Hello, I’m from Hampton, just outside London. Same old story – at least 6 years of various illnesses, including four operations for various crap (kidney stones, gallbladder removal, and 2 cysts on my coccyx)
I then went from being very skinny (even after childbirth) to very fat in about a year (from 7.5 stones to 13 stones). You could roll me down our local hill! I wear maternity clothes as my tum is so disproportionate to my legs & arms (size 26 vs size 12!). My face, chest, neck and back look like someone’s put padding in, and my nice red glow brings all sort of compliments about how healthy i look, grr! I’ll post some photos later.
So far, a left adrenal tumor has turned up, but I have abnormally high ACTH (60) with a highish cortisol of about 600. This apparently implies a pituitary source – but the pituitary MRI was clear. I’m waiting on a second one with gadolinium this time, but here in London MRIs take AGES. The wait at our local hospital is currently 10 months.
In the meantime, I’m frustrated and feeling lousy and v tired. I have to work full time (luckily I’m an accountant, not something overly physical) as I’m a single mum to a lovely 8 year old girl who does not deserve all this. The guilt eats me up, but she is thankfully not the outward bound type!
Walking is a struggle as my legs seem to suddenly buckle on me, and sitting up without support at say the hairdressers or a restaurant is really difficult. So my (thinning) hair’s a mess and I don’t eat out much! I veer about – someone at work told my boss I couldn’t walk in a straight line! Highly amusing as I haven’t touched a drop in ages!
Other symptoms that have developed more recently include interimittently high blood sugar, intermittently high blood pressure, have to shave every day, horrid night and day sweats, red marks up my arms, but none on my body, intermittently rotten swollen ankles and feet, recurrently horrid kidney stones, and of course, an attractive buffalo hump (moo). And the final insult – can’t get into any of my shoes any more so shuffle about at work in my oversize carpet slippers. Very popular amongst my grey accountant colleagues.
As so many of the symptoms are intermittent, the endo says he is convinced it is cushing’s, but cylical, due to (again) interimittent high blood cortisol and ACTH, and non suppression on three low dose dex tests. Then the first 24 hr ufc came back normal which was very frustrating. I’m not particularly religious but i pray he won’t give up on me as it is a long journey compared to the diagnosis of other equally horrid diseases.
Feel quite isolated from my mates and lovely mum, although they are trying hard to be supportive – I’m surprised my mood swings haven’t frightened them all off lately. It’s so difficult to explain how rough it feels to take part in normal activities, especially when every symptom is something most people consider they have in everyday life to some degree. As well as the physical exhaustion/pain/weakness, my body image distresses me enormously. Recurrent kidney stones are pretty painful too (but not as bad as childbirth as a lot of men claim!).
Hope to be there soon. Great to read all your stories and know that so many of you know how it all feels – and have felt it for umpteen years too.
All the best.
Update April 21, 2005.
Following dex/CRH test, which even included a dexamethasone assay to make sure the levels were adequate (took forever to come back from the lab), my endo confirmed cushings. The bad news is I need the IPSS which will be in May. My ACTHs are between 80-100 so it is most likely a pituitary cause despite my adrenals showing a small adenoma – a red herring!
It’s a very odd feeling after waiting so long, knowing something was very wrong, but not knowing what, and thinking i would go on for ever in misery. So to all you guys out there feeling like this, and i know you’re out there(!), don’t give up!!
Wish me luck …
Posts in Liz’s memory:
Terry: Oh no, that is terribly sad.
Jenny: Oh no, what happened, did he say? 😦
Beth: omg, I felt sick reading this. I knew of her, but never got to know her. I’m so sorry. 😦
Regina: How tragic!
Liz: This is just so sad !! And yet he reaches out to us in his time of sadness, please forward to him my deepest sympathies
Nancy: Oh no!!” This makes my physically ill! I’m fighting tears.PLEASE get details so we can try to learn about what happened and prevent any other Cushie from loosing their life.. Hugs and prayers to Liz’s family!
MaryO: He didn’t say – I just responded to his email and we’ll see if he has any more to say. I hate when Cushies die 😦
Sandra: Omg liz was my friend! We used to chat on the phone when I was seriously ill too! Omg I cannot belkieve it! Mary cud u pm his email add pls xxx
Liz: Me too Mary me too, just brings everything to a scary place for all of us !!
Trisha: I am so sorry to hear this. I remember Liz from the boards.
