore the weekend doctor was trying to kill me. It was a long 5 days on my back. I was in the icu, so they did their protocol which was above & beyond what I really needed. I had 2 iv's, blood pressure cuff going off every 30 min around the clock, blood sugar finger sticks 3-4 times a day, bloodwork drawn (not using iv's) 2 times a day, pulse ox monitor on finger, tubes all over to measure my heart etc... 

The nurses had to come in every hr on the dot to check my mental status so I couldn't have any pain relief other than Tylenol!! On top of all that other stuff, there's what I actually went thru... They went up my nose, scraped my sinuses, repaired the CSF leak, took a piece of fat from my stomach (small incision along my csection scar) & put a long tube up my back to drain the fluid giving my brain time to heal. They took that out on Monday & had to put a single stitch all w/o lidocaine or anything stronger than Tylenol! The draining of fluid from my back once an hour gave me the worst headache ever. I couldn't lay on my sides, so all around it was just uncomfortable. I was given 25mg Fentanyl the last 2 days in the hospital & at one point the on call Neuro had come in to check me after I had just taken the fentanyl & I was getting tired finally after not sleeping all night & she freaked out that I wasn't fully aware & awake.  So again she cut the dose in half to 12.5mg & to twice a day only instead of every 6 hrs. Serious pain & stress!!! 

Then...you add in the fact that normally I need steroids to survive & they had given me just such a large dose (not following my endo's orders at all!) & wanted to wean me right off them quick, as if I wasn't totally stressed out & in pain. Lack of steroids at one point added to the headache. I was at a ten for pain level & they gave me TYLENOL!! So you see my frustration. Thankfully I managed to fight w/the doc about how I needed the steroids & my husband got to the hospital on time to enforce the issue. She would wean no more & my endo could deal with me & the weaning process.  

So that's where I am now. I just got out on Monday on 150mg of hydro to wean from. Again. As of today, I'm on 120mg. I take 50 in the morning, 40 in the afternoon & 30 in the evening.  Slow and steady as they say. Literally & figuratively.  

DAY 26: Thought I could do this...

I thought how hard can it be to write something about Cushings for 30 days? Well, being in remission means I have more energy to do stuff during the day but then I'm wiped by 9pm. My cold is gone & I've been catching up on things. Like housework & doing my room mom duties for my sons class, taking my kids to all their extracurricular activities, practices & games. After I'm done at the end if the day, I'm too tired to get on the computer & I can't figure out how to blog via email/text from my cell. So I do it the long way on my phone & it sucks. So that's why I just haven't done it at all. The weekends are the hardest too because that's when all the games are. Between soccer & baseball & photographing both, it's crazy! I'll try to do the last couple days tho!!

DAY 23: Steroid Induced Cushings

Have you ever had to take steroid medicines long term? For any medical condition, like asthma, crohns, or other inflammation issue? Well I mentioned a few days ago that my son was sick with kidney issues when he was younger.  Three years old to be exact.  It was the scariest time.  He had something called Minimal Change Nephrotic Syndrome. His damaged kidneys leaked protein into his urine. As a result, not enough protein was left in the blood to soak up water. The water then moves from the blood into body tissues and causes swelling. He gained quite a bit a weight very quickly before we realized what was going on.  He wasn't peeing and he started getting edema.

Fluid Retention 2003

We saw a nephrologist (kidney specialist) who put him on high doses of steroids.  It was the oral version of prednisolone - Orapred. He was on this for months and we even had to wean him off it.  We had NO CLUE what this medicine would do to him and the doctors didn't tell us.  Or if they did, they stuck it in there with "it will help make him better" which is all that parents really listen to! They also gave him some Lasix to help remove all the excess fluid from his body.  While taking the Lasix, he peed and peed and peed!! He lost all the weight he'd gained in fluids!  But then came the steroids.  It came on slow, that we didn't even really see it til it had already made an impact on him.  I hate showing pictures and I feel so bad for my lil' guy, but you can see in the pictures I added how he's got total moon face.  He also got very moody and angry too.  It wasn't until my issues that I understood why.

Swelling in face due to Steroid use 2004

Could there have been another drug to help him? I don't know.  I know the doctors could've been more informative, but I would've done anything to make him better.  That's the problem with steroids.  It's so easy to be used to just fix an issue.  But long term use can really mess things up inside the body.

