I can't speak for everyone, but I know for the majority of my illness my family has been very supportive of me. Initially when you bring up a rare disease to your family they don't want to believe that it is even in the realm of possibilities. Cushing's is one of those diseases that most people just don't understand. We can eat a fat free, no carb, low calorie diet and exercise and still gain weight. While trying to exercise we could damage our bodies even more because Cushing's destroys muscle and bones. I managed to break my foot by stepping on a piece of dog food. Who breaks their foot on a piece of dog food? That is just one of the many things this disease has done to weaken my body.
This top 10 things to not say to someone with a Chronic Illness started floating around Facebook a year or so ago. My illness is actually caused by stress, so number seven is quite laughable. Cortisol is a stress hormone, so it is indeed stress. As for number five, it actually is/was in my head! Just thought I would share this because you really do hear some of these things when dealing with a chronic illness such as Cushing's Syndrome.
In July I am looking forward to going to something called The Magic Convention which is hosted by The Magic Foundation. It is being held in Lombard, Illinois which is a suburb of Chicago. My Neurosurgeon, Dr. Ian McCutcheon will be speaking at it along with several well known Endocrinologists and last but not least a dear fellow Cushie who will also be speaking and is a Clinical Psychologist. Dr. Friedman has been a guest speaker for The Magic Convention in the past, but will not be there this year. I am really excited to hear them talk about Pituitary disorders that effect Adults such as Cushing's, Adult Growth Hormone Deficiency and Panhypopituitarism. However, most of all I am looking so forward to meeting some of my fellow Cushie friends who I have gotten to know and love over the years. One of my dearest online friends is coming all the way from Canada and I cannot wait to give her the biggest and most gentle bear hug on earth! These are my people, the ones who understand every little thing I am going through and it's something that no one else on this earth can fully understand except them. I just can't wait to be in a room full of freaks like myself and feel NORMAL for the first time in my life. I think I'm more excited to meet them and go to this convention than to go to Disney and that is saying a lot, folks.
Thank you for sharing in my journey and I hope you will continue along with me as I update on my progress. One day I will be rid of this disease, but I will always carry the scars of my battle.
Let's just pretend she is singing Mrs. Zebra. ;)
Thanks for sharing your story, Dawn! I do hope you are on the way to a full recovery and will feel better.
ReplyDeleteHi, I just saw your blog and found it fascinating. I can't say I read every entry but I did read a few. I have a strong interest in this issue as I had a pituitary macroadenoma removed 2 years ago. Endocrinologically speaking before surgery I exhibited no signs of anything wrong but post-op I had Addison's Disease rather than Cushing's. Addison's being the reverse of Cushings.
ReplyDeleteIt took me 18 mths to get well. Not from the original surgery but from the sphenopalatine bursting several days after surgery.
I want to make a few recommendations which you may be on top of as I say, I have not read all your blog, so please forgive me if I am repeating what you have mentioned.
1. The single most important key to post-op health is an OUTSTANDING endo. I found one after a detailed search. You seem to have found one as well. Well done!
2. You said you had balloons inserted to arrest the bleeding. Did you have selective internal maxillary angiography performed at the time of the leak? This is a scan of the arteries to ensure all is well. Have you had one since?
2. As hydrocortisone kills bone density you MUST get a bone density scan asap (unless you had one pre-op). Reason being is say you're on hydrocortisone for 12-18 mths (they told me 3 mths and I was on it for 18) your bone density will be affected. It is wise to know asap just what the density is so you can compare it to a future scan.
3. Ask your endo about the wisdom of taking calcium supplements now to counter the wickedness of the hydrocortisone. He may suggest to wait until the hydro treatment is over (as was the case with me).
3. You mention correctly that you're to wean off the hydrocortisone. Please NEVER leave the house with it in your purse or in your car AND always travel with it.
If you have any queries, please ask.
My last post was unclear. I meant to say NEVER leave the house without the hydrocortisone with you. Keep it in your purse or in your car.
ReplyDeleteHi Jay, I do have an excellent Endo. He is absolutely amazing and brilliant. I cannot believe I am meeting someone else who had their sphenopalatine artery burst!!! They never did the angiography. I recently read about that and am very nervous that this was never checked. A study I read about said that it is possible this could happen again if the arteries themselves were not checked. It was mentioned that this should be done if the bleeding was not stopped, but they were able to stop it by the balloons after they were left in for almost five days. I'll have to look up this specific test and see what all it entails. I don't even know who to contact to have this done.
ReplyDeleteCushing's kills my bone density, as does the hydrocortisone. I'm on 12.5 mg at the moment total, but believe I still have cushing's as well. However, I've been having more addison like symptoms because I am sure this infection in my sinuses is not cleared up.
