Doing Well

I'm doing fairly well the past few days. I'm a bit tired all the time but other than that the past ocuple fo days have been ok. I've had a couple of major headaches but at least now I can get them to go away! My Medic-Alert Bracelet is in and I have to go pick it up. I'm going to wait for someone to walk with me because it's pretty far and this week I have been really weak and tired.

I must be getting bored here though because all I want to do is move my furniture around...not that I can do that either!

Good news though, my man is home and a friend and I are having lunch Friday! I can't wait to get out some and it's supposed to be a beautiful weekend!

Ok, off for the afternoon nap and it's going to rain so it's perfect timing!

Healing!

Fabulous news...my latest labs work came back 100 percent normal! Wow, it's been a while since I could say that I'm normal! Let's hope they stay that way permanently. I mean I'm terribly happy that the labs are normal but it is still early to tell if this will hold out for the long haul. Let's face it, I'm still on a ton of drugs to make this all happen and my ultimate goal is to make my body "healed" without all the chemical support!

So it is kinda weird that my doc called me this morning since yesterday I booked a spa therapy to help me start healing. I am a firm believer in the body’s and mind’s ability to heal itself. Last summer I went to a spa for a few days and then began taking energy healing lessons and actually worked on several people to help them heal and they in return to me. I also have been practicing meditation and some energy healing on myself since then. I can’t tell you how many rough times it has gotten me through and the headaches where I didn’t just off myself because of my ability to “take care” of myself.

Anyway, yesterday I booked a spa session in hopes of kicking off my bodies’ ability to start generating more positive and healing energy on its own. Because of the Cushing’s I have not been able to do much energy work on myself since the drugs and illness robbed me of my daily strength and literally of my body’s own energy. My treatment today starts with a ginger scrub to get rid of all the bad stuff on the outside and start the energy flow. As many of you know ginger has many healing properties and you have probably have drank enough ginger ale when your tummy hurts to know it works! Then I am wrapped in a green tea mud to help detox and remove negative energies from my body. Lastly I’ll be massaged in lime oil for an hour promoting energy flow through my body and hopefully kick starting me enough that I can begin to “heal” myself and get back to my normal life. Thanks to my man for this awesome gift to help lift my spirits and get me back on track with my healing!

Many of you think that it’s not possible to heal yourself but I think the mind is a powerful thing. While I’m not religious in any real sense it is important to be spiritual and open to the world so that you can get help from sources many of us can’t see or feel. I haven’t made any determinations about religion in my life but do believe there are many things in life that help us. And, if being spiritually open and believing in the power of the mind to help me along with the science and medicine practiced by my doctors will help me get my life back then I’ll do anything at this point.

My body has been so abused by the illness that it will take a while for it to heal. According to my doctors all the pain and tiredness are from the illness and it is a good sign my body is starting to appear normal – chemically speaking and drug induced! Now it’s time to put to work all the other things that I can control and make myself 100 percent better.

So let’s use today as the day I kick off my “healing” and hope that my labs remain normal and that I will beat the hell out of Cushing’s! If all goes well this will be my annual birthday of health and well-being!

Testing , Stares, and UGH!

So I heard from my endo last night and discussed what has been happening to me the past 10 days. She immediately scheduled me for another round of tests this morning to check for possible recurrence or malfunctions of both my pituitary and adrenal glands. If this is true then it looks like I will need radiation and possibly at least one more surgery on the pituitary and the adrenals. Not good news. But keep your fingers crossed that I'm just having really bad symptoms from my last surgery and the diabetes insipidus (DI)!

As if that wasn't bad enough, people treat you different when you have some sort of physical aliment. I never thought anything about it before I got sick except when I had some sick problems. Now I was sitting waiting for my tests and no one would sit by me. Why you ask? Well, as I have mentioned before my DI and possible pitutary malfunction make me sweat uncontrollably - it's not even real sweat, it's water that decides to seep out my pores like a faucet. Anyway the office was packed and people were standing instead of sitting in the chairs next to me like I had some horrible disease and was going to give it to them. Trust me I don't smell because it's not real sweat! Besides that I had literally just showered. Freaks!

Although, this not the first time that this has happened to me. Since I have gained the massive amounts of weight and all the other physical changes people just stare at me. Like the other day when I was at the grocery store and began to "glisten" the cashier and person behind me both exchanged glances after looking at me. They probably think I'm going to go "postal" on them. And people who knew me before also stare and act strange - well some of them do.