Today doing just fine.

My son is fine now and has not had an issue since.  (Knock on wood!!) But I will always be looking for any damage that the use of steroids did to him.  I pray it did nothing, but now I think twice before letting my family take steroids if it's not absolutely needed!

DAY 21: eHow sucks for medical advice!

eHow.com is just one of the reasons why doctors say don't rely on the Internet for reliable information! Another Cushie blogger found an article that was written by eHow.com about Cushings. Or at least what the author thought cushings was! After I saw that, I went to eHow.com directly & searched for cushings. OMG! There were many articles! Not all by the same person and unfortunately not all those were correctly informed about cushings either!!

People look cushings up in Google and this is what they find?! Misinformation that they take back to doctors. Doctors then get annoyed at those of us who really do suffer. It's a never ending cycle because I know eHow isn't the only site misinformed about cushings. So please when you read eHow, read it with a grain of salt, especially when it comes to medical advice. Here's the link to the other Cushie blogger that you should read. http://blogforacushiecure.blogspot.com

DAY 20: Medical Community

One of the hardest things about Cushings in general is getting diagnosed.  It's hard that this disease puts us through horrible symptoms, but what makes it harder is doctors not believing us and blaming it on something completely different.  Doctors who don't listen, don't care, don't want to learn.  Doctors who want to treat and street.  Unfortunately, that's not Cushings.  Cushings needs lots and lots and LOTS of testing to be diagnosed.  Like I've said before, everyone is different and needs different medical care.

But in the last 10 years, my faith in the medical community has wavered. Oddly enough it didn't start with my Cushings ordeal.  It started with my husband and his missed cancer, and then my son who had kidney issues. It just happened to have ended with me and cushings.   I am now sooo on top of doctors when they start passing out a diagnosis!  I question everything.  I research everything.  I feel like I can't rely on them anymore.  I've called one endocrinologist already.  This was how my call went to one of the physicians' assistants.

Me: Hi there! I was wondering if Dr. Xxxxx is familiar with Cushings Disease and has treated any cushings patients all the way through to surgery?
P.A.:  The doctor is familiar with Cushings, but he's never had a cushings patient.  Cushings is not a common disease.  Though if the doctor saw a Cushings patient, he could diagnose them.
Me:  Has he diagnosed anyone with PCOS?
P.A.:  Of course! That's a more common issue, especially among women. It is treatable too.  
Me:  Is it possible that any or all of those patients could've had Cushings, since they do show similar symptoms?
P.A.:  No.  That's not possible.  Doctor Xxxxx has been in the field for 40 years and would know a Cushings patient if he saw it.
Me:  Oh.  Ok.  Thank you very much for your time.

REALLY?!?!?!!  I wanted to scream! I wanted to tell this so called assistant to really look it up! That it was more prevalent than she thought!! Because that doctor has no clue what he's doing?!?!!  All those poor women who have no clue if they really have PCOS or Cushings or both?!?!

If you are reading this... Question EVERYTHING! From everyday diagnosis, to medicine to getting a second or more opinion!!   There are good doctors out there, but you really have to look to find them!! So my Endocrinologist search continues...

DAY 19: Media giving the wrong impression?

One thing I hate so much, is seeing articles in the media about stress and not how it relates to Cushings. They are all over the place! Some of the claims include just enough scientific fact to make even the savviest consumers say, “That makes sense, I think I’ll try that.” They hit home emotionally by focusing on that common hot button that stress is (and who isn’t at least a little stressed in this day and age?). Brilliant marketing. Convincing even. Unfortunately, most of the claims being made are completely false, with only a tiny thread of truth woven in.  There are so many people out there struggling with Cushings and they read this stuff and think it will help!  Hopefully they see that it doesn't and a doctor will listen to them, but that's not always likely either!!

Here's one article: How to Stop Stress Eating.  It talks about things you can do to stop eating so much.  This is one of the first things that doctors tell patients, is that they have to lose weight.  Many Cushings patients actually try to eat well and yet how can we really prove that when cushings makes us LOOK like we are eating everything in sight? Some people probably do eat when they are stressed.  I know I was one of them.  But I know not all my weight was because of that.  High levels of cortisol are merely one contributing factor to storage of abdominal fat, not the primary cause. An excess of calories from too much food and not enough exercise is what makes someone gain weight.  Stress is not what causes someone to get fat. Not everyone who is stressed gains fat. Many people even lose weight while under stress.

