Well after a very long time, many test and doctors, I found a neurosurgeon that we like, & we set up a surgery date last month.. I will be having surgery on June 13th, a day after my 41st birthday.. Our 15th wedding anniversary is the day before my birthday on the 11th. On my birthday I will be having an advance MRI, I have a pre-op appt. with my surgeon, will meet with the anesthesiologist and all that other fun pre-op stuff. It is good to finally know we are headed to getting treatment. I will finally be getting this tumor, that has been wracking havoc on my body for many, many years removed. I pray the surgery will be successful, that the surgeon will be able to remove it all, and that I will have a full recovery and reach remission. You are never considered "cured" with Cushing's, there is always the chance of the tumor coming back, of course, I'm praying that it never does. I pray it is all removed and never returns.
I'm doing surprisingly (to most everyone else) really well with my upcoming surgery. Is it scary, well of course,sometimes a little, but I don't sit and focus on it, I'm not sitting and stressing, I'm not worrying, because I know God is in control, no worrying or anything I do will change any of it, it is all in His hands, not mine. So I just pray, and leave it with Him. Like I've said before, a few years ago, I do not believe I would have handled it so well. Well, honestly, I know I would not have handled it well at all. I use to be an extreme worrier, then I'd worry about worrying so much... LOL In the beginning I have to admit, I was really, really frustrated that I've obviously had this tumor & Cushing's Disease for many, many years. My health started declining in my teen years. I was put on blood pressure medicine at the age of 16, after me passing out in school because it went so high, and being rushed to the ER (and at that time I was not overweight, that came later) Some test were done over the years, because all the doctors kept saying "I was way to young to have high blood pressure" but the cause was never found. After that came my heart skipping beats, migraines, my immune system was awful (I'd catch ever cold in a 20 mile radius, and what most people would get over in a few days took my body forever to get well.. and we had no idea why) I gained a lot of weight. got the lovely "buffalo hump" asked a doctor about it once in my early 20's (and I only asked once, because he told me it was just fat, why yes it is but guess what ... that hump, come to find out, is a MAJOR sign o Cushing's disease, a disease that I never heard of, a disease I was never tested for, until I asked last Sept to be tested for after reading an article about it online. So yes, I diagnosed myself. I told my doctor I though he needed to check me for Cushing's. He agreed to check me, but even agreeing he said, "Don't worry it is very rare, you will be fine" Poor man order some of the test a couple of times, not to my knowledge (until later) because he said he just didn't want to believe I actually had Cushing's .. Well I actually didn't want Cushing's either, but I did want to know what was wrong with me, I knew something wasn't right... Maybe I should have been a doctor.. Oh wait, I had to quit college due to my declining health, and severe high blood pressure.(and the symptoms, that I didn't even know were symptoms of this rare disease until I read that article, and discovered all these symptoms & health problems that have piled on year after year were all due to it..It took this disease taking away my short term memory, my ability to drive,my ability to cook without supervision, (because I'll go to the restroom or answer the phone & never return to the kitchen until something is on fire, because I totally forgot I was cooking). It has taken away my ability to sit and read a book (which I love to do, but when you can't remember what you read, and every time you pick up the book you have to restart it over and over, it takes all the enjoyment out of reading I can, howeve,r watch a movie, forget it and watch it again like brand new a couple of days later & argue with my husband that I've never seen this movie before (but he continues to insist that I did)..hmmm.The list goes on & on. My hubby says, if I get mad at him it's all good, because in a few minutes I'm going to forget why I was mad, &even forget that I am mad to begin with, so that is a plus for him.. LOL).. Anyway, enough of thinking about the frustrations, because like I said, all in God's timing.. He knew I would not have been able to handle finding out I have a brain tumor, emotionally before. It would have drove me insane. I know I would have been convince I was dying. I'll never forget the 1st time I found a lump in my breast, I cried & cried my grandmother had breast cancer, & I just knew I did too. I called the doctor insisted on an appt. that day, then insisted I get sent for a mammogram that day.. you know how normally you do not learn anything when you go for a mammogram, well that wasn't the case with me.. They had the dr to come read my results and talk to me while I was there, I was scared to death. Thank the Lord it was, and all the many times since then have been fluid filled cyst. He drained it that day, and put my mind at ease, God bless them all for getting me through that day, I was a basket case. Imagine if I would have found out back them that I had a brain tumor, I probably would have died due to sheer terror.. But I have grown A LOT spiritually since then, with lots, and lots of pray and Bible studying. I finally discovered what "Fear ends where FAITH begins" means. I'll admit I use to hear that or see that and think "WHATEVER, I have FAITH, but I'm still terrified" Am I saying I'm not ever scared, no, I'm not saying that. What I am saying is I'm not paralyzed by fear, anymore. I don't sit and focus on the fear, the what ifs & all that. I now realize, no amount of worrying will ever change any of this, well other than make me worse from making myself sicker.. I am not in control, and no amount of worrying will change that. God is in control, whatever, his will is for me & my life with this tumor & surgery, is HIS will, that is not something I can control. I can pray, I can search and pray to find the best surgeon, I can do whatever I can to try to help my health, instead of working against it.
