I feel like a dram queen every night. I know, me?!?!
The Prednisone has been great giving me energy and keeping the zzz's away, but it hasn't been great opening up my tight lungs.
Last night I started having a small, tolerable, panic attack because I was about to do my FIFTH breathing treatment for the day, only 2 hours after the last one. I NEVER do that!!! But I was about to go to bed and my lungs were so sore and hurt so much, and were so tight, I wanted to try and open them. Didn't work. As I climbed into bed next to P, complaining about the pain and the uncomfortableness, I felt like some drama queen looking for attention...
We got home from our cabining weekend away around noon yesterday. I immediately went into Prednisone induced overdrive cleaning and putting things away. The laundry room shelves got re-arranged. The TV stand in the bedroom got cleaned and sorted. The floors were vacuumed. The fridge was pulled out and I scrubbed behind it as well as the whole outside of it. 5 loads of laundry were done (4 sorted and put away). And we took Major to the park to play for a bit. All of that - besides the laundry - were done by 6pm.
I know I overdid it. But we relaxed on Saturday and my lungs were having a hissy fit then too. I am going to TRY to take it easy today, exercise, crochet, read for classes, and see if my lungs don't want to jump out of my body by 10pm again.
I also wish CF doctors could feel this pain and understand that yes Motrin on a daily basis in the dose I was taking is not fabulous for my kidneys/liver whatever, but fuck man, MY LUNGS HURT.
I was able to get an appointment for June 25th to follow up with the regiment I am on. She said 3 weeks when I left but the scheduling was all screwy so I said I would call end of this week to schedule after July 1. Decided to make it exactly 3 weeks (which ironicly the appointment I made is the same one I cancelled to go in last week to see her), so that if this does not help, I can get in to the hospital and start IVs before my 2nd summer class starts July 9.
Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts
Monday, June 10, 2013
Saturday, May 12, 2012
Home Again
I got home around 8:30 last night. The hospital stay was pretty uneventful.
I had the PICC placed on Tuesday, and Wednesday they had to pull it out 4cm. Apparently the home health company has a requirement and though the PICC team was OK with the placement, the home health would not see me unless it was pulled out a bit. I was honestly expecting way more than what it was with the pull out. I never had them do it before. She basically did a dressing change and just pulled it out some. How ironic that THAT is my biggest fear with dressing changes. Them pulling it out haha! At least I know I won't die or have a heart attack from it now. The thing I don't like is now it sits out really far from the insertion site. That makes me nervous with cleaning it and all. I might have to ask if they can tape it, just for my own sanity, when they change the stat-lock.
Health wise I feel the same. My cough is less but as far as the lungs go....still hurt....still SOB....still tight. IVs don't combat that though. Last night I had a coughing fit and I turned the same color as my bright red tank top. P said "hmmm you sound great babe, sure you were in the hospital?" Pretty much sums it up. It's only been 5 days of IVs though so I am expecting me to feel much better by the end of the 3 weeks. Also, they have me on a different IV this time. Usually I am on Tobra and Ceftaz. This time it is Tobra and Zoysn. I haven't had any real side effects from the Zoysn except alternating liquid poo with no poo!
Also while I was in I had an overnight O2 study done. Wait what? Didn't I just have one like 2 weeks ago? Yes that is right. I DID have one done. But guess who has NO record whatsoever of having it done? Apria. Yeah bastards. Not too big of a deal getting it redone but still. How can you have NO RECORD of it AT ALL? Anyway, I de-satted below 88% a bunch of times so I had O2 delivered last night. Its a smaller concentrator than I had last time and now I have funky green tubing! No tripping over it in the middle of the night now! I am back to using 1L with sleep and still none with exercise unless I decide to start the couch to 5k plan again. Running, jogging, and inclines make my O2 plummet.
Sometime overnight while having the sleep study done, I must have slept wrong and pulled a muscle in my back. The lower back, right around where the back indents just slightly about the butt, it hurts. And I mean HURTS. I didn't even have this much pain with my hysterectomy! I could hardly move Thursday and Friday. Tylenol does diddly for me. I took 4 Motrin when I got home last night and I felt much better. But I woke up around 7am (to do my IV) and again could barely move. So I think I might be taking Motrin 3-4 times a day to keep this pain away until it works out on its own. And hopefully that is soon!
That is my update for now. I have a clinic appointment this upcoming Wednesday to see if the IVs have started to work at all. AND I am done school for the semester! Classes start again the 21st, but I have 2 weeks of blissfully nothing to do! YAY!