Here's another article:  Five Questions to Live Stress Free! This one tells you what to do so you aren't so stressed.  But there's not real help here at all.  If someone is struggling from Cushings, none of these questions will really be answerable.
First questions is "What is Really Bothering Me?"  Most cushies have no clue what it is that's really bothering them.  It also could be a myriad of things that just doesn't go together.
Question two is "Who Am I Angry At?"  Again another question that a cushie is going to say, I don't really know? Rage can come out of no where and for no good reason!
Third question is "What is My Vision?"  Well that we may be able to answer, sort of.  We all want to feel better. We want to do things and get on with our lives.
Question number four: "Who is Draining my Energy?  "Really good question! Too bad most people won't look deeper to the cortisol connection.  Too bad doctors will blow it off and not look further themselves.
Last Question: "Who Do I Need to Forgive?"  The answer would be yourself.  We as cushies are sooo hard on ourselves.  Especially when still trying to get diagnosed.  There's no need to forgive it all until a doctor apologizes for not looking into Cushings to rule it out completely first!!

So be careful when reading these articles as they may not be giving you the whole story.  Maybe one of these days in the future we'll see a story on stress AND how it may relate to Cushings.  Hopefully someday.

DAY 18: Hand it to Cushings

Cushings takes so much away from each and every one of us.  Fight back and get informed!! Learn what your options are, learn what Cushings is and what it can really do to you if not taken care of asap!

DAY 17: Guilt post Cushings

One thing that I have left over post pit surgeries, especially since my MIL died, is guilt over how I treated people while I had Cushings. I'm reminded my by my mom, husband, kids what I was like just a few years ago. And how my MIL never really got to know the real me post Cushings. I'm a better person now, but I wasn't back then. I yelled, I was rude and generally wasn't pleasant to be around. Everything bothered me. At the same time, I couldn't stop it. The rage would come on & leave just as fast. I felt like I couldn't help it. I can make it up to all those that are still here but I feel bad I can't make it up to my MIL. She tried so hard to be good to me & the kids…

DAY 16: Hyperpigmentation caused by Addison's Disease

The cause of hyperpigmentation usually is traced to the activity and presence of melanocytes. When there's sun exposure or idiopathically in some disorders, hyperplasia of melanocytes occurs and causes hyperpigmentation. Freckles is one form of hyperpigmentation. That is something that I have developed since my pit surgeries! I never had freckles before. Ever. But now, as soon as I spend more than 10 minutes in the sun, my whole face bursts out into freckles!! I've never had my melanocyte stimulating hormone (MSH) tested before but I'd love to get it done to see what my levels are. With my ACTH levels still at the upper end of normal it's got to cause some of these little issues! Elevations of MSH and ACTH levels occur as the pituitary gland tries to stimulate the adrenal glands, melanin production increases, causing hyperpigmentation. The hyperpigmentation is diffuse, but more pronounced in sun-exposed areas. Hence, the freckles.

DAY 15: How I found out I had Cushings

This was taken in the fall of 2006  (Ick)

It's been 5 years since I first found out I had Cushings. It started with my annual trip to my OB/gyn. I told my gyno that I'd been having symptoms that I'd never experienced previously with having PCOS & Endometriosis. He thought it might be a good idea to see an endocrinologist. So I made an appt & saw a local endo 2 months later (in Jan 2007). I was asked to do many blood tests. I had no idea what they all were or what the endo was looking for. When I had my follow up appt, the doctor seemed surprised at the results. I asked the endo what she thought & she told me she didn't know. She asked me to retest again & see what happens. Worried, I asked her for a copy of the tests. I went home & looked up the results. Sure enough, it all pointed to Cushings. So I retook the tests & went back to the endo. She told me she believed I had Cushings.

