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!

New Job!

Last year was the first time in 10 years that I started looking for a job. My degree is in Elementary Education, but being that the schools are filled with germs and I can no longer handle germs well, I have decided that's not something I want to go back into. I looked for almost anything else, but to no avail. So in the last few months, I tried to figure out what I love doing. It came down to taking pictures of my kids. I have over 10,000 pictures of them since they were just babies. They aren't even 10 years old yet!! So I talked to hubby and sure enough he has supported me and he bought me a digital SLR camera! I'm taking some pretty awesome pictures now!! I'm just getting into doing birthday parties and portraits and tomorrow actually I'm photographing for a retirement party. It's very exciting! It's something I can do on my own time for the most part and still be home with the kids. I haven't felt so HAPPY in a long time! I'm excited and I have something (besides my kids) to really look forward to! It's not strenuous on my body or stressful on my mind! Being part of people's events and just seeing people smile! AWESOME!

So that's why I haven't been around much. That and I barely get on the actual computer when I have my iPhone now! It takes longer to type stuff, so I just don't. But maybe when I'm downloading pics to my computer I can pop on more often to share some pictures here! Here's just a few!

Blame it on the Alcohol

So I went to a wedding in FL this last weekend. It was my youngest cousin's wedding. I got in Friday morning, and hung out with my dad's family Friday night. They had a rehearsal dinner then, so I got to see everyone that I haven't seen since my own wedding! Saturday morning I went to the beach with my dad. That was really cool. The ocean was so warm! Much warmer than here in NJ! Anyway, the wedding didn't start until 4pm. So we got dressed and were at the hotel where it was by then. The ceremony was nice and sweet and then it was on to the reception. I knew I wanted to have a lot more fun, so I thought I'd get a "drink." Talked to the bartender, telling her that I like sweet drinks. I don't want to taste the alcohol. The first drink I had was Vodka, Orange liqueur, and Cranberry juice. It was nice and sweet! I got half way through the glass and I was already feeling it.

Now just know I am NOT a drinker. In fact, up til this point I hadn't drank such hard liquor since I was in college. So it didn't take much to get me buzzing. But this was different. I could tell it was bringing my cortisol down too. I was feeling week and lightheaded. So I thought if I took it slow and just sipped it, I would be ok. Things were funny tho and I was laughing like crazy, I was dancing like a lunatic from what I was told, but I was having a good time. I finally finished that first drink and went on to drink #2. It was a Cranberry juice, Sprite and Vodka. I told her to make it on the weak side. It didn't matter. I did end up taking 5mg of hydro thinking that would help the wooziness I felt. By the time I finished drink 2, the wedding was over. I was just shy of drunk.

My parents, brother and I went back to the hotel room to change. I sobered up a little and started getting tired. But my cousins texted me at 10:30pm and said they wanted my brother and I to come hang out by the pool with them. That sounded like fun! We swam, we talked and we drank a little more. By the time I left there at 2am, after one more drink, I'd had enough! I don't know what is considered drunk, but I'm sure I was close. I didn't vomit or anything but boy did I feel it! Or so I thought. Let's just say the next day was worse. My parents were taking me back to the airport and we had to leave by 6:30am. So I got less than 4 hrs of sleep. That was NOT enough. My body felt awful from the hangover and awful from lack of sleep! I took 25mg of hydro Sunday morning just to help cover how I was feeling. I slept on the 2 hr plane ride home. Hubby and the kids picked me up at the airport and I think I dozed in the car on the hour ride home from the airport. I got home, showered and changed and dozed again for another hour or two in bed. I managed to eat dinner, play with the kids for awhile and then when they went to bed, so did I. I think I conked out faster than them. I think I slept without moving the whole night too! LOL

Monday morning I wake up, I'm definitely feeling better. But now I have the runs and can tell I'm dehydrated. I drink a lot of water and gatorade and salty chips and crackers. I just blame it on the alcohol tho and the fact that my body is coming down from this crazy weekend!! I can tell you it will be at least another 10 years before I drink that much again!! It was a fun weekend and worth it, but I always have to remember in the back of my mind that 1) I'm not that young anymore and 2) that my body can't handle the liquor anymore. Thankfully nothing bad happened, but my hubby was being kept in the loop with how I was doing and he told them what to do if I got sick etc... Glad to know he was actually listening!