I had the PICC placed on Tuesday, and Wednesday they had to pull it out 4cm. Apparently the home health company has a requirement and though the PICC team was OK with the placement, the home health would not see me unless it was pulled out a bit. I was honestly expecting way more than what it was with the pull out. I never had them do it before. She basically did a dressing change and just pulled it out some. How ironic that THAT is my biggest fear with dressing changes. Them pulling it out haha! At least I know I won't die or have a heart attack from it now. The thing I don't like is now it sits out really far from the insertion site. That makes me nervous with cleaning it and all. I might have to ask if they can tape it, just for my own sanity, when they change the stat-lock.
Health wise I feel the same. My cough is less but as far as the lungs go....still hurt....still SOB....still tight. IVs don't combat that though. Last night I had a coughing fit and I turned the same color as my bright red tank top. P said "hmmm you sound great babe, sure you were in the hospital?" Pretty much sums it up. It's only been 5 days of IVs though so I am expecting me to feel much better by the end of the 3 weeks. Also, they have me on a different IV this time. Usually I am on Tobra and Ceftaz. This time it is Tobra and Zoysn. I haven't had any real side effects from the Zoysn except alternating liquid poo with no poo!
Also while I was in I had an overnight O2 study done. Wait what? Didn't I just have one like 2 weeks ago? Yes that is right. I DID have one done. But guess who has NO record whatsoever of having it done? Apria. Yeah bastards. Not too big of a deal getting it redone but still. How can you have NO RECORD of it AT ALL? Anyway, I de-satted below 88% a bunch of times so I had O2 delivered last night. Its a smaller concentrator than I had last time and now I have funky green tubing! No tripping over it in the middle of the night now! I am back to using 1L with sleep and still none with exercise unless I decide to start the couch to 5k plan again. Running, jogging, and inclines make my O2 plummet.
Sometime overnight while having the sleep study done, I must have slept wrong and pulled a muscle in my back. The lower back, right around where the back indents just slightly about the butt, it hurts. And I mean HURTS. I didn't even have this much pain with my hysterectomy! I could hardly move Thursday and Friday. Tylenol does diddly for me. I took 4 Motrin when I got home last night and I felt much better. But I woke up around 7am (to do my IV) and again could barely move. So I think I might be taking Motrin 3-4 times a day to keep this pain away until it works out on its own. And hopefully that is soon!
That is my update for now. I have a clinic appointment this upcoming Wednesday to see if the IVs have started to work at all. AND I am done school for the semester! Classes start again the 21st, but I have 2 weeks of blissfully nothing to do! YAY!
Friday, March 9, 2012
Sleeping
A friend of mine posted about sleep patterns with advancing stages of CF and the amount of sleep needed. It got me thinking. Am I sleeping as much as I NEED or as much as I WANT? And that sleep I am getting, is it detrimental to my health instead of helping?
I usually go to bed around midnight and wake up around 6:30 when P gets up. They leave around 7:15 and I go back to sleep. Sometimes right away and sometimes it takes over an hour. Lately its been the latter. I have been having some sleeping issues and I don't like it. Starting with waking up a few times a night. This is not normal for me at all. Then not being able to get back to sleep after they leave in the morning. Its brutal! I even upped my Melatonin intake to try to combat it, but to no avail.
Why do I sleep so much? Do I need to get the 10 hours I aim for? Or do I just like sleeping that much? And if it is the latter, am I harming my body by sleeping that much more?
I have to wonder if I sleep because I am bored. Let's think about this. What else am I going to do during the day? Watch TV? Shop? Surf the net? Its not like I have a slew of friends I can hang out with, or family I can visit. Crafts take money, which I am lacking on. School work only takes up so much time. So maybe I sleep so I don't have to face the boredom of not working. Its very possible. But sleeping that much when I don't need to can't be all that great for my health. Sure rest is rejuvenating, but too much is harmful....right?
Maybe I need to just get up when I wake up and then the restlessness will go away. If I get bored then I can figure something out.
I need to win the lottery!
I usually go to bed around midnight and wake up around 6:30 when P gets up. They leave around 7:15 and I go back to sleep. Sometimes right away and sometimes it takes over an hour. Lately its been the latter. I have been having some sleeping issues and I don't like it. Starting with waking up a few times a night. This is not normal for me at all. Then not being able to get back to sleep after they leave in the morning. Its brutal! I even upped my Melatonin intake to try to combat it, but to no avail.
Why do I sleep so much? Do I need to get the 10 hours I aim for? Or do I just like sleeping that much? And if it is the latter, am I harming my body by sleeping that much more?
