Well here it goes...... please ignore my mistakes -
In Oct 2002 I was admitted into the hospital. I was there for 3 weeks - at that time I was diagnosed with diverticultus. I was 39 years old at the time - I had gained some weight - 20 lbs or so - but I lost almost 30 lbs in 3 weeks - I was 123 lbs when I left the hospital. I'm normally 130 to 140 llbs and did not usually change. I worked out - watched what I ate - I always took care of myself. I was by no means a health freak but I was careful. I made sure my kids ate healthy and exercised. I completly understand how important it is to have health and exercise in your life and I made sure my kids did to.
Long story short after this one stay I was in and out of the ER room and admitted into the hospital another 3 times. I was always so sick - throwing up - sore left side - low fever - dehydrated - white count up - weight gain - weight gain - weight gain - and this was always blamed on the diverticulitus - I was even sent to the surgeon - but he did not want to take out a foot of my bowles. He wanted to try and control the disease with medication first - thank goodness!
On my 4th stay in the hospital - I was completly depressed and I remember feeling like I just didn't care anymore if I lived or died. At that time my dad was sick with Cancer and was in Winnipeg with the rest of my family for his treatments. I didn't want them to know I was in the hospital - yet again - they all had so much on there plates with my dad so sick - I didn't want them to worry - as I too was so so worried about my dad.
Anyway on that last stay in the hospital they did another Cat Scan. On the third day my GP came in early in the morning - like 6:30 am. Which I thought was strange - but being that he was so busy and he saw that I was awake - I thought he wanted to get going with his rounds. Nope not the case. He came in and I will never forget his words. "you have a 3 cm cyst on your left overy - a 2.2 tumor on your left adrenal - and you have fibroids all over your uterus" What could I do or say. He completly shocked me I was not expecting that - it blew me away. He went on to explain about the tumor - how some people have a tumor on there adrenals all there lives and don't even know it. There are so many autopsy(sp) where they find tumors there and people have lead normal lives. I was told it was a chance finding - not to worry about it - it was not doing anything to my body.
I remember thinking at the time - well that's good. Ok so this is normal - I'm hear because of my diverticultus that keeps acting up. My joints/bones/muscles ached so bad - my left side was killing me / I was dehydrated/throwing up/frozen to the bone/low grade fever/ my hair was falling out by the hand full/ my lips were blue/ and I honestly remember not caring - I just felt so shitty and this had been going on for 3 years now - I thought if the surgeon would take out that foot of bowle where all the poyps(sp) were. I would be fixed. Nope not the case.
So 4 days later I go home. I still have the pain on my left side and I still feel like a truck ran over me. But I'll survive. I remember looking on the internet under adrenal tumor - and I stumbled across this site - not being the best computer wizz it took me a bit before I realized I was even in a site LOL - Anyway I joined out of curosity - because my tumor was doing nothing to my body (so I was told) OMG I was shocked - completly fall onto the floor shocked - I read and I read and I read some more - what the heck - this is me - this sounds just like me - exactly like me. I remember putting a post up under a different name - can't remember it now - but I said something like Oh I see I'm not alone - boom - people wrote me back - one in particular I remember was SuziQ - I can't remember everything that she said but I know she was the first one to say to me that I was a good candidate for NIH. . . . Love ya Su!
