Pics of my Buddies!

These are my buddies Bo, the cat, and Marvin, the fish. They keep me company everyday. It's fairly scary when people catch you talking to your cat and a fish!

Help Others With Cushing's

During this holiday season many people think of giving to charities. I would like to ask all of you who read my site to please consider donating to the Cushing's Support and Research Foundation as they help people like me throughdonations for medical research, patient and family supportt and outreach to educate others on Cushing's!

You can donate via the website ar www.csrf.net or by mail at:
Louise Pace
CSRF
65 E. India Row, #22 B
Boston, MA 02110

Please let me know if you have any questions!

A New Little Friend

Over the weekend I got a new little friend named Marvin...he's a fish! I love watching him swim as I fall asleep except last night when my cat, Bo, decided to attack the tank. He dumped my glass of water all over and wet my entire night stand and everything on in including the side of my bed. Who would have guessed that a little glass of water could wet so much!

Anyway, I can't drink a thing after eight tonight as I have a test tomorrow morning. They are doing an ultrasound of my abdomen to search for more tumors and problems with all the organs in there. Tons of fun. I have cut back on my seteroids and don't really need them since my body is currently over producing...this is so much fun. The doc from NYC called me and is working with me via phone until our appointment next month! I'm so excited to finally see someone who specializes in only pituitary problems and helps fix them! Since that's all she does hopefully she will do the job right this time. She doesn't even do the typical endocrine stuff like diabetes! Yippee!

I must be flying, I can't pay attention long enough to type a whole story I had in mind or pay my bills in the right order! I have to cook dinner but I'm afraid I'll forget that I'm cooking and go redesign my room or something. Oh, on that front I am getting a new mattress and stuff for my upcoming birthday as well as bedding to make it look all pretty! I can't wait for the change - I really need one when I spend most of my day inside the house.

This weekend I also decorated for Christmas (2 trees and wreathes)! It looks so nice! I'm also going to start making blankets to earn some money for myself so if you are interested please send me a post - the are nice fleece blankies perfect for kids and adults while watching tv or when you feel sick. My mom made me one! Anyway, I figure I can make a few and make some cash for my medication. I'll have a full email sent out in the next day or so.

Okay, enough rambling. I better make sure Marvin and Bo are still friends and cook some dinner. Let's hope I don't make a mistake and cook Marvin!

Thanksgiving

The past few days have been very busy so I apologize for my lack of writing. A few days ago a fellow “Cushie” died and it has hit me pretty hard even though we have only ever communicated via email. She was 24 when she died and has had all the same surgeries as me. She left behind her husband and three children - some of which were foster children. So I want to give thanks for her and her support while she was here and the help she gave the poor children that wouldn't have a mom without her. I have memorial fund and children fund information for her if anyone is interested in helping out her family since she had lost her insurance and had four surgeries in the past year. Please let me know. She is also having an autopsy to see what about Cushing’s can be learned to help others – I think she was very strong and still hasn’t stopped giving! It worries me that I will end up like her but…

I'm also thankful that I have been accepted as a patient at Columbia Presbyterian Hospital in NYC which is one of the world's best in treating Cushing's and other pituitary disease. I have had four calls just today getting the help I need. My first official in-person appointment is December 22 and we are in agreement that it's likely I will need a follow up surgery and possibly radiation. For now the new doc is monitoring my reactions to coming off steroids since I can't have surgery while I am on them. This should make for an interesting holiday season since every time I try I end up in the hospital or close to it. I am to call her anytime I feel sick or any questions arise. Let’s hope she is a doc who means it! But I am so thankful they chose me since they only take on a handful of very sick patients. Finally I may be seeing a doc whose life work is studying people like me. Hey, maybe you'll see me written up in some medical journal. I'm very excited and a tad scared but mostly thankful that I know now that I have the best chance for surviving and beating this disease - a chance many don't get!