I have to wonder if I sleep because I am bored. Let's think about this. What else am I going to do during the day? Watch TV? Shop? Surf the net? Its not like I have a slew of friends I can hang out with, or family I can visit. Crafts take money, which I am lacking on. School work only takes up so much time. So maybe I sleep so I don't have to face the boredom of not working. Its very possible. But sleeping that much when I don't need to can't be all that great for my health. Sure rest is rejuvenating, but too much is harmful....right?
Maybe I need to just get up when I wake up and then the restlessness will go away. If I get bored then I can figure something out.
I need to win the lottery!
Saturday, March 19, 2011
Lazy or Tired?
How do you determine which is you?
This is something I have been wondering all week as I slept 13+ hours a day. And even taking naps. Spending more time asleep during the week than awake can make one wonder WTF is going on.
While I am FINALLY feeling a bit better, more energy, less mucus etc, I still wonder why I slept so much. And if I was just being lazy, or if my body really did need it.
This feeling hits me quite a bit. And not just with sleep. With other things as well. Like exercising, taking the sheets off of E's loft bed and washing them, walking the complex etc. Sometimes I wonder if I use my CF and being tired or lacking in energy as an excuse. But that I use it deep down inside so I think I have no energy when really all these years of slowly not being able to do things has made me lazy. For example, I hate steps because they make me cough so I avoid them. Yet when forced to walk the steps (like last weeks clinic when the garage elevators didn't work and you didn't know till you parked on the top level) you can do it, albiet slowly and painfully.
I could walk the complex daily, but I don't. I could drive to the lake and walk parts of it, but I don't. I really could get back on a horse and ride, but I don't.
But WHY don't I?
Am I scared of the result? That I will realize I CAN do these things? Or that I will realize I really CAN'T do these things? Which is it?
The only way to find out is to actually do it. And this summer, my goal is to walk parts of the lake when its not 100 degrees out. Maybe I can start there and see where it leads me...
This is something I have been wondering all week as I slept 13+ hours a day. And even taking naps. Spending more time asleep during the week than awake can make one wonder WTF is going on.
While I am FINALLY feeling a bit better, more energy, less mucus etc, I still wonder why I slept so much. And if I was just being lazy, or if my body really did need it.
This feeling hits me quite a bit. And not just with sleep. With other things as well. Like exercising, taking the sheets off of E's loft bed and washing them, walking the complex etc. Sometimes I wonder if I use my CF and being tired or lacking in energy as an excuse. But that I use it deep down inside so I think I have no energy when really all these years of slowly not being able to do things has made me lazy. For example, I hate steps because they make me cough so I avoid them. Yet when forced to walk the steps (like last weeks clinic when the garage elevators didn't work and you didn't know till you parked on the top level) you can do it, albiet slowly and painfully.
I could walk the complex daily, but I don't. I could drive to the lake and walk parts of it, but I don't. I really could get back on a horse and ride, but I don't.
But WHY don't I?
Am I scared of the result? That I will realize I CAN do these things? Or that I will realize I really CAN'T do these things? Which is it?
The only way to find out is to actually do it. And this summer, my goal is to walk parts of the lake when its not 100 degrees out. Maybe I can start there and see where it leads me...
Wednesday, December 8, 2010
Really Effin Frustrated
I had my clinic appointment again yesterday and I left feeling really frustrated and annoyed. I felt like nothing was accomplished. My PICC line was pulled and I got some information about a study I am going to do, but other than that, it was almost pointless.
There were a few good points and I should explain those first before I begin my tirade on everything else. My lung function is back up almost to baseline. I blew 1.31L, 45%. My highest is still only 1.45L so I am not too far behind. That was also a fluke in my opinion, as most of my numbers range from 1.30L - 1.35L. So technically I am baseline. Because of my numbers being back to normal, they pulled my PICC. I am looking forward to my first PICC free shower in a little while! I am also no longer culturing Steno Malt. My last one was free of that, though I did culture Class B strep. And the one before that I cultured Aspergillus (spelling??). Both along with my normal PA.
Now for all the annoying, why I am so frustrated things.
First was the results of my sleep study. I didn't de-sat below 89%. This means that my insurance will most likely refuse to pay for my O2 concentrator. She said that I could probably use 1L at night and it wouldn't hurt me, but the chances of insurance allowing me to keep it are slim. Even though I qualify for O2 with exercise, needing 2L. She also said that when I am feeling run down and sick I will definitely need O2 with sleep. Great, thanks, this is why I didn't want to do the study while on IVs and HEALTHY! Now I will have to fight my O2 company and insurance to have them pay for the concentrator. Just another headache that could have been avoided. I have been using O2 for over 2 years now and I sleep like shit when I don't use it. My blood gasses are all normal so I don't see an issue of using it.
