Posted by: Rachel on: January 26, 2010
“I sought the Lord and he answered me, and delivered me from all of my fears.” Psalm 34:4
Well, I have a couple of good things to share.
Yesterday, I received word via email of a miracle of epic proportions in my church brother’s life (and fellow Cushings patient). He went in for surgery to remove the cancerous tumors that were attached to his kidney, liver and adrenal gland (which was causing his Cushings). The doctors went in thinking they’d have to remove a kidney, an adrenal gland and part of Shannon’s liver, but when they got in there, guess what? They only had to remove the adrenal gland and the tumor attached to it.
I don’t know about you, but I call that great news.
I also just got off the phone with my Mom. Remember my initial superhero, Dr. Dahir? My Mom went for her annual checkup for her thyroid today and Dr. Dahir inquired about my Mom and her family, got the update, etc. Dr. Dahir is exceptionally cool like that. Anyway, she asked about me and how my health was, and Mom told her that I was having issues again. The symptoms, my concerns about my financial situation and insurance, etc. How we were worried that even if I eventually got health insurance with my job that the pre-existing condition stuff would get in the way of me receiving treatment.
Well, Dr. Dahir poo-poohed that. For starters, Vanderbilt (Go Dores!) is a teaching hospital and has funds set aside for people like me. Plus, I’m already a Vanderbilt patient and because of my prior treatment for this disease at Vanderbilt that is now obviously undergoing a recurrence, I will be treated at Vanderbilt just the same as if I still had health insurance. There are programs for people like me. My “special” status and all the freaky things that happened to me doesn’t hurt, either.
I joked last year that I was a Vanderbilt VIP.
Also, Dr. Dahir told my Mom about a world-renowned physician for the treatment of Cushings that is one of her colleagues. And that if worse comes to worse, I can be treated in Charlottesville, VA by this doctor and that Dr. Dahir will make the phone call.
I’m telling you – she’s an angel.
I say all of this, and reference this particular scripture in the title of this particular blog because of this. Yesterday, I was returning to work after dropping off my 24-hour urine-free cortisol sample at Vanderbilt to see what we’ve got going on. I spoke in detail about my financial situation with some understanding and knowledgable patient representatives who have pointed me in the right direction for aid that I will need.
As I was walking to the elevator I started thinking about Shannon and how I envied him for his faith. That I missed having that kind of faith and that I wanted it back. I thanked God for the miracle that he had bestowed upon Shannon, and asked him for faith. I’ve got to get it back. Get back on that proverbial horse.
It’s hard and I’ve fallen upon dark times, but I know I can get back to where I need to be. I HAVE to get back to where I once was. All of this stressing out about things I can’t control is going to be the death of me.
I’ve got to unleash control of this entire situation. God had it last year, he’s got it this year.
News about Dr. Dahir and my options just a day after I asked him to take control of this is an obvious answer.
He’s got this. I’ve just got to trust him.
So, here I go. I’m jumping off the edge. God’s got this. God’s got this. God’s got this.
So, yes. People may let you down horribly. They may break your heart, or they may prove to not be the people you thought they were. I know that first hand, especially with recent events in my life. Jobs will come and go, people will live and die. You’ll have moments of laughter and you’ll have moments of joy. It’s life. C’est la vie.
But God’s got it all, which means he has me. I just have remain focused and remember that. I’m about to go through some incredibly tough times, but it’s nothing I can’t handle with his help.
You know?
Posted by: Rachel on: January 19, 2010
I’ve noticed for a while now that I’ve had a resurgence of a few symptoms. In the past few weeks, it’s become progressively worse.
I have new wounds on my arms and my stomach that have appeared out of nowhere and won’t heal. The deep pigmentation is back, too, when the wounds do heal, so it’s a sure sign of too much ACTH in my body. (All together now – Heellloooo, Earl!). The headaches are back, the nonstop periods are back, the mood swings are back. It’s so very frustrating.
This time, though, I’m completely frightened because I have no health insurance. That may make this next go round an automatic death penalty since health care won’t come as easily to me now. Sucks, don’t it? I mean, yes, I can go get treated at Vanderbilt, no problem. But the last time I looked at my benefits from my old job, my first round of treatment cost me a little over $100,000 in total. Of course, since I had insurance at the time, it only cost me $2,000. Well, $4,000 is what I ended up paying to Vanderbilt. There’s a big difference, though, in $4,000 and $100,000.