So I did, in Feb. I started following the Trim Healthy Mama eating plan. I have not had any soda, sugar, white flour, white potatoes, white rice. I have had NO soda I repeat, not even diet soda.. And I was a girl who LOVED her coca-cola. I also have not had any Sweet Tea, and I'm girl who lives in the south. That stuff starts coursing through our veins at a young age.. LOL ;) I have learned to change my eating habits, drinking water, water and more water.. Thank the Lord above for Stevia (which does not affect my blood sugar at all) you can make some pretty amazing things with that stuff. I have discovered a whole new way of eating.. My grandmother of course does not understand this whole no sugar, no white bread thing, she thinks I obviously am becoming malnourished. Even though we voth have diabetes (which thanks to eating this way, I was able to come off one of my meds & now have it under control..) But bless her she wants no part of this now sugar, thing ;) Even though she admitted "my skinny chocolate" (which let me tell you once you get the ingredient amounts to your taste liking is some amazing stuff.. Thank you Pearl & Serene for writing "Trim Healthy Mama" and coming up with those amazing recipes. Who knew you could fix wonderful chocolate with no sugar.. Eat is daily & still lose weight & lower your blood sugar levels.. Like I said, some amazing stuff) Since starting THM in Feb. I started knowing I was not going to lose a ton of weight, until old "Edgar" (my nasty brain tumor we named) was removed.. He loves causing trouble.. And one of his favorite activities is accumulating all the fat he possible can find to my abdomen. Nasty, mean little bugger.. I'll be glad when he gets evicted.. He is a very unwelcomed guest. But I have lost some weight, of course he is fighting tooth and nail to keep it in my abdomen. But my face, arms, legs, and rear have slimmed up some. Praying after surgery, all this unwelcomed padding around the middle leaves.. With God, surgery and THM I pray it leaves, and never comes back.. It's no fun looking in the mirror and becoming someone you do not recognize anymore.. But that is all going to change..However I did start THM praying it would help my diabetes, and it has. in Feb. when I had my lab work done my A1C was 8.7 (which calculates to my blood sugar averaging over a 3 month period of 220+) When I had my blood work checked in May, my A1C was 5.8, which is AWESOME (that is an avg of 120, much much better) So I was able to stop one of my blood sugar medicines.... YEAH!! for THM..