My second cause for annoyance is that I am STILL running night time fevers. Now I know a little higher temperature at night can be normal. But I don't see how 99.6 and 99.8 are normal. IT'S NOT NORMAL FOR ME! I run low, always have. Even at night I would be around 97-98 tops. So to jump 2 degrees just isn't right. Maybe I am over reacting I don't know, but I want an answer and she didn't seem to have one. Her response - OK.
My third and final issue is this wretched pain I am having across my chest. Sometimes it is centered directly on my sternum and shoots outward when I inhale. Other times it will go deep into my chest until it feels like it is going to shoot out my back. The pain was so bad on Monday night I was almost in tears when I went to bed. Motrin is helping it thankfully. When I asked about it she asked if I was doing any push-ups or heavy lifting. I said definitely not with a PICC in. I mentioned being out in the cold and walking a little bit and she replied, "hmmm maybe". Gee thanks.
I left totally annoyed, totally frustrated and wanting nothing more than to see Dr. H. again. He knows me, he knows what is normal for me, he knows that this all would warrant some type of response other than "OK". For this reason I am considering setting up an appointment while I am in Philly between Christmas and New Year's. I'll have to pay out of pocket for it, but I don't mind. I want to see him and get his opinion.
I know I need to be more assertive and demand answers but that has never been me. I hate rocking the boat. However, if I don't start I might not like what I have to deal with.
There were a few good points and I should explain those first before I begin my tirade on everything else. My lung function is back up almost to baseline. I blew 1.31L, 45%. My highest is still only 1.45L so I am not too far behind. That was also a fluke in my opinion, as most of my numbers range from 1.30L - 1.35L. So technically I am baseline. Because of my numbers being back to normal, they pulled my PICC. I am looking forward to my first PICC free shower in a little while! I am also no longer culturing Steno Malt. My last one was free of that, though I did culture Class B strep. And the one before that I cultured Aspergillus (spelling??). Both along with my normal PA.
Now for all the annoying, why I am so frustrated things.
First was the results of my sleep study. I didn't de-sat below 89%. This means that my insurance will most likely refuse to pay for my O2 concentrator. She said that I could probably use 1L at night and it wouldn't hurt me, but the chances of insurance allowing me to keep it are slim. Even though I qualify for O2 with exercise, needing 2L. She also said that when I am feeling run down and sick I will definitely need O2 with sleep. Great, thanks, this is why I didn't want to do the study while on IVs and HEALTHY! Now I will have to fight my O2 company and insurance to have them pay for the concentrator. Just another headache that could have been avoided. I have been using O2 for over 2 years now and I sleep like shit when I don't use it. My blood gasses are all normal so I don't see an issue of using it.
My second cause for annoyance is that I am STILL running night time fevers. Now I know a little higher temperature at night can be normal. But I don't see how 99.6 and 99.8 are normal. IT'S NOT NORMAL FOR ME! I run low, always have. Even at night I would be around 97-98 tops. So to jump 2 degrees just isn't right. Maybe I am over reacting I don't know, but I want an answer and she didn't seem to have one. Her response - OK.
My third and final issue is this wretched pain I am having across my chest. Sometimes it is centered directly on my sternum and shoots outward when I inhale. Other times it will go deep into my chest until it feels like it is going to shoot out my back. The pain was so bad on Monday night I was almost in tears when I went to bed. Motrin is helping it thankfully. When I asked about it she asked if I was doing any push-ups or heavy lifting. I said definitely not with a PICC in. I mentioned being out in the cold and walking a little bit and she replied, "hmmm maybe". Gee thanks.
I left totally annoyed, totally frustrated and wanting nothing more than to see Dr. H. again. He knows me, he knows what is normal for me, he knows that this all would warrant some type of response other than "OK". For this reason I am considering setting up an appointment while I am in Philly between Christmas and New Year's. I'll have to pay out of pocket for it, but I don't mind. I want to see him and get his opinion.
I know I need to be more assertive and demand answers but that has never been me. I hate rocking the boat. However, if I don't start I might not like what I have to deal with.