But my dad got so sick - that I put my life and this confusion I had on the shelf - I could not deal with this and my dad so sick. I didn't say anything to my family about the tumor. Only to my husband. I just couldn't put them through anymore worry. So I think I lived in denile for about 8 or 9 months. I was still working full time at the court house (yeah can you beleive I actually had a good job that I actually was at one point in my life intellectual!.) I was not sleeping. I was like a yoyo -I kept messing up at work stupid things - I didn't know what the heck was going on but I ignored it - I had to - I couldn't handle 2 things and my dad was my top priority. But now when I look back I see it. I would wake up at 2 am wired out of my ever loving tree - not be able to sleep. I would work all day come home completly exhausted - go to bed at 8 tired - and I would feel surges in my body (not knowing at the time what that was) but I would not be able to fall asleep. I would work a week of work and be lucky to get 8 hours sleep all week and still function? I was gaining so much weight I went to WW I did the herbal thing I walked everyday on my lunch hour. I went to the gym after work. I joined a kick boxing class - I did not put anything in my mouth that had fat in it for over a year not 1 chip not 1 cookie - yet I gained and gained and gained some more. It got to a point that it hurt to work out - my joints/bones/muscles - and my kick boxing classes - I was lucky if I didn't completly pee my pants - I was loosing my bladder control - which was so embarrassing - the last time it happened it was not just a little bit - needless to say I did not go back. For the life of me I could not figure out what the heck was going on or I didn't want to see it - not then - not when my dad was so sick. I think I was just confused I'm not sure. I did go to my GP through all this and he had a reason for everything - at the time it made sense to me or so I thought. I had carpel tunnel - planter Fanciatie (SP) insomnia - depression - anxiety - IBS - oh I can't remember them all but there was always an answer.
I ask my doctor if I could see an endo. I had read enough on the boards at that point - I would lurk - to know I needed to see an endo. So I seen one that came to my town from Winnipeg. I told him everything - all my symptons - I had not gained a huge amount of weight yet but to me at the time - it felt like alot - crap had I known what was yet to come - anyway he checked me over - asked a few questions - said you look fine to me - I'm pretty positive the tumor is doing nothing to you and he explained to me the same thing my GP had said. He told me to do a 8 am 8 pm cortisol count but said I really had nothing to worry about. I never did do that cortisol count that was in December 2005. My dad ended up in the hospital on boxing day. He was in there for 2 weeks and came home with a oxgen mask/tank - he seemed ok - he was happy he hated to bring that tank everywhere but he was still pretty healthy. We had been told with the treatment it would give dad an extra 18 months to 2 years with us. That was all he wanted and we all so wanted it too. I was still working and I can still here my dad - "Caty you wanna come for a nice little stew" My dad was very very french - he spoke to us mostely in french he had a thick accent and would say the cutest things. Example - he would say "oh I'm hungry like a rabbit" - should have been bear - or when he was in a depression and he had an appt with a phycologist(sp) he would say "I have to go see my head speciality" - so many things like that - he would always make us laugh - even when he was so sick. God I miss him so much.
Anyway my GP made another appt for me with another Endo in Winnipeg my appt with her was set for February 1, 2006. I had everything ready - I had been lurking more and finding out more - but still I had not said anything to my family. Shortly after my dad got out of the hospital - he asked me to come home for lunch - I knew he knew I was not feeling well. He asked me - I told him the truth. I just came out and said it. He hugged me and told me to take care of it. I don't know why I told him. I had not said anything to anyone yet only my husband. I just felt like I needed to tell him. I needed that hug I needed to hear my dad say those words to me. For everthing that my poor dad was going through I still needed him. Man this is hard to write. No one will ever know how special my dad was. He was the strenght in our family. I have 2 sisters 1 older and 1 younger. He loved us all. But he loved us all indivdually. He made us all feel so special. There will never be another man on this earth like my father.
It all happened so fast. My dad was diagnosed in June 2005 - went through 6 weeks of treatment - we were told 18 months to 2 years. The last week of January 2006 my dad was admitted again - this time into ICU - we didn't know at the time that it would be the last time. The doctors were honest - they told us to spend as much time with him as he could tolerate - What??? I remember yelling at the doctor - it's only been 7 months since we found out. He has 18 months to 2 years. Your not nice to say such nasty things. I freaked - and freaked. My heart broke into a million pieces - how could my dad die? How could they think we could just say good bye forever! I don't remembe alot about that week I think I blocked it out. I do have flashes. And still my dad tried to make it easier for us always worried about us. I remember being at dads for lunch 1 day after he had been diagnosed. He said to me "Caty you think I'll be ok down there?" I just looked at him. He came and huged me - he said Caty my little girl I'm not scared to die. It's my time. I hugged him back so hard and I said "Dad I'm not ready to let you go" He said don't worry my girl I will be ok I'm not scared to die. I knew then that he had accepted it but I just couldn't. I wish now that I had said more at the time - when he was here - I wish I had said how much I loved him - what a wonderfull father/grandfather he was.
