My Rare Disease, My Story

Novartis.com

 

Oh where do I begin? Let’s start with when I didn’t know what Cushing’s was. Let's back track to the beginning.

The day I got diagnosed was my sixth time to the doctors office for bronchitis that year; it was my second time with walking pneumonia. I went in and cried to my doctor that I was barely eating, gaining weight, I was only sleeping two hours per night, my body always hurt, I had bruising all the time and swore that I was going crazy, had depression or was a hypochondriac. He looked at me and said, “You have Cushing’s I bet.” I thought "Is this man crazy? What is Cushing’s?" He examined me as this was the first time I had seen him. He looked at my neck and said that I had a buffalo hump, saw red and white stretch marks on my stomach. He reviewed my food log and saw I was only eating 1600 calories per day and had gained eighty pounds in a year and half and was still gaining.

I had a hysterectomy three years prior and felt like I had hormone imbalances ever since. Actually, I felt like I had those even before that. I always thought  the loss of muscle, the bruising, and weight gain was all because of that. It was from the hormones but not from that. I went to doctor after  doctor after doctor and they said my estrogen and testosterone was fine. Sometimes they would give me a pill for depression or more estrogen to cure my hot flashes and other symptoms. The depression pills never worked for me. I went to a doctor that gave me more estrogen and had their clinical psychologist call me to see if I wanted “had bruising, cried a lot, was 37 and must have a bad home life.” That made me SO mad! I wasn’t having a bad home life at all. I left that clinic and went to another one because of that. It was meant to be because that’s when I found Dr. Edmonds,my primary care physician, the one that said I probably had Cushing’s.

​After Dr. Edmonds said I needed to test, he set me up for two tests: an 8 a.m. cortisol blood draw and a dexamethasone test. One came back positive but the other was negative. Then my doctor thought maybe I didn't have Cushing's. By this time, I had looked up everything I could on Cushing’s and started researching everywhere I could. I found some videos on Youtube, a couple of websites, blogs and Facebook groups on Cushing’s. I researched Cushing’s specialists and decided to go to, in my opinion, the top endocrinologist at the time, Dr. Theodore Friedman (or "Dr. F., as we call him). He listened to me. I tested A LOT! I even tested wrong at first, by testing when I felt bad instead of testing when I felt better (on a high). At first, some of my tests came back normal because I cycled from high cortisol to low. After learning more and getting help from other Cushies by figuring out when to test, my tests came back high, high and high. I went in for a MRI (you should always get a T3 MRI) and they saw something that COULD be a tumor. I was scared and relieved at the same time. What a weird feeling to have. My endo saw a tumor on the left side and my neurologist saw one on the right. It was very confusing but I was finally diagnosed in the beginning of July 2014 and had my surgery scheduled three weeks later in Houston, Texas at MD Anderson, even though I live in California.

Once I was ready for surgery, it couldn’t come fast enough. I wanted to get rid of the tumor and get back to a normal life. By the time my surgery rolled around, my muscle wasting had me only able to lift about 10 pounds. I still wasn’t sleeping. I was angry at nights and had so much anxiety that my foot was tap, tap, tapping all the time. I bruised if someone touched me hard or bumped me. I was depressed because I felt like my family would do better without me around. I am a mother of four teenagers.  It was hard because I wanted to do so much for them. I felt bad that my husband was picking up the slack. I wanted ME back! I wanted to ride my horse, shoot my bow, cook dinner and be able to move the pot of spaghetti etc. NOW I HAD THE CHANCE!

July 25th,2014, I had my surgery. I wanted to jump up on the table to have my brain tumor removed. I had a calm that day and was prepared for it. My husband was by my side and I waved at him and said “See you on the remission side.” When out of surgery, we were told that they had found TWO tumors on my pituitary that were connected underneath. They felt they had gotten it all out. I was relieved.

It's now seven months after my surgery. I am starting to  lose weight.  I am sleeping every night all night long. My hair is growing back. I am not bruising. I can think again and don’t have brain fog all the time. I feel more like ME again. Every single symptom has reversed or is getting better. I can lift 55 pounds now! That a lot considering I could only lift 10. My friends, family and especially children see the differences and all for the good. I take it day by day because recovery is hard and I have to remember I am not going to be ME all in one day. I have more and more glimpses, though, of the old me. I am happier. I am happy to see the flip side.

I have really tried to become an advocate for Cushing’s. I have started a Facebook group called “ Cushing’s!!” that has over 800 members and is all about Cushing’s support. My friend Van and I started a blog together, www.2cushiegirls.blogspot.com. My good friend Rachel and I have worked hard on a website called www.Cushingstories.com. Its a place to go to see other patients stories. Not only is it their story but we have patient videos (in their own words) and tons of Blogs. We want to let people know there are others out there and have it all on one site. The stories of all of us. It’s why I decided from the beginning to YouTube my journey because that was the first place I looked for others like me. I cried on my first video. I almost didn’t post it. I decided that if I can help one person that it was worth the humility of it all.