Taken recently April 2012

 I was in denial & she still was still confused because my levels didn't make sense to her. My cortisol levels were normal, but my ACTH levels were high. My urine tests were high but my salivaries were normal. I continued testing every month. Finally endo told me to see a neurosurgeon to get an IPSS done. I did just that. Unfortunately the neurosurgeon told me the results of my IPSS were inconclusive. So after spending a year w/o moving forward, I went out west to find a real Cushings Specialist. I decided to go to Seattle to go through Cushie Camp. I went at just the right time because all the testing came up high. Because of family obligations I had to wait on surgery but in June of 2008 I had pit surgery & the rest is history!! :-)

DAY 14: Things that raise & lower cortisol

One of the first things one should do when testing for Cushings is to get off all medication if possible. That includes the birth control pill for any women that are on it.  There are many drugs out there that will mess up results and may even make cortisol levels higher or lower than they really are!

Even after surgery there are some meds that I can't take, because they lower my cortisol.  My cortisol is already low enough, I don't need it any lower! I learned the hard lesson yesterday.  The night before last, I took NyQuil.  I knew I was sick with a cold and thought I could handle it.  I felt fine for the most part.  But as I learned today, I have a sinus infection.  That infection alone, lowered my cortisol levels.  Then on top of that I took NyQuil, which lowered it some more! No wonder I felt like total crap yesterday!! It took 50mg of hydro yesterday and 30mg of hydro today to feel better.  But I digress...


Things that will lower your cortisol levels:

1. Grapefruits & Grapefruit Juice
2. Medicines like: Xanax, Azithromycin, Biaxin, Bactrim, Dextromethorphan, & some Anti Depressives
3. Supplements like: Grape Seed Extract, Co Q 10, Ginseng, St. John's Wort, Fish Oil, & Vitamin C

Things that will raise your cortisol levels:

1. Alcohol
2. Dehydration
3. Caffeine & Guarana
4. Exercise
5. Herbal Supplement Licorice
6. Estrogen, Progesterone, & Testosterone

There are a lot more medicines and supplements that affect your cortisol levels.  Just ask your doctor if any medicine you take will interfere with your testing! Or if you are postop, will that medicine lower your cortisol levels so you will have to stress dose with hydrocortisone! I'd hate for you to find out the hard way like I did!

DAY 13: Sick. Stress dose sick.

Since coming home from Hershey, I seemingly caught my kids cold. On top of the fact that I've been on rides & up late while we were there. It has just hit me like a truck!! I feel tired, weak, lightheaded, dizzy, headache, nauseous, on top of being congested with a sore throat. I've been in bed & couldn't get up except to go to the bathroom. I ended up stress dosing. I took my 20mg & when I realized I was weak & nauseous going to the bathroom, I took another 10mg. It didn't get better. I took another 20mg & I didn't start feeling better til 8:30 pm tonight.

 I'm still weak & tired but hopefully tomorrow I'll feel back to normal. Sick, but fine that is. I get so scared & paranoid when I get like this. I have yet to have to go to the ER for a crisis, but I'm sooo afraid the docs won't know what to do with me. It's one if the things I have to deal with tho postop. It's scary. But thankfully I'm ok.

DAY 11: Cushie Faced Celebrities

Ashley Judd is one of the newest celebrities to be struck by the evil that is steroids. To be judged by that insidious moon face.  I feel bad for her & I wonder if her doc even knew that putting her on that much steroids could cause her to look like that.  It's sad that the media is tearing her apart.  They are saying she had plastic surgery. But that's not a compliment! No one would  pay to have moon face!? In any case click HERE to read Ashley's story!

DAY 10: Finacial Aid to Help Get Diagnosed

  http://www.rarediseases.org/news-events/news/cushings-pap
"In partnership with Corcept Therapeutics Inc., the National Organization for Rare Disorders (NORD) has established a Cushing's Syndrome Patient Assistance Program for patients with endogenous Cushing's syndrome who need financial assistance with certain costs related to their medical diagnosis and/or care."

This is a great help since testing for Cushings can be so costly! Even just going from doctor to doctor and then deciding to see a Cushings Specialist that's across the country! It all adds up! This is a nice program for those that need it!! I hope many people can take advantage of it!

DAY 9: Find endocrinologist!

This week it's very important that I find an endocrinologist! I was told by Pfizer that they really want me to have an endo monitoring my GH use & levels. The guy on the phone made it sound like they won't be sending me another pkg of shots. :-( That would totally suck!! I also need someone to help me watch my cortisol & ACTH levels. So I will be calling some around my area & see if I can find anything!! I have to come up with some questions that will let me know if this guy is serious! Like 'what is his test of choice to help find out if someone has Cushings?" I'll also see how he does with me knowing something he may not. I'll show him all my testing & see what he says with that too. I will post about my visits after they happen. But I can tell you I'm not looking forward to it!!