My dad passed away February 1, 2006 - he just slipped away. They had a respite room that my mom and my sisiters and I stayed in. We were there for a week. That night the nurse told us to get some rest we had not left my dads side. The room was right down the hall. She said that if there was any change at all she would come and get us immediatley.
At 2:10 am the phone rang. We ran down - but it was too late. He slipped away with know one there!!!!!!!!!!!! OMG how could that have happened. We never left his side for a week and he slipped away when we were only gone for an hour. I couldnt' go in and see him gone. I couldn't - I was shaking uncontrollably - I had the runs - I was puking - How could my beautiful dad be gone - gone forever? My sisters and my mom went into his room. I remember just looking in - I saw my dad's hands by his side - so white - I saw the tip of his nose - so white - I just couldn't go in.
The last 17 months without my dad has been hell. I can't go into it -just writing what I have already - it's just hard.
Ok - I've taken a brake - had a coffee - and a cry and now can continue.
Ok so I did not make my appt on Feb 1 with the new endo so I went in April 2006 - one of about 3 appt with her. I did 1 ufc - Normal. and she did my blood - cortisol count - at 2 in the after noon - she did this twice - both came back normal. She told me on my last appt that she thought it was nothing - (found by chance) she also said that I should get a second oppinion for the diverticultus?? not sure what that was about. I asked her for 2 more cortisol draws and she gave them to me. I knew from the site that taking your cortisol at 2 in the afternoon - you wouldn't get a true reading. But she was short with me. I asked her about being cyclical. We did talk a bit about it - but I didn't have the questions to ask. I didn't know the questions. Anyway I left the last time I seen her feeling like I was crazy - yet the symptons I had were getting worse and I had more of them. She wasn't really rude to me - I just felt like I was wasting her time. She had a room full of people waiting to see her and I felt like I was not important I felt she rushed me out I was wasting her time. That was April 2006 - I was still working at the court house. My postion was coming to an end in September and I really didn't think I would be able to finish. I did - barley - but I did finish my contract.
It's funny how your body learns to live with things. I was up and down like a yoyo. I would get so depressed I seriously didn't think I needed to be on this earth. Then the next day I would be laughing and joking and thinking - boy glad I'm not like I was yesterday. I started to have anxiety attacks but didn't know what they were. And I didn't know how bad they were going to get either. From April to September I gained another 20lbs. I finally joined the boards in September. No really knowing if I was just crazy - but in the back of my mind I still remember what I was told by some of the ladies on here a year back.
So I officially joined - posted - posted - asked questions - more questions - got myself educated a bit. I remember thinking OMG how can I digest all this? I can't even spell anymore - I can't remember to put the milk in the fridge and not the cupboard. But I listened for the longest time and digested - it finally after quiet some time started to make sense. I watch new girls come - get diagnosed - leave. I remember thinking I hope one day I can put a date on that surgery board. Not my time yet though. I remember reading blog after blog - laughing -crying - disappointment - I remember thinking Holy Cow I'm not alone - It felt like I was reading my story over and over again.
I have met such good people on here. I mean people who speak with their heart and soul. People who give a shit. The information/compassion/understanding/ I can't even say enough. I feel like I have a new family. One that understands completly.
Because of all of you I had the courage to go to NIH - I'm so glad that I did. Not that I came home with a diagnoses - but I came home with some high cortisol counts. Some excellent recommendations from Dr.S and now I feel like I do have some validation. My GP now beleives me. Not that I think he understands cyclical cushings but he know's that this tumor is doing something to me. I no longer feel crazy - my husband might diagree lol but I know that I have a sickness that needs to be taken care of. I feel closer to a diagnoses. I feel hope again. Now don't get me wrong when that damn depression hits and I go to that "dark Place" it's hard. But I have you all to pull me out of there and kick my butt back. And beleive me I need my butt kicked every so often!