 

 

There is a lot of information out there. www.Cushingstories.com is a AMAZING site. Also www.Cushings-help.org. My personal favorites are these blogs because they are real....and you really can see the journey of the person!

 

Living with Cushing's Disease is one of my personal favorites. Its written by a good friend of mine who is also the Co-Founder of Cushingstories.com. She is someone who is amazing at keeping it real and positive. She has had her struggles but has been in remission now for years! Check out her blog https://cushieworld.wordpress.com/

 

Moxie has an amazing site that is chalked full of information!!! She is an amazing lady who will always be there for you to answer questions. Please check out her site at http://www.cushingsmoxie.blogspot.com/

 

Then there is my good friend Nicci who is very real, raw and doesn't hold back what she is thinking or feeling. You should check her out at http://cushiequeen.blogspot.com/

 

I hope now you know a little bit more about my disease and have an understanding of what my family and I have gone through. Each day is amazingly better! As you can see on my blog that I am living and we are having fun! Just thought I would tell you my story!

Bless all of you. Thank you for reading my story. Please feel free to write me anytime. I always answer.  Cushingscountrygirl@gmail.com.

Cushingstories.com Thunderclap Campaign

https://www.thunderclap.it/projects/21819-misunderstood-and-misdiagnosed/embed

Please go support this campaign by Cushingstories.com to increase Cushing's awareness.  Once we get 100 supporters (by February 22, 2015), our campaign will be forwarded to celebrity Thunderclappers to pick causes they care about and tweet to their followers. Its free and easy as just clicking a button. I can see who has followed it so please let me see your smiling face!

Thanks for your help!

Before and After (symptoms)

So today a couple of my Cushie friends asked me to send them my symptoms list that I had when I first was having problems. While rereading it to send to them because its been almost a year now (four months post op though) I noticed that WOW things have changed! I am hoping this will give someone hope! But this is my symptoms and in parenthesis is what it is like now after 4 months post op.

• Inability to lose weight no matter diet or exercise (able to lose weight now)
• Central Obesity (stomach 2 inches smaller) 
• Weight Gain 47 pounds in 6 months 80 pounds in one year (lost 23 pounds)
• Insomnia only sleeping 2-3 hours a night (restful sleep 8 plus hours)
• Buffalo Hump (yep its getting smaller)
• Moon Face (double chin getting smaller and can see cheek bones)
• Hot all the time even in a cold room (now I sleep under the blankets instead of on top)
• Thinning hair especially around my bangs area (new whispies appearing!)
• Red, Flushed Face (no more hot flashes)
• Heart Palpitations almost every night 120s (Heart rate is at normal level 60-80s)
• Blood Pressure on daily basis 160/110 (Now 123/80s)
• Not much of a Libido (Yeah for my husband its back)
• Stretch marks all over stomach and corners of breasts red and thick (starting to fade color)
• Low immune system. Bronchitis 6 times and walking pneumonia in 8 months (bronchitis one time in 4 months)
• Loss of words and work call (less and less but still have short term memory problems)
• Anxiety every night and out the roof (Anxiety only when actually called for)
• Mood Swings. (Husband said those are WAY less :)
• Weakening of Muscles Before Surgery could only lift 10-15lbs (lifting 30-45 pounds now)
• Fatigue just had no git up and go (still tired but it is better and I am doing a lot more)
• Whiskers popping up on chin (same)
• Bruising without even noticing I was bumping into anything (no bruising)
• Thinning skin, hurts to touch sometimes (seems to be toughening up because doesn't hurt as much)
• Major Aches and Pains (minor aches and pains except when hip goes out)
• Very slow healing with cuts or bug bites (faster healing but still slower than normal)
• Concentration is VERY weak (able to start and finish tasks with no problem)
• Depression and don't have a reason why really (feeling much better)

So in 4 months there has been so much change! Amazing because I realized it but didn't realize it as much until I saw my personal symptoms list. There really can be a light at the end of the tunnel with remission. Not everyone will have the same effects. Some more and some less but it does get better! If you are not there yet please feel free to always email me at cushingscountrygirl@gmail.com and lets help you find drs or help or support. I am not a DR by any means but I am willing to help you find support. If you are in remission and would like to share your story please email me also. We are working on a website of cushingstories where all stages of the disease are addressed through personal journeys.

A week from hell? Or was it?

Understanding Cushings by #Novartis

I have had a week of craziness. One of scary AI events to one of victory and fun and happiness. I guess that is a Recovering Cushies life. I have good days and I have bad days. I guess I will start from exactly 7 days ago. Just to give you an idea of my week