I’m trying not to stress out because that doesn’t help matters, but it’s easier said than done. I live in a decent country, yes, and I’m more privileged than most, especially in light of certain events, but it’s not very easy to obtain healthcare here. I do have a job, but without benefits now. But who can blame most employers – benefits are expensive.
When I do qualify for benefits, though, I will not be able to be treated for at least a year, due to that whole pre-existing condition thing that Mr. Big Insurance Company loves to use.
I can’t get Medicare because I’m not fully disabled.
COBRA from my last job is completely unaffordable. COBRA is pretty much a joke.
So basically, I’m screwed.
Add that on top of all of my fears about putting my family and friends through this again, and I’m on an emotional tailspin right now.
Last time I lost a lot of friends over this disease. Even the ones that tried to understand ended up not being able to deal and pushed me away eventually. I’m afraid that the ones that did survive the first round won’t be able to handle me on this second one. I’m afraid that they’re all going to get tired of me and drop me like a hot potato. I don’t want to burden anyone with my troubles, but then people get mad because I hold everything in and don’t tell them what’s going on. It’s one of those “damned if I do, damned if I don’t” situations.
I don’t have a church family right now. I’ve stopped going. I don’t have a worshipful heart at all and I’m finding it really hard to gain firm footing again in the faith department. I did try to go a couple of times, but all I ever felt was sad and frustrated that I couldn’t get my faith back. I felt like a faker, or a poser. So why should I even bother? I don’t want to put on a happy face and pretend to be the best Christian and so full of faith when I’m anything but. Maybe it’s just an excuse. Who knows.
My immediate family tried to understand the last time and they were there for me majorly. My extended family, however, left a lot to be desired. Well, the bulk of them did anyway. Most people didn’t even care if I was sick or not. I did have a few people crawl out of the woodwork and support me. Several people that I thought would be there and support me never even called me or came to check on me when I was recovering. But others surprised me with their support. What does remain of my close knit family circle will probably fall to the wayside after this is over.
But can I blame them? Probably not. Who actually wants to deal with someone like me? Not many people. I’ve already been thorougly disappointed in people this year, and it’s only the beginning. People that I thought would be awesome people have already proven otherwise.
I’m jaded already and it’s not even February.
I feel so hopeless and lost and lonely.
I’m just ready for all of this to go away.
2010 is starting out with quite a bang.
Posted by: Rachel on: December 7, 2009
So, my Dad phoned me last weekend to let me know that our pastor at church spoke about another member of our congregation currently suffering from Cushings. She revealed that another church member (me, though she kept me anonymous during the sermon) also was fighting Cushings. Dad went up and spoke to the man after church, introducing himself as my father. When my Dad called me, he told me I should introduce myself to him at church the next weekend because his attitude would really inspire me.
It did. I had my friend Matt introduce me to Shannon and he is an extraordinary man. It turns out that he has adrenal Cushings but along with the Cushings, he also is battling cancer, which doctors have deemed terminal. With news like that, you’d think someone would be devastated, but Shannon is anything but devastated. We had a brief but very intense talk after the Christmas program and it truly was inspiring. He’s going through so much and yet his faith is so firmly in place.
I remember when I felt like that. It’s kind of funny (in that ironic way, not funny ha-ha) that I was so peaceful when I was in the throes of my Cushings but faltered when I lost my job. Why I think God can handle brain surgery but can’t handle unemployment is beyond me. Just call me human, I suppose.
Anyway, it really was great to speak with Shannon and have someone in my very own church that knows what this blasted disease feels like. So many people can try to understand and have patience, but they don’t actually know what it feels like. They can’t. But when I say to Shannon just how bad my hips and legs hurt and how sometimes I don’t even want to get out of bed, he truly understands. When my head hurts or my stomach is upset, or I’m depressed because it’s throwing me for a loop or I’m just too exhausted to even stay awake while sitting, he gets it.
I kind of figured that God was going to use this experience in my life to bless someone else’s life. I thought maybe he’d use it five, ten, fifteen years down the road. I had no idea that less than a year after my first brain surgery he’d use my experience to help someone else in my very own church!
