Marisa

Well I am having problems for the last week. I am having pains in my joints and muscles again, like when I was weaning off the hydro. In the morning it is a little better but the evenings are getting untolerable. Tried to call my PC this morning but have not been able to get through to her. I want to order salivary test, morning cortisol draw and thyroid tests. I'm so tired of all this, and my weight loss has stopped. How discouraging. Going to post on the forum see if I can get any advice. Hanging in there, Renata

Well once again its been a while since I posted. Now I am feeling better. Not there yet but definately better. I still have some aches especially in the morning when I get up. My right arm feels like I have carpral tunnel, my two fingers keep falling asleep. I sleep at night with an arm brace and take it off in the daytime. I believe it is getting better. I also have tennis elbow, and that started acting up, but I know not to pick up heavy things until the pain subsides. I stopped taking ibuprofen, because it too was an anti inflammatory and I did want my body to heal on its own. So far so good. My legs started swelling and my bp started to rise. I spoke with the mother of that has a cushings daughter and she said when she took any type of antacid prescription it made her bp rise also. I have taken Aciphex for about almost a year. In the beginning Aciphex was the only prescription that would make my lower legs swell minimally and I had forgotten that. So I stopped taking the Aciphex about three weeks ago, and my bp is normally 127/78!!!! I was so happy, and no swelling in the legs. It had been so high the doctors gave me two types of high blood pressure medicine none of which I ever took. I still have a relatively high pulse, it is usually in the high 90s, but there is stress in my life right now so I attribute it to that. My blood sugar used to be in the low 200s, I am insulin resistant. Once again they wanted me on Metformin, and I wanted to try to tackle each of these problems one by one, as I did the blood pressure. Well I found out that by not eating I was not losing weight. I never ate much before the surgery, and now I do not still. So from the advice of a diabetic dietician, I started to eat small snacks, high fiber, throughout the day. I still need to eat more and more often but I am working my way there. Everytime I snack healthily throughout the day, the scales start to go down...so far I have lost 12 lbs. I try to eat high fiber, good fats, and protein. It seems to be working if I can keep up the eating. I am starting to get small pangs of hunger, and that is when I eat a small snack. I am lactose intolerant, gluten is bad for me, as well as casein. I do not drink milk, or eat bread...yet! I am hoping one day I will be able to eat those again. I take aloe juice for my stomach ulcers, and so far so good. (no prescription antacid for me) I had to endure the rebound effect for stopping the Aciphex, but I just loaded up on Sugar Free Tums, and still have them handy just in case. I ended up having an aversion to most foods as the pains from eating them were horrific. So I opted to not eat much at all and pre surgery was gaining weight...a cushie symptom. However, back to my blood sugar levels...as stated previously, they were in the low 200s, it went to the 170s for a while, then to 140s, yesterday morning I tested it again and it was 135!!! So I must be doing something right. And I will continue to snack, and eat, and hopefully lose the weight and get my vitals in order...and WITHOUT MEDICINE!!! This is just an update from me....oh, but I am still taking Lorezapam on occasion for stress, (I mentioned lots of stress in my life) and I hope to one day stop taking that too. I am so happy to have had the surgery, and my hope is for all cushies out there to get the dx they deserve and get their "repair" so they will no longer have Cushings! Renata

Well as you can tell it's been a while since I have blogged. I went through withdrawals from weaning off hydro and the body aches and pains were very painful. I have found ibuprofen helps. On March 17th I had the ACTH stim test and the next day my endo called and said my right adrenal was working, and I could stop taking the hydro. I had weaned down to 5mg a day. Even now though I get pains in my body still....especially in the evenings. If it gets bad I take ibuprofen again! So far so good. I have begun to lose weight, however so slowly. Only 4 lbs so far. 60 more to go. Oh well someday I will get there. It still hurts to type at the computer, and walk, from what I have been told, it takes a very long time for the body to 'adjust' to not having the loads of steroids running through it. I can testify to that one. Others who have been through a unilateral adrenalectomy have told me the same things. It just takes time. Well so far 7 weeks have passed, and I used to wonder what it would be like on the 'other side of cushings' well I'm here. So there has been time going by. Sleeping is okay, some nights are good, some not so good. But definately better than before surgery. Around July I plan on getting a saliva test done to check my cortisol levels throughout the day and night. That is one test that showed high mignight levels pre surgery for me. I keep forgetting to take my picture now, and then I can have an 'after' picture like everyone else. Note to self: must take this picture...ugh! Well just wanted to update. Renata

