YES!!!! Pain Pills!!!

Finally a doc who will give me pain pills. Yesterday I saw my hematologist and he was very angry that my other docs would let me walk around looking like I was about to pass out from pain...he called it unethical. And since he's a blood doc he said that it won't bother my tests as much as they would like me to believe. So I got a prescription so that I feel like I can breathe despite the pain.

Anyway, he said I don't have cancer and my levels are likely to be high because of the tumor and my body it trying to fight it...not because I have a bone marrow problem (cancer). He ordered the tests and any blood tests that would be considered pre-op for my surgery and recommended I go to a neurosurgeon ASAP because they will tell everyone I need it out ASAP. He even said that he could see it as soon as I walked in that I had changed, I was still a very pretty girl but something was wrong and different about me...then we chatted and before I even mentioned Cushing's he said that I had Cush...and I said I know Cushing's and he asked why I was here. He said it was very wrong of the docs to keep me going around like this for so long and they need to stop worrying about the blood work and pay attention to my clinical symptoms. He noted I have everyone in the book except the stretch marks!

He also has treated me for a number of years and apparently the docs that know me can tell that I have Cushing's now if only the other docs would have listened before things got nasty! I called the recommended surgeon and should hear back soon as to when they will see me and then we can go from there...

Always so much drama but at least I get to see a surgeon now and am not going to off myself because of the pain! Okay, now that I can sit and not be in pain I think I will go relax...Have a great day and keep all your body parts crossed that this is no more false hope!

More of Everything

More docs, more tests and more problems seem to be the theme today. I heard back from my endocrinologist and the news is okay...until she mentioned that she strongly recommends that I see a hematologist as soon as possible. Apparently the thing in my head isn't cancer and may or may not be cyclic Cushing's but we have to wait and see if my levels change again.

So I inquired for more detail on why I need to see a hematologist and she indicated I could be having a very serious problem with my bone marrow...a strange anemia that is very rare or the other option of a type of blood cancer (leukemia / lymphoma / myeloma). She was very adamant that I see one as soon as possible because my white count and plates have been very high for seven months now and it appears that it is not stressed related...or cortisol related.

The problem with my blood could be causing all these other issues so I'm not crazy and/or making any of this up - I know some of you think that I am but apparently the medical community agrees that I am not and that there is something fairly serious going on. You can't imagine open abrasions on your skin and hair falling out all around you.

Luckily I already have a hematologist for my clotting disorder so I called and they got me the first opening for Wednesday. Which means more tests and more doctors....

As you can tell, today is not the best day for me and the frustration continues to grow as I get thrown more possible diagnosis' and more severe consequences....but I'm trying the best I can to stay positive even though days like today make it harder.

Happy Monday!

Can Anything Else Happen?

Today was my annual cleaning and x-ray session at the dentist. Keep in mind I've been seeing the same dentist for the past five years...

And low and behold during my cleaning the hygienist asked me about my heath and any recent changes...I mentioned the pituitary problem. I asked her why and she began to inform me about the dramatic turn my teeth have begun to take since my last visit. She promptly pulled my file and asked me when this had all started...and guess what there was a sharp decline in my oral health since this all started almost to the day!

So the good news today, my teeth haven't fallen out yet. The bad news, I have impeccably clean teeth and gums but there is a major problem below. It seems I am experiencing bone loss related to all this and I will like need to have my gums re-grafted over my teeth since they are pulling away. All in an attempt to save these very clean, white teeth.

I wonder, by the time they decide to do anything - will there be anything left to save? My hair, my body, my organs, and now my teeth...so, can anything else possibly happen?

I Know Patience is a Virtue But...

...it's getting harder and harder to wake up in a body that isn't mine. It doesn't feel like me or look like me. I'm doing a fairly good job at trying to stay positive but every time I look in a mirror or try to do something as simple as walk on a treadmill I get a cruel reminder that this is far from over.