To make things even smaller and more closely related, we share the same doctor…Dr. Lakhani at Vanderbilt. We both squealed in excitement (literally!) when we discovered that little factoid. We both adore him and I told Shannon and his partner about how they tried to take Dr. Lakhani away from me and I threw a hissy fit. I love him so much and he’s one of the best doctors I have ever had or will ever have. So it’s amazing that he’s treating two people in the same church for a rare disease that doctors are still trying to figure out. Pretty cool, eh? Again, in that ironic way, not that totally wicked way.
My COBRA should be set in stone after next payday so I will be visiting Dr. Lakhani again soon to do the next 24-hour UFC and check in on my lovely pituitary gland. The slow-healing wounds are back, as well as the non-stop periods. Still losing a bit of weight (I’ve lost another 5 pounds, so I’m holding tight at 33 pounds total since my surgery almost a year ago). Other than that, I don’t really have any other news to report. I’m really hoping that this sucker will hurry up and misbehave so I can have the second surgery while I’m still covered by COBRA. Is it odd to wish for brain surgery?
That’s it for now.
Posted by: Rachel on: October 2, 2009
I debated on whether or not to post publicly about this or not, but I don’t think I can keep quiet much longer. Besides, this is my blog on which I air my frustrations, so if you don’t want to read it, I guess just…don’t.
The recovery from this disease is ridiculously hard, but it isn’t the worst thing that happens. One of the hardest things I’ve found out in the past year of my life is who my true friends are. Some of them have been better at hiding their true character from me for a while, but in the past month I’ve been able to step away and re-evaluate. The results have kind of gutted me.
When I first found out I had the disease, the support was overwhelming. I just knew for sure I was going to be able to make it through with no problem because of the support that I had and how many people loved me. It’s been a year since my diagnosis now and man alive do things look a whole lot clearer on the other side.
People that claimed they would be friends forever are anything but. Folks (church, job, close friends, acquaintances, family) that promised to be there and pledged their support have disappointed me beyond belief. Some old friends that I’ve cut out didn’t understand my condition even though they claimed to love me and talked crap about me when I didn’t feel well and couldn’t plaster a smile on my face all of the time, even though I tried. People that I thought would be there forever, and upon whom I bestowed a lot of trust, have sorely disappointed me, especially in the past month or so.
I wonder how many friends I will lose to this disease. How many jobs I won’t get because of it. How many opportunities may pass me by because of it. I know what the wise people will say. If they’re not here for you now, then they weren’t friends in the first place. You can always get another job. Maybe those weren’t the right opportunities. I hear you. I do.
But I’m still mad. I’m still frustrated. And I hope those of you that read this will be able to know exactly what I mean. You should know if you’ve been a true friend, or a fair weather friend, or not even a friend at all. Some of you I’m really disgusted with right now. Maybe I’ll speak to you again, but the chances of that are looking pretty slim.
I know this sounds hateful, but I can’t hold it back any longer. To those of you (and you KNOW who you are) who have continued to support me and continued to encourage me and love me despite all of this, thank you. I love you and I hope I can repay you for all that you have done for me and all the love you have given to me. I hope that I can be as good of a friend to you as you have been to me. Rest assured that it’s not you of whom I speak.
But if you’re reading this and have any doubt at all in your mind where you stand, then you have your answer.
Posted by: Rachel on: September 29, 2009
It’s been a long time since I posted anything, I know, but things have been more than a little bit bumpy these days. I guess the biggest news is that I lost my job. I’ll go with the safe, politically correct and lawsuit-free answer and say that I’m just thankful I had the job this long. I won’t say more than that because legally I can’t, but I know it will work out for the best in the long run.
I’ve also moved, which is working out quite nicely. It’s just me and my cat, Fin, and I get to hang out with him all day long (he’s snuggling beside me as I write this) and cook massive meals for my friends. I like it a lot. I didn’t enjoy the upheaval of losing my job before I moved, but hey. C’est la vie, right?
The good news is that I’ve already interviewed a couple of places and things are very promising. Plus, I get COBRA from my former employer for several months, so I won’t have to worry about all the medical drama-rama that is rearing its ugly head again.
