Showing posts with label sister. Show all posts
Showing posts with label sister. Show all posts

Friday, May 23, 2014

My Sister and I were Diagnosed With Cushing's: MALE Cushing's patient

Meet Gabriel


The year was 2007 I was age 16 I woke up like any other day went and played some games with my friends. That night, something happened. It began with a small pain in my side that grew stronger and stronger we went to the hospital thinking it was appendicitis. It wasn't after a few tests and the pain not going away they (doctors) were stumped as to what it was. I stayed in the hospital for about three weeks getting tests done and nothing was found the pain stayed the only thing that was wrong was my level of cortisol was slightly elevated.

 A few months went by and many doctor visits later nothing was concluded. Doctors were doing random strange tests and nothing. One doctor wanted to start treating me for Addison’s disease which is the opposite for Cushings but they were on the right tracks. About a year went by and test after test being negative I was diagnosed with Fibromyalgia my body was exhausted and my mind was numb. After a year of testing to be told nothing's wrong really made me sick. But like always, I moved on from it. I rolled with it and I was treated for fibromyalgia with the help of sleep aid and the knowledge of certain things that can trigger intense pain episodes.

 Around the year of 2009 my sister was diagnosed with a brain aneurism and had surgery. The doctors who were doing her tests noticed a small link between mine and her results .She recovered from her surgery. And began seeing an endocrinologist after a few months of testing she was diagnosed with Cushings. During this time of her surgery and testings I was trying to finish highschool and start college. The year was now 2011 I was living my life with fybromyalgia but I began getting sick I remember having an adrenaline rush and nearly passing out because of it something wasn't right we were for sure of it. I began seeing my primary doctor letting him know what was happening. I had weight gain, low immune system, blackouts and pain. The doctor’s response was I was depressed. Cool story right.


I sucked it up and dealt with it for another year. My sister was diagnosed with Cushing’s and my parents noticed we had similar symptoms and started and put two and two together. I made an appointment with my sister’s endocrinologist and she noticed right away that something was wrong. For me, I felt joy that someone was going to help. She noticed the straie on my neck and underarms and jotted down my symptoms which included bone pain, muscle weakness, excessive urination, thirst, fatigue, headaches, thin skin,  and bruising. I was text book Cushing’s.  They immediately started testing me for Cushing’s. My first urine test was the worst they have ever seen. My cortisol was sky high at a level over 70. Other family complications that happened through the year put my treatment on hold. Meanwhile my sister was able to participate in a cushings study with a medication that was new to the market called Signifor, it was a daily injection that had the chances of shrinking and stopping the growth of the tumor. After a year, her results were great; she lost weight and looked healthy. I began going back to the doctor and had more testing. My cortisol was really high around 60s. The levels made my body constantly tired and sent my body into over drive. I did an MRI and Dxa scan. They stuck a tube into my brain to see where the leak on the pituitary is. 3 months later my results came back and the conclusion reached was that I had Cushings Disease. I had multiple tumors but none were visible. That was why my body was shooting out cortisol. My life flashed before my eyes. Years and years of waiting, crying, and testing I finally had my answer. I got into the case study for CD.

 I was the only guy in my state to be diagnosed with CD at the age of 22 and my sister 19. We were the talk of the town. Unfortunately testing requirements were very complicated and I decided not to do the study and instead go for the medications. It took a few months to get the medications since they were new and pricey. It was okay to wait since I’ve been waiting for years. After 7 weeks I got my first order of Signifor. I began taking the injections. The first injection made me vomit and I continued to vomit after for two weeks. One morning I woke up smiling, I no longer felt a lot pain in my body and my mind felt clear.  I was on the road to recovery. After 2 months of taking the medication I feel great. My mind is right; I still have pain for fibromyalgia. I had my first adrenaline rush and didn’t pass out. My mental status is good I have always stayed positive despite what has happened. I keep my mind away from the depression. Now life is falling into place. The next thing I need to worry about is what to do in life without wondering if tomorrow will be my last day on this earth.

Thursday, June 20, 2013

Things Not to Say to A Sick Person

The other day my sister and I were having a discussion and she told me that somebody who she knows-- let's call her Suzie (I'm trying to keep it anonymous) suffers from a behavior disorder, and one day Suzie told my sister about her condition to explain why she is the way she is and she cannot help the way she acts and feels. She said that the disorder takes control of her thinking and she takes medication to feel stable because she tends to have anger issues and a lot of misunderstandings due to her condition. Well my sister listened to everything Suzie had to say and my sister then said "I'm sorry I understand and know how you feel" then Suzie got really mad and angrily responded " How would you understand or know how I feel?". Of course my sister apologized again for it and tries not to say anything that could be misconstrued to Suzie again.

My sister then later came and talked to me and told me what had happened with her and Suzie. I then told her that the saying " I know how you feel" or "I understand" is my trigger too lol I don't know why but I guess a healthy person cannot fathom at all what a sick person feels or goes through on the daily and so they cannot say those kinds of things. I know that it comes from a place of sympathy and empathy but In my opinion the sick person wants to just talk and let out some steam from their condition and what they really want is just a lending ear from someone who cares. So my sister asked me what can she say or cannot say to a sick person. And I told her, The sick person doesn't want any kind of advice or suggestions so don't feel the need to give any tips unless they ask for it.
For example: you shouldn't say, "why don't you try (blank) it'll make you feel better" because the sick person would think "well you think that if I did such and such I would suddenly be healthy again?!"
 then you say"things happen for a reason" the sick person would think "so are you saying I got sick and got tortured mentally and physically for some kind of reason?"
oh and my #1 favorite is "You must feel (blank)" --why is that the worst thing to say to someone? because sick or healthy, nobody likes to be told how they are feeling. nobody knows how they feel except for the person living it. I would never want anyone to have this illness but if you can walk a mile in my shoes, then you can say that or whatever you want.

lol so I was reading other blogs from other chicks with chronic illnesses and found some funny quotes and lists of things not to say to a sick person. I'll post it up. Well thanks for reading and remember not to say these things:


(I wouldn't wish what I have on anyone, but unless you get it, you just don't get it)