Every muscle in my body hurts and just wants to be put down. I've been trying to do the treadmill but the pain is some times so much that I feel as though I may pass out. But I keep going hoping that if I work through the pain that I'll have some sort of semblance of my body and myself. Walking on the treadmill creates such muscle spasm and fatigue that it's hard to walk around the rest of the day. But I have to continue to fight which feeds another beast...

Being a person who previously dealt with an eating disorder for a few years this is getting even harder emotionally. I fought so hard to be able to eat and exercise normally that I don't want to lose that but everyday I look in the mirror all I want to do is cry and slip back into the old ways. I guess it's kinda like an alcohol addiction, it never really goes away and you can't slip and have just one or you risk falling back into the oblivion. I wake up starving in the middle of the night from what I assume is a cortisol rush but deny myself for fear of overeating and the ensuing purging that would soon follow from the guilt. I can't get any larger I feel and look miserable!

So emotionally as well as physically I am completely exhausted and just wish that this would be somewhere near an end. I want so much to return to a normal life and live in the body that let me do what I want and was bearable to look at in the mirror. I guess this is all coming about because I fear the spring and the summer as smaller clothing approaches and terrible heat.

This is so hard but I just need to try to stay strong. It's just getting harder everyday to look and feel like this. But patience is a virtue right? How much is one expected to have after more than seven months of chaos?

Playing the Fool

Hi all, sorry I've been MIA for the past week but I was feeling great - well as great as I can feel.

Last week I felt pretty good. I even got three workouts for about half an hour in and lost about five pounds total so far.

But late yesterday I felt as though I got hit by a truck. I was ready to sleep at 6 p.m. and tried to stay wake until 8 or nine when it's a little more respectable to pass out. I madeit till about 9:30 and just woke up a few minutes ago only because my stomach is rumbling. I know, I know, I told you I can never sleep but occasionally this happens where I wake up only to eat for like two days. That's what I feel like and what happened when this all started in September. Every muscle in my body feels like it's too much to respond and it just ran a marathon. I think you've heard me say that one before.

My vision and balance are also off today and when I tried to read an email sent to me by another "cushie" I couldn't understand it after three lines. I got frustrated and closed the email realizing that this disease is playing me for a fool. I love how it makes you believe you can conquer the world one minute and the next I feel too whacked to even roll out of bed.

I guess I just really want to be better and I'm fighting so hard to maintain a "normal" life that part of me forgot I have tests coming back this week for cancer, Cushing's and diabetes. Maybe my lack of a wake up call is really a wake up call that this isn't over and that it likely won't be anytime soon.

I'm still going to try and be normal because as I have been saying for the past couple of weeks; "I'm not dead yet, and why should I act it." But for today I think I'll just let my body tell me what to do and if that means lying in bed all day than that's what I'm going to have to do - there's always tomorrow.

Knocking on Wood

It was a good weekend and I'm knocking on wood that everything is going to be okay. I even felt well enough to go out to dinner with a friend and caught the parade for St. Pattie's Day on Saturday. On Sunday I caught an aweful flick at the movies. This morning I woke up and jumped on the cross-trainer again. I've lost 5 pounds in the last couple of weeks so maybe that's why I'm feeling my second wind...but whatever it is I hope it lasts.

I have a bit of a headache now and wish I could take my meds but I'll live. Maybe I'll just take a nice warm bath. But first I'm off to cook some dinner...hey, maybe it's the new way of eat that has boosted my energy. I doubt it but if it gives me hope who cares what it is.

More tomorrow!

Oh My Fluttering Heart

Whew, I survived my first workout on the cross-training machine. I feel a little light headed and my heart seems to be fluttering extra hard but I think I’ll live. My pulse also seems a bit erratic but a girl has to do what a girl has to do. We’ll see how I feel tomorrow.