DAY 8: Happy Birthday Harvey Cushing!

Harvey was a neurosurgeon & "shortly before retirement, Cushing delineated the syndrome of pituitary basophilism, which was almost immediately called “Cushing’s disease.”" Because I'm on my phone & away from, I'm going to leave you with some links to check out if you're interested!

http://www.med.yale.edu/library/historical/cushing/family.html

http://en.m.wikipedia.org/wiki/Harvey_Williams_Cushing

DAY 7: My body & mind after Cushings

Today my kids, hubby & I are in Hershey Park. My kids wanted me to go on the scrambler, tilt-a-whirl or even the carousel & I had to say no. I just can't do it. Since my pit surgeries I just haven't been able to go on anything spinny. I did once & it haunted me for 2 days. This isn't just an age thing, I get wicked headaches, nausea & lightheaded for hours after & it comes & goes for a day or two! I can go on a roller coaster but 2 days after that it usually catches up to me too. Just not at the moment like the spinny things do.

The other thing that gets me (and I've mentioned it before) is that my memory is shot. We walked all over the park, but when my kids asked ME where this certain ride was I couldn't tell them because I couldn't remember!! We had just been there 45 min earlier! My muscles aren't what they used to be either & I had to take quite a few breaks. But we made it through & everyone enjoyed themselves. Even after resting a bit, I'm exhausted so am off to bed!!

DAY 6: How Cushings Made Me a Better Person

For many months after my pit surgeries I was sure Cushings was going to come back. it was always a thought in the back of my mind. Too many people I knew had had a recurrence, so why not me? Well that didn't happen. It was about my 1 year anniversary that that changed. There was nothing special about the day, I just felt 'normal' like everything was going to be ok! From that moment on I felt a new appreciation for life. Im a better person now because I had this disease. It made me appreciate the little things in life. Hearing the birds, watching my kids laugh, even being able to touch my toes & not come up dizzy! I was more grateful for the people in my life & was even more sympathetic to any medical issues they went through! Because of Cushings I'm a stronger, wiser & more sympathetic person. It's a horrible disease to have, but when you get to the other side & are well it makes you see things so much differently!

Day 5: What I learned the hard way

When I finally got to the point that I was ready for surgery and ready to feel better, I wanted the doctors to go in and take it all out.  "Be as aggressive as possible!" I told the surgeon.   I learned the hard way, that the aggressive way comes with it's own issues.  Once the pituitary has been sliced up and the Cushings tumor is gone, what's left is a lack of functionality.  That was the one thing that I didn't read up on before my surgery.  I didn't know about, let alone understand, about being hypopituitary.  What does it entail?  Is it bad?

3 weeks postop, recouping.

Well let me explain to you what I felt like the first 6 months after 2 pituitary surgeries.  For 2 weeks, I felt great.  I was on 90mg of hydro and could only imagine if this was what my body produced (and more) to make me feel so great before surgery.  As I weaned down, the only way I could describe it was like a roller coaster.  You feel ok once you first take the lower dose. Then you go up that giant hill as the days progress on the lower dose.  You think things will be ok, then BOOM! Day 3 or 4 and you start coming down that hill. Your head hurts, your stomach hurts, you are weak and you just don't want to move! Eventually I got to a dose that I could stick to for awhile, so finally I was at an even level.  No more headaches, body aches etc, EXCEPT when I would do too much in general! So I had to still take it easy until my body got used to this dose. 

my thinning hair 3 mos postop

Three months out now and my body now is used to being on 20mg of hydro, but I still had some weird symptoms going on! My hair was falling out, my nails were brittle, and I still had muscle weakness as my joints just burned! I was depressed and having hot flashes and just felt like I was 80 years old!  The doc finally puts me on thyroid replacements first and that helps some! My hair and nails get a little better, but I still get wicked hot flashes and I learn that my memory and concentration suck! I couldn't remember my own phone number when someone asked me for it! So I go see my ob/gyn who puts me on an estrogen/progesterone patch. That definitely helps with the hot flashes and depression. 