I have a very, very long road ahead after surgery. As the doctor said, I've had this for many, many years according to all the damage it has done to my health & body. She said it is not like many surgeries, it's not a surgery where she simply goes in removes the tumor & boom I'll be better. (oh how I wish that was the case, because the reality, she told me isn't any where near as fun sounding) All this didn't happen to my body overnight, and recovering will not either.. It takes about a year or so for your body to recovery from much of the damage, some things can take even longer. I was also told about a week after surgery I will feel WORSE, than I do now.. (ummm... Say what?!?! WORSE!?! that doesn't sound right..) According to the doctor & others that I've talked to, that is the reality I will be facing.. Right now my body is extremely hopped up on Cortisol , I mean HUGE levels. Levels no where near normal. I mean according to doctors we are talking imagine being drugged up on extremely high doses of steroids.. Then imagine it being taken away, all at once.. Fun sounding? Well guess what, from what I've been told, it is anything but fun.. Of course to know she prayerfully got all the tumor, we want my blood levels of cortisol to completely bottom out after surgery (which they will take blood the next morning to check.. We want zip, nada.. , but along with that nada , after a while my body is going to revolt... She said she would have to give me "normal" doses and taper them until my pituitary decides to wake up (which we pray it wakes up there is always the chance with this surgery it will not, then I will have to stay on meds, because where my tumor is secreting these high levels, your pituitary normally controls how much cortisol is released, it is suppose to go up and down throughout the day. It increases with stress, sickness & such. Decrease so you can rest and sleep (which I pray I will once again be able to sleep.. For a long time now I'm clocking 1-2 hours a night tops, and if I'm able to nap during the day, which sometimes I can it is only 1-2 hours also.. Let me tell you that cortisol is all that is keeping me going, otherwise I'd fall over,high levels of it causes your body to always be in that "fight or flight" mode.. So it doesn't allow my body to relax & sleep. Under normal circumstances, someone would completely crash, but that same cortisol keeps me from completely crashing.. It keeps my body wired.. Very tired, and feeling extremely bad, all the time.. But wired.. imagine if when you take decadron if it affects you and keeps you up wired and shaky, well that is what Cushing's does to ppl all the time..) So no sleep along with all the other things it causes health wise, is why I haven't been able to do so much of what I would love to do now for a long time.
Before discovering what is wrong with me, through the years, I've had to miss a lot. I have to miss worship services, I use to have to miss school a lot, use to have to miss work a lot, I 've had to cancel plans with family & friends more times than I can count, all due to my health. The sad thing is when something is wrong with you and you go to all these specialist & no one puts all the symptoms together to realize hey maybe something is causing all of this. When you are sick all the time, but no one can "see" what is wrong with you, when you can't even explain, WHY?!? yourself.. You can't explain to others why you don't feel like holding your head up, why you are in constant pain or why you just feel awful all the time. All you know is you can't sleep, you hurt all over, migraines are the DEVIL, your blood pressure is through the roof,you are shaky, weak run into things, drop everything, & the list continues. But ppl do not understand (they can't see it, they don't feel it), over the years you lose friends, because they think you just don't want to do stuff with them, since you are always having to cancel. You are called a "Hypochondriac", behind your back, which gets back to you (and if you are me, you confront that person with well please since "nothing" is wrong with me maybe you would like to pay all my, medical & medicine bills & I'll send you a copy of my medical records while you are sifting through all those bills. Maybe you can tell me why all this stuff is wrong with me. Thanks! Then finally you have an answer.. CUSHING'S. Brain TUMOR.. Of course part of you wants to take all those test results and the MRI of the tumor & say "well, look there I guess you were right! It is ALL in my HEAD!!" but instead I take a deep breath & pray. Because that would not be very nice, but for the record (some days I still want to do it).. If someone you know is sick, & misses school, work, outings with you, cancels plans... Please do not assume, because you can not physically see what is wrong with them, that nothing is wrong with them. Do not assume it is, "all in there head" trust me they hear it, or see it enough in the faces of others,sometimes even some doctor make them feel like well maybe I am just "crazy"... So they do not need their friends and families doubting them, doubting that there is something wrong with them.. Because if they are like me, they already feel bad enough for missing so much.. Okay anyway.. I guess I felt like writing a book.. Took forever, due to lovely old "Edgar" but if you made it to the end of this God Bless You!! Please continue to pray, pray that all goes well with my surgery, pray for God to guide the hands of all the medical staff that will be working on me, pray for my family (because waiting all those hours during surgery is going to be torture for them) Please pray for me, all of us.. If I worry at all , it isn't for me, it is for my family.. Because I hate what this is doing to them :( I feel bad for all the worrying they are going through.) I know God's got this, whatever His will may be.. Thank you all for your continued prayers & support.. Much love to you all <3 nbsp="" p="">