Best night so far last night. took lorazepam and ibprofen and slept the most i have so far. Had a 2 and half hour nap today also. Wonderful feeling to sleep. so i guess i am ready and possibly on my way UP...? Just had to share the good news.

Well i am taking 20mg hydro in the AM and 15 hydro in the evening now. So far so good. taking ibuprofen for stiffness and soreness, and lorazepam to rest. I was taking some hydrocodone for pain but honestly, it makes me feel worse than why i am taking it. Ibuprofen does just fine. I still get dried out alot, needs lots to drink. My bp is great, and pulse is now staying under 100. Still having issues with blood sugar but will work on that next. I slept well last night, despite the soreness from turning over. And had an hour nap today. Much better. Even though when I woke up this morning I was feeling so bad wondered if hubby should take me back to the hospital? Endured the day and it actually was not as bad as it initially started. I am to go back to work March 1st. I hope this week proves to be a magical week and I feel like gangbustgers to go back ..... i really have no choice in this, I must go back or lose a weeks vacation in march, and lose my company paying my health insurance for march. Feb paycheck is already going to be short by a week and half. So you see my problem. Gotta get better FAST. Have an appt with endo on Thursday. We shall see what they have to say. I am 12 days post of but my left side of my chest/lung feels sore alot. especially when I take a deep breath. is this normal? i did have a left adrenalectomy. Anyone have any input please let me know. Thank you. Renata

Well last night was a terror. I could not sleep all night, and had pains that I guess were from not enough hydro. Although I did keep check on my bp and it was fine. today i took lorazepam and had a couple of naps. Trying to keep from getting sore....sometimes I wonder if I am healing or not? Is it my not being patient again???? Going crazy here..

Well so far so good I think. I did notice something special today! From the cushings I had a very red neck and chest, like a v-shape, before I knew it was cushings I thought it was a sunburn. Well guess what!!! It's gone! My skin is all the same color now. I was so shocked and happy. Yes I know it is one little symptom of cushings but its gone. I have lots of pains in my muscles in my chest, from coughing and possibly picking up stuff I should not. But I had this prior to surgery but its worse now. Feels that no matter what I pick up I pull those muscles. I know in time that will get better also. I plan on going back to work March 1st, and hope that I will be able to without a problem. It was a week ago Tuesday I had my surgery and now I can say I think everyday is getting better. Like I have said before, I do not have much patience with myself, but I am trying to learn No more cushings! Thats the main thing and I sure everyday things will be better and better! Just wanted to share this with everyone Renata

I'm back. Glad the surgery is behind me. The surgeon looked like he was so happy to know he did a good job. ? He was proud of himself. Was in intensive care from 2-9 to 2-11 then moved that evening to a regular room, then the surgeon comes in late that night and asks if I want to go home. Yes of course. So I was out three hours later. NO wheelchair either, I had to walk to the car right out of the hospital. Today is Sunday, last night I started having a fever, I know I have to stress dose and did so but was worrying I did not do it right. Guess I did as I am still here. My BP has been great, heart rate high until today I decided to eat quite a bit of salty chips until I could taste salt again, and my rate when to right under 100. Before this it was never under 100 but in the teens to lower 20s. I have pain today, cant sleep, wish I could. Last time I took pain meds was Thursday morning before they removed the morphine drip thing. After that I guess I had so much in my system still I was not in need of any. I am anemic, and have an appt with pcp tomorrow to get some blood work done. Been eating iron rich foods. Cant do much else. I am going from cold to hot and uncomfortable. I break the fever with ibuprofen before it gets too high, and I only have to double my steroid dose. So far so good. Fevers were last night and today. This evening I am clammy sweaty, warm but no fever. Incision area and left kidney area hurting some, guess I will get some pain medicine tomorrow. Right now I am taking normal dose morning 20mg hydro and between 3-4pm 5mg hydro. (this is normally when with fever I double that if the fever is within a certain range) I will update tomorrow after Dr. visit. I have to learn patience, I am 52 now and I guess do not heal as fast I remember But I think I am doing pretty good. Just wish I could sleep. Renata

