Adventures in the Land of CPAP & Pain, Pain Go Away Don’t Come Back Another Day!

In which I speak about my adventure at the sleep lab last night with the CPAP machine, and then about how my glorious morning was rudely taken from me by Ms. Left Ovary shouting: “Hey, remember me?”

Adventures in the Land of CPAP

So, last night was the night for my second sleep study. I had the same room, which was nice because I was familiar with it. And I like that. Sleeping somewhere other than your own home and own bed is strange enough, but when it’s somewhere you’ve at least slept before in the last couple weeks helps somewhat. Anyway, the technician had me try out the CPAPmachine for 10 minutes before getting me all hooked up to the the EEG and monitors. For those of you not familiar with what a CPAP, or continuous positive airway pressure machine, is here is a video describing it:

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It tooka few minutes to adjust to that the fact that A) I couldn’t breaththrough my mouth(I’m a mouthbreather), B) I was going to have to sleep on my back all night, and C) I was going to have to sleep withthis alien baby thing on my face. That image from Alien with Sigourney Weaver kept flashing in my mind. I kept seeing the alien facehugger attaching itself to Kane, and thinking in the back of mind “oh, crap, is this is what I have to look forward to? Alien implantation by forced air pressure?” OK, I will admit. It’s allergy season and I was just a bit out of it last night thanks to Mr. Benadryl. But thankfully the nurse came at me with these tiny (because I have a child-like nose) nasal pillows and the only mask type apparatus was attached to my nasal region (like shown in the video). No full face mask for this claustrophobic! Yay!

Then, after I became accustomed to the breathing through my nose and not my mouth business I made the mistake of trying to talk with this business on my face. Wow, it felt weird! And I didn’t like it. After I had that thing on, I talked in nothing but hand gestures and wished I knew sign language. It forces air right down into your throat so when you open your mouth air just gushes out of it. A great parlor trick, I’m sure, but not fun when you’re trying to talk.

She then came and hooked me up to all the wires and sensors. I looked again like I could channel ET, or like I should be in The X-Files. It’s was heaps of fun – lol! I then got to return to my bed – which was very comfortable. They make those rooms extremely relaxing, I must say that. And she hooked me back up to the Alien Nasal Mask and the mind control gas (er, I mean compressed air) was once again being forced into my nose and down my throat. And she turned the lights. After performing various tricks for her night vision cameras (and feeling like an animal on display at the county zoo) like point my feet, blinking, and holding my breath (btwbreathing in and out through my mouthten times with the nasal mask on is NOT FUN!!!!), I was allowed to turn the tvback on and resume watching the DVD I had brought with me.

After about an hour I started drifting off, so I turned the tv off and drifted into dream land. And I stayed there this time. I only briefly woke up once because of endo pain! I couldn’t believe it! When she woke me up – at 5:30 am mind you – I felt refreshed and had no headache! That was the best night of sleep I had had in a very long time – like pre baby long time!!! Wow! I had to pinch myself to make sure I wasn’t dreaming. And the machine wasn’t loud at all. It was very quiet; all I could hear was a faint water trickling sound from the humidifier. Gee, my air conditioner in the summer is 20 times louder than that thing! My husbands snoring is 10 times louder than that thing! Now I’m just hoping my insurance covers most of the machine and I can afford it.

And I’m pissed because I think if I had figured all this out earlier, I may have been able to make that crazy 2 month deadline for school because I would’ve been rested. But as it’s been, I haven’t been able to get nearly the amount of work I used to get done in the same amount of time because I have no energy. I use to be able to get 2 assignments done in a day by pushing a late nighter. Now it seems I push late nighters just to get an assignment done in 2-3 days because my concentration is shot! It’s because I’m working on little sleep and my body is trudging along. What little energy it has, it’s using it to keep me alive not to figure out the moral imagination or what some term is in sociology. The only thing I can accomplish without much fatigue is working on my novel rewrite, but then I just feel guilty for neglecting my other classes. And even that is taking longer than I would like. Maybe now I’ll see an improvement? And don’t worry, I’m still walking in May! And I can’t wait!! And grad school will follow in the Fall.