Then and Now Photos

Some of these I hate to share. Ugh. How bad I looked back then. But I know this will only help those still going through this.


These are the NOW pictures! :)


I love how I feel today! I'm still overweight technically as my ideal weight is 135-140. But I'll take the 150's & 160's over the 200's!! My mom once told me when I hit the 170's, there's no coming back. Well I've been given a second chance and I'm not going to blow it again!

3 Year Postop Pit surgery!!

Can't believe it's been 3 years!! I'm still doing great & I thank God every day! I've been having problems with the lab or I'd have blood results to post about now. We're just checking up on thyroid & IGF-1. I don't have time to post more, but I did want to check in ON my anniversary date. I promise in the next couple days I will update more & maybe add in some pics of then & now. :-)

Birthdays, Easter, 1 year postop DQ syndrome...

Sorry again that it's been so long since I've updated. It gets crazy from Feb-now. But I wanted to update!

Well, like the title says, today is actually my 1 year postop from my hand surgery. That was the best surgery I ever did and I'm glad I did it. It has been great to have no pain in my hand!! Even the carpal tunnel has gone way down! Definitely worth having done if you have DQ syndrome.

Also, I had my 38th birthday as well as my twins had their 9th bday earlier this year. They were really nice birthdays, but I think the twins had the best one yet. We ended up going to Universal Studios, Sea World and my grandparents in FL for their bday! We are all big Harry Potter fans and wanted to see HP World at Universal. It was VERY cool!! It was a crazy trip but we all had an awesome time. I only had to stress dose once, and then again when we got home and I crashed again! It's weird the way my body uses up all that stress while I'm there and then I must release it when I get home and my body freaks out on me. I get so sick and run down!! Usually it only lasts a day or two, but still.

For Easter we were home this year, no Hershey Park, obviously since we went to Florida. Hanging out with the in-laws. Fun fun. Between, my kids birthday and playing with my very young nephew, I miss having small kids around. I say this every year, but I get all sad that I can't have anymore. I enjoy everyone else's babies that much more! I appreciate my two much more when they are sick. Isn't that sad? hehe! I worry about them and make sure they are ok. . . It's stressful and then I realize, I'd go nuts with another child. LOL So other people's kids are good for me!! :D

Anyway, the end of the school year is approaching in less than 20 days now. So I get to wrap up my room mom duties as well with one last party. It's been fun, but stressful as well. I can't wait to open the pool in 2 weeks and get in it and just RELAX!! Summer to look forward to. Can't wait!!

What You Must Ask Your Doctor

What You Must Ask Your Doctor

This video is from the Dr. Oz show, talking to a Nurse about what important questions you should ask your doctor. It's a video that just over 5 min long of that section of his show. I thought it was important, especially for those fighting Cushings to really know how to talk to doctors. That's the one thing we really struggle with. And one of the things mentioned on his show (not in this clip) is to write down your questions for the doctor. Give the paper to him and make sure he/she can answer every one of them til you fully understand every answer.

Betty Long (the nurse Dr. Oz talks to) is the President of a group called Guardian Nurses. She (or other guardian nurses) go to the doctors office WITH the patient and they help talk to the doctor & interpret doctor talk. http://www.guardiannurses.com/

How nice would it be to have another advocate talking to the doctor with us cushies? Especially when we don't have the energy or even the memory to remember what was said. To fight with us to get healthy.

I have a cold that knocked me out Saturday!

My MIL came to visit us last week for the kids violin concert. When she showed up, I saw she had a cold. Because of my lacking immune system, it seems I'm the one to catch it. I thought I was lucky to be so healthy this year. Ah well... It wasn't til this last Saturday tho, that I felt really sick. And by sick I mean, weak, sick to my stomach, sore throat, headache and the shivers. By later in the afternoon on Saturday, I couldn't eat or drink anything. And it wasn't because of the sore throat, it was because I had the worst nausea. So I grabbed a cup of water and I went upstairs to bed. I took another 10mg of hydro and sure enough about a half hr to hour later, I felt a little better. I asked hubby to bring me some vanilla ice cream and Gatorade. I ate and drank and seemed to be fine.