Update on Renata Hi, I'm Renata's sister. She wanted me to let everyone know that her surgery went well.

They called me back, and schedule another pre op for Feb 8th. So I go there and stay there until the next day for surgery. I hope that nothing spoils it this time. I kept them up to date on what changes were happening to me and they never said anything. I hope the high and low bp wont affect things and the ekg, I had last time they didnt like so they gave me an echo, and I am guessing everything is fine to go. At least it was back then. Hopefully it will be again.

Well thought about it this past weekend about my pre op I had done on Dec 17th. Surgery originally scheduled for Jan 6th, but was messed up by the hospital oversight in no putting my name on the list for surgery that day. I had to go back home. New date for surgery is Feb 9th, next Tuesday....so I call the surgeons office and ask if the date of Dec 17th pre op was ok for a Feb 9th surgery. OH NO she says, certainly not. Well why didnt anyone reschedule me?????? Did they forget I exist???? Such morons. So she says she will try to get info today regarding another pre op and call me back this morning. Do I think she will? I have no idea. Each day passing is closer to the date ...i just dont want that to screw it up again..... I cant take it anymore. So she also says "maybe they will do a bedside pre op" hmmmm, i dont think so because my pre op last time they didnt like my ekg and i had to have an ultrasound, and had to be called back from half way home to go back and have it done that day. Ducks in a row???? I dont think so. If we do not keep track of everything this is what happens. I thought I was being overly cautious, guess its good to be that way. I like being a preventer, so that I can make sure things go right ahead of time by avoiding things or making sure they get done. My sign on should have been The Preventer!!!!! Im mad, I want to roid out, and rage ....but I stay calm while speaking with them because being sweet get us further...but I hate being sweet in this situation, can we say BRING ON MORE STRESS PLEASE?????

What you say is very true. If I can live with cushings I can live with anything. I just know I need some hydro during and after surgery. I dont want to crash and I know the nurses do not know anything. I'm trying to cover all my bases, and I have to rely on myself and who I 'train' as my patient advocate/s for me. Because being out after surgery is what scares me. I am very sensitive to anesthesia and that is what scares me a lot. But I am thinking positive and hoping to get through this successfully. Thank you for your input. It means a lot to me.

When I got home yesterday from work, I had a message on my phone from the surgeons assistant. First of all over a week ago I emailed the asst. with info on my crazy bp and blood sugar number...I had a few questions and never got a reply. This past Wednesday I called and asked to speak to the same assistant I email and they gave her my message which was: I wanted to know what the medic alert bracelet is supposed to say. Next I wanted to know where to obtain the emergency kit with hydro, or when will I get one. Those are the only two questions I had. My message machine at home had this reply. She stated who she was (remember too they know I work and have both a work phone and cell, but they call my house where I am not) then she proceeded to say "they do not have a prescription for the bracelets one normally orders them from the internet." Okay I know this, and of course did not get my answer. Now for the answer about the emergency kit with hydro, she says "you wont need any hydro after the surgery because you are not a bilateral adrenalectomy" okay this scares me a lot. I have no confidence in who is doing anything. And to leave a message like that without talking to me to make sure of what my questions were....need I say more. I dont know what to do as the day gets closer..... Cushings and too much cortisol, now worry more and more....how comforting.