WARNING: this post is LONG and DETAILED. It may be a bit more than some people care to know; however, I know there are some people that want to know the details and this is the easiest way to desimate them. Sooo… if you are interested, read on. If not, feel free to stop reading now. For those of you that have been asking and sharing your concerns, thank you!! It means so much!!
Well, here goes nothing. Right when I think I am seeing the “light at the end of the tunnel”, life is suddenly throwing a dark roadblock in. I am really not trying to be a Debbie Downer here, but I do want to inform those that are concerned of what is going on with me and this often seems to be the best place to do so. Therefore, read on if you’d like.
Most of you know that I have struggled with pain and discomfort with my hip and pelvic region joints and muscles for going on a few years now. I thought I had it figured out and under wraps, had surgery and on the road to “recovery” (with possibility of having to have surgery on my left in the future, but I could deal with that when it comes to it, right?). While dealing with all of this I have had some symptoms that I just associated with the hip issues. There were a few in there that seemed odd but minimal, so I just kind of ignored them, thinking that once my hip issues and healing from surgery were resolved the other symptoms would subside. Hair loss, bruising easily, tiredness/fatigue, to name a few; however, more recently I started developing these “deep” in the skin, reddish/purple in color, painful stretch marks, which just didn’t seem normal and not associated with surgery.
***WARNING: May be graphic and/or too much information for some people***
Here are some of the symptoms that I have:
-Hair loss/thinning (I have extensions in for those of you that don’t know…my hair was breaking off in chunks and has not grown back)
-Stomach/abdominal weight gain/bloated looking
-Moon face (Increased weight around neck/face)
-Buffalo hump (extra weight and hump on upper back)
-Stretch marks (deep, red/purple, painful)
-High blood pressure
-Increased thirst/frequent urination
-High cortisol levels
With the encouragement of my family, I decided to set-up an appointment with my primary care doctor. She ran some tests and blood work, which indicated that I have high cortisol levels (stress hormone produce in the pituitary and adrenal glands in your body). I thought, “oh, great. We know what is wrong. Easy fix.” Not so much. It turns out cortisol levels fluctuate a lot, so I had to do more tests. We did a saliva test, which again produced results of high cortisol. My doctor referred me to an endocrinologist. Luckily I was given a great recommendation to a specialist at the University of Iowa Hospitals and Clinics. My appointment was last week, and I am hopeful. My doctor seems to really know what she is talking about.
When it comes down to it, I have many of the symptoms of either Cushing’s syndrome or Cushing’s disease (I am still trying to clarify between the two because the symptoms seem to be very similar). I guess it depends on what is causing it, which is yet to be determined. This doctor has also detected high levels of another hormone called ACTH, which sends signals from the pituitary gland to the adrenal gland, and my doctor said can be produced in other glands or affect other glands in the body. Basically, my doctor believes there is a tumor (almost always benign…a small percentage of the tumors on glands come back with cancerous results) on a gland somewhere in my body that produces cortisol or ACTH hormone.
Apparently a bunch more tests need to be run to confirm the high hormone levels first, then imaging can be done to determine if and where the tumor may be. If that can be narrowed down, there are different treatment options including but not limited to surgery, radiation, chemotherapy, medication, etc. My doctor seems hopeful for treatment in one way or another. She stated the earlier this is “caught” it is often more treatable and the window of reversibility is shorter (so hopefully it was “caught” soon).
While no one wants to hear of this possible medical condition and diagnosis, I am glad to be getting some explanation of these symptoms and hopefully the right answers and be on the “road to recovery” again…”light at the end of the tunnel”, right?!?! What doesn’t kill you makes you stronger. I am learning this over and over again. I will make it through this. I am just having to dig deeper than ever for that strength, and I am learning to lean on others and have faith in God’s bigger plan for me. Although I may not understand it now, I am sure that God is teaching me lessons that I will be able to reflect on and carry with me throughout my life. One thing is for sure, that if I am ever able to get my health back to “normal”, I will not take it for granted ever again.
As a follow-up to the above information, I am sure you can all assume this is a struggle for me. Like I said glad for answers, but I just don’t like feeling like this. I don’t like feeling like I am not in control. I don’t like not feeling like myself. I don’t like looking in the mirror and feel like I am staring at a complete stranger. I don’t like the feeling of judgment from others. I don’t like the feeling of shallowness because I care what others think.,,especially when it because I care what they think about how I “look”. How shallow is that?!?! I am defining myself by my looks.
Deep down I know my sense of worth is more than than, but I am finding myself being a product of our societal expectations of how we should look, especially as a young female in her mid-late twenties. I am not that right now. Before my hip issues and now this new health condition, I was that. I feel like people look at me and just think “wow, she really let herself go”. Well, that is not the case. I would give anything to resume how active I was. To be in the best shape of my life. To “look” how I am supposed to look. To fit in to societal expectations of how I should look.
Pictures of how I remember looking, “want” to look, societal expectations of “how” I should look.
These are what I call the “good days”.
These are the pictures where I started to notice a difference in my physical appearance. These are the pictures I am embarrassed of. These are the reasons I hate to look in the mirror. Hate to take pictures these days.
I keep telling myself not to think this way. I keep telling myself I will regret not capturing the moments. There is more to life than “looks”. I should not define myself that way. Again, easier said than done. Retrain the brain.
I am learning part of it is out of my control. I have unwanted weight gain in my abdomen area (I look like I am pregnant…I can’t even wear “fitted pants”…it is currently leggings and dresses for me in the meantime). I have “moon face” and a “buffalo hump”. I have bruises and stretch marks, etc. None of it is appealing or “pretty”. I just want to stay home and not show my face in public. It is embarrassing. Again, shallow I know.
I am slowly learning that I need to take care of myself and be more concerned with my overall “health” and not my looks, but it is all easier said than done when we live in such a judgmental society where people just don’t understand or care too sometimes. That is where I need to learn not to care….not to care so much what others think. Time and patience will hopefully allow me to do that. Thank you for letting me vent…
And this is where I leave you with one of my new favorite quotes:
“Be Kind…For Everyone You Meet Is Fighting A Battle You Know Nothing About” –Plato