Months go by and I still don't feel "normal."  I try to wean again, thinking maybe that's it.  The fact that I could be cushie again is always in the back of my mind.  Every symptom comes back to that.  It's hard to fight that feeling of a Cushings recurrence! But I finally get some more blood tests done, my thyroid is tweaked and the doc tells me to go back up to 20mg of hydro.  I do and I feel so much better and even lose weight doing that!  The doc finally gets back the IGF-1 test and it shows a level of 50.  VERY low.  So he finally starts me on Genotropin.  OMG what a difference!!  Even the lowest dose made a huge impact!!

I had my surgery in June and it wasn't until January that I felt even remotely normal!! I had energy, my hair was growing again and my muscles didn't hurt!  I still have to get my hormones tweaked to this day, but getting on the GH was what pulled it altogether.  That's when I realized that we really have no clue how much our body does! And how much the pituitary really affects every day life! 

I'm not sorry that I told the surgeon to be aggressive.  I have to make sure all my hormones are correctly replaced to work together and I have to be conscious that when I get sick that I have to stress dose.  But while taking all these meds sucks, I wouldn't change that for Cushings any day!!

DAY 4: Support Cushings with a Click

For all those still struggling with Cushings, there's finally a medicine that will help besides surgery!

Korlym (mifepristone) is a cortisol receptor blocker indicated to control hyperglycemia secondary to hypercortisolism in adult patients with endogenous Cushing's syndrome who have type 2 diabetes mellitus or glucose intolerance and have failed surgery or are not candidates for surgery.

Corcept Therapeutics will donate $5 for every person who clicks to support people with Cushing's. Corcept has jump-started the effort to build awareness and support with a $15,000 contribution to provide support through the Cushing's Support and Research Foundation and Cushing's Help. With your support, we can aim even higher!* Take part...and spread the word!   cushingsawareness.korlym.com/

DAY 3: The First Time I...

Taken in 2008 before my trip to Seattle

The first time I heard the word Cushings, I was scared.  Another "C" word that meant tumor in my body that I could die from. I was in denial for a long time that I could have this.  I just didn't feel I had a lot of the symptoms.  I wasn't fat because of this disease, I was fat because I was an emotional eater. I didn't get much sleep because I was a mom who was worried about her kids.  The stretch marks were bad because I was overweight!  My face broke out and was oily because my menstrual cycle was crazy!  You see where my thoughts went!

After I got back from Cushie Camp, where I got all high results, I realized just how in denial I was.  I had this horrible disease, but it wasn't going to kill me.  I was going to beat it.  I jotted down all the symptoms I had and even some that I wasn't sure were related.  Who would've thought that plantar fasciitis was a symptom of cushings??  But it was.  It's totally gone now since my surgery.  I have lost all those symptoms of Cushings tho.  It's not such a scary word anymore, because there is something after it that's not death.  While Cushings has taken it's toll and my body is not completely the same as it was 10 years ago, it's better than it was with Cushings. 

DAY 2: Ten things I can't live without

There are lots of things in life that we can't live without.  But there are things a former Cushings patient now Addison patient must have, that they really can't live without.  That's literal and figuratively. For me, the following ten things are what I cannot live without:

1.  Hydrocortisone.  My life sort of depends on this one right now. 
2.  My other hormone medications.  Levothyroxine, Genotropin and my Estrogen patch.  I could physically go without these hormones, but they would make me feel symptoms that I'd rather not have to deal with.  They add to the big picture and make me feel whole. I can't go without these.
3.  An Endocrinologist. Right now, since Dr. L has left, I have no endocrinologist.  I am in the process of looking for one to follow me during this journey.   I will write another post another day on this issue.
4.  My Primary Doctor.  My primary doctor here locally has been a doll.  He will give me any tests I ask for and he's on call for me should I ever need him.  Usually in an emergency, they go to a service to help. Not for me, as all I have to do is ask for him.  He's been there since day one of this Cushings journey and never questioned me when I said I needed to go to Seattle.  He's worked with Dr. L and I just can't do this without him.
5.  Sleep.  Now that I can sleep 8 hours and feel fully refreshed and ready to go, I wouldn't give it up.    My body needs down time to recoup as well and that's just something I can't live without. 
6.  Food.  Now this is pretty basic and obviously we can't live long without food.  But because my body has suffered from what cushings did to it, I need to feed it right.  That means lots more fruits and veggies, whole grains, and even some salty foods thrown in there.  Sometimes I crave salty potato chips or pretzels and nothing else will satisfy it! 
7.  Water. Since my surgery, I drink more water than anything else.  I hated the taste of water before that and never felt it quenched my thirst.  Now it does.  I remember the days in the hospital when I had DI and had pitchers lined up of water.  I'm not that bad now, but I drink just under a gallon a day.  
8. My parents. My mom was the one that went out to Seattle with me each time and was there for me when I had my surgery.  My dad worked hard and paid her way to go each time, as well as called Dr. L before my surgery and asked questions & told him to take good care of me. 
9. My kids.  They really are number one to me, but in this case they aren't.  But I could never live without them.  They are who I live for.  I want to get better and be a better person for them.  During my cushings days, I was a yeller.  I hated it.  I felt like I had no control of myself tho.  Now I'm different and I know they see it.  We get along much better now too.  I love my lil' M & Em's.  
10. My husband.  He was unsure what was going on with me and told me to rely on the local doctors.  But after a year with no help he told me to go ahead and go out west and see if Dr. L could help me.  He stayed with my kids because we were both afraid to leave them, even tho he could've come with me to Seattle.  He dealt with my symptoms day after day and still loved me despite it.  I am grateful to him and I know now our relationship is better, now that I am too.  
11. The Cushings Help Board.  As much as I wanted this to make my top ten, it was just under.  But I couldn't live without the help of those ladies and men during my Cushings days.  I try to post there when I can now to help others.  But they are such an amazing resource! I would recommend that message board to anyone!

DAY 1: I write about my health because…

I blog about my journey with Cushings because I want my family, friends & all those diagnosed or waiting to be diagnosed with Cushings to see it is possible to move past Cushings & it's symptoms. It's such a lonely & stressful place to be in when you are going through it.  Not many people understand, even the doctors.  It seems so easy for docs to blame it on something else.  Not eating right, not working out enough, too depressed, etc etc.  Many relationships are challenged during this time.  It's unfortunately one of those illnesses that's hard to understand unless you've been through it.  But it is possible for people to try to understand and have some empathy and sympathy.  Not easy sometimes, but possible.  I do this for my kids tho.  They are what strive me to get healthy and to teach them as well as others about this awful disease.

Everyone who happens to be on this journey takes a different path.  I don't think I know one cushie that had the exact same symptoms, test results or even surgery outcomes.  Everyone is just a little different.  That's one of the reasons that makes this disease so hard to test for and fix.  But that's why I like to share my story, my moving on past Cushings, and what I've been through to get to this point.

2012 is quickly moving along already!

January was a sobering month.  Dealing with the loss of my mother-in-law was a lot harder since I had to help my children through it as well.  I couldn't mourn aloud, I kept it in. My son started not doing so great in school and my daughter developed a coughing tic.  My husband was dealing with getting his mom's estate organized so I couldn't share my overemotional thoughts with him either.  So there were days while my kids were in school and my husband at work that I'd just sit and cry.  It's only my MIL too!? What happens when it's my own mother?! So you see where those thoughts went...

February was my 39th birthday.  I celebrated it for all it was worth.  I was alive, my kids and husband were healthy! I know my MIL would want us all to be happy and I was able to deal with things a little better.  Going to her house for the first time after her passing was unbelievably hard.  But every weekend after that it got easier.  We worked on her house so we could sell it.  She would be so proud to see what her sons and the rest of us have done. 

March was my kids 10th birthday.  OMG I just can't believe they are double digits!  It was hard for my kids to celebrate their birthday this year without grandma. I put pictures up of  her at previous birthdays to show them that she was still here watching over us.  We had all the family over and my mom was here, so it helped.  But not getting that cake that was half chocolate half vanilla that both my kids would love was hard.  I considered making it, but I'm not her.  We started new traditions and I think they had a good time.  Every once in awhile tho, just out of no where, they would say "I miss grandma."  We'd all talk about her and cry and then move on.  Fourth grade is almost over and then on to their last year of elementary school.  I think I will cry then, just like I did on their first day of Kindergarten.