Yes, you read that right. I just found out via a message from my doctor that I am to stop the prednisone. Yay, yay, yay for now, but I have a gut feeling that all is not well.
My symptoms started coming back a couple of months ago, so I talked to my doctor about it. The nonstop periods are back again and so is the hair growth on my face and arms. The migraines are back as well. I’m losing hair, too, in clumps every morning. I haven’t started gaining weight, but I’ve stopped losing. The last thing to happen to me was the weight gain, so I’m just kind of sitting tight and waiting for me to start looking like I ate myself for dinner again.
My doctor has promised me that it won’t go that far again. Now that they know for certain that I have Cushings, they know what the symptoms are and can quickly rule out any other cause. I had a cortisol stimulation test this morning at Vanderbilt. I stopped taking the Prednisone over a month ago, preparing to have this test the week after my birthday. But seeing as I was let go from my job two days before my birthday, that didn’t exactly happen, losing my benefits and all. So I had to push it back almost a month but finally took it this morning.
For anyone that’s curious, they take a blood sample to test my blood cortisol levels. Then they inject me with synthetic ACTH, which is the chemical by pituitary gland secretes that stimulates my adrenal glands to produce cortisol. I wait patiently and listen to my iPod and read a book for about 45 minutes or so, before they come back in and take another sample of my blood to see how my adrenal glands reacted to the ACTH. If they reacted normally and secreted cortisol, that means that I can stop taking my prednisone. If they don’t, it means I’m still adrenal insufficient and have to stay on my meds.
The other reason for taking this test was to make sure my adrenal glands are functioning normally. The tumor can’t possibly be back if I’m still adrenal insufficient. I’m obviously no longer adrenal insufficient, so let’s strap ourselves in for yet another bumpy ride.
I go back in four weeks for another urine free cortisol test. It was “normal” when I took it four weeks ago, but my cortisol HAD doubled from my first visit post-surgery to the date of that appointment. If it has increased even more since then, I’ll be doing urine-free cortisol tests (i.e.: pee in a really big jug all day long) on a regular basis until they can catch my first irregular reading.
My doctor also told me last visit that if a recurrence of Cushings is going to happen post-surgery, it will happen within the first 18 month window. I’m 9 months post-op, so guess what that means? I’m a prime target.
I knew all of this when I went in, but I’m just ready to get the sucker pulled out of my head so I can move on with my life.
Anyway. That’s it for now. I’ll keep everyone updated. Sorry for the lack of updates. I haven’t been my usual peppy self and haven’t much felt like writing, but I’m trying to hop back on the horse and go at it again.
Posted by: Rachel on: August 5, 2009
My apologies for the lack of updates. I’ve had perhaps one of the most emotionally upheaving and stressful months of my life. I suppose it’s all working out for the best, but man alive.
I guess the biggest thing that happened is that my grandmother died unexpectedly. And only a month to the day after I posted my last blog. I’m glad that we shared the kind of relationship where she would call me sporadically just to say hello and cheer me up. I’m glad I have last memories of her but man do they make me sad. She was only 67 years old and she had a cold. She wasn’t supposed to die yet. I’ve been having a really tough time but I’ve been trying to keep it together for my family…my Mom especially. Plus, I’m sure most people don’t want to hear me constantly talk about it because they don’t know what to do to help, so I’ve just been sticking to myself.
Which has caused a lot of problems in and of itself. People just don’t know what to do with me anymore. Honestly, most of the time I don’t even know what to do with myself. If I open up about how much I hurt all of the time, people aren’t going to talk to me because then I’m a complainer and a whiner. If I keep quiet and stick to myself so I don’t complain all of the time, I’m a loner in a bad mood. I can’t really win for losing right now. The doctors don’t tell you that after surgery, most of the people you love will run screaming for the hills, too.
I know that’s not true, not completely. I know the people that count are still here, sticking it through to the end with me and I appreciate it more than any of them will ever know.
Just a lot of upheaval in the friend department right now on top of all of the other upheaval and it’s just making me nuts pretty much.
