Growing Stronger Everyday

Life after steroids seems to be making me more "Dulcie" everyday. Perhaps they have a clue what they are doing now as I seem to be returning to my former self...but different. I think it would be strange to think that an event like this in your life couldn't change you. It has and it has made me stronger.

People used to love me for my positive spirit which was true; but false. I wanted people to think that my life was perfect because it is what I was taught - don't show your hurt and anger and protect yourself at all costs. Yesterday I went for an energy healing session and destroyed all the old Dulcie stuff and things that hurt me. I have found new strength in both my physical healing as well as emotional healing. Those are both long stories and will be told someday when I have hours to write. Besides they really don't belong in these pages because these are about my disease and defeating it. They are not about other personal struggles and battles I have had to fight.

But the strength I have found through this disease and my defeating it - my spirit will remain unchanged even after this is finally over. I give it another six months until I am fully better and back on my feet but it I'm determined to make something better of what I have learned.

Everday I notice a small change in my pain, or my hair or skin or something that is more myself than it has been in months. I have even been dropping weight quite rapidly without trying too hard. Yesterday's session gave me the time to reflect on what I needed even though I have sensed it all along.

It's strange the healer knew I was not religious but said I hold Michael the ArchAngel close to me and within me. I came home and looked him up - he crosses any religion and is not just about being catholic. She said that is why he is with me and why I have such strength, beyond that of many others. Perhaps it the reason I have made it through more trials and tribulations than many could handle. And no, I don't think it makes me special and I am humbled and thankful to have such a spirit and such a powerful being part of my life.

After yesterday I have never felt more full and alive and knowing. I know that all this may seem strange to those of you who have strict religious beliefs or who are not open-minded about the spirit world but I know more than ever that it is holding me strong against this disease and will continue to throughout it. I know this is my last hardship and I know that any others that pop-up will not compare and I will defeat them too.

I believe in "Dulcie" again, in my strength and in my positive spirit. I know that one day I will use it to help those who can not help themselves; I'm just not sure how. But that's for another day...

A New Approach

So the doctors that were supposed to be treating me in NJ ended up ignoring my complaints of Cushing's returning. The doctor in NYC agrees that the steroids probably induced Cushing's once again. It's true I have Cushing's once again and this time we have another approach. We hope the tumor in my head is inactive for now and that there is a large amount of scar tissue.

We have immediately removed me from steroids and I have been off of them for three weeks now. The removal of the steroids should reverse the steroid-induced Cushing's. After they have been flushed from my system which could take months to years I should return to normal and can stop taking the other medications. But mind you this will take time and hard work.

So far I feel a bit better. The last three weeks have been tough and I wanted to literally kill myself and then kill someone else. It was the hardest thing to do and I have many more drugs once my blood pressure and sugars return to normal. So I am sticking with this doc and little by little and hoping it is the answer to my Christmas miracle - just a little late. I just hope I can find a way to make it happen soon enough so I can return to work.

This is not an addiction to drugs as some people misunderstand but is a chemical reaction my body had to steroids causing me to have a second bout of Cushing's. Because of Cushing's I needed pain medication for the nerve and bone damage it has done, and blood pressure medication as well as diabetes and a number of other medications like Vitamin D and Calcium etc.

For those of you who doubt the damage to my body I would love for you to try to live with my pain and having to swallow pills and monitor my blood pressure and sugar four times a day. Just try feeling like you are having a heart attack and can do nothing to help yourself. You people are unforgivable and I hope you never have to experience a rare disease and be treated the way myself and other Cushing's patients have throughout our treatment and diagnosis.

I may never be able to come off the anti-diuretic since the damage done to me during surgery is reparable and will last the rest of my life. It may have also caused some of the other problems along with Cushing's. But we are working at it and hopefully I can stay where I need to long enough to get the care I need and the cure I desperately seek.

I am going to make it and am willing to do the work...but time is of the essence for me.

Bronchitis Here I Come

Last night I felt kind stuffy and wheezy in the chest. I was hoping it was just allergies or something but now I find out I have bronchitis...my doc is calling in antibiotics for me. She said with all the steroids that my body is producing that I am getting sicker and that it is likely causing me to develop the borderline kidney infection last week and then this week’s illness.

My cat is getting worse as well…he has another bald spot from stress grooming. I think it’s the change in environment with a new roomie and stuff. I have to call the vet if he continues to do this over the next month to get him some meds too. He is not used to being able to roam where he wants and we had to move his litter box because he wouldn’t go in his usual spot. I think it’s a change of smell in the apartment – it no longer smells just like us. Hopefully he hates Vaseline since the vet told me to put that on him because he is getting quite raw…but it appears he likes it. Now he’ll probably get the “runs”. More mess to clean up.

I had gotten another new fish a few weeks ago when the other one died and he is still kicking…he has a salmon colored body and blue watercolor fins. Very weird Betta fish and he is a snob. He only likes to eat little frozen fish shrimp. So I’m starving him for two days and then trying to make him eat the flakes since they have other nutrients the fish needs. He needs his veggies basically. It looks nice out today but I don’t want to make my lungs susceptible to any other diseases/cold/ etc. out there right now since I know a lot of things are going around.

I talked to the pain management doc and he changed my regimen slightly and is sending me the new pill prescription. I only take one pill for pain and I take it three times daily so he doesn’t see that I have any addiction problems. It’s something one worries about when it’s an opiod and there are addiction problems on one side of the family. He said as long as I don’t take more and don’t take it when it is not needed than he sees no problem and upon physical examination he sees no problems either. There are many medical articles about the use of strong pain medication not causing addiction in people who truly have pain and do not use it recreationally.

I’m still waiting for my NYC doc to call with results and the next steps. All my results are in I just have to wait for her to analyze it and call me back in a day or so probably. It shouldn’t be long to find out next steps. I have a list of symptoms since seeing her to discuss after coming off the steroids.

