Daily Check In Thread For All... #135

I was able to bring my daughter home from the hospital yesterday. Now that she is able to take her Trazadone and was in her own bed, she finally got some decent and much needed sleep!

Her blood sugar remains good, still no sign of diabetes! Her appetite is pretty good and she is able to smell/taste at least some of the time.

Her headaches are still coming, but the pain medication has been helpful. No sign of continued leaking of csf. She is not allowed to lay flat.

It will be weeks before we know that her cortisol is coming and staying down. Months before all of her hormones will be in production again, but it looks very promising already.

Follow up with endocrinologist this week and with the surgeon next week.

I'm exhausted.

Belated Happy Birthday Myself! Hope you had a good day.

UA

Andrina, I'm sorry to hear you are not doing good. I don't know exactly what that means. I remember more than once, my sponsor would say to me (after my diatribe) "Okay, you've told me how you feel. Now, tell me what you're planning to do about it." So, I ask you...what are you planning to do about it?

As for me, I'm a nervous wreck. My daughter called her endocrinologist and during the conversation she asked about a 'stress dose'. The doctor's response was, "I gave you one before surgery." Period. That's it. Nothing about what she is to do "In the event of". You see, she has to take a daily dose of cortisone of some form as her body isn't making ANY now that the tumor is out. So, if she experiences stress, an accident or upsetting news for instance, her body CANNOT make more to compensate!

She also has not gotten a call back from the surgeon's office about when she is to start the nasal irrigation. There is nothing mentioned in the discharge instructions! No one showed us how to use this set up!

I'm frustrated and fearful. Part of my 'plan' is to post here, keep breathing, make some more calls today, ask the pharmacist for guidance on the irrigation kit, keep breathing...etc! I've also posted my concerns on a Cushing's site. Seeking guidance from those with experience has helped me very much here and I'm using that 'lesson' in other areas of life.

Andrina, you can too live without him. You just have to learn how. I am alone a lot, but it is by choice I guess. But once you learn to like yourself, it isn't so hard. When will your husband come home? Maybe pick up a project to do until he gets home.

I hope things get better.

Hugs, Karen...

Afternoon all,

been a few days again. I am really bad at posting daily anymore. I am super tired and believe it or not super bored! I know that I have things to do but this weather has got me in a rut. Ugh, we need the rain so thank the lord we are getting it but I am tired and cold and just blah when it is raining and cloudy. Anxiety is a bit on the high side and not even sure why..... Mysteries of life I guess. I am going to talk to my pdoc on my next appointment about changing my depression meds. I think it is time to switch, the pills work but not the best and I want to try something new. Well that is all I got going on.

Be well all and Happy I got your letter and pictures, thank you hun that is very sweet.

I've had a horrific morning, I went to the hospital for a test where they put a tube up the nose and down the throat but I was gagging and retching so much that I couldnt go through with it. I really needed this test to see whether my chronic nausea and pain is related to reflux, without it they can't really treat it.

I'm so upset by it and am feeling horribly sick from all the tubes as well which makes me feel even worse. I feel like I'm losing hope, if I can't make it through this test then there's nothing they can do for me. For now I'm just going to have to focus on getting my depression and anxiety better, and hope that the physical symptoms settle down when I hopefully get more on top of those :(

Hey guys,

Sorry I haven't been on very much lately. I have been here but just reading. Posting a little. Still have the virus hanging on but feel much better. Been kind of busy for the most part.

I hope all of you are having a good day. It is rainy here and suppose to get windy. Power will probably go out. I hope not though.

Take care everybody!!!

I think of you all often...

Hugs, Karen...

So glad to hear daughter is doing better, Pitmom!! That is terrific news.

Keep moving forward, Andy. Backwards never got anyone feeling stronger.

Karen-so sorry to hear of the illness. It's the time of year! We are cold and yucky here-so up where you are must be downright frigid. Be warm and be proactive. And whatever you do, don't get me sick!

Busy here, as usual. Job going well. Between work and trying to maintain my gym habit, I have very little time during the week. Even weekends over the past month have been eaten up with chores and resting. My colon has been causing a few issues,but so far nothing too bad. The gym has become necessary now, not only to maintain my energy over the workweek, but also to counteract sitting still for the entire day. I am having pain,but all said, it really could be worse. I really think it helps that work and the training class is so very busy and mentally challenging. I need that kind of engagement.

Going riding tomorrow, we hope,if the day is nicer. Today errands and the debate tonight, and reading about the attacks in Paris.

The global battle scares me.

Be well,all

So much for keeping the stress level down here. Someone, some coward, called the police and told them we had 2 unlicensed pit bulls here and that we leave them out all the time and they bark non stop. Well, both dogs ARE licensed and we never leave them outside unattended (as per landlord's rules) and the barking dog is in the backyard of the adjacent property! The Animal Control officer was quite impressed with how well behaved our dogs are and how clean we keep the yard. That does not take away the fact that my daughter was very upset by it all, got a severe headache because of it and had to go back to bed.

Lucky for the coward that they are not permitted to tell us who called.

It was no mistake. They knew there were 2 dogs here and they knew the breed. There is only one dog barking in the yard behind our community. They could have come and talked with either one of us. We would have cleared it all up. Instead, they called the police, who had to call the Animal Control officer. That's why I called them a coward.

My daughter continues to have a very stuffy nose/sinus. Must rinse several times a day to keep from getting an infection. She has daily headaches which are made worse by stress. Her hormones still being out of whack has her easily fatigued and in pain. She will have to face this for the next few months, at the very least. On top of that, there are still the spectres of serious complications from her inability to produce cortisol on her own and a potentially life threatening low sodium level. So far, she has been able to keep her sodium okay by adding salt to foods. She won't get the results of the first round of post op blood work until she sees her doctor on Friday. Her blood sugar is still higher than we would like to see but is being controlled by the oral medication. She has not had to use any injectable meds yet.

Thank you for asking.

Not good. 2:30a.m. daughter wakes me to tell me she has developed a fever! Called the doctor as directed in her discharge papers. Left a message. Waiting. Meanwhile, gave her Tylenol, fever has lessened. Infection is dangerous, can use up the oral dose of cortisone. Endocrinologist has NOT provided a 'stress dose'. Geez, I hate this!

Surgeon's office called back. Directed to keep taking Tylenol as needed. Rinse sinuses less. Have to pick up a prescription today. She has her follow up appointment tomorrow. Now, we are just waiting for the endocrinologist to call back.

Endocrinologist called back. She is to double her dose of replacement cortisone if the fever persists. Illness or stress could cause her to 'use up' her regular dose and leave her with none, which would be life threatening. So glad we now know what to do! I drove her up to the surgeon's office to pick up a prescription for pain meds. Back up there again tomorrow to have the surgeon check on the surgical site and the conditions in her sinuses. Praying it's not an infection. He didn't prescribe antibiotics because they may have to culture it first.