What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
Cushing's Syndrome and Disease is different but also has so much in common. By definition that I have found Cushing's Syndrome is caused by adrenal gland tumors. Cushing's Disease is caused by pituitary tumors. There are also slight differences in symptoms, but that also depends on the person. Each person has their own set of symptoms, so will be like the "norm" and other will be strictly to that person.
So, what is Cushing's to me? I have Cushing's Syndrome. I had an egg size tumor on my right adrenal gland. Luckily, I was able to have surgery to remove said tumor. On the bad side, it is starting to really look like my left adrenal gland is not functioning at all. I have been trying to wean off of my hydrocortisone for several weeks now. I have gotten down to 10 mg in the morning and 10 mg in the evening. This is not going well for me. I feel like I am so weak. My body is starting to ache worse than before, from head to toe. I see spots and black dots in my line of vision. My pain meds are not working as well as they had been and the pain is starting to be intolerable again.
Cushing's is much more than just the symptoms to me though. It has robbed me of my life. Before Cushing's I was an active, happy, friendly, tolerant, wonderful, funny, average attractiveness woman. Now, since Cushing's has ravaged my body I am not the same, nor will I ever be the same, again. I am not active anymore. I do very little activity anymore. I used to go grocery shopping, go to the occasional doctors appointment, worked at the Library Center and absolutely adored most of my co-workers and patrons at the library. Now, I go out often, but only because I have to for all the vast number of doctors appointments I have now. I only go grocery shopping if absolutely necessary. I have found the joys of online shopping. It is so much easier than going out in public. At least this way I don't have to interact with others. I make myself go out more than I want to. I feel like as long as I can make myself occasionally interact in public than I will be ok. I have a psychologist and am working on my problems. I am on disability now. Disabled by the many diagnosis that I have now. It is a vast list. What started out as one or two things has led to about 20+ diagnosis and things that are now wrong with me. I don't laugh as much as I used to. I take everything way to seriously now. I don't let myself truly be myself anymore. I am a shell of the person I once was.
Worst of all is the damage this disease has done to my children. They are scared so much of the time because of me and my illnesses. They are always on guard, always watching to make sure I'm ok. They don't want anything happening to me. They are scared of me getting sick again and having to be hospitalized. I have been so sick and hospitalized way too much over the last 3 years. Now, my kids won't be totally honest with me. If they have problems, they don't feel comfortable sharing that with me because they don't want to add stress to me. They know stress can be deadly for me. They just want to keep me healthy, so they hide problems from me and act like things are good. But secretly they are in pain and hurting but not sharing that. They are scared I will die and then I won't be here for them. That is so sad and I just feel like it crushes my heart to know I have caused so much pain for them. I want them to be able to be young and carefree. Not so scared and worried and protective of me. I just them to be themselves, to be able to act their ages, and to come to mommy when they need me. Instead, they are protecting and taking care of me. This has got to chance. Cushing's has stolen my life and replaced it with a shell of the person who once was....
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