Right now we are in the waiting game. I got my MRI last week, the radiologist called us into a room to show us on my MRI scan where the tumor in my brain is located. It is on my pituitary pressing on some nerves & shoving them over. This can account for my lack of mental sharpness, & vision problems. When I didn't hear from my doctor last week, I called his office. I found out he was on vacation. Thankfully he got back today. He called, I talked to him about 9am. He told me he was going to call a specialist at the UAB to discuss my cast & set my appt. He said he would call me back with that info. Unfortunately, I haven't heard back from him yet..Bless him, he just doesn't understand he is driving my poor mom crazy having to wait. I'm her child so she thinks I should come first ;) She thinks he should have called me right back. Of course I keep reminding her that I am not his only patient. But of course that makes no difference to a mom.
Since I've been working on this post since last night, I keep having to change some info.. It is now 6pm. The dr did not call me back with my appt today.. I do not have a happy momma over this fact. Bless him he better call tomorrow :) Or she may pay him a visit. Oh I didn't mention he said that the dr there would probably be doing another test,Woohoo (NOT) This one I'm definitely not excited about. It is the test where they have to go in a get a sampling of blood from the pituitary. Catheters are inserted and threaded to the petrosal sinuses. These sinuses lie along the internal aspect of the skull base and drain blood from the pituitary gland. Serum ACTH samples are drawn from the left and right pertrosal sinuses and peripheral vein.
I have decided I'm going to use this blog to inform other about Cushing's but also as a way for me to vent at times, and as a way for me to deal with some of the problems Cushing's has caused, & is causing my family & I. So I'm going to attempt to do a series of .. How Cushing's is affecting my family & I.. I figure it is a way to release some of the different emotions I'm going thru while on this journey.. If you don't want to read my rambles I completely understand. But I beg you to please, pray for my family & I during all of this.. Thank you all!
If while reading this some of it doesn't make any sense you will find out why...
We are glad to finally get a diagnosis of Cushing's Disease. Of course finding out you have a tumor in your brain is not good news to receive. However, it is good to know why all these problems are going on in my body. Of course, it not a good feeling to know there is a tumor in your brain. But, at least after years,& years I have an answer. I have a reason. I have something I can tell to others as to why, why I have to take one day at a time. Why, I hate making plans, well I simply hate making plans because for several years now, I can't make plans. I never know what kind of day I am going to be facing! I may wake up & have a good, well, maybe good isn't the right word, but at least a day I can handle, if I'm blessed I might have a couple of good days. Sadly, they are normally short lived, & followed by many, many bad days. I hate missing out on things I love. I hate having to tell my daughter we can't participate in this event or this get together because I'm in so much pain, or my blood pressure is thru the roof, or my blood sugar is all out of whack, or my heart is racing & fluttering around, or I have one of my many, many migraines or I'm having a day I can't function, a day I can't put the right words together, a day that my brain simply seems to be working against me. A day when I can't pick up anything or hold on to anything without dropping it due to my body shaking. Those days, are hard! They are not only hard for me, they are hard form my family.
I'm not the only one facing this battle. My family is having to face it also. It really bothers me the way it affects my daughter's life, my husband's life, my mom, well all of my family & friends to some extent. My dd & I use to love days & events we could go together just the two of us & have our Mommy/Daughter days. We both had to give that up, since I can no longer drive due to the fact my brain no longer functions right, I can't stay focused, I have not been able to drive now for the past 2 yrs. I'm 40 yrs old, & I had to stop driving at the age of 38. I will admit to you all that it has been hard. There are times I would love to just go jump in our vehicle & go on a girl outing with Kaitlyn, to go see my friends, so we can sit and laugh & talk, to just go for a drive, to go to the Mom Nights Out events, to just go when & where I want to go. But for now that simply is not possible. Due to the last time I drove my daughter, we were both truly being watched over by God, honestly, we are blessed to be here. Because my mind simply does not function right a lot of the time. I forget what I'm doing, I forget where I'm going, I forget... I forget ... I forget. On this day, I forgot I was driving, with my precious child in the seat next to me. I was nervous because I was suppose to be leading a meeting of a group of girls in a Keepers meeting. I had started really struggling with forgetting things, & getting mixed up on things, a problem that was getting worse & worse. So I was nervous. I was so nervous I would say something wrong, so I started praying.. Praying, you might be thinking, that's great! So what's the problem? Well the problem was not the praying, the problem was I was driving &closed my eyes to pray while going down a busy 4 lane. At which I did not think or notice a problem in the least until my sweet, precious daughter starts screaming before we hit the bridge. Okay, whew problem taken care of, right? ummm... NO, because then I was so upset over what almost happened I forgot I was the one driving, again. (duh, since it was just the two of us in the car, even though trust me we would have been better off if she had been driving instead.. Problem was she was only 11 at the time) So what did I do, YES, you got it I started praying again & once again closed my eyes. Thankfully, my screaming child brought me back around.. (I'm a huge believer in prayer, however, you should note DO NOT close your eyes to pray while driving down the road, especially a busy 4 lane.. Unless you are prepared to meet your maker, quickly) Now at this time, we were both really shaken up. And I thank the LORD we made it to the event, it was only with his protection. Sadly we then had to get back in the car to come home a couple of hours later. And my head was killing me. Let's just say this was one very stressful night. We finally made it home, by the grace of God. And needless to say I no longer drive. Especially since my mind function has continued to get a lot worse & WORSE over the past 2 yrs.