Sandra: Have just spoken to ciara lizs daughter who said it was a massive heart attack in the end! Her funeral is on thursday! God bless u my friend xxxxx
Lisa: God bless her family..so sad 😦
Kim: So sad
Jennyfer: Oh no no more cushies down please send my love
Judy: So sad. Does anyone know how old she was, I had never figured that out.
Mary: Oh no! I loved our Lizzy girl and have been thinking of her recently. I hadn’t heard from her in awhile. So very sad. Please pass along my deepest condolences.
Linda: No! Not Liz! No no no
MaryO: She was 45. On the C-H boards, her name wasLizr007
Shauna: News like this breaks my heart over and over again. Mary, please let him know that her Cushie family mourns her loss deeply.
Linda: Please do tell Liz’s brother how much she was loved. I can’t believe she is gone….
Judy: Thanks, Mary. I sometimes haven’t converted who they were on the boards to their real life name. I know who she was. That is so young.
Adrienne: so sorry, so sad!!!
Linda: Please let Liz’s brother know that I adored her. She was one of the first people I met on the Cushings boards many years ago, and she was one of my “rocks”. She was such a supportive, loving person with a great sense of humor. I am heartbroken that she is gone.
Stephanie: How tragic!! Thoughts and Prayers for her family and friends.
Lisa: Poor Liz. My heart breaks for her family. I remember her struggles Mary: You have my permission to send my condolences.
Grace: This is such sad news! Prayers and hugs for Liz’s family. How sad that we lose even one of us to the complications of this disease.
Sandra: RIP liz u were such a wonderful person and a dear friend! I’m sure suziQ was waiting for u along with all our other cushies that have past over! God bless u huni I will miss u! Xx
Joanne: Im so sorry to hear another precious life taken by this illness, prayers for her and her family..
Anne : Oh not Liz!! She was an awesome person! She had such a great spirit. How horribly awful.
Janelle: So sad.. Please let us know what the complications were.. 😦
Alicia: So sad. We are losing way too many people to this disease. Praying for her family.
Robin: Oh, this breaks my heart. Please tell Liz’s brother we will miss her terribly.
Heather: I’m so sorry. I loved Liz. Her spirit and sense of humor were amazing. I was actually thinking about her the other day as well. Please feel free to convey my condolences to her family.
Melissa: As soon as I saw her name — Liz Rafferty — I started to cry. Liz was part of our group there on the Cushing’s- Help message boards. She posted over 2000 times. When you posted her screen name, I could see her avatar in my mind. I am so sad to hear that she is not with us, her family or friends. I am so upset as I wonder why this has to happened to her, to us, to our community. Please send my condolences along to Liz’ brother, and make sure they know that she was caring and supportive of many as well as loved by many. I will miss her.
And Mary, please be sure to tell him she was part of our group, too. I bet he would want to make a donation to you and Cushing’s-Help if he knew how extensively she participated in our group.
Hugging all of you a little tighter today.
— Melissa, TX
Beth: Another person with my disease has passed. I didn’t know her personally, but the hurt is still there.. As is the fear. RIP Liz R.
Chanelle: Omg!! Ugh my head hurts :((
Sandra: Beth she was a dear friend and such a sweet sweet girl! Even at her worst she was cheerful and lovely ! She has left behind her daughter and her mum god bless em x
Christina: 😦 so sad to hear this, RIP to her.
Mary: I loved Liz. She was so funny and upbeat and helpful. RIP old friend.
Linda: Rest in peace, Liz. You were very loved and and I’m thankful to have met you on my Cushings journey.
Susan: Thanks for posting this, MaryO. My sympathies to Liz’s family for their loss. As a member of this community, we will miss you.
missaf: My heart goes out to her family. I’m glad she started to feel better for a little while and got to smile more in life. Damn Cushing’s.
Sherry: Not another Cushie:( I am so sad to hear this news, Liz was well known on the boards and she will be greatly missed. I just hate this. My deepest sympathies go out to her family.
Elizabeth: Deepest sympathy & many prayers. This is so heartbreaking.
Dawn: I did not know her, but her passing has affected me. I am sorry that the world has lost her and I’m sad that it was a result of this horrible disease. It always hits close to the heart. My condolences to her family and friends.
Ami: I am completely heartbroken. She was a dear. Please include my condolences to her brother. I too would very much like to hear what the cause of death was.
Kristin: I’m so upset about this, all I can say is I’m sorry for her family. Leaving a 16 yo without her mommy is so terrible. Somehow the medical community needs to realize how many of our group are not making it needlessly… Prayers for her family. Very nice of her brother to let us know.