Pain, Pain Go Away Don’t Come Back Another Day

When I was laying in the bed last night I was seized with sharp pain in Ms. Left Ovary. All day yesterday I felt like I was on my period. I was just crampy feeling, very tired, nauseous, crabby, sore back, headache. And I couldn’t eat. I made veggie spaghetti, which I normally love, but when I tried to eat it two bites entered my mouth and the rest went into the trash. I managed some black licorice, which is one of my sick-tummy favorites, and water. And that was it. I had Subway for supper because by then I was starving and getting very weak. But after eating, I felt terrible. I chucked it up to nerves – the CPAP thing and all. And I think most of it was nerves. But not that left ovary area. Nope, not that.

It, of course, woke me up from a nice, comfortable sound sleep last night. And this morning it jarred me as I sat down to write this post. I had originally intended to just write about my CPAP night, but then I was stabbed by Ms. Ovary saying “Good Morning!” and felt she wanted some kind of attention paid to her; like an appeasement to a Greek God or some such none sense.

I would assume this was something like ovulation pain, yet I was just experiencing this pain on the 21st – Results are In/Endo Pain. And even worse on the 13th in the post – I think it’s beginning again. And back on Feb. 16th with the post – So… . I’m inclined, just because of the way it’s behaving and from my own personal experience, to believe this is a cyst. ANOTHER cyst growing on my poor ovary. And as S predicted, it will inevitably rupture, unless this is unlucky one that grows too big and puts me in the OR, and cause more adhesions to reform on my ovaries. Yes, the ovary Dr. K didn’t remove. Wow, what a pointless surgery and waste of copay that was. And my outpatient surgery co-pay is now going from $100 to $200 in April. This means I will be avoiding having out patient surgery like I would avoid the plague. I would now be even more inclined to beg for Lupron, even though my neuro has advised against it, before I would another surgery. Thank you, Mr. Insurance. I know there are people out there, especially in endo land, who have to pay their entire surgery out of pockets and look at my $200 co-pay and think “I’ll gladly pay that!” Yes, it doesn’t seem like much until you figure the fact that I also don’t get paid leave from my work, may have to fork over some cash to find a babysitter (or give them money to feed my kids and me while they care for me and them) if my husband doesn’t have the vacation time, and if my hubby has to take unpaid leave we lose out on a LOT of money. So, that $200 dollars adds up to a lot more quickly. And given the fact that my last surgery then required me to visit the doctor like 3 times before the surgery (co-pays) and 3 times after (more co-pays), then pay my surgical co-pay (which they are just now billing me for from an October surgery! lol)., medicine, and all the milk shakes from Steak N’ Shake (ok, so, those don’t cost a whole lot – lol), it adds up.

OK – I’ve lost track of what I was talking about. The fact is, I don’t want anymore surgeries if I can help it because that’s just going to create more adhesions. I really don’t want anymore cyst because, well, those seems to be creating adhesions as well! I’m stuck in this painful loop and now feel like my period is trying to come back, too. And I’m getting frustrated. I really don’t want to put both of my ovaries to sleep, and really wish there was a way to just locally inject Lupron into one ovary. LOL Could you imagine local injection of Danazol or Lupron to shut down one troublesome ovary? Why hasn’t the medical community thought about that? lol

Yes, from what we found out during my last lap, the right ovary is making cysts. I’m just not feeling them. Perhaps they are not getting as big as the ones on the left? Or the ones on the left are interacting with a portion of my bowel? Not sure what’s going on withthat left ovary, but whenever I get a cyst there I have unmistakable pain. I know what it is. And it’s painful. I’m fed up! And with that endometriosis cancer risk I came across, I feel it needs to be looked into. I came across an medical journal article, which I’ll try and look for and post on here at some point, saying that endometriosis can be in your ovary without it being on the cul de sac, uterus, etc. And unless it presents itself with cysts, all you’ll have is pain and the doctor won’t get confirmation until the ovary is removed. I wonder then if I have endo in the ovary and that’s why I keep getting these cysts. I also wonder if they would get bigger if the Mirena were removed?

All I know is my stomach is all bloated again; I can’t eat much; and I’m in pain. And I’m fed up with these cycles and have reached the point where I’m willing to increase my Topamax to endure Lupron or Danazol to rid myself of this ache! And that is saying a lot. I have fought tooth and nail to not be put on this stuff for years!