On Saturday I went to the jewelry store to have them make me a Medic-Alert bracelet and of course I had to have a dozen things put on it. This created a long discussion about what happened to me and a million questions as it usually does. I don’t mind talking about it and the sales lady was very compassionate but I still got the strange looks. I felt bad enough having never been sick in my life until now and being so young but having to build a charm bracelet so that all the items could fit. How weird. I tried to make it look as normal as possible but I still think people will look at me with my new label as being a freak of some sort. Very few people take the time to understand. It’s frustrating and beginning to wear down my spirit at times. I almost don’t want to go where there are people because the looks are becoming so frequent and apparent.

Anyway, before walking there I had gone to the pharmacy to discuss the symptoms I had been having and I broke out in a sweat. I immediately had to try to make him understand that it was the DI/pituitary problems causing this not some sort of drug problem since I’m on several narcotics. He tried not to stare but it was clear and he laughed once I told him because he was a bit ashamed at wanting to ask. Good thing I know him fairly well. He also mentioned that my eyes were dilated and asked me about my vision problems. I said I had been having a halo effect and he strongly recommended I contact my doc as it could be the start of new problems. Fantastic!

It’s not even hot when these “glistening” problems occur! I will start in the middle of my freezing, air conditioned apartment or in the middle of a park or anywhere really. It gets so bad that I have to change my clothes several times a day. Boy, am I beginning to hate laundry and even getting dressed. But it doesn’t matter if I just showered…the other day I had to lay around for two hours butt-naked trying to stop sweating after my shower walking in front of my AC units. Hello, it was 65 degrees in my apartment at best!

So today, I am trying to brave the stares again because I need to get out. I am going to lunch with a friend and chose a place with very few customers so that it won’t be so embarrassing and hurtful.

You know, it’s twisted because people stare and those brave enough to ask later say how strong and how well I am coping yet they are the first to stare…interesting! More later…

Physical Dependency

So I got the call back yesterday from the pharmacist and he says it appears that my body developed some sort of physical dependency on the methadone even though I was ona small dose. He says if I'm not better by the weekend I should go to see my doctor again and make them help me out. He said mostly real heroin addicts get this but it's possible since I've been on so many drugs lately that my body is more open than others. Great! He laughs because I'm one of their best customers and they know my whole history by now, which is great when someone is dispensing you tons of drugs...an added security layer, I suppose.

So anyway, I have another physical dependence...other people. Which totally sucks because it's summer and people have fun lives to live and who wants to come and sit with me and grab a five minute walk for lunch? My boyfriend has to travel a lot lately or I know he would do the smaller fun things with me like go lay around int he park and chat and have an outside lunch at a nearby restaurant. I feel kinda funny these days and I don't think it would be wise to wander around town and end up passed out in the middle of some side street with the bums. Hey, those bums are all addicts too and many are on methadone...see any connection? I think my friends find me boring but they don't realize that all I want is a quick lunch or movie where I can do something other than sit here and think about me and all the things I can't do yet. I am ready to jump up and conquer the world but physically I won't be for a few more months. Bummer! But patience is a virtue and by now I must have a lot of it. :-)

Anyway, this weekend I hope to get around a little with or without my sidekicks. I'm going to try but who knows with this damn withdrawal...ugh! Perhaps a movie around the corner or I'll walk to the end of the street for a manicure and pedicure. Hey, I'm sure my cat appreciates my pretty feet even if others don't see much of them. Okay, of to make some lunch.

Have a great weekend free of physical dependence!

Methadone Is Worse Than Heroin!

I think...and even some true addict boards say their withdrawal from methadone was worse than a true drug withdrawal from heroin or other opiates. Granted I'm not a heroin user and never have been so this really sucks. I can barely move without feeling the need to either vomit or have severe shits...not good for my diabetes insipiduc to lose all this water and sodium and other electrolytes I'm sure. I'm on hold with the pharmacy now to see what the deal is. You know it is bad when people would rather quit heavy narcotics than to take this and have to quit from it. Obviously the docs have never taken the stuff or have never tried to come off the methadone. Please they probably keep taking it no matter what because the steal it from their supply...just kidding. I'm so tempted right now to take another one to kill the nausea but I know I'll just have to do it again. I haven't been able to really eat since Saturday when this all started. I'm sure that alone is not good for me. You know I'm sick if I can not eat ice cream...that is always my backup when I feel sick. The only thing that seems to stay in me is ginger ale and some milk...gross, I am sick of them both.

Great now the diabetes insipidus is kicking in and I am dripping with water and need to change my clothes again today. It's like a shower without the shower. Good thing it doesn't smell bad.