It has instilled a big fear in me, though. That Iwill lose all of my friends due to this disease. That people are just going to give up on me. I hate feeling that way. If you are reading this and are one of my close friends, please don’t give up on me. I’m not even halfway out of the woods yet and I’ve still got a long road and I need you guys. I won’t always be in the best mood and laughing. I try, I really do, but I just can’t always be that person. I won’t always be feeling 100% and most of the time, I won’t be able to do everything I want to do. I may have to take a lot of naps; I may walk a little slower. I may get sick more often than not. It’s all part of my recovery and I hope you all know that I am trying my hardest to feel better. But I hope you all also know how much I’m sheltering you all from how I really feel most of the time. For those of you that do understand and are patient with me, thank you. It means the world. It really does.
I guess the other thing that I really need to ask for patience with is the grief from my grandmother’s death. I’m really sad, guys, and I haven’t been this way in a long, long, long time. I’m not quite sure how to deal with it. I know I’m not the first person to lose someone close to me and I know I won’t be the last. I know that death is a part of life. And unfortunately, this isn’t the first death of someone close to me that I’ve experienced. So I know the motions, I know what all I have to go through…but yet, somehow this one seems so much tougher than the rest. I hate being sad and mopey but I really can’t help it right now. So please just bear with me for a little bit. That’s all I ask.
I go back to the doctor in just a couple of weeks. Two weeks from tomorrow actually. I think on Thursday I’m going in for pre-appointment blood work. I’m having a few issues again…hair growth, mood swings, tiredness, soreness, migraines and period problems. Weight is still holding steady (I’m not gaining again) but that could change. I have no idea what to think. I’m trying not to think anything until the 19th when I talk to Dr. Lakhani and discuss everything with him in detail. So we’ll see what happens.
The month ended on an upswing, though. I did get to go on vacation to New York City and see one of my favorite places in the world with some of my favorite people in the world. Though I wasn’t feeling 100% the entire time, it was still nice being there and it was a good end to a really hard month.
Posted by: Rachel on: June 15, 2009
This is a little bit of a “sniffling” emotional blog, but I can’t help it. I’m just so very blessed to have my friends and family in my life and I just feel the need to get it all out. So here it goes.
A friend of mine from church died suddenly over the weekend and while I’m grieving his passing along with the rest of my church family, I’m also blessed. Blessed to have known such a warm, kind-hearted, Christian man. Blessed to have called him a friend. And just blessed to know him. His purpose was done and God called him home. I know he’s happy and rejoicing right now and I know we will all feel grief for some time. But I know that we are all blessed by knowing that Troy is happy right now.
I’m blessed to have such an amazing network of friends. Friends from other states, from other countries. I just can’t even begin to express the love I have for everyone in my life. I can’t put it into words. Some people are those I haven’t seen in years (Phil, Naho) and others I saw just a few minutes ago (Catherine) or a few hours ago (Heather). Some I have never met in person and some I am extremely attached to, no matter how far away we are from one another (Kristina). Some I met through work associations, some I met through church, some I’ve kept for years and years and have no intention of ever letting go (April). I can’t name all of you, I know, or I’ll be here forever. But just know that I really do love all of you – immensely – and I’m so glad that I know each and every one of you.
My grandmother made me smile today. Just hearing her voice on the phone made me want to cry. I can’t wait to see them this weekend, as well as the rest of my family in Ohio. I am so blessed to still have them in my life and to still have both of my parents, who love me and support me so very much. I’m blessed to have all of my nieces and nephews (even those that are not blood-related but I still love as my own). I am blessed to have such a good job with great benefits.
I’m just blessed. Blessed beyond all sense of earthly reason. And I just had to put it out there. I love you all dearly.
Posted by: Rachel on: June 8, 2009
I went to see Dr. Lakhani at Vanderbilt Pituitary Clinic last Thursday and had yet another interesting turn of events.
First, let me say that my frustration in my last post was not with my immediate endocrinology and neurosurgery team. They have been nothing but supportive and attentive during my recovery. I re-read my last post and realized that it sounded as if I was frustrated with everyone at Vanderbilt, when in all actuality, it’s the ER department that had me so worked up. In any event, Dr. Lakhani, Dr. Allen, Dr. Utz and their team of nurses have been nothing but helpful, including my favorite, Larry. He’s a lifesaver.