If anyone else has some ideas or suggestions, please leave them in the comments. I know, it’s time to find a new doctor. Hopefully one with a nurse practitioner I can get along with. But it would be nice to get a doctor that I can actually see most of the time I make an appointment with. I’m scouting out Gynecologist’s this time, not the Gynecologist Obstetrician combos. I don’t want someone who might be pulled away because of a baby and so I’m forced to see their NP. If I’m paying a co-pay, I want the real thing. Who else agrees?

** Jeanne, I love ya, Girl! I know ya can’t inject the Lupron into the ovary just hoping you could. Wishful thinking never hurt anyone, right??? lol

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4 responses to “Adventures in the Land of CPAP & Pain, Pain Go Away Don’t Come Back Another Day!

  1. Endochick,

    I have meaning forever to blog about my sleep apnea. (I have many partial blog posts sitting in drafts. Sleep apnea is one of them. There are never enough hours in the day.) Anyway, the video was interesting. My nasal pillows are similar to that. (They came separated). The headgear looks like the first one I had. (My CPAP provider drilled into my head to use only distilled water for cleaning the machine parts because the parts can get easily degraded).

    The one I have now looks different. As I explained to you, even though the CPAP provider nicely researched and found a headgear that’s latex-free (due to my allergy) and PVC-free (due to the fact that I have endo), I still had a reaction to the headgear. So, as I had explained… I had to put a barrier between my head and the headgear because I was getting sores on my head where the headgear pressed against my head. Quite a process.

    Yes, getting used to breathing with the headgear on is quite a feat! You are right, though, that it faciltates much better sleep. When I went for my sleep study, they told me I was getting ZERO restorative sleep. That might explain my fatigue/drowsiness and why I never had any dreams. I was essentially semi-conscious all night every night!

    The statistics for untreated sleep apnea are not good at all… especially for cardiac events. I saw a show on PBS about it… downright scary!

    So I’m glad you got diagnosed. The CPAP is considered a “durable medical good”… akin to a nebulizer. So your insurance coverage for it would be listed in “durable medical goods”.

    Or just call you insurance and ask them what your coverage is. Or if you have a really nice CPAP provider, you may even be able to get them to call the insurance and haggle it all out for you.

    With mine, it was a 10 month rental (standard). I think it was $42/month or something. Then they recommend you upgrade to the newest model (parts amy not be covered otherwise). We just paid the tiny amount remaining and bought it outright at the end of the 10 mos.

    With all the problems I had getting started on it (some of which I had explained to you), I had probably used it for about 4 months total out of 10. So it was brand new. There’s no way we were replacing it!

    I’m really sorry for your ovary pain. I’m no expert on GnRH drugs but it’s my understanding that they act on the pituitary gland. The pituitary then “shuts down” the ovaries. So injecting it into just one ovary wouldn’t work… if I’m understanding it correctly. I’m sorry you’re in so much pain.

    You certainly need a doctor you can work with. That much is a given. You’ve been through so much with this office. 😦

    Is there are an support group near you? If so, women in it might have ideas on how to hunt down the kind of doctor you need and deserve.

    As far as treatment options, that’s between you and your doctor. I will say this. I took danocrine and got almost all the side effects and no relief. My doctor was shocked that it didn’t even stop my bleeding. (This is when I bled daily for over a year from 1994 to 1995).

    Now, everyone is different and that doesn’t mean it wouldn’t help you. I just want you to be aware that there are no guarantees with any treatment. Hopefully getting hooked up with another doctor can get your symptoms better under control.

    Do you have a pelvic pain specialist in your area? You want to select someone highly skilled at endo… someone who treats endo all the time.

    Jeanne

  2. Pingback: What Are The Sleep Apnea Solutions?

  3. Pingback: “Jeanne’s Endo Blog”: Are Sleep Apnea & Endometriosis Co-Existing Conditions? — chronichealing.com

  4. I was suggested this web site through my cousin. I am now not certain whether this post is written by way of him as no one else know such distinctive approximately my problem. You’re amazing! Thank you!

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