Next morning, after hubby let me sleep in til about 9am, I got up and had 1/2 a bagel for breakfast. I continued to drink Gatorade too. I still didn't have my full appetite back tho. I took my normal 20mg of hydro in the morning too. I ended up skipping lunch, but did enjoy dinner. I took another 10mg of hydro after dinner and I did take some Benedryl to help with the post nasal drip and to help me sleep w/o waking from choking on my phlegm. I slept like a log. I don't feel too bad this morning, just still run down from the cold itself. Thankfully I do seem to have my appetite back. But dang! This just hit out of nowhere!! I was fine at breakfast and then boom! I'm feeling like death warmed over! This stuff is scary and I'm soooo afraid of having to end up in the ER with AI. I'm afraid of puking normally, but now if it happens, it may land me in the ER. Definitely nothing to fool around with.

I'm just glad the hydro did the trick and that the weekend's over and I'm feeling better. Hopefully the rest of the cold leaves me just as quickly!!

Growth hormone sucks

I know I need it badly, but I can't stay on it for 5 days a week for six weeks straight. I was suppose to get a blood test to check it already but I have to be on it correctly. I get to the 4th week & I'm swollen and my carpal tunnel kills me. I don't know how my blood tests show up with so little when the symptoms scream at me like there's too much. But I keep trying. One of these weeks I'll just cut through the pain & finish it already. I wish it was a pill or a cream, maybe that would make it easier. *sigh*

One year anniversary

A year ago today I had my hysterectomy. I never thought I'd say this, but it's the best thing I've ever done. I feel so much better; no ovarian pains, no PCOS and best of all no more periods!! While it was a long (and quite painful) recovery, I'm glad I did it now. I do take a very low dose estrogen patch and while it works, I'm sure I could still go up a bit (especially since I upped all my other hormones). I still get hot flashes now and then, especially if I'm late in replacing the patch. But I really don't want to go up any higher in my dose. All those worries about cancer and heart issues are always there. One year later and doing great is a pretty awesome place to be tho!!

New Year, New Update

Happy New Year!! OMG, it's been a long time. The end of the year is/was very hectic for me. No excuses tho, I just didn't make the time either. I did want to report after I got back from Seattle in November, but didn't. So here it is.

I was worried over some symptoms I'd been having. Every little symptom brings a worry with it. So I was looking forward to going to Seattle to get things checked and have Dr. L give me his advice. As it turns out, when I thought I was helping by lowering my hydro (it was down to 12.5mg), I wasn't. My thyroid was also a tad low and of course my IGF-1 was still low. All hints to explain most if not all my symptoms. Here's my labs:

Thyroid: 1.12 (midrange was 1.26 and they like to see it up more) So I'm to go from 125mcg to 137.5)
IGF-1: 54 (On .4mg every other day, now I have to take it 5 x a week - this is going to be hard for me)
ACTH: 39 (This is mid range, but top range is like 63 or something crazy. Still worried about this tho)
Cortisol: .5
CST: 1.8 (Ok, so with the cortisol below 1 and CST not budging, I think my adrenals are still sleeping.)

They also tested my electrolytes which they said were normal and aldosterone & renin, which they just said were normal too.

Dr. L put me back up to 20mg of hydro. He wanted to see if that, along with the other med adjustments will help. We'll check again in 6+ weeks. I talked to him again about my ACTH and he says going up to 20mg of hydro may bring my cortisol up and my ACTH down some. He swears it's fine tho (that will always be a worry for me).

Since then I have felt soooo much better. I did have to up my estrogen as well, cuz I started getting hot flashes after about a week on the new doses. But I do feel so much better and have much more energy. I did end up losing about 8 lbs, which is more that I have my energy back more than anything! I think I gained a few of those pounds over xmas eating so much! But I'm working on it again! I have my blood test to check all my new levels at the end of Jan. I also have to do a DEXA scan to see how my bones are.