I went to see Dr. Lakhani on Thursday afternoon because of all of my issues. He hasn’t seen me since my post-op appointment in February, as all of my other crappy issues were treated by other specialists at Vanderbilt. So it was interesting seeing him again and catching up. It was also easy to remember why I like him so much. I really feel like he understands me and my frustration with everything. He is super honest and frank, and doesn’t give me false hope, but he’s also encouraging. I really, truly like him and appreciate him.
We went over everything that has been happening to me and he reviewed my records and I am indeed still adrenal insufficient. I asked about increasing my steroid, and he was hesitant to let me do that. They want my pituitary gland to work again and the only way to force it to work is to try and shock it into action. It’s a little on the lazy side, as Earl did most of the work for it for so long. It’s kind of just hanging out in my head with a dumb look on its proverbial pituitary face, wiping drool off its mouth or something. Or maybe it’s on permanent vacation on some beach in the Caribbean sipping on Mai Tais. In any event, it’s not working. If I stay on a higher dose of steroids, it will never work on its own.
Soooo…I’m supposed to feel this way, at least for a while. This is the “hard part” we discussed in detail pre-surgery. He said that in a sick, twisted way they’re actually kind of glad I’m feeling so crappy, as it lets them know that they did indeed remove all of the tumor. He in no way wants me to feel crappy, but it at least lets them know that the surgery was, and continues to be, successful. I don’t have the energy to do backflips, so I’ll just type out a big, rowdy “YAHOO!!!!!” Not really. I’m still frustrated, but I understand.
He suggested that I try 7.5 mg of Prednisone rather than 5 mg just to see how I feel. Hopefully it will at least get me out of this funk and power me through so that I can try and go back on my maintenance dose. He also suggested that I become so familiar with the signs that I self-medicate. When I know I need more steroid, I take more steroid. He trusts me to know what my body needs. Of course, I need to let him know when I up my dosage, but he said I don’t need to call him first to clear it. So that’s nice, at least.
We also discussed these weird kidney stones. This is the kicker of the entire visit, actually. Some Cushings patients are more prone to kidney stones than others. Guess which team I’m on. Woot woot. He asked a weird question which stunned both me and my mother. “You don’t drink tea, do you?”
We laughed. Umm. 1) I’m Southern. 2) I’m of English ancestry and want to return to my ancestral homeland at some point in the very near future. 3) I REALLY like tea and have liked tea since I was a little girl. In other words, do I drink tea? YES!
GAH! He said, in a lot of big medical terms that I do not know how to spell, that I cannot process the chemical that is in tea. So instead of this chemical making its way through my digestive system and out in “easier” ways (Hello, bladder, how are you?) instead it oxidizes into my blood stream, which is filtered by my kidneys. Since I can’t quite process this thing, it builds up in my kidneys and VOILA! I throw a kidney stone.
Interesting, eh? So I am now on a “NO TEA!” diet. WHAT? You don’t understand. I drink a cup of tea in the afternoon (my brain has a fit if I do not) and I usually drink a cup of hot tea before I go to bed while I’m reading. It’s kind of my “thing.” So this little demand threw me into a tizzy.
No tea?! I can’t move to England not drink tea! What kind of crap is that? I told him that, too, and he said they’ll kick me out and ship me back to Tennessee. No! No! No! No! So I asked what I can do to not totally eliminate tea from my life (insert crocodile tears here, along with the dramatic and Oscar-worthy “Whhhhhyyyyyyyy?!”). He said I can try to eat calcium with my tea, but not on a regular basis. If I simply MUST drink tea, then I need to have some calcium with it. Cheese and tea don’t really go together (Yuck) so I wracked my brain for a solution.
I quickly decided “Wait! Clotted cream has calcium doesn’t it?” “Ummm…yes…I think so.” “Sooooo, if I want a cup of tea, I can eat a scone with jam and clotted cream. That will take care of that problem.” “Do you want to gain all of your weight back?” “Ummm…” “Is tea REALLY that important to you?”
Damn it to Hell.
My roommate is threatening to hide the teapot and my Twinings collection in the kitchen cupboard. A co-worker busted me on Friday afternoon drinking a cup of tea (but I made sure to put lots and lots of WHOLE milk in it!).
It’s like a tea moratorium around here. At least I have Starbucks.