The diet seems to be going well but I feel like I’m eating like a pig. I guess that happens when you take your usually calorie count in and only eat veggies and fruit as carbs since you get more “bang for your buck” out of them than a bowl of pasta. Of course it’s only day three and I am going out to dinner tonight. But I should be able to muddle through. Besides, it’s not like Atkin’s or another diet where you can’t “cheat”, it’s more of a lifestyle choice than a diet.

So I've heard from a few more people who actually had cancer induced Cushing’s – very strange. In a weird way it makes me feel okay about these tests because these people survived. It’s kinda weird when you hope for such a horrible thing but than at least I could get on the road to recovery. Some people would think I’m sick for thinking this way but really it’s about survival and when you go on not knowing for months and years on end all you really seek are answers. We only have to wait another two weeks for my urine tests to come back. Hopefully with some answers! I’m going to see what other info on that I can find out just in case so I’m prepared.

I also am speaking to a woman who had cyclic Cushing’s and took nine years to get fixed…I hope mine goes faster since the longer it goes on the harder it is to recover and the more long-term effects one has. There’s not a lot on the internet about cyclic since it is rarer but I think she may have some insight and tell me about some of the tests she had run that finally got her surgery and on the road to recovery. That’s my main goal right now!

Okay, I’m going to go rest my fluttering heart so I can make it to dinner tonight!

It's a Wonderful Day in the Neighborhood

What a great day! Bet you didn’t think you’d hear that from me…but small goals are being achieved and someone has to be happy about them.

So today I got my “good” W2 from my employer after mentioning the IRS to them. I guess some things are better left with a calm but forceful reminder. Now I can file my taxes like a good little girl and hopefully get a tax return? Keep your fingers crossed!

Also, I ordered a pair of jeans this week since I have a dinner with my girl friend this week. Much larger than anything I have ever worn in my entire life and hopefully this will be the last time. But the good news is that my butt totally doesn’t fill them out! I guess that means my butt is still the same size as it used to be. I know it is and so are my legs since my old jeans still fit except for the waist. I’m not sure I feel very sexy in these jeans but they’ll do. You have no idea how weird it was to put pants on that have a zipper and button…first time since Christmas. But I’m not buying anymore because hopefully they will cure me and I can go back to the skinny jeans or even need to buy a size smaller. Yippee – real pants!

I also got a great blankie from my Mom today. She has made them for everyone but me and boy was I surprised when the mailman brought me a package from her. It is sooooo cute! It has cats on one side and an oatmeal fleece on the other. I can’t wait to nap and snuggle up with it. I love it – thanks Mom you made my day!

Apparently there was also an article by Dr. Paul Donahue from Sunday’s paper discussing Cushing’s and how long it takes to get it resolved. Take a read for yourself.

Also in today’s New England Journal of Medicine there was a scientific case written up on a 50-year old woman who had Cushing’s since she was very young and finally got cured. Since this is a subscription based product and very scientific, you’ll have to ask me to send it to you if you have a mind for science and would like to read it.

Suddenly today I feel not so crazy and a bit better, I think the drugs are kicking back in…keep your fingers crossed, praying, wishing, whatever…it might be working!

Learn Something New All the Time

Boy the last couple of days have been quite educational. I heard back from my endo last night and she said that the skin infection can be caused by any of the things she is testing me for and that I shouldn't be worried as it is reinforcing what is going on with me as a whole. I also learned that shaving and bathing with antibacterial soap can help prevent all these skin infections - but who really wants to use that soap. Actually you don't use "soap" one uses Cetaphil antibiotic cleanser which is not soap. A bit expensive but I'll give it a shot. I started using the antibiotic cream last night so hopefully it will kick in soon.

Yippee, I got my drugs back today! Good thing too as my blood pressure was very high this morning - 170/110. I breaking them up and taking one kind in the morning and the other at night hoping to have a positive effect all day since sometimes it get very high when one is due. We'll see what happens.