Other than that, life is good. I enjoyed the holidays with my kids and my husband. I like being the room mom in my daughter's class and getting to know all the kids. I like being part of the PTA and part of the Mom's in Touch group... Not much else is new at this point tho, and hopefully I will post again soon!!

Sorry. Quick update!

Sorry I haven't posted in almost 3 months. I will come back and fix that soon, but for now I'll just give you a quick update. I had taken some bloodwork for both Dr. L and my PCP. Everything is still the same. My cortisol is still less than 2, my ACTH is still too high for my liking, my IGF-1 still hasn't come up to normal range and everything else is "normal."

I'm feeling fine, but still have worries about my ACTH. Can't stop that. Only thing that will help IMO is the CST that will get done in a month. I'm going back to Seattle for my 2 yr checkup Nov 8th. While I'm there I'm going to see the Harry Potter Exhibition. Can't wait - for both things.

I will update all the dates prior to this soon!

Vacation doses

As I write this, I'm at my parents in the Chicago suburbs. We're only here for a week, but it's been a very busy week. We got here last Saturday and are leaving this Sunday. The first few days we were here, I got wicked headaches and just felt tired. When I went with my mom to the grocery store, I used one of those blood pressure machines. Sure enough it was low - 105/50. I know that means I'm low in hydro too. So for the last few days since then, I've taken 17.5mg. (Since I haven't posted in awhile, I should tell you that I upped my dose from 12.5mg back to 15mg. So from that I went up another 2.5mg to help me.) So far it has helped thankfully!

Wednesday we went to Six Flags and I rode on 3 roller coasters. The third coaster was the one that did me in. I rode Superman first (on my stomach w/o any problems), one called the Demon with loops and corkscrews (which left me with a tad headache but it was my daughters first time with loops & corkscrews so I had to go!) and the last one was the Great American Eagle (nothing but hills in that one) and I felt sick to my stomach, weak and dizzy after that one. I ended up taking an additional 5mg after that ride. I'm not sure if it was just the hills or if I had just hit my peak of riding coasters, but it did me in. I had to rest for like 20 min after it too. We finished with the park tho and ended up going to Hurricane Harbor. That was nice and refreshing. But when we got home, I ate 1 piece of pizza, had a half a bottle of water and fell asleep before 9pm CST. I remember my mom coming in to check on me, but I was out of it. Woke up about 5am, went ahead and took my 17.5mg dose and fell back to sleep til about 8am.

Knock on wood, I haven't had any problems since I made sure to take extra hydro this time. I was supposed to go to the city on Thursday, but didn't cuz I didn't want to push it and I was still tired out. My mom and I stayed home while my husband and father took my kids into Chicago. It was ok tho and I had fun as well. Nothing else big is planned and we should be driving back home soon. :-( The emotions will get the better of me, so I'll still take a little extra until I get home, then I'll go back down to 15mg. I'm so happy we were able to come here tho. It was a nice vacation! I'll post some pics when I get home. :)

Pill Glide Spray

Pill Glide Spray This is the newest thing that just popped up on my facebook page from Walgreens. I had to laugh, cuz I have some nasty tasting pills and would love anything to help it go down easier. Seems you spray 2-4 times in your mouth, then take your pills. I don't know. I guess I would really have to hate whatever I take, which I don't just yet. I wonder if it would work on my kids. Then I wouldn't get the "OMG this tastes awful!" after every med they take. They'd have to make a chocolate flavor for my daughter. Hershey could make some $$ off of that for kids! LOL!

Now if I could just get a "Shot Glide" skin spray so my GH shots went in w/o hurting, that would be good! ;-)

One month & One week

Today is my last day of physical therapy for my wrist. My therapist is very impressed with my hand and says I have full rotation back and with no pain! I think I said this before, but it was the easiest surgery and the quickest recovery. (Probably the easiest recovery too!) It only took one month, one week from surgery to recovery. Pretty incredible. I don't have to sleep with any braces on my hands and I can move it ways I haven't in over a year. I'm so happy with the results of this. That makes 2 surgeries I'm happy I did this year!