I never leave the house without my hydro. I even have a syringe and 100mg of solucortef in an actovial that I carry in case of an emergency. I also have a crisis letter that everyone in my family carries including myself.
I'd really like to get in touch with you to talk more about what you experienced with your sphenopalatine bursting. Can you email me at pianogirl76@gmail.com?
Thank you so much for commenting!!!
I stumbled upon your blog because I'm being tested for cushings but have never heard of it before this week and I'm trying to learn more. I've been sick for two years with some "mysterious" illness, gone to many doctors, have had so many blood tests done, only to hear most doctors say, "test results came back normal, you should be happy." People don't seem to understand that when you're sick for a long time with some mysterious illness, you want to know what it is, even if it's something horrible. I just went to a doctor a few days ago who mentioned cushings. I cried for about an hour because I was so happy...I might get my life back, I may finally get to feel like me again. the quote you have is so true. I feel like I've been disappearing, like who I was got stolen from me, but by bit.
ReplyDeleteIn December I went to a neurologist because I thought I must have a brain tumor with how many mental problems I have (along with all the other symptoms). I am a really smart person, but now it's not uncommon for me to forget what month it is or I'll be in the middle of a conversation and don't remember the past few minutes, it just disappears. I also feel dizzy all the time and daily I'll see spots in my vision. the neurologist blamed it all on me being obese. I told him that I've been gaining weight since I got sick and it wasn't my fault. I don't snack throughout the day..."But you stuff yourself when you do eat!" he interrupted. "No I really don't."I answered. "calories in, calories out" he said. he made a speech about me needing to eat 5 small meals a day and that I need to go out and exercise. then I told him how I used to be a fitness instructor. I know the difference from being lazy and being sick. You wouldn't tell someone who had the flu to go out and exercise! I know my body and I know that if I were to force it right now that would be too stressful physically and do more harm than good, I just know. he ignored me and continue his bantering. My husband (who hatesconflict) started arguing with him in my defence, but we both realized that he would never listen. on our way out the door he told my husband, "now you go home and put her on a treadmill!"
funny thing was, he had a belly and need to lose about 40lds! I was already in the car before I realized I should've pointed out his own weight.
all that too say... if the test results are positive I'm going to go to that neurologist and shove that paper you know where! :) then hopefully he won't be so rude to the next obese women that comes to him for help.
Anyway, I get my test results back in about two weeks, then my Dr will transfer me to an endocrinologist if my levels are off. I'm pretty sure they are. You stated the symptoms in an earlier blog and I think I have every single one, that's why it's been so hard to pinpoint what's wrong with me, so many different symptoms. if you have any advice for me, I would really appreciate it!
girlybarrows at g mail.com
I'm going to read more of your blog, so I'll probably get some help there.
thank you so much for your blog, it made me really happy when I found it.
I came across your post when I googled "Cushings and eye floaters." =) I spent almost a yr. of my life (about 3.5 yrs ago) going through testing hell-- positive results/negative results.MRI showed very small pit. tumor. Back and forth and so on. Dr.'s were baffled. I was told I "could" have eposodic/cyclical cushings, but that this was the hardest thing to diagnose and testing could take years. Other Dr.'s acted like I was just crazy.After uncountable tests, I just cldn't take it. I had 2 months of all negatives and I went back to my old endo and just decided enough was enough. I see a neurosurgeon yrly to keep an eye on the tumor. Yesterday at my yrly, out of nowhere (he seemed to be on the, you don't have Cushings bandbandwagon), says that he wants to do some basic Cushings testing...??? I don't know if its because of the floaters/vision issues I mentioned, all the weight I've gained since I've been his patient (all the Dr.'s claimed I ddnt "look" like i had cushings), or he just wants to torture me... but Pandora's box just got reopened. The problem is---- he stated he is not "concerned or treating cyclical cushings, just real- full blown cushings." Ok-- well, I don't have that kind..duh! If I am going back into this torture-- I need a Dr. who understands episodic and/or cylical Cushings. I am from IL too. Would you mind telling me your Dr.'s name too?? Thank you so much for sharing your story!
ReplyDeleteyou could email me at lissahahn@yahoo.com
Deleteyou could email me at lissahahn@yahoo.com
Deletehello. i live in montgomery, illinois & work in lombard. I've been referred onto an Endo for symptoms I shared with my primary. Initially, the Endo's nurse canceled my appt stating nothing in my chart supported seeing the Endo. Someone else had the Endo look at my chart & said I should be seen.I'mso concerned about possibly having Cushings on addition to a few autoimmune diseases. If this Endo doesn't work out, I'll look up Dr. Friedman. Thanks.
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