Damn, I'm still on hold! This is crazy! Not to mention that my neurosurgeons office is trying to bill me for three days when I wasn't even in the hospital...great another battle to fight. I swear all medical professionals and their billing departments should be shot! To put people through illness is bad enough and then to try and rob them when they can't even work to get any money is worse...and it's not like they would even let me go back to work yet! Okay, they are looking into the billing issue. I threated to report them so we'll see what happens.

Okay, no word yet from the pharmacist...still waiting....20 minutes later...insane...I'll let you know what happens...I need to lay down!

Withdrawel Begins

Or should I say Methadone withdrawel begins since I've already been going through a cortisol withdrawel since surgery. I saw the pain management specialist today and he is having me quit the methadone "cold turkey" since I wasn't on a huge dose. He did mention that I'll have a pretty good withdrawel but after all I've been through for so ling this will seem easy. Sure, easy for him to say he's not the one who is deathly afraid of throwing up. And what if I throw up too much, will I go back in to a sodium crisis? God I hope not! Anyway, I'm still on Percocet and he added Tramadol for my daily pain management. Tramadol isn't supposed to make me as sleepy and groggy so we will see if it works.

My pain is 100 times better than when I had my tumor but the wirthdrawel from the cortisol my body was producing has left me with some. They say with time that will all go away but in the meantime I'll use the pills. Many of you ask me what hurts thinking it's the site of surgery but it really is other areas of my body. I have a very deep muscle pain and nerve pain in my lower half of my body, from my ribs down. I still have the headaches but not nearly as bad as before! Whew! I do get worse if I push myself so like the docs said...take it very slow...that means only a couple of very short walks a day and ots of rest! God it's boring but it sure is a hell of a lot better than before the surgery!

Well, I'm off to read since I can now enjoy my books again! Have a great weekend! I'm sure I'll be hugging the bowl and sicker than a dog in the 100+ degree heat and the withdrawel...I'll let you know how bad it is when it's over!

By the way, I don't get "high" from all these drugs and can't really inderstand why people get addicted and want to use the recreationally...personally I'd love to get my energy back and get rid of the "cloudy/foggy" feelings!

Later!

Hot Weather...Doctor's Orders

So we are under a big heat wave and I'm not allowed out in this weather. A little too much sweat and I'm back in a crisis with my sodium levels. Which would mean another trip to the hospital and ICU - I think I have had enough of them for the summer. So now I get to sit inside and be a bum...it's rather boring and I feel guilty about not doing more.

But I'm trying to follow doctor's orders.

Sleeping Beauty

Wow am I sleepy! All I seem to do these days is sleep and it feels so good. I haven't slept in months and now to sleep like sleeping beauty is amazing. Although sometimes it is a bit scary since I have a hard time waking myself to take my pills in the middle of the night or to go to the bathroom. I mean, I am totally passed out and can't even move.

I still wake up at hourly intervals to go to the bathroom because my kidneys are still dumping but the sleep I get in between is solid. I wish I'd never have to wake up and pee but I'll take actually sleeping in spurts better than nothing at all like before. My doc is working on my meds so that this is more controlled and the past week has been a bit better since I'm only waking every hour and a half at times. She says that this is all normal and that my body really needs sleep because of the past year of trying to get diagnosed and fighting with the world. Not to mention the fact I have had two major surgeries within a months or so of each other.

So my mom and my boyfriend were gone this weekend (my mom has gone home and my boyfriend is traveling for work) so I finally didn't feel guilty for sleeping as much as I wanted. It's not that they made me feel guilty but they both have been great through all this so I feel like I should spend some good quality time with them...besides I feel kinda weird sleeping for 15 hours straight and then taking naps on top f it. I make myself feel guilty I think more than anyone else. After years of working hard and working out and being very active it is very hard to force yourself to sleep and nap because your body says so. Maybe I wasn't listening to myself enough and that's why I was having such a hard time when I first came out of the hospital. I mean, for the first time in months I wasn't feeling as sick as I had been for the past year plus of my life. Let's not say I'm well by any stretch of the imagination but I feel better than I had and I still have a very long way to go to get better.

So I'm happy my boyfriend is back...it's kinda nice to woken up like Sleeping Beauty. Trust me, I still am working on the beauty part but it's nice to wake up with a kiss!

Recovery Begins in Fall

My doctor is very pleased with my recovery thus far but says it will be "Fall" before I notice any changes that will start to take place. After the Fall my real recovery will begin. When I asked about physical activity she sad I have to take it very slow...how slow I asked. She told me only five minute walks once or twice a day until I can do them without feeling sore and tired...gee, that's slow. And then I can add five minutes to the and then one day after the Fall I can add more exercise but SLOW is the name of the game so I can recover without any additional problems.