Today I started a new diet. It's not really a diet so I have no clue why they call it that but I did some research and found out the The Zone Diet actually helps lower cortisol levels, is great for diabetics and helps fight cancer. And guess what, it's not low carb - I always thought it was. Anyway you just eat a ton of fruit and veggies and an adequate amount of protein. The rationalization is that carbs from pasta and rice and stuff turns very quickly to sugar giving you extreme highs and lows throughout the day. Protein gives you body the fuel it needs for the muscles but not too much to kill your kidneys. And fat, I get to eat the right fat at every meal since it helps you metabolize the sugar in your body so it does not turn to fat. Basically a woman can eat 3 - 4 ounces (about the size of your palm and as thick) of protein (about 20 grams), 30 grams of carbs like veggies and fruit and sometimes a very small amount of rice, pasta or other starch but mainly veggies and fruit - which I love. And finally 10 grams of a healthy fat so you can add nuts, olive oil, avocados, or some other healthy fat. Guess what I can still eat my cheese, have a glass of wine and eat desserts as long as I make sure I have the 1-2-3 balance of fat, protein and carbs. And you have to eat on a schedule; like breakfast at 7 and lunch by 1 and then a snack 2-3 hours later then dinner in another 2-3 hours and finally a light snack before bed. I know, I know a snack before bed. But they tell you that the brain still needs food at night so you can have a balanced snack - ex. and apple, and serving of cheese and some nuts. And if you're me, maybe a small glass of wine. Not that I actually drink anything other than water. Basically the only things limited (not excluded) are too much juice and starches since they cause your insulin levels to fluctuate greatly. The idea is to keep the insulin in the "zone" so you don't feel like you need sugar. This is very different from Atkin's who don't allow hardly any fruit and lots of any kind of fat and absolutely no starch. With this I can still eat a turkey sandwich! Go figure. So I figure at this point I have nothing to lose and I might as well give it a try for a month or so. Besides they don't promote rapid weight loss – only 1 - 1.5 pounds of fat per week. Anyway, I figure I will at least feel better mentally knowing I am eating as healthy as I possibly can and if it helps the cortisol and blood sugar too than I win!

Oh, and, the Zone definitely recommends at least half and hour of exercise and a few minutes of strength training to get started. I think I can handle that.

I dropped off some papers to my doctor and learned that Social Security contacted her about what is going on and her take is that they will give it to me - keep your fingers crossed!

I learned some other stuff too but somehow I forgot it - oh well it will come back!

Great - A Skin Infection

Like I need another thing to treat if they even let me! I went to the dermatologist and during the few minutes she spent with me she diagnosed me with folliculitis - a skin infection. And guess what it happens to be tied very closely with Cushing's. I'm so confused as to what is happening to me - is it Cushing's, diabetes or cancer? This is insane! I knew the skin thing wasn't a normal acne! I could have diagnosed that problem myself. Maybe I should be the doc. So I just left a message with the endo to see if I can take these meds to stop the hair growth and fight the infection. We'll see what she has to say. As far as the derm - she's pretty useless and answered very few questions once she decided what my skin problem was after one look. Maybe it was just very obvious.

God, my blood pressure is through the roof right now! And yes, I still have my headaches. I can't wait till tomorrow to get my drugs back!

UGH!!!

Yippee - I Can Pee!

Today started the first 24-hour urine test. Such fun! I can't wait till I can get up at 3 a.m. and try to remember to use the damn cups. They seriously need to make a better system for women. Headaches are still killing me and blood pressure is still high.

I know it won't make a big difference because my weight isn't based on a dietary thing but on a chemical issue, but, I've decided to start a strict diet on Wednesday. Why Wednesday, well I get my blood pressure drugs and migraine pills back so I don't have to worry about either one of those things stopping me and my dietary restrictions are lifted. That way I can try to get back to a "normal" me sometime before all those small spring and summer clothes become manditory. It probably won't work, like I said my problem isn't what I put in my mouth or do for exercise but maybe it will be a good mental health thing.

Okay, enough for today, my head is still pounding!

Very ill...