I have found that the good thing about typing is that I can go over & over & over what I'm going to post, so I can try to correct the mistakes I make (well at least some of them) How I wish there was a backspace, delete, correction button before I spoke) Online I can type, delete & retype. It takes me so long to fix a post, comment & stuff. But at least I can spend time on it before everyone else sees it. The words that come out of my mouth, are a completely different story all together. My poor family spend many days giving me some of the strangest looks, (I have to take a moment to say, knowing now I have a tumor on my brain & it is not just that I'm going completely CRAZY is somewhat a relief. Because when you have to admit your 83 yr old grandmother's mind & memory is better than your 40 yr old mind.. It is not very comforting.. It was not a comforting thought to wonder what in the world my mind was going to be like as I got even older, when I got my grandmother's age.. it was a scary thought) thankfully my family loves me, & are learning to try to read between the lines of what I'm saying & what I actually meant to say. Because, we never know what is going to come out of my mouth some days. Some days I say the wrong words, I say words that are not even words in place of words I've known forever! Words & sentences come out of my mouth that make no sense at all. It is hard, it is very upsetting for me, I try to brush it off now & laugh & make stupid jokes about all of this.. But there are times when I can't. I'll admit this is a symptom I have to pray a lot about.
It's sad to admit, that while I have all these other serious health problems that Cushing's has caused me, the hardest ones for me to personally deal with are all the ones that are embarrassing, the ones that damage my PRIDE:
One of these problems that fall into the PRIDE category is the fact my mind doesn't function right anymore, on many days. (Thankfully some days are not as bad as other days, Some hours in a day are not as bad.) A lot of days I can't stay focused, I can't talk right on many days & say the wrong words. I can not cook in the kitchen alone anymore.. (that's a whole other post for another day.. let's just say a mind that is not functioning right, losing focus, forgetting what you are doing & cooking DO NOT go hand in hand.. Thank the Lord for crockpots, my husband & take out) Gulp, yes! PRIDE... Lord help me, while I have a tumor on my brain. I'm struggling with that old mean devil rearing his head over my PRIDE.. It has gotten better after finding out there is a cause, there is a reason. When you are use to being the ONE everyone else comes to for help, for answers.. To being the person, who can no longer read a book for pleasure due to what I read today, when I close the book & pick it back up I'm lost, I remember nothing. After many attempts of trying & trying, but continually having to restart the book every time you pick it up, you discover it is quite pointless to keep trying if I'm not going to be able to make it past the first few chapters.. :( And I have always loved to read. I struggle with easy things, things I've known & done for years & years. Watching tv or a movie with my family.. Ha, I watch them, but you could turn around within the next day or two, put the same movie in & it may not register with me that we just watched it.. Hey at least I can watch something over & over & it not bother me.. My husband is constantly saying what are you watching? I'll tell him & he will say we just watched that, Of course I try to argue that I've never seen this movie, & I don't know what he is talking about he must have watched by himself.. But no, my sweet Katie will then say, Momma we just watched that, Of course my reply is well what is it about? What happened? or no don't tell me I'll watch it "again" by myself.. Ugh!!! I'm blessed that my family loves me so much.. Because I have to rely on them a lot.. I mean A LOT!! More about how amazing they are in a post for another day. I will just say I am truly blessed by the Lord, I have a wonderful husband, daughter, mom & a wonderful family all together. I love them all so much.. I wish they didn't have to deal with all of these problems. I am however thankful they are here to help me through each day.
Help me dear Lord to remember,
"Pride goes before destruction, and a haughty spirit before a fall." Proverbs 16:18
Join me next time on my journey with Cushing's, & what it is doing to my body, my mind & my family.. Thank you all for your prayers. Please continue to pray.
-Tina
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