Posted by: Rachel on: June 1, 2009
Perhaps one of the most frustrating things about this disease is having to “self-diagnose.” I know my doctors mean well and I know they are trying, but I am so completely frustrated and angry right now.
I’m feeling the symptoms again (muscle fatigue, upset tummy, diarrhea) that I felt for weeks before the crisis occurred.
And that night…the infamous “kidney stone night…” I called the on-call endocrinologist at 1 in the morning thinking I was having an “addisonian crisis” or “adrenal crisis.” Adrenal crisis is easier to type, so I’ll use that term. They kind of dismissed it, even though I had my laptop open and was reading the symptoms of an adrenal crisis and convinced that’s what I had.
My Mom came and took me to the Vanderbilt ER at 2:30 in the morning, and the doctors (once I was able to receive treatment, that is, even after I told them I was potentially having an Addisonian crisis) were confused by the abdominal pain I was experiencing. Eventually they found kidney stones, and sure enough those suckers started moving, so it was “Voila! It’s kidney stones.” It was still weird how they presented themselves, but I digress.
So, the diarrhea and all of that goes away, probably because of the stress doses of hydrocortisone I received in the hospital, and the elevated dose I continued as I “tapered down” to my daily level. They eventually got the kidney stones out and I felt good for a while.
And then this weekend…the tummy troubles start again, full force. My stomach hurts the instant I eat anything, and I’m rarely hungry (that’s been a given the past few months anyway). I have to remind myself to eat. Also, my legs and hips started hurting again this weekend, and my roommate took notice of it, too. That I was walking slower, that I looked a bit more sluggish, and that my stomach problems were back.
So I “hemmed and hawed” over it yesterday and then decided a little self-diagnosis was yet again in order. Thanks to the Pituitary Network website, I combed through a detailed analysis of secondary adrenal insufficiency, caused by pituitary Cushings. In plain English, the exact crap I have.
And…LO AND BEHOLD…if I don’t read this: “Because the symptoms progress slowly, they are usually ignored until a stressful event like an illness or an accident causes them to become worse…in about 25% of patients, symptoms first appear during an addisonian crisis. Symptoms of an addisonian crisis include SUDDEN PENETRATING PAIN IN THE LOWER BACK, ABDOMEN, OR LEGS; SEVERE VOMITING AND DIARRHEA, followed by dehydration, low blood pressure and loss of consciousness. LEFT UNTREATED, an addisonian crisis can be FATAL.”
So I sit here, writing this blog, gobsmacked AND HACKED OFF AS ALL HELL. I called my doctor’s office last week to alert them that the symptoms are still there, and that I should probably see my doctor before August, when I’m next scheduled to see him. I still haven’t heard back, and I called again this morning. It’s ridiculous.
I’m like a ticking time bomb. Am I going to have to become comatose before someone listens to me? I know I don’t have a fancy M.D. and I know I’m just a paralegal. But I also know my own body and I know when something is wrong. That has been my life for so many years.
So, yes. I’m sitting here, perhaps on the verge of yet another adrenal crisis, and no one cares. I’m going to purchase a flashing neon sign that says “TIME BOMB!” and wear it above my head, so everyone knows I’m about to explode with some rare freaking disease that no one has heard of and no one can understand.
C’est la vie? Seems unfair to me. Oh, well. We’ll see if they call before I wind up with more medical bills and more unnecessary medical drama. In the meantime, I’ve printed out the information for my closest co-workers and roommate so they’ll know when my body is trying to go kaput.
Posted by: Rachel on: May 27, 2009
Well, I had another bad day yesterday. One of those “woe is me” moments where I felt like I couldn’t take it anymore. Several things happened to hurry that mindset along, but I allowed myself to wallow, rather than just letting it roll off my shoulders. I can’t do that anymore, given the precarious nature of my health, so it wasn’t a good thing yesterday. I even uttered the words “I just can’t do this anymore,” which is very unlike me. Needless to say, it was a very bad day indeed.
That sulky mood continued through the night and on into this morning, and I felt the familiar stirrings of yet another kidney stone. It’s a pain you identify quickly once you’ve had them. And it completely freaks you out when you feel it happening again. I just kept thinking the entire time I was showering this morning, “Why me? Why me? Not again! Not again! I can’t do this again!”
