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Not sure what is going on with me
Hi,
This morning I am realizing some things that I don’t think I have been able to face before. Yesterday something happened that I can’t explain, and now my family knows something is very off too.
Yesterday I went to the office supply store to get some faxes sent out. I intended to do a few more errands but I suddenly felt very tired so I decided to go home instead. Next thing I know – I am in the garage and behind the wheel with the car still running and my son is tapping on the window asking if I am ok. Apparently I fell asleep right there or something. He is freaked out – what if he had not been home? WHat if I had closed the garage door before turning off the car? I came inside the house and went straight to bed. I slept the rest of the afternoon, most of the evening and most of the night. And I still feel exhausted.
In November I started having ascites on my MRI. They did not feel they needed to investigate in any way. Since then my appatite has dropped and I usually just eat potatoes or rice cereal once a day. It helps reduce the vomitting. I have had a UTI and just finished a week of Cipro but I think I may still have infection as the hot and cold flashes started again about a day after I finished the script. As far as the exhaustion, about half the time I do not even get out of my PJs. I usually sleep alot on and off and seem to have days and nights mixed up at times. Much of the time I am damn near out of breath even when I have not exerted myself. Other odd things are off too.
Today I am calling my Drs – there is the urologist, the oncologist and the general practitioner. Chances are all 3 will say to call the other – that run around is so old. But someone is going to have to deal with this asap. I am going to push for moving up my next round of MRIs, labs etc. as we must get to the bottom of this now.
On the emotional side – I am afraid of what is happening. My world has become smaller with all the issues going on and I am not ready to give up driving. My family is freaked out and that adds to my own freak out. I am scared enough to get in my drs faces and demand some definitive plan to sort this out and not settle for less. I am afraid of what has changed and what it means. -
11 Replies
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Sorry, Pat….I wasn’t clear in my thinking. What I meant was, I hope she got a heavier dose than was prescribed for me. I wouldn’t want to mess with your doc’s recommendations, Holly!
Stephany in Iowa
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Holly don’t go with a heavier dose especially since you’re on oxycontin…just use the minimum and see how you do. Dosage is also related to weight. If the doc has ok’d 0.5mg just go with that for now.
Pat -
Hope you have a better night tonight Holly.
Anne
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Okay, Holly, this is in NO way like what you’re going through, but I do remember that after my son starting sleeping through the night at 2 1/2 years old, that all of a sudden, I “woke up” and wondered what had been going on. It was that insidious and pervasive.
We’ll be here, waiting to hear how it goes. Ativan didn’t do a thing for me when I used it for flying, so I hope you got a heavier dose.
Stephany in Iowa
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Hi :)
The dr is an internist at the major facility….My insurance is pathetic so I have been seeing the gp I had for 15 years but he is not in the plan. My portion of out of network maxes around $8,000 so I really try to use the network. In July I will have medicare and have more options I hope.
As far as how sleep deprived I am…I have been telling drs all along what this is like – and all they have told me is that the diversion is what it is and I will adjust. At night I wake up on my own – no alarms ever. Cathing and having a bag would let me sleep becuz no urge to go. But I would need a sleeping pill to ignore the need to get up if I used a pull up. (And yes, Julie, I do prefer the pull ups as well).It just seems weird that it appears to have taken almost 2 years to fatigue me like this !! So far I have made no changes but tonite I may get out my pull ups and take an ativan to see if it helps.
With all that is going on I just hope they figure out some stuff soon. The zofran has made a huge difference – I ate a fold over chicken sandwhich today! Seriously, sometimes I wonder if the new normal is just as elusive as the old normal. I try to be reasonable in my expectations, and I also try very hard to not be a pain in my drs ass, but somewhere a balance must exist where I function better than this.
Thank you all for sharing and caring – it really helps me know I am not crazy. LOL God Bless, Holly
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No kidding, Holly…sleep deprivation would explain a LOT! Did you decide to cath and bag for a couple of nights? Let us know if that makes a difference. Between the diflucan and the cath and the other stuff it sounds like he knows how to make a plan. How did you find him?
Stephany in Iowa
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I didn’t realize that your sleep has been so broken. That make it difficult to accomplish anything. I have a mind like a sieve when I don’t sleep well. I hope the Zofran helps. Dick responded well to it.
Regarding diapers I found that we had the best result when used a pull up depends with a diaper for a toddler inside as they have the most absorbency. I bought the ones for the highest number of pounds. Dick was able to get about 5 hours of rest at a time then. I had talked to his urologist about having a permanent cath but he recommended against it as catheters are a really big source of infection and we didn’t want him to have any more UTI’s if we could help it.
Blessings, Julie
Volunteer Coordinator
ABLSC
Holly
Thank goodness it sounds as if someone is listening to you at last.I worry about you and you are in my thoughts every day.You seem to have had such a raw deal with your care lets hope this is a turning point.
Its no wonder you are shattered if you are having such disrupted sleep I agree with your doctor you must do something to get a good night or you wont have the strength to cope with the day.
Take care I will try and catch you later Lisa xxxxxxxxxxThank you for the ideas and the understanding – it helps…
Well I drove to the city and met yet another gen dr. He seems decent and took the time to gather info and hear me. He has ordered some endoscopy stuff, labs and is also conferring with my specialists. He could see in the notes that some of these issues began as far back as last summer and have only become worse with time. He is going to find out what the thoughts are with the ascites. During the exam even I noticed that in my groin where the lymph node is is twice as swollen as before. He prescribed zofran to help with the nausea and puking.
He also is concerned with my sleep – I am up to pee almost every 1 to 1.5 hours at night so I have had only broken sleep for almost 2 years. He thinks I may need to cath and bag or take a sleeping pill and diaper up every few nights to get a grip on the fatigue. He thinks possibly that may have been what lead up to my garage experience the other day. After looking at my lab history, he also said I could have problems like that if my body is not filtering out wastes properly. So that will be getting checked too.
Today my urine culture came back and I have yeast in my urine. No other bacteria grew so they do not think it was a contaminated sample. They are deciding if I should be on diflucan for a few weeks
Well, overall I feel heard atleast. I wish I felt better but I am hoping I am another day closer to that. I hope all are well tonite – God Bless
Julie makes a good point. A UTI can wreak havoc with your brain as well as your body. Let us know what you find out.
Stephany in Iowa
I hope the fatigue is a temporary glitch. Still when you are that fatigued you need someone to run interference for you. It is hard to one’s own advocate. I think you are right to check the possibility that you still have the UTI given the chills and flashes. The only time I had a sudden onset of fatigue was when I got the flu. I get my flu shots every year as that was a very unpleasant experience. I’ll be praying for you.
Hugs, Julie
Volunteer Coordinator
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