Thursday, December 2, 2010
Clinic Appointment and Sleep Study
Last night I had my overnight Oximetry study done. We want to make sure I am getting the right amount of O2 at night. Of course we had to do it during the course of IVs so my lungs are at their best. But the few times I woke up I was around 88-90% so I am sure I dipped lower while sleeping. I woke up totally exhausted, but with no headache luckily. That is also a "good" sign to me. The funniest thing happened too, when Peter's alarm went off. It startled me, just like it does every morning, and my HR jumped way up! Kinda funny to see it actually happen while also feeling it. Made me giggle.
Clinic was OK. My numbers have pretty much stayed the same. I was 1.11L two weeks ago and today I was 1.16L. I went from 38% to 39%. Most of this could be from having the tests at 1:30pm versus the mornings when I usually do. Tuesday is my next appointment where my PICC will be pulled so I am sure I will be back in the low 40s. And if not then, well, I don't know.
The NP also gave me the number for an ENT (Ear Nose and Throat doctor) so I can have my sinuses checked out. I might not think they are bad but the bugs that are up there can drip into my lungs and keep causing issues. As much as I DO NOT want sinus surgery, I will get it if the doctor feels I need it and if it will make me eligible for transplant at some point. Which was mentioned, that if/when I decide to be evaluated, I will have to have them checked and possibly worked on then. Better to have it done now while I am still relatively healthy.
Once I get my sleep study results back I will post them, and also I need to remember to ask about my culture on Tuesday. I forgot today.
Clinic was OK. My numbers have pretty much stayed the same. I was 1.11L two weeks ago and today I was 1.16L. I went from 38% to 39%. Most of this could be from having the tests at 1:30pm versus the mornings when I usually do. Tuesday is my next appointment where my PICC will be pulled so I am sure I will be back in the low 40s. And if not then, well, I don't know.
The NP also gave me the number for an ENT (Ear Nose and Throat doctor) so I can have my sinuses checked out. I might not think they are bad but the bugs that are up there can drip into my lungs and keep causing issues. As much as I DO NOT want sinus surgery, I will get it if the doctor feels I need it and if it will make me eligible for transplant at some point. Which was mentioned, that if/when I decide to be evaluated, I will have to have them checked and possibly worked on then. Better to have it done now while I am still relatively healthy.
Once I get my sleep study results back I will post them, and also I need to remember to ask about my culture on Tuesday. I forgot today.
Wednesday, April 14, 2010
The headache that won't go away!
For the past few days I have had this headache that will NOT QUIT!!!!
I don't know why I have had it and I have been popping Motrin every 5 hours (3-200mgs) and it lessens it but doesn't make it go away. Sleep doesn't help, eating doesn't help, relaxing doesn't help. And since I don't have health insurance right now I can't go see a doctor until MASS Health kicks in and I am covered. And since I am coughing it doesn't help the whole headache thing either.
I've also been SUPER tired lately. I am asleep by midnight every night (give or take 30 minutes). I wake up around 6:30 when P gets up and then go back to sleep when they leave around 7. Usually I will sleep until 9, 10, 11 and sometimes noon. Today I slept till 12:30, got up did treatments, exercised, felt nauseous so I went back to bed at 1:30 and slept till 4. I will be able to fall asleep tonight again because I am so tired. I don't know why this is either. And before the whole "maybe you are pregnant" thing starts (I mentioned my increased appetite on FB and someone commented about it) I just got finished my period today (sorry guys!!) so that is NOT what this is.
I just want this all to change and go back to normal so I can resume my schedule. I feel like I am slacking on housework and cooking. Though in reality I am not haha.
I don't know why I have had it and I have been popping Motrin every 5 hours (3-200mgs) and it lessens it but doesn't make it go away. Sleep doesn't help, eating doesn't help, relaxing doesn't help. And since I don't have health insurance right now I can't go see a doctor until MASS Health kicks in and I am covered. And since I am coughing it doesn't help the whole headache thing either.
I've also been SUPER tired lately. I am asleep by midnight every night (give or take 30 minutes). I wake up around 6:30 when P gets up and then go back to sleep when they leave around 7. Usually I will sleep until 9, 10, 11 and sometimes noon. Today I slept till 12:30, got up did treatments, exercised, felt nauseous so I went back to bed at 1:30 and slept till 4. I will be able to fall asleep tonight again because I am so tired. I don't know why this is either. And before the whole "maybe you are pregnant" thing starts (I mentioned my increased appetite on FB and someone commented about it) I just got finished my period today (sorry guys!!) so that is NOT what this is.
I just want this all to change and go back to normal so I can resume my schedule. I feel like I am slacking on housework and cooking. Though in reality I am not haha.
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