I do have some weights at home tho, that I will continue to work out with, just to keep the muscles going for awhile. And I still rub the scar every night, just to make sure no scar tissue builds up and stops it from moving so nicely. I also put cocoa butter on the scar to help fix the skin as much as possible. So I'm still "working on it" but for the most part, it's done! Oh and I went back to check out old posts and learned June 24th of 2009, - a year ago!! - I was diagnosed with De Quervain! Amazing how much has changed in a year!!

2 years postop!!!

I still can't believe it's been 2 yrs. I was in surgery at this point 2 yrs ago, getting my poor little pit messed with. But thank God for Dr. M and his surgical team. It took two surgeries, but two must be the lucky number. I'm praying it is anyway.

Let me back track and tell you my symptoms then and how they are different now...

Then: oily hair, oily skin, cystic acne all over my body, fatigue, anxiety, panic attacks, plantar fasciitis on both heels but worse on my right, moon face, sporadic weight gain & weight loss, unbelievably hairy legs (like more than the normal amount of hair that should be on a woman!), hard time falling asleep, becoming a light sleeper, no dreams, hardly peed at all which later I found out was because of edema, and constant headaches. And those are just the ones I can think of at the moment. I'm sure there's more.

Now: I can go without washing my hair for 3 days and it still looks "clean". I have no more acne at all. Now I have the fatigue at the right times - I can get up bright and early in the morning and feel exhausted by 10pm at night. I sleep all night and am back to being a deep sleeper and I have some great dreams! No more anxiety or panic attacks. My heels were better the minute I stepped off the bed in the hospital. I'm not sure if this is because of the Cushings or loss of the other hormones, but I don't have as much hair on my legs and can go a week and a half before it's truly obvious that I have to shave! I am now peeing more consistently and I find when I'm feeling AI'ish in the evening, I actually crave water to drink more which in turn makes me have to get up and pee at night! So no more edema! The headaches are basically gone too except for when I feel AI'ish. And the biggy of all of them.....to date I have lost just over 60 lbs. From a starting weight of 220, all the way down to 158. I have lost countless inches too. The moon face is gone and I can see bones on me that I never knew I had! I'm lovin' it!!! I'm looking for the right pictures to show you to compare then and now, so check back soon!!

The only downsides from all of this is the hormones. Or lack thereof. Having had the hysterectomy because of the issues with the female hormones and possibly GH. Which so far has been the best thing I've done, but I'm still trying to work out all the issues with how estrogen and cortisol work together. I just had hand surgery (and my cast is off yay!!) 2 weeks ago because of a problem again possibly caused by GH. So other than my hydro and thyroid meds, the rest of my meds are still all over the place. Trying to find the right dose is hard, cuz I have to find which of the doses goes best with my other meds. It's not really a big deal, but it can make me feel kinda icky or just blah. I definitely don't have the muscles I used to have. They have all gone away. I've just recently been doing more exercises to try to bring them back. But I see it will take awhile.

But all in all, it's all good and I couldn't feel better. I'm grateful to my family and friends who have supported me through this journey so far. Thank you!! And to my surgery buddies, I hope you are well too!! I'm thinkin' of ya!!!

Six and seven days left...

Six days til I get my stupid soft cast off and seven days til my official 2 yr postop anniversary!

I'm doing good with my cast on, but it's driving me nuts. I get aches and pains, itches and swelling. I just want to rip this thing off already!! But less than a week now and I'll get it off. I cannot WAIT!! I've needed strong pain pills, but not so strong that it wipes me out. I've been talking HALF of my pain pills that my doc prescribed. I take that only at night just to help me sleep. The rest of time I take Advil just to help with any swelling.

I did go to my parents this last weekend and it was an awesome trip. Again the only part that sucked was getting too the plane I had to go through extra security. Now I'm all for helping them know that it's just a simple cast, but do they have to be rude about it?! Going out was nice oddly enough (flew out of Philly) it was coming home that they were rude all around! (flew home out of O'Hare.) But I did it and didn't have too much trouble while I was there. I slept like a baby and it was weird being there w/o my kiddos!! We plan on going back there this summer tho.

I still can't believe I've made it 2 yrs in remission. I praise God every day for getting me this far. I can only hope to keep going. I have my 6 month labs coming up, so we'll know more then. I hate this testing tho, it always puts me into worry mode. I know I just have to do it and get it over with tho. But TWO. What a nice number. But let's go for 3 shall we?! :D

I dont like being a lefty!