The weather is cold and we are supposed to get our first snow tonight and I can’t wait to make a snow angel of the season. I’m also cooking a feast with a very important person tomorrow and someone who has supported me through all of the tough times as well as times that are good but are not “typical” Dulcie. I can’t wait until I can give my “real” self to people I have met through this disease. And, I can not wait to return to school to help others whom I have not met yet! I am aiming for Summer 2006 and also hoping to run my first triathlon or marathon by then. I have another friend who is going to do it with me. It should be fun!

I do have some not so happy news; I am losing the feelings in my arms and legs due to the tumor, the disease or something very strange. I am wearing splits at night and have to have nerve stimulation testing done after the holidays. That and they had to up my drugs to a very strong narcotic that I am afraid to take and honestly it does not do much for me. But the good news is when they fix me in early 2006 I can regain or relearn all that I have lost and then some. There are times that I worry about all that but I know in my heart that I will not settle for anything less than being the best I can!

Well, it is late and I’ll probably write again later since I have a whole list of things to be happy for…including you, my readers!

Thanks for Two Things

Okay, so I missed last night's entry but I was busy chatting with my friendswho are doing anything they can to help. I was on the phone for hours last night and boy did I need it because the surgeon who allegedly didn't do my surgery called and wants to see me ASAP. I'm sure you can imagine the horror which gripped me after nearly five months of no contact. Why now? Also, I had bad news about my liver enzymes increasing as well as my ACTH and Cortisol coming back way below normal even though two weeks ago I had full-blown Cushing's Disease again. Now it looks like cyclical Cushing's. Just a short note on all of this then I'll get to the happy portion of today's entry. Anyway, I am on replacement therapy so my levels should be the same as yours on a daily basis. I got kicked back to the wonderful doctor who has stood by me for the past 15 months and has been my physician for more than seven years at this point. She is so angry with all these medical professionals she has no idea how they could enter medicine. I thank god for her everyday! She has jumped back on to save the day and has already ordered all of my tests and called hte experts at Columbia Presbytarian in NYC to get me in within a month for a consultation and treatment. Now she knows how to take action. I'm having another MRI of my head and abdomen as well as a CAT scan. I called Columbia and should be able to get in by year's end if I get my files to them as soon as possible.

Okay, now to happier things. I have to thank the one doctor who has upheld her oath to help others and do whatever it takes. I have worked with her for seven years and without her I probably would have given up months ago! She and her nurse treat me with compassion and humor as well as ensure that if others fail they pick up the pieces. I am sure she didn't imagine having this many pieces to pick up but each time she calms me, reassures me, and actually makes me laugh and determined to continue the fight. I could go on forever but you would probably get bored.

Finally I would like to thank my friends who don't pretend their life is perfect because they think I have enough to deal with. I'm still human and still have interests other than being sick. Besides I do get some pleasure knowing that life continues outside of my apartment and hospital walls. We all have our problems and issues but it is our real friends who help us through them - and how can one help if all you do is hide. I learned that lesson recently and can not tell you the difference it has made in my life. It is kinda scary because you do lose some friends by being so honest but it also allows you to make new ones who help.

Okay, off to nap before lunch...

A Dollar and A Dream

Today I bought my first lottery ticket. So I guess today I feel lucky that I live in a country that has so much money it can afford to pay people $225 million if they win - after they tax us of course. It's also Election Day and I think we should feel lucky for that as well even though we may or may not like who wins in the end - at least we have the right to do things others may find meaningless.

I guess you could say I’m thankful we live in a country where we have the right to choose and hope that a dollar leads to a dream. In my case it would be to get rid of all these medical bills and help my family. I took my last $4 out of my pocket today and said I have no idea how to do this but I need to…the man laughed and said mega million. I laughed and said yeah, I have $4 so help me out. He said as long as I let him hang my picture if I won. I couldn’t walk by today without buying a ticket…something in me had to have some hope.

Maybe that is what it comes down to, we hope for the right candidate and one who won’t lead to harm and for dreams to come true. Perhaps we should be thankful for some of the things we all take for granted – like a dollar and a dream.