But now Sunday is the start of April.  Cushings Awareness Month.  I am going to concentrate on that and post every day with something having to do with Cushings.  I am a little upset at the moment that the infamous Dr. L  left his office in Seattle and now there's a new doc.  The people that have seen this new doc already, give not so raving reviews.  So I don't think I will be going back out there.  That means I have finally have to find a new endocrinologist (nearby or not, time will tell).  If  I don't find one by November, I will no longer get my Genotropin (aka GH).  THAT would be awful.  I can't live half as nice as I do without that stupid little shot.   The only perk to all this is that the hospital in Seattle that I went to, gave me back ALL my money that I spent on Medem's and MedFusions! They said it wasn't their policy to charge people for phone calls and emails! That was $500 back in my pocket!!  My husband says he knew something was shady about it, but I wouldn't have cared how much I had to pay.  To get great treatment for Cushings is worth a lot.  Dr. L saved my life.  But it is nice to have good treatment and my money back.  Just sad it came down to losing a great doc.

RIP to my MIL

My MIL passed away on Thursday, Dec. 8th. She had Leukemia & this was her 3rd cancer. She was 64. I was there with my husband as we saw her pass away. It was obviously very stressful! I ended up stress dosing an extra 20mg the day she died. I took 30mg total the next few days & especially on Sunday for her Memorial Service. But now I'm back to 20mg. I didnt think I could deal telling the kids but my husband and I managed. Crying all around, but they took it better than I thought. But I know this next year will be tough. She was always there for me & my kids. I'm gonna miss her a lot. :-(

3 1/2 yrs postop!

So I got back from Seattle on the 1st of Dec, but I just got my results from the testing there yesterday. I'm happy to report I'm still adrenally insufficient! Dr. L tests TSH, but us cushies know that that is useless after pit surgery, so I won't even add that one, but he thinks it's normal and frankly so do I. Here's my other labs:

Baseline Cortisol: .3 

ACTH: 34

CST results: 1.8 (Dr. L likes to see anywhere from 16-18 here before weaning down & off hydro. So obviously that won't happen soon.)

IGF-1: 105  (I'm above 100 Yay! He wants me to go to .6mg instead of the .4 I'm taking, but I just can't due to pains and the carpal tunnel.  It's ok on this dose, I'm not going to push it.)

So I am staying on 20mg of hydro, 137.5mcg of levo, .4 of Genotropin, and of course the patch for estrogen which he doesn't test for.    I'll do a Medfusion in 6 months to check levels again.

I also had an MRI while I was there.  This is only my 2nd one since surgery.  Dr. L told me there was scar tissue, but that it was "unchanged" from the last MRI.  So that's good!  It was a good trip for the most part and I even took the train, to the monorail to the airport and back.  I took a shuttle to and from the airport to the hospital.  My husband stayed home and watched the kiddos for me.

My only problem while I was there, was having the IV put in my arm first thing in the morning.  The new guy that did it, sucked.  He could not find a vein well enough (tho they were there, I could see them) and he decided to put the IV in my forearm.  OUCH! He couldn't get the needle to stay so he held onto it.  DOUBLE OUCH! He did my blood tests and then asked if I wanted it out instead of saving it for the MRI to use.  I said yes, take it out! He put gauze over it, then wrapped it up.  My whole arm was sore.  But I took my hydro, went and had breakfast, and then went to my appt with Dr. L.  While I was waiting for Dr. L, I unwrapped my arm and took off the gauze.  It was hurting and I think the wrapping was too tight!  Well when I looked at my arm, the vein itself was all raised up like it was swollen! It hurt!  I showed Dr. L's assistants and they said it was normal and that they bruised the vein.  They said if I was concerned to go back to the AIC (where I got it done originally).  I did and they gave me a heat pack for it.  Thankfully it felt better after that.  I ended up having another IV put in my left arm for the dynamic MRI, but that one was no problem.  I probably needed to drink more water for the first one, but still!!  I did worry that it may have altered my results.  Especially the baseline cortisol, as it hurt just getting it to go in!! Once it was in, it was fine.  Now I just have a big bruise.  The other arm you'd never notice was even done.  No bruise or anything. Ah well, it's done and I'm at home!


Now just to finish getting ready for Christmas!! =)  Happy Holidays Everyone!