Ok, so I had the surgery yesterday for my hand and it went very well. Quick & painless just like I like it. I have a slight ache today, but its all good. Now I just have to keep my arm elevated for 2 weeks and keep the brace on my hand for that long too.

I took 60mg of hydro for the surgery, then 20mg today, then 15 tomorrow, then back to the 12.5 that I was at. So far I've handled it well. No AI or anything. I can see a slight swelling in my face but hopefully it will go back down like it did after my hyster. Well this is all i can type for now, so here's some pics.

May madness!!

I swear this month is turning out to be crazy!! First the communion, then I find out that my hysterectomy scar is coming apart at the bottom of it. I had to go back to my obgyn where he had to seal it off with silver nitrate. All I can say for that was OW. I had to do peroxide and neosporin daily to keep it from getting infected. Not sure why that happened either, but he doesn't think it healed all the way and I just was moving all over.... I dunno.

Then I've been to the ortho finally and am getting my DeQuervain syndrome taken care of. I'm having surgery tomorrow actually. So I won't get to type much for awhile. I don't have much patience and one hand typing just sucks. But it needs to get fixed, as it's in rough shape. I wish I could do the carpal tunnel too, but one at a time. I'll need to wear a brace for 15 days and then I may or may not need physical therapy. I may take it just to make sure I don't lose function. Since I'm still on steroids, it still takes things a little slower than normal to heal. So I don't want to ruin things once the brace comes off.

As far as the hydro, I have decided to wean down to 12.5mg/dailyl. I've been going back and forth with my estrogen patch, when I finally realized it wasn't the estrogen, it was the hydro. So I slightly lowered my hydro, because the estrogen was making me feel cushie. I remember a friend saying that HRT could raise cortisol. So, I lowered it. As soon as my patch needs to be changed, I have to do it because otherwise I start getting AI symptoms. I told Dr. L what I did and he was fine with it. As long as I'm doing it slow, it's fine. If or when I feel AIish, I need to go back up. I've been doing it that way for 2 weeks now and I've felt great. Even lost another 5 lbs. I haven't been in the 150's since I was in high school, but I like it here and hope to stay! If I could have a tummy tuck and lose all the extra skin in my lower belly, I would look even better!! But I won't, cuz the hysterectomy pain was bad and I heard a tummy tuck is worse! So I'll just deal with it! If hubby can stand it, so can I!! :D

Communion Chaos!

I was so nervous for my two today, I couldn't even eat. It wasn't even about me and I was nervous. But the twins communion went sooo well. It was truly beautiful. All the kids looked great, but my two were beautiful/handsome of course!!

We got there early around 11:45am. The ceremony wasn't to start until 12:30pm. Thankfully almost all of the family showed up from both mine and hubby's side. I'm grateful that both my parents and my brother could be here for this, even if it was only for the weekend. It started right on time and the kids did a parade around the church so everyone could see them. It was nice. Then they started on with the mass. The kids singing was great and so dang cute. When the 4 of us went up to receive communion, I thought I was going to pass out. I kept telling myself, that I couldn't handle worrying about something going wrong, so just deal with it. I went with the flow and managed to get the communion bread down my throat. YAY! We had done it! My kids did it! Then the priest started talking about how we held them when they were baptized. And now we could only hold their hand as they make their way in this world. I cried. I'm such a sap.

Then it was over and I had a photographer come and take a bunch of pics for us to help remember the day. I am so happy she was able to be there and do this for us too, cuz as you see, we got some great pictures!!!

Sorry!

I haven't posted in awhile, cuz I've been so crazy busy! This time of the year is insane. My twins birthday, trip to Hershey Park, Easter, Field day at school, and now the kids communion. When I do have the free time, it's not enough to sit and write anything (like now). But I promise after this weekend I will come and catch everyone up on what's going on with me. I'm still doing good tho and that's all that counts!! : )

For now I'll leave you with a pic of me and my son at their skating party! : )

Ok, I went back and added some posts for my kids bday and our Easter weekend if yer interested!