I had a rather emotional conversation with my mother on the way into work. I tend to hold things back, especially when it comes to my health, because I have a hard time explaining it in such a way that anyone understands. There are people at work who certainly do not understand, and their poor attitudes towards me are not helping. I’m doing my best to insulate myself from them, but I know it will take some time. I guess I also tend to not even tell my closest friends how I’m really feeling, too scared of becoming one of “those people” who complain all of the time.
I did have brain surgery, but I’m not lacking in intelligence. I know that I should be grateful for everything. I know that I should count my blessings and I know that I am a very blessed person. I have no problem seeing that. I know that this disease is rare and that my doctors are working with me to make sure my life is as problem-free as possible. I know they are still learning how to treat me themselves and I know I present a very difficult case.
So that’s not my problem. My problem is that sometimes I just feel so frustrated and exhausted. For the most part, I am a very optimistic person. But when I get down, man alive do I get down. I mean…I do it in style.
So that is what happened yesterday. I let it all get to me and had a momentary lapse of judgment and allowed myself the pity party that I shouldn’t have entertained. All it did was put me in a bad sort this morning, so what good effect did it really have? None.
However, God does answer prayers, even if you don’t mean to pray. My little dramatic stunt yesterday afternoon (“I just can’t take this anymore!!!!”) complete with the tears, exaggerated hand motions and pained facial expressions was really just a prayer in disguise, though I didn’t understand it at the time. God made me. He knows I have a penchant for dramatic flair. I always have. Grandma Suzie did always want me to be an actress…
Anyway. God thoroughly enjoyed my little show and gave me a standing ovation and then said “Okay. Now that we’re over the dramatics. Are you ready to listen?” And He gave me his answer.
We have a daily “pep talk” of sorts at work every day. Today’s topic brought tears to my eyes as I quickly realized that God was speaking to me in that moment. The topic was “If you want the rainbow, you’ve got to stand the rain.” That shut me up right there. But the discussion continued on adversity and how to make the most of it. You have a choice. You can either bellyache and wine and “why me?!?!?” or you can forge on ahead, regardless of your circumstances.
They listed several famous people who became famous (rightfully so) after facing adversity in their life. Such as Beethoven, who composed some of his greatest works after he became deaf. Or Thomas Edison, one of the greatest inventors in history, who had an IQ of less than 100, was nearly deaf and almost died from scarlet fever. We consider Abraham Lincoln to be one of the greatest U.S. presidents, and he did so only after dropping out of grade school, going broke, losing a son at a young age and running for political office and failing four times before finally winning a bid in the Illinois Senate. They also mentioned the struggles of Christopher Columbus (ever heard of him?) and Carol Burnett, who also overcame great adversity and succeeded. They asked the blunt question, “What stands in your way of success? Do you forge ahead or do you let it hold you back?” I answered honestly that I allow myself a temporary pity party and then forge right on ahead. Someone else offered up the wise adage “Steel is made from the hottest fire.”
The quote of the day is one I didn’t take lightly. “Good timber does not grow with ease; the stronger the wind, the stronger the tree.” – J. Willard Marriott, founder of Marriott Hotels.
Okay, okay, okay, okay God. I got it. I also received another wonderful email right after that from my father called “God Said No.” I’m sure it’s floating around on the internet and you can look it up. But it also gave me another heaping dose of perspective, most namely the following:
“I asked God to give me happiness. God said ‘No, I give you blessings. Happiness is up to you.”
“I asked God to spare me pain. God said ‘No, suffering draws you apart from worldly cares and brings you closer to me.”
“I asked God for all things so that I might enjoy life. God said ’No, I give you life so that you may enjoy all things.”
So yes, I heard. Actually…I heard him say “HEY! You! Will you friggin’ listen to me?!?!” in a Godfather accent, but yes, I heard. I think God’s a fan of the Godfather accent. People do listen when he sounds like James Earl Jones or Marlon Brando. They really do!
Anyway. I’m at peace again. A brief lapse to be sure, but I’m once again at peace. My response will be to just forge on, count my blessings and praise God for all that I do have and not bellyache about the things that I do not have. He’s got this. He reminded me today.