So this is where I am. Waiting to here from the endo who I felt did not have time for me. See if she wants to see me. If not I go to Montreal by Dr.S recommendations and see one of his follows there. Till I hear anything I'm testing. I've been charting my symptoms - and I feel I have a grip on when I'm changing from a high to a low. So when my symptoms change - I will test. I've done a 8 am 4 pm coritsol count and 1 UFC last week. It will be interesting to see what they come out as.
I won't be dissappointed if they are not high - it will only make me stronger and know that when I feel ok I'm not high and keep testing. It's all I can do. One day someone will take this nasty tumor out of me and maybe my long lost friend Cathy McMahon can come back home.!
I also need to mention my very best friend in the whole wide world my husband Tim - who has so patiently been beside me. I know he just wants me to get fixed. He has always beleived me never ever has he doubted(sp) me. I know how lucky I am to have such a wonderful and caring man. I know I am blessed with him in my life. (God if he reads this his head is going to get so big) LOL. Don't get me wrong - we have or fights and make ups just like all couples and some can be really nasty one's. But I know he is with me no matter what. I just love him to pieces - and I know I should show him more often.
July 6, 2007
I got my results back from my 8am and 4 pm cortisol = Normal. I was feeling ok when I got this done. So I know I'm not high when I don't hurt. I'm depressed about all this - about having to prove I'm sick. You would just have to look at me and know. I'm not me anymore. I don't know who I am anymore. I don't like this person I've become. I don't feel like anyone likes who I've become. Why can't a doctor look at me and just friggen help. I'm just sad right now. I have so much more testing to do and I'm feeling defeated I guess. I don't feel like testing anymore. I just want to go into a dark place and everyone just leave me alone.
July 19, 2006
Weird thing - my blood work was normal but my UFC was high! I didn't get a number but my GP sent it off to my endo right away. I had an appt with her today and she diagnosed me with Cyclical Cushings. So after 2 years of testing I can fianlly say that I am diagnosed. Getting there slowly but surley.
July 23, 2006
I got a letter from my endo today. She has written a letter to a surgeon in Winnipeg. I was a little confused with the letter. She wants me to know that if I have the surgery she can't guarentee (sp) that I will be cured. She has the same concerns that Dr.S did at NIH. That they are not positive that the extra souce of cortisol that is running thorugh my body is coming from the tumor on my adrenal. So why is she still pushing for me to get this tumor out if she has not checked to see if it is coming from my pit? Could I also have a pit tumor???? Could it be the pit tumor is causeing this disease???? My endo also told me that I could end up being sicker / and sick all the time. I'm not sure if I have faith in this surgery now I'm worried. I have not heard from the surgeon yet but I will go for a consultation and ask him questions before anyone takes anything out of me. I'm also going to see my wonderfull GP - he has really been so very good to me. He does not understand this - he calls it an "endo's problem" but admits he does not understand it. If it wasn't for Dr. P and his listening to me and believing me I would not be were I am right now. I'm sure he must want to hide when he knows I coming into see him. I am very fortunate to have him. Anyway I will continue this once I find out what the heck is happening. I'm going into a normal phase right now. I can feel it in my bones and muscles. I'm scared because I know what is coming and I'm probably going to make it worse by worrying about it. It's a catch 22 - damned if you do damned if you don't. Later friends.
October 9, 2007
Well quite a bit has happened since the last time I wrote. There was some talking back and forth between my endo and Dr. S at NIH - I'm not sure exactly what was said but I do know the Dr.S said "not cushings". My endo still says yes to cushings - so I saw Dr. Huge Taylor (Adrenal surgeron) on Sept 10, 2007 and had my left adrenal and the tumro removed Sept 18th, 2007 - I week after I saw him. I was surprised when the receptionist phoned and told me. She said that they had a cancellation and my endo and Dr. Taylor thought I should take that place.