Melanie: OMG! I feel ill. I loved Liz dearly, she helped me keep my sanity when I first arrived on the biards and gave me such great support – we had some great laughs together and spoke on the phone for hours at a time. I cannot believe another one of us has gone. This damn disease is so bloody unfair.
Just read it was a heart attack (Thanks Sandra). – heartbreaking.
Gumdrop: So sad to hear this. I pray her family is comforted.
Sandra: If I find any more info out I will post
Mary: She and I had SIADH in common and the continuing electrolyte issues afterwards, too. I think when I was hospitalized with it, she was the only other person on the boards who’d experienced it at that time.
Bernadette: I didn’t know her, but am so saddened by her much-too-early death. My thoughts and prayers are with her family, and with all the rest of you who knew her.
Ami: I know she and I exchanged posts on the boards. I wish I remembered more about her…
Shelley: I’m sorry to hear about her passing. She and her family and loved ones are in my thoughts and prayers.
Mary: oh no! devastating news. so sorry and saddened to hear. 😦
Amy: I am so broken hearted. 😦 Liz was one of the very first people to make friends with me on the cushings website. So sweet and funny, what a wonderful person she was. I have just cried and cried ever since learning of her passing. She really struggled to get her BLA for a long time. May God rest her soul. She truly was “one of a kind”
Dacia: Please send my love, my thoughts and prayers to all…
AuntSha: Condolences to her family…. My prayers and thoughts are with them. She certainly has been taken too young and much too soon :-(!!!
Diane: My beautiful, funny, smart dear friend Liz. You carried me through my journey and held my hand through some of the worst times I can remember. You were my rock, you were my shoulder. Words cannot express how I feel right now. I am heartbroken. I am so sad. The heavens are blessed with another beautiful soul. Love to you my dear friend xx
The last time we saw each other was when you had your adrenal operation. I was so thrilled to finally see you in the flesh after spending months posting to each other here and emailing and chatting on the phone. I met Liz at Cromwell Hospital in London where she was recovering from her adrenal operation. I bought her a massive bunch of stocks that filled her hospital room with a glorious heady scent and I bought along a few things to pamper her with. We spent the afternoon chatting non-stop and I remember giving her Mum a big hug. Those memories will stay with me and that is how I remember Liz. A happy smile and a big heart.
Rest in peace lovely lady….
Your Cushy friend, always,
Ellen: My deepest condolences to her family. This is such a stark reminder of how cruel this disease is.
Monica: Oh Liz. I’ll miss her, she was such a good person and gave support to us all even while fighting her own battle.
Melly: So tragic! May God welcome Liz and bless her family with peace and strength during this horrible time. Such a reminder that each day I breathe is a gift.
3v3: I am new here so I am not familiar with Liz, but I am so sorry to read this. Condolences to her friends and family. I was trying to find her bio info/old posts and it seemed like she was cured or at least recovering? 😦
Judy: Mine too. It’s just so sad. I pray for the family.
Beth: Such a tragic loss.. I wish her family and friends strength and peace. 😦
Sandra: Have spoken to aLex woore who was also a cushie friend wiv liz and apparantly she had a bla smtime ago but they cudnt get her sodium n potassium levels right so whether that had anything to do with it I dnt knw but have left my no wiv ciara and her nan so if they call I will let u all knw! X
Karen: Please send my condolences also, such sad news . This disease is awful, we are losing so many amazing people to it. Many prayers,
Monica: Thinking of Liz tonight. I pray for comfort for her family, especially her 16 year old daughter. Far too many friends lost to this disease over the years.
Stanley : I’m sorry to hear that.
Melissa: This makes me cry all over again.
Mary, could you offer our services in helping to decipher what could have led to Liz’s death? For example, we could guide the family on getting copies of her hospital, doctor, surgical, and lab records.
Susan: I am just devastated by this news. Liz was so kind and caring. So tragic to lose someone so young.
Rissa: This is so sad. Praying for Liz and her family tonight.
Ikho: This news makes me so sad. My condolences to her family.
Lorrie: I am so sorry. My prayers go out to her family. 45 years old….such a young woman. God Bless them.
Amy: I’m still just in shock. Thinking back I can remember that sweet pic she had of her cat playing with something. I never could figure out what that cat was doing though. LOL This is just surreal to me . . . 😦
Jenny: Please pass on my condolences, her family will be in my prayers. Just so unbelievably sad. 😥
Jo: cant believe it. very sad, god bless our dear friend Liz.taken far too soon.
