I had a rough day yesterday.  Really rough.  And it’s morphing into today.  I’m not sure what happened or what triggered it.  But I have some idea and when I get to this point I know it’s time to sit down and write.  I don’t edit my posts much…I just sit down and write.  So here goes.

I’ve had internal struggles in my head, conversations with myself, about how I shouldn’t be feeling a certain way.  Some of you know I started using a CPAP machine this week.  For reasons of OSA.  All due to my weight.  I’ve had a hard time accepting that this week.  But ultimately it’s a GREAT thing because my brain needs to stay as healthy as possible, what with the brain tumors and all.  With my oxygen levels going down to 54% during the night that’s not really good stuff.  So this is a good thing over all.  But the fact is my weight is the cause of all this.  If I wasn’t this heavy I wouldn’t need it.  And all week I’ve fought with myself, “Self.  You are a fat cow.  If you weren’t this big you wouldn’t need

One of mom’s stops!

this machine and your brain would be healthy, etc. etc.”  But then I go right back to, “Heather…you shouldn’t feel that way.”  This goes on and on. And has happened all week.  During the day, morning and night.

This week Mom is on vacation.  She’s having a blast I can only imagine.  Although it’s ridiculous I struggle sometimes with thoughts of, “What if something happens to them?” – and then I go right back to, “But Heather, you shouldn’t feel that way.”  I have this awful struggle all during the day, morning and night as well.  These conversations are constant, but not as incessant as the CPAP conversations I have in my head.

Then I have a conversation about my lack of money/job/freedom to do things I once enjoyed (like going to the movies or going out to dinner with friends.)  I feel guilty when I spend what little money I do have on necessities or a treat like lunch with a girlfriend.  Can you guess what happens next?  Fill in the blank.

Yesterday I had my counseling appointment.  And I have felt odd the last 2 days in the mornings with the CPAP machine.  I’m not sure if there is an acclamation period or something.  But as I went to the gas station to get some almonds to snack on (I knew I hadn’t eaten enough yesterday) I felt myself going to “Z”.  Going to the bad place.  I went to the ventricles in my brain acting up.  The water causing pressure and me having hydrocephalus again.  I could feel my anxiety rising.  This hadn’t happened in a long, long, time.  But I just went through the motions and said to myself, “Self.  You know some tools from therapy.  What can you do here?”

I remember Dr. K telling me the ventricles can’t just “freak out” on their own.  And that something (the tumors) needed to be pressing on the ventricles (like before surgery) to be causing pressure and making the water be diverted to cause hydrocephalus.  I talked myself through it and thought I was doing a good job.

Not so much.


10 thoughts on “Conversations

  1. Holy cow Heather, there’s so much on your plate right now. Lack of oxygen can cause terrible mood problems. I’ve seen this first hand with a relative. You ARE doing a good job. Ask your doctor if you can restrict carbs. It is the only thing that keeps me from packing on the blubber. I tried CPAP for sleep apnea and it was awful. Could not sleep a wink. Had to get surgery but I also had tonsils the size of golf balls. Hang in there.

    • Thank you for your kind words. I didn’t even complete my post; there’s another part coming. Carbs. I need to look into that. I watch my wheat intake because I’m wheat sensitive so I’ll eat organic rice cakes. That might be part of the problem.

  2. Heather – I have used my CPAP since 2004. The first night when I used a CPAP at my sleep study – I begged them not to take it away from me in the morning. I liked how I was finally able to breathe. Before the CPAP I stopped breathing 41 times within an hour. I was diagnosed with obstructed sleep apnea, with a few Central Apnea thrown into the mix. At a pressure of 11, my sleep apnea is well controlled. I haven’t lost weight – I did when I started the fructose intolerance diet – because of some testing – I went off the diet and pacted on 20 lbs. I am having hard time as well to lose the weight. The CPAP is not a cure to losing weight – it does help you feel better so you are able exercise, As I have been very sick exercise hasn’t been at the top of my list. I think I need a magic wand – wave it and the weight just disappears – if only that would work. I think your are doing a good job – keep up with use of your CPAP – learn to check your readings on your machine – to see that your apnea are decreasing – otherwise the pressure may have to be tweaked a bit up – I landed in the hospital when my Sleep apnea became uncontrolled and pressure was raised for a time from 9 up to 15 and now it is down to the 11. I am also wheat sensitive and follow a celiac diet. Hope you start feeling great with the CPAP use. Hugs

    • Thanks Gerri. Glad to hear the CPAP is doing good things for you. My setting is 7 right now and I’m wondering next how that gets tested if I need more/less. I’m not giving up by any means…and it helps me to know there are others out there who understand.

      • Do you know how many times you stopped breathing – 7 is very low – usually at least here in Canada they put the pressure at 9 to start – then they put it up by two until your sleep apnea is more controlled – is a forum that helped me when I first started with my CPAP – what CPAP machine are you using – mine is Redmed 8 elite II – take your machine to where you bought it and they will be able to get the reading off – they should be able to put pressure up by two at that time without going back to the sleep doctor.

      • Hi Gerri: Sorry I’m just getting back to this now. I was told I stop breathing 5x during the night…but the thing that I fear the most is that my oxygen levels go down to 54% during the night. With the brain tumors…I need my brain to be as healthy as possible! I might be getting something to check my oxygen levels to see if it’s set correctly. (I think mine is a Res Med? But I’m not sure what else after that….)

  3. Heather I am Viv like you I have many challenges and try to get through day to day. I am on oxygen 24/7 for COPD and other things and have to use bi-pap at night when your oxygen hits that low it really messes with how you feel and what you think I know it did me. Keeping my oxygen up and doing what it takes to keep it up like using bi-pap made a difference in how I think and feel. Just started to blog myself and found yours. Hun I am overweight to it stinks but such is life. You just do the best you can and like me being sick and wheelchair bound it is hard to get out and exercise. My thoughts and prayers are with you.


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