So now it's 3 weeks after my surgery and wow I did not expect it to be this hard. Right after my surgery I crashed twice. I don't remember much but Tim said it was scary. I was scared too. But that's all over thank goodness. I've weaned down once on my cortef it went ok. It can get pretty painfull - but that's to be expected - I have good days and bad days. The surgery pain is gone - except if I breath in deep. It's taking the steriods that makes me crazy. Sometimes I feel high - I have panic attacks - but I have ativan to take. I just hate feeling high and can't wait for the day that I can say I am officially cured. I see my surgeon on Nov 5, 2007 hopefully he will have the pathology report by then. I see my GP next week maybe he might have it (doubt it but hope so) I'm taking one day at a time - trying not to rush it - it's hard when you just want to be off the steriods and have a cure. I hope to god I can say I feel normal again. Some symptoms have gone but I still can't sleep good. But that's from the high dose of steriods I'm still on - they say once I get lower I'll start to sleep better.- Can't wait.
So that's where I am right now 3 weeks today post - op - taking steriods and waiting for the next wean and the pain. More later.
Well it's been just over 3 months since surgery. It sure has been a crazy and scary ride. I ended up with a blood infection a month after surgery. "NOT FUN" again it was scary. I was in the hospital for a week. I had to take 10 days of antibiotics when I got out. Plus when I was in the hospital they had me on IV antibiotics the whole week. Anyway I survived - but at some point I remember thinking "is this the last thing" and I going to live through this one this time??? Some of my thoughts were crazy - when I look back now - but man it scary when you get so sick.
Here are the symptoms I had before surgery. I wrote them all down - last year some time - I can say now that all of these are gone!!! Sometimes I'll get sore bones or I think my hair is falling out again - scares me. But if you look at this list that is nothing to live with now compared to what it was like! Everything on this list has dissapeared. Even the skin tags - they just fell off. It's scary when you think that 1 small tumor can create so much trouble in your body.
<H1 style="MARGIN: 0in 0in 0pt">Symptoms</H1>
- Memory loss
- Mental confusing
- Eyes ? vision loss/puffy/tears
- Stretch marks ? dark red/purple at times
- Gums bleeding
- Bad breath
- Skin tags
- Teeth separating/uneven
- Weakness in legs ? can't get up from a squat
- Difficulty climbing stairs/walking/exhausted
- Weak arms/legs
- Wide spread pain/flu like
- Stiff feeling/ hard to walk
- Sore feet- hard to walk after sitting for 10 to 15 min.
- Back pain/left side/lower back
- Fatigue ? no energy
- Large Weight gain ? most of it in the last year ? 2005/2006
- Hair falling out of head ? hair is coarse/dry/brittle
- No arm hair/occasional long hairs grow
- No outer eyebrow hair
- Facial hair ? long white thick hairs grow (mustache/nose and inner eyebrow.
- Long hairs grow on tummy/back of legs/arms/inner eyebrow.
- Heart palpitations
- Brittle finger and toe nails
- Dizzy ? room spins
- Chocking sensation ? thick tongue/tingly tongue/sore jaw/burning tongue/metallic taste
- Pressure feeling in my head and nose area
- Nausea ? comes and goes
- Sore nose/blood when blowing/cuts/can be dark red/burnt orange in color
- IBS ? loose green/yellow/black stools ? sometimes clay color/ undigested stool
- Urinate all the time ? feeling of having to go all the time
- Depression/moody/anxiety attacks/irritable
- Dreadful feeling/thoughts of dyeing/death
- Social isolation ? don't want to be around people
- Night sweats
- Cuts take a long time to heal
- Bruise easy
- Edema ? get very puffy ? retaining water
- Freezing cold ? to the bone/can't warm up
- Red face/neck/upper body
- Sweating ? just sitting at the computer ? dripping wet
- Not sleeping/waking up anywhere from 2am to 4am can go for days with 3 to 4 hours sleep in 24 hours.