Jenny: The Cushings community has lost yet another dear member. Liz was only 45, please pray for her family and friends. 😦
Lisa: One of our fellow “cushies” (Cushings patient) sadly passed away. Liz was a wonderful 45 yr old mother of a 16 yr old and a friend to us that got so many through this. She was an inspiration and someone that kept her chin up and a smile on her face and ours on our message board. She will be missed.
Mary R: We’ve lost another Cushing’s Warrior from complications of this rotten disease. Her name is Liz and leaves behind a 16 yr old daughter. This is the 3rd Cushie in 8 months!!! It doesn’t have to be this way! Just because it’s rare, doesn’t mean that the Dr.s should doubt us and our biochemical/imaging evidence. Please say a prayer for Liz’s daughter and family.
PLEASE promise me that if this disease takes me from my family at a young age, that you will bring Cushing’s awareness & education to others on my behalf.
Jen: I remember Liz well and I am so sorry to hear that she has passed. My condolences to her family.
Diane: It’s been a day since I found out and I am still numb with shock. There are moments in your life when things happen that change your whole outlook on things. Cushings was that something for me. However with all the difficulties of coping with such a terrible disease I managed to find many special friendships and was given support by such a special group of ladies that I will treasure in my heart forever. Liz was one of those special people. We had a giggle, we had a moan about the whole NHS process and testing, we shared some of our most painful moments going through this disease. I will miss you so much Liz. Shine a bright light in heaven lovely lady xxx Mary – you certainly have my permission xx Thank you for creating a place where I had an opportunity to meet someone like Liz xx
Amy: I was so very fond of Liz and my heart is still broken in two. 😦
Diane: I’ve just been reading some of Liz’s old posts on the site…more tears are flowing but with a big smile on my face. I forgot just how much of a laugh we had despite the fact we were going through hell…I particularly like the fact that alot of people didn’t understand Liz and my British sense of humour. It just reminded that some great bonds were forged during hours of such need and loneliness, stress and depression, and a fight to get heard and a struggle to get diagnosed.
Jo: do you remember when her endo put her in the priory, & she met Ronnie Wood ? Liz Thought she looked better than he did.I cant count how many times K didn’t get his dinner because we were too busy on the phone.Still cant believe it.
Sally: I am so sad to read this. Liz, myself and a few others had said we needed to get together in Bermuda (half way) when we were all finally healthy to celebrate our 40th birthdays. I don’t know if any of us managed to hit that milestone healthy, I know I didn’t and I know Liz didn’t. I’m heartbroken, it’s so very sad.
betseebee: Such devastating news! Liz’s bio was one of the first I read when I joined the boards. I also distinctly remember her kitty avatar and that I could relate to things in her bio, like being grateful that my daughter was also not an outward bound type, which made it a little easier to be at home so much. My most heartfelt condolences to her beautiful daughter, Ciara, as well as the rest of her family.
Liz, may you rest in peace, and dance among the angels.
Sherry: My deepest sympaties go out to her family. This disease is awful, Liz was a wonderful person, she and I joined around the same time, I am very sad to hear of this disease taking another precoius life. RIP Liz.
Diane: That is so funny Jo, I did not know that. I think Liz would have had no problem looking better than Ronnie!! Have you seen his program on SkyArts right now?!! Sally – I am 40 in June and this has just brought home to me how precious life is and. Not sure I’ll get to Bermuda, maybe Bognor…!! xx
Sandra: Sally I remember that convo ! I was one of them then, and yes I made my 40 th prob the healthiest I’m ever going to b now despite battling fibro still! And diane I knw what u mean about the british sense of humour! So not only did we laugh about the joke we cracked up with the fall out of being misunderstood (in a goodway) of course! Lol …..I thought about her sooo much yesterday and poor ciara bless her! Just stil can’t beleve it x
Jean: Im soo sorry to hear abt this ;( Really shows how this disease is serious n deadly, if not treated properly or from complications from surgery…my condolences to her family n all who knew her.
Dave: Liz, we never got to share that coffee. You were so helpful to me in researching my various problems and I know that there are many many friends who don’t come here any more but we will all miss you. Sincere sympathies to all your loved ones.
Sheila: A tragic loss at such a young age. Sad to know that death happens with Cushing’s when we are in the year of 2012. Hopefully more doctors will take an interest in this little known disease of Cushing’s Syndrome.
Tanya: 😦 OMG rest in peace Liz. I’ve heard “I wish cancer would get cancer and die.” Well ‘I wish cushing’s would get cushing’s and die.’