Monday-I woke up with my throat killing me for the second day. Made an appt to go see the Dr but that never even came. See when you have a fever, or are in pain, or have a sickness after having pituitary surgery you have to stress dose. Before surgery my tumor would create me to have excess cortisol. After my surgery and now that the tumor is out I am retraining my body to produce its own cortisol therefor I take it in the pill form. When you are sick your body eats up the cortisol or sometimes its hard to even keep it in your body because of vomiting, diarrhea etc...   This was me. I couldn't keep my medicine down. I started to vomit, already had a fever, my throat was killing me, started to get really confused and my hands and arms felt like they weren't working. My husband thankfully was there, gave me my 100 mg emergency Solu-Coref shot and we went into the ER midday. Once at the ER my blood pressure was sky high which is usually abnormal for someone who is going through Adrenal Insufficiency but I am one of those rare ppl who it shoots sky high and then plummets fast. That's how I knew something was wrong besides that I was loosing my thought process and my arm functions. My blood pressure has been normal since surgery but that day it was 194/133 and my heart was racing. Thankfully the ER doctor got ahold of my Endo and he said yes Blood Pressure can go high and to treat her. I had my emergency letter so they gave me another 100mg of Solu-coref, 2 bags of IV fluids, tested me for strept (I was positive), gave me pain meds and then tested my electrolytes and salt levels. Once I was feeling better and stable they let me go home with a prescription of Penicillin.

Tuesday-Woke up still feeling bad. Went by Dr orders and tripled my cortisol intake for the day to be able to keep enough in me since my body still had temp. Took my antibiotics by mouth. Stayed in bed all day. Got up just to go to the bathroom. Fever finally broke that night.

Wednesday- I woke up on the third day and my throat was killing me. Hurt to swallow but forced fluids down. Took my antibiotics and my cortisol as instructed by the Dr. Was not feeling well. Felt overly tired and felt as if I was getting low again. Stress dosed again. Started getting nauseous and then couldn't keep anything down. No fluids, no medicine.....started to once again go into Adrenal Insufficiency by not being able to lift my arms well or keep any meds down. Started to want to just sleep, sleep, sleep. Husband once again gave me shot and took me into the ER. This time they knew I was coming and had everything set up for me. Got another 100mg Solu-coref. Iv bags of fluids, Pain medication for my head from my blood pressure that was once again sky high on the way to the ER and then plummeted by the time I got there. We live 45 minutes from nearest hospital. THIS TIME though they gave me a shot in the rear-end of Penicillin since I had not been able to keep my meds down. I got replacement fluids and was released to go home 5 hours later.

Thurday- Decision day....I woke up and my throat felt better. I still sounded horrible but I could swallow and I felt so much better. I didn't leave my bed much though because I had a big decision to make. Two of my four kids were having a Championships game in Football. Not only was it important to not one BUT Two of my kids but it was the first time they had been to Championships since 2003. This was a big deal to them. I had been to every one of their home games and went to their playoffs and didn't want to miss their championship game. I still didn't feel well enough to even think of going yet but I would really think about it. By Friday, if I felt better then I was going to go. I decided that we would just stay in a hotel that night so I could go to the hotel and rest before and after the game. I didn't want to play with fire but I didn't want to not be there for my kids. Its a fine line. To me I felt like this is something they would always remember though. I knew if I felt better the next day I would be going.

Friday- Game day! I was feeling a lot better. Still not perfect but I decided I was going to be at the game. Told my boys I would see them later that day. We took the 2 hour drive and checked into the hotel. Made some posters, got new rain jackets and even bought a couple new winter clothes for the game. It was sprinkling when we left. Once at the game I kept having friends and family watch out for me. I couldn't scream (didn't have enough of a voice) but I clapped and cheered. The smiles on my boys face was unforgettable. They were excited, pumped up and happy we were there. That night it rained a lot and I knew that me being there probably wasn't the best decision in the world. I wouldn't of asked or even told anyone else to do what I did.....but for me....and my life....it was what I wanted to do. I know this is going to sound dumb to some but I don't want to live my life with regrets. My mother died at 55 years old from cancer and the one thing she said to me was to LIVE, LAUGH, LOVE.....so for ME this is what I was doing. I am proud to say that my boys and their whole awesome Cardinals team WON!!!! It was such a big celebration and to see them jumping up and down screaming was awesome! Even better was when both teams came together and prayed. It was a site to see. I am so glad that I went. I knew I would have to take it easy for the next few days as I was still recovering but it was worth it to see my sons faces on this day in their lives that they will not forget.

My boys so proud of them

Bundled up

They won!

Saturday-Monday... We slept in and decided to stay a couple days at the hotel. It would be a time for shopping, movies, going to Turtle Bay Museum and Toytopia. I am thankful I have the husband that I do. I went out when they went to eat and went to a movie or two in the next few days. The rest of the time I was back at the hotel resting or sleeping as my family went shopping, swam at the hotel, got haircuts, went to the bird house etc.3/4 of the time I was in the hotel resting. I am a lucky gal. I didn't get sick after and I am continuing to get better. I know in the future I will definitely have to remember to watch it when I get sick. I will have to make sure that I rest and recover. I am not saying I would want anyone to do what I did. It was just the right decision for me and my family. I have no regrets for this week. It started off pretty scary and I am really new at this (being only 3.5 months post op) but I am learning along the way. I am also so thankful for all my friends, family and Cushing support who tell me how they feel. Are honest with me and yet not mean. Who help me to learn as I am going also. I want to say thank you for that awesome support.

Now this coming week....Thanksgiving.....