Patience and support

Well another week of not feeling alive but merely waiting. On Wednesday we went to see the doctors at the endocrinology clinic. My endo referred me to them to help expedite the surgery. When we got there, many doctors came into the room and examined me like I was a new species or alien lol. They kept coming in and out and told me it's rare for them to see an adrenal tumor cushing's patient and each one of them asked if they can examine me. I found it amusing so I let them poke and pinch me. This one lady kept pinching my cheeks haha. She told me "remember the depression you're feeling is not you but the cushing's, keep that perspective!" The good news is they will request for urgent surgery. The bad news is there is only one specialist endocrine surgeon on staff who was not there so they are referring me to go see him sometime next week. They also ordered more tests. Sighh more Lab testing and waiting... At this point I just feel like i'm at the end of the race but I cannot get enough steam to pass the finish line.

Then I was looking at the Cushing's book they gave me and all the symptoms listed I'm going to rate the symptoms (1-10) of what i'm experiencing:

• Fatigue -9 (hell yeah)
• Muscle weakness -7
• Depression -6
• Anxiety -10 (yup)
• irritability -7
• Loss of emotional control -6
• Cognitive difficulties -9 (like a goldfish)
• Poor short term memory -9
• New or worsened high blood pressure -8
• Glucose intolerance that may lead to diabetes -7 (pre diabetic)
• Headache -8 (24/7)
• Bone loss, leading to fractures over time -8
• Thicker or more visible body and facial hair (hirsutism) -6
• Balding -0
• Irregular or absent menstrual periods -10 (since I was 17)
• Weight gain in the face (moon face) -8 (chipmunk status)
• and between the shoulders (buffalo hump) -0
• Upper body obesity and thin arms and legs -5 (gained 10 lbs in 6 months)
• Pink or purple stretch marks -0
• Thinning, fragile skin that bruises easily -8
• Slow healing of cuts, insect bites and infections -8
• Acne -8
• Increased thirst and urination -10

Yep that's the wonderful gifts all wrapped up into this condition. The symptoms come on rapidly so everyday I struggle with finding balance and controlling what I can and cannot do. The mental disturbances are the worst and I find the anxiety very challenging to control. For now I try to find the "happy" in my day to fight off this stupid syndrome. I count my blessings and remember what people tell me, that this is only temporary and very much reversible and I am lucky my tumor is on the adrenals rather than pituitary. I'll try to be patient as much as I can and know that everything happens for a reason. I am thankful for the people who are supportive and making me feel loved through this process. I don't think I would make it through this time without my support system. The other day I woke up to a sentimental text from my SO that made emotional.

Muffin has been so supportive and loving than I could ever imagine during this time. To know that he will stick by me through sickness and love me at my worst is a sure validation of our relationship. There are stories of husbands leaving their wives because they could not handle their wives cushing's manifestations and that is the saddest thing. I can't even imagine the hurt, especially with the deep depressions one can experience. To leave when someone needs you the most is heartbreaking and those type of men who try to take the easy way out deserve to go to zombie hell. They will regret that very much one day and their recovered wives will have moved on, happy, out living their brand new lives. There was more I wanted to blog about but I forgot. Alright I think I'm done for today my brain is tired. Here's to patience and support.

LOVE love yourself

I recently talked to some women who have recovered from Cushing's and they have been so helpful with giving me insight on how to be a Cushie and how to recover from it. So thank you ladies. One thing that struck out is that all of them told me I need to love myself more in order to have a good recovery. For some reason, most Cushie's blame themselves for becoming this way including myself. I spoke with a lady named Julie and she said "I think the most important thing I want to tell you is to not beat yourself up over what has happened.  Cushings is a medical problem.  You did nothing to deserve it; it just happened.  You will recover but the process will be slow.  You must be very kind to yourself as you recover.  You must surround yourself with people who love and support you." Thank you so much for telling me that Julie. 

So far my symptoms are somewhat under control besides the muscle and joint pains. My awesome doc prescribed some beta blockers that has been helping the anxiety feeling and rapid heart beat. My lovely boyfriend has been giving me massages at night so It helps plus I try not to be on my feet for longer than thirty minutes. Also My wonderful sister has been coming over to help with whatever I need to do in the day time. The memory loss and lack of focus is an issue but oh well I prefer not to remember much these days anyways lol. Before knowing about my condition I thought all these symptoms were due to me getting older and use to joke about it but truly feel like a senior citizen now lol.  Another helpful advice I got was to not fight it and get frustrated but rather have acceptance that some things I simply cannot do I don't have control over and it is okay. it's just temporary. It's okay to have others do things for you in the mean time. For the longest I have been pushing myself to work, study, drive, cook, clean, run errands, going out with friends or seeing family. Seeing friends and family is the worst because they have so much expectations and for some reason they want to be too involved suggesting too many things but hearing all their assumptions of "oh you must feel this way" "oh you need to do this and that" is not very helpful because they have no idea the mental aspect of this syndrome. Yes online there are lists of what a cushing's patients physical symptoms are but there should be a long list of the mental, cognitive, emotional signs and symptoms. I no longer have the energy to explain to people what goes on in my brain of how this syndrome causes me to feel. That I can only be around certain people who are with me 24/7 or from day one who do not trigger my panick attacks since they understand how to handle it. I now have to limit conversations with my mom. I know with family it's from a place of sympathy and love and I love them to death but for a cushie, it just feels overwhelming... All the women i've spoken to told me the fastest thing that recovers after surgery is that their state of mind changed instantly and the anxiety was gone. So I look forward to having that normal feeling back. whatever "normal" is since I thought all of these feelings were normal but they aren't.

 I've always given in to expectations of others and myself because I don't want to lose control over what I can and cannot do but I think It's time for me to know my limits and see it as a step to loving myself more. I found some videos and other fellow recovering cushie's that's been so instrumental to me.

- sharmyn's story youtube
-Steph's picture timeline
-Cushing's disease, moods, bi-polar youtube
-puremoonlite's recovery youtube