Anyway, enough rambling for today…

Horoscope = Stress Relief

I don't really believe my horoscope everyday but some days I do feel it might be telling me to do something. Todays said that I should write if I have ever felt the "right" to and if I have ever really wanted to write seriously. I haven't been writing much here lately because I found out some information over the holidays that pertain to my family and they’re sending my blog to various "doctors" to have me checked out.

Besides it is my one outlet that doesn't hurt anyone and lets me get out my stress. It helps me to say whatever I feel like and know that I am not taking it out on anyone; part of the reason I don't use names on my site. I have missed being able to yell and scream and get out all my pain and anger on this site and while some see it as depressing or angry it helps me to deal with all that is happening to me. A 17 month fight is not something anyone can just walk through unscathed emotionally or physically and my disease happens to do both.

When you have little exercise and other things to do to let stress out it hurts to have someone try and take it away from you with threats. I also do meditation and have tried to do some painting but that makes a huge mess and I don’t have that much energy to do it all the time – the cleaning up is the worst part and now that my second bedroom has become just that with a roommate I don’t have an office/studio space where I can leave it all out and do it as I please. I love to paint and do other arts and crafts. I was serious about making blankets but the email I sent to my friends wasn’t taken very seriously – I sent it out so I could make some extra money to help pay for my treatments. They think because I made money that after more than a year without a paycheck I should be able to live like I did before. My job does not give me disability so all I receive is Social Security Disability. I’m allowed to make close to 1k in outside funds but I can’t work outside my home so I thought making blankets would be an easy way for me to earn cash at my pace and as something that I am physically allowed to do. If you’re interested in learning about my blankets just ask and I can email you the information.

I can no longer cook to relieve stress (I used to prepare chef meals for fun) but these days I can’t remember that I am cooking much less remember to take my medication. So really this page represents a place for me to vent without hurting people and to help me relieve my stress. It isn’t always going to be positive and most often not, but it does help get things off my chest.

So look forward to more writing from me and hopefully some more funny ones since I will not allow anyone to take my writing/stress relief away from me. And, while my writing here may not be perfect it’s not meant to be; it is meant to be a journal that I can refer to about my various medical treatments and life as well as stress relief.

Brittle Bones

Well I have a lab update for you all...my bone test that I did right before Christmas came back today. It turns out that my docs were right, I do have severe bone loss. I have osteoporosis in my back and osteopenia in my hips. I believe she also mentioned small fractures in my lower back. No wonder I have pain! My new endo in NYC will have to decide whether or not I should get treatment for it or what they are going to do. It probably depends on my surgery date and stuff but hopefully they can do something since my bones are my grandmother's age.

I should watch that I don't fall and that I do not put too much stress on my bones. Looks like no marathon for me anytime soon. All quite ironic since my grandmother just had her hip replaced this week...must be the time for it. My doc did say that I shouldn't have ti with my prior history of working out and diet with lotsa dairy...so this really is just another sign of Cushing's...

I'll let you know what they say and when I get more results back...

It's 4 am and Cushing's Symptoms Are Back

It is 4 am EST and I am wide awake and sick of watching TV. I even went for a walk and ran errands today so I should be able to sleep. Since stopping steroids the Cushing's symptoms have come back so there must be something to what the new doc said when she mentioned that Cortef (the drug form of steroid I was on) was suppressing my ACTH production and therefore my cortisol production.

Since coming off the Cortef almost two weeks ago my Cushing's symptoms are back with a vengeance. Not only has the insomnia come back but the diabetes has gone a bit more crazy, the blood pressure is out of control, heart palpitations are back, increase in strength and frequency of headaches, profuse sweating, hair falling out, increased bone pain, hot flashes and night sweats, unexplained mood swings, poor concentration and memory, and rashes, including heat and bruising has also increased dramatically.

Whoever my Dad paid to read this is probably having a field day trying to figure out if I am insane or have a drug problem. I don't believe I have either since most of my meds are for something other than pain - blood pressure, diabetes, bone health since I have osteoporosis and rapid bone loss.

My report on my bones came back and it sounded from the message that it wasn't good and more tests need to be done but of course I can not reach the doctor to find out what is happening to them exactly. But I already had heard that from several docs so it does not really bother me.

Anyway, I stocked the refrigerator with the usual veggies, fruits and low-fat proteins and still don't find anything I like to eat other than my cream of wheat and oatmeal. I've always eaten healthy and taken care of my body so this isn't a change I just am trying to stay positive and not have to stop a bad chocolate habit after this is over. And no matter how much pain I am in or how tired I try to get in at least one daily walk and sometimes two; even if it is just around the block. I'm not allowed much since the bone thing has them worried I will break one if do anything more strenuous. But hey, at least I try.

Since sleep is rare, the doc did suggest I get it when I can and so I do. Usually only a nap here and there that lasts about 15 - 45 minutes. I'm getting about four hours maximum a day now between the naps and trying to sleep at night. I wish someone would give me some writing or something to do at this hour since I am wide awake and need the cash...at least I could make good use of this time. But for now I guess writing here and in my journal will have to do since I am STILL not allowed to work. I am tellng you this sucks because I am running out of hobbies to do at home and only have so much energy to do my walks and household errands.

I am trying to read several books but so far only one is written simply enough for me to read - no hard plots to follow and not to many chracters. I am reading A Million Little Pieces By James Frey and his stay at drug rehab - let me tell you that man needed it more than anyone I know. But it is a good read and I can not wait to get to the end.

Well, I am off to try to get some more sleep, or at least try...more later.

PS - I had very few problems coming off the steroids since I was already running high, I know some people were worried it would endanger my health but I am doing well