Hope is something to be thankful for even though it may never come true it leads us down a path where anything is possible, the right candidate, the dream and hopefully a cure for Cushing’s disease. And hope for about another million things that I couldn’t list if I wanted to since we just do them without thinking.

So for today, be thankful you have hope…for whatever it is…

Everyday Thanksgiving

It coming to my favorite holiday and my favorite time of year...Thanksgiving and all the holidays that follow. I think it's a good time of year to remember how much people mean to us - both as a reminder to ourselves as well as to those around us. Maybe I am just in a sappy mood swing because of my Cushing's or maybe it is because all the people around me this past year have been so wonderful....whether they understand what is happening or not. And let's be honest - some have not...not I forgive you - I know how hard it is to support something you don't understand.

Last night I was watching TV, as my usual habit when I can't sleep, and had to call someone near to me and tell them how much I can't wait to share my favorite time of year. I can't wait to share it with all of you who have held my hand through this and those of you who don't even know me but send me emails of encouragement.

Anyway, this past year has been the hardest in my life. And yes my family has had its share of bad luck with my mother's brain tumor and my grandmother's cancer and numerous other deaths and horrible occurrences; so for me to say this, may be difficult for some of you to understand. The reason it's the most difficult is because with all the other people in my life I could send a card or call to tell them I love them and even take time out of my life to take care of them during their time of need. I could do something and help. It is much harder to do something for yourself. You look in the mirror everyday and tell yourself that you will make it through all of this and swear you will change the world if you do...and I plan on doing something but I'm not sure I'll save the world. Some have already said I have done something great just by being so public about my disease. Some say I have helped others to understand a horrible disease and what happens to the person going through things and others just take a step back and are thankful for their health. it is true, if you don't have health you don't have much.

So everyday I try to help myself. Whether it is taking my meds or going for a walk. No matter how hard it is I try to do something everyday. I have even forgiven those who I held so much anger and hatred for many years. I guess that helps us both. And probably for the first time in my life I know who I really am by letting go and grabbing at things that are very important to me. That's harder said than done - let me tell you. And I have my days where i slip but then I remind myself I have larger problems than being angry. Even my doctors and pharmacists have noticed my change in attitude since this all began.

I "pray" everyday that I get my surgery but also for those like me who need it just as much. And I'm thankful for the friends that I have kept and for the new ones I have made, and those from the past who have been there in my time of need. Even those who I have never met in person and only through my site.

Today I decided to say thanks for something everyday until Thanksgiving...and today I am thanking all of my friends for your little emails, cards, prayers, and everything else you have given me. I couldn't help myself without the help of you, my friends.

So thanks today for my friends!

Not Moving Forward Yet

I finally was feeling well enough yesterday to drive the mile to the hospital to get my labs done to confirm what we already know is true. They should be back by tomorrow or Monday at the latest. Then I can take those and go for my detailed testing with the specialist in Boston.

My new endo still has not gotten any paperwork from the hospital so I placed some calls. I guess a little added pressure can't hurt. We NEED those to get me in with the next specialist and get this thing out of my head. The longer it takes the longer my recovery and hopes for a normal life linger. And, the harder it will be for me to get my life back. At this point it feels hopeless some days…and then there are days like today where I won’t let it rob me of everything I have worked so hard for.

I was hoping to take psych classes part-time at the local college – only one at a time. But, it’s too late to appeal for financial aid. So I guess others with rare disease will have to wait for my certified help. I continue to chat with those going through the same struggle as I am. It feels good to help them and answers some of the questions based on what I have already gone through. I can’t wait until I am better so I can truly help others like me.

Anyway, they changed my meds and I am feeling a bit better. It it still hard to get off the couch and I have lost 14 pounds since I can’t keep any food in me still. Hey, I guess it’s one way to lose this weight because that is also on hold until I have surgery. I’ll just keep growing and growing. I have to say that is still painful and the tell-tale purple stretch marks are spreading across my breasts and abdomen.

Well I have to go lay back down for now while I continue to wait…and wait…