Sorry I've not been writing but I have been very sick after coming off the blood pressure meds and it has been very high! I've also had a migraine for about three days leaving me almost constantly in bed. I'll write more in a day or so when I can screw my head back on straight and I can take my blood pressure meds.

Ugh, back to bed!

A Scary Night

Whew! I made it through a very scary night.

They say your blood pressure increases at night and is lowered by morning. Well I hate to think of what mine was as I lay there thinking someone had reached a hand in my chest and began to manually pump and squeeze my heart. Coupled by the lack of breathing and the tremors and spasms in my legs I thought I was going to have some sort of seizure. I didn't know what was going on with me and I was afraid to look, almost the same feeling one would knowing they were abut to get hit. So I lie there with my eyes closed extremely tight and just focusing on making it go away with my meditation. Side note: for those of you who don't know I started meditating my way out of migraines years ago and have found this tool useful throughout my life.

I checked my blood pressure when I first climbed into bed and it was 170/110 - not very good and considered by some to be borderline stroke level. Last time it was this high the docs made me lay down and kept retaking it till they finally handed me a pill and told me to take it immediately. So I promptly laid down and began to try to breathe my way out of it. Not sure that I was successful since it began to follow me in my dreams as I entered a conscious dream-like state.

And still this morning I feel this imaginary person squeezing the life out of my heart and compressing my lungs. Only another 6 days of no pills...yikes! I'm a bit terrified.

And you thought your dreams were scary, at least you can wake up!

So Many Choices, So Little Time

Last night I got my results back finally and guess what there were no conclusions but I guess we've come to expect that. My sugar was high as was my white count (yet again) and so now we have even more choices. While my Internal Med doc truly believes it's Cushing's we've added more to the mix. And they are such wonderful choices...

The endo added more tests for me! I get to do 2 more 24 hour urine tests after I've come off my high blood pressure med for at least 3 days. Lovely, they take away my last drugs. Maybe they are trying to kill me. Anyway, one is for a hormone that cancerous tumors give off; I guess she thinks it’s a possibility given my family history and my symptoms are the same as many cancers. Speaking of which, I have very sore and open lesions on my skin so I made a dermatologist appointment for the beginning of next week. I'm a bit concerned about them since they aren't a normal acne since they tend to rupture in my sleep and leak blood or other fluids and then take another 2 - 3 weeks to heal. The peroxide and antibiotic creams don't seem to be working either. Anyway, I diverse, well not really since there is one for of cancer that gives off this hormone that can also give off a strange skin infection. But let's keep it positive and not name it.

The second test is for a chemical that increases when one gets diabetes that adds to the high blood pressure I have been having as well as the sugar problems. Oh, by the way, my blood pressure has already been 160+/90+ all day today and it's only my first day off. The doc did say there is a risk of heart attack or stroke from coming off them but we really need to do these tests.

Finally she thinks I may have more than one of these options, she's guessing two but won't indicate which ones. The ICD-9 codes she used were not very diagnostic either and didn't lead me to any clues. But I have three great options - Cushing's is still and option; diabetes; and cancer.

Gotta love life with so many choices and so few answers in so little time! Will it ever end…oh, and I forgot to mention that these tests take at least two weeks to process after they are completed so it looks like we have another month to wait!

Like I said, so many choices with so little time!

Still Waiting

My doc is two days back from her vacation and still no word...I hope she calls me back today. My blood pressure has been high again for five or six days so my internal med doc upped my meds yet again. My resting blood pressure is about 150/115. Which is not so good but not completely terrible. My heart rate is up again racing at least 100 while sitting still. My migraines are back in full force and last night it took 3 migraine pills to kill it. I know I'm not supposed to take them but at this point I can't handle another headache. Besides I have no final answers and I'm still waiting so I'm sure it won't kill me. My skin on my stomach is very ulcerated right now and it hurts to have my shirt rub on them...damn her for not calling me back. I hate trying to be nice but I'm forced into a situation where I need her or wait another 45 days for an appointment with another one!

UGH!!!