- Lethargic ? very hard to concentrate
- Rash raised-itchy-face/jaw line/ears/scalp/neck/upper torso
- Hyper/shaky feeling ? heart racing
- Red Marks on Nose and upper lip area ? gets very red at times ? brown spots around my lips
- Small red (like blood spots) tiny-all over body
- Creaky bones ? knees/ankles/wrists/fingers/toes
- Pain between shoulder blades ? base of neck ? goes down shoulders and spine
- Out of breath /hard to concentrate
- Thirsty ? very thirsty
- Blood sugars go high and low from 2.2 up to 12 ? then it can be normal for days ? then act up again
- Speech problems ? mixing words up/talking back words or forgetting what I'm saying half way through a sentence.
- Spelling words wrong ? new/knew ? hole/whole
- Feeling of complete exhaustion ? physically/emotionally
- Ear wax ? notice a lot more ? itchy with raised bumps on inside and outside of ears
- Sore left breast ? achy feeling
These things do not happen everyday and they don't all happen all at one time. I don't know what is going to happen to me from day to day. It's like a light switch turning off and on. But it's getting worse. I have no control as to what is happening to my body. This has been happening since 2002/2003 but much worse with new symptoms in the last year.
- Diverticulitus (sp) Right side (but left side is sore)
- Cysts/Fibroids ? 3.0 cyst on right ovary (but cyst is gone now)
- Tumor on left Adrenal Gland ? 2.2 cm
- Fatty liver ? Surgeon told me this when diagnosed with Diverticultus.
- Planter Fanchitus (sp) ? left foot
- Tested for type 2 diabetes ? Negative
- Tested for Carpal tunnel ? Negative
Extra Strength Tylenol
Today Jan 9, 2009
Last year I was told to chart everything - so I did. This is what would happen to me day to day with cylical cushings. When I read it now it gives me the shivers. I will never forget this pain. I am so very thankfull that I am cured. I am so thankfull that I had all of you. It was suggested on this site to chart - and this is what really helped me get diagnosed. I figured out when I was high in cortisol and when I was not. I remember getting scared when my cortisol would start to go normal. I felt better when I was high. I hope this can help someone else to get diagnosed - that is why I'm putting it here.
February 21, 2007 (Wednesday)
- Very weak/ hard to walk upstairs
- Short of breath
- Retaining water
- Bad breath
- Sore all over (flu Like)
- Slept ? to bed at 9:30 pm up at 3:30 am not able to nap in the day
- Burning tongue/chocking sensation
- Itchy rash ? not bad but there
- Sore between shoulder blades
- Felt horribly painful today
- Joints in hands/knees/ankles hurt ? achy
February 22, 2007 (Thursday)
- Legs/arms weak
- Sore neck between shoulder blades
- Burning tongue/chocking sensation
- Sore left side ? back and front
- Short of breath
- Rash ? not bad but there
- Flu like
- Sore left breast
- Slept ? to bed 9:00 pm up at 3:00 am can't nap in the day (tried) shaky feeling heart palpitations
February 23, 2007 (Friday)
- Choking sensation
- Hard to concentrate
- Sore left side ? front under rib and back
- Out of breath
- Bad breath/sore gums bleeding
- Creaky ankles/knees/wrist/fingers
- Weak muscles arms/legs
8 months after surgery - May 2008
Well I can say now that I am cured. Not that a doctor has said it but I sure feel it. I'm trying to get back into life again. But I have a set back. My diverticulitus *sp* has acted up again. I thought that would have dissapeared with the rest of my symptoms but nope. As some might know I'm working full time at the court house and I find it so very stressfull both my kids are home for the summer plus a puppy. Very busy - I think to busy - probably why the diverticulitus showed up again. I've done some heart searching and I've decided that my health has to come first. My job is so very stressfull for me. My brains are still trying to get back to normal - I just feel so stupid. I don't