It's official, I have to order my MedicAlert ID with Cushing's and Diabetes Incipidus on it...It's going to look like a full book by the time I'm done...maybe they do them as charm bracelets!

Anyway, my prolactin levels are high...which I knew because I shot my cat the other night with my breast milk...poor cat! So now I have to see the doc who put me on one drug to get me off of it to make sure that it's not my pituitary causing the milk. I know, it's all very confusing...you should try to figure it out when you've had brain surgery. So that appointment is set for August 12th.

Ok, off to rest as I have visitors coming this afternoon and I need to have some energy...ttyl

I'm Back...

from my visit to the hospital and now have my brain back enough to type what happened for you. As I said last week I was in the hospital for 11 days because I now have diabetes incipidus. I thought all diabetes had something to do with sugar but apprently this type has to do with water and fluid in the body. My pitutary is now telling my adrenal glands and kidneys to release all the water in every cell of my body which accounts for the massive amounts of urine that I was having. I'm down to only a couple of gallons a day now instead of several.

Anyway, I had quite the experience. I went into the emergency room thinking my brain was leaking fluid and having massive headaches and the next day I was sicker than any other day of my life. I literally thought I was going to die and I think for a moment or two I wished I had. I woke up on day two to a nurse who hates me because I ask questions and she doesn't have answers...she works at the dotors office not at the hospital. She has had an "issue" with me since day one; no clue why she just has since I told her I worked with many medical professionals developing education and public relations programs. So she is sitting there lecturing me and I'm trying not to vomit. I hate to puke and am deathly afraid of it so I try anything not to these days. Besides the fact I was afraid of popping my suture in the brain. Anyway, she tells me my labs are fine and that she thinks I have mental issues and a possible drug addiction because there is no reason to be in the hospital other than me wanting attention...like I said she hadn't bothered to read my labs or she would have known different but she lied and said she had. She left me feeling miserable but I said I would do a psych consult and meet with pain management to see if I really had problems...maybe I was missing something but at least I knew it would get her out of my face so I could get sick in peace.

I felt horrible. Worse than any other time in my life when she left my room and five minutes later I started vomiting right before I was due for my MRI. It turns out my labs would have told her I was very ill and my sodium had crashed overnight to almost "nothing." They moved my MRI thinking it was just a one time thing but apparently I threw up every 15 minutes or so for at least eight hours. I have no real recolection of this but its what I was told by the many docs and nurses who came to see me the following days. All I can remember is feeling vidicated since the nurse had continually accused me of lying and here we are with eight docs from all different specialties trying to "crisis" me so that I wouldn't conitnue to "walk" toward a bad situation. I remember people coming in and out of my room in the ICU but not really who they were and what they were doing...I just remember sweating like a faucet and throwing up so hard I had bruises on my stomach and chest and an abrasion on my mouth from rubbing on the basin. Everytime I would vomit I would also have to pee...I was so afraid of wetting myself! I would rotate from my bed to toilet every few minutes because the pressure and movement of one would cause the other to happen. I was dizzy and sick with every move, I had to close my eyes so I could try to stop spinning. They got me calm for about 30 minutes and tried the MRI...I made it in but immediately had to come out so I could vomit. It was worse than being in a coffin because I was hot and sick and couldn't control anything. I couldn't even stick my tongue in water without throwing up...hours of vomiting without any fluid except what I was getting in my IV...they pumped drugs left and right into my IV and patches on my skin trying to get me under control but it continued for hours. Not only was I violently ill but my head felt as though someone had cracked it open and was playing doctor and losing...you know the game that kids play and get shocked when they touch the side - I guess it's called Operation. I had never had pain and sickness like this and I remember seeing the hall lights and wishing they would knock me out and cut me open to either fix me or send me on my way.

Days later I was still losing all this fluid and I needed to get it under control. It's better now but my muscles and body are paying a high price. I'm boucing between severely dehydrated and over watered...both are very destructive and harmful to your organs and your muscles. Now I am forced to drink a ton a day and not just water since I am losing many nutrients and my body needs to get them so my muscles can funtion as well as my organs. With so much loss I can't seem to keep up so every day I am tired and weak beyond anything I have ever known. I push myself so others don't feel bothered by me but I know it's only hurting me even more. I just can't stand being so helpless and feeling like such a bother. This fatigue is only partly because of the hospital but mainly because my chemicals are still all whacked and not in balance. I see the endo again tomorrow to see what we can do to make this better.

All right, I have a massive headache now and need to lay down...more later...