Happy, sad, glad, mad

[Tired Linda]

Hello all, I first posted last week after receiving my diagnosis of moderate OSA. My titration study is scheduled for Thursday night.

I am wishing that, in the meantime, I could just go off and live in a cave by myself somewhere. Although I am extremely relieved to have a diagnosis and know that it can be treated…I feel like I am on some kind of roller coaster and can’t get off.

It seems as though getting this diagnosis has given me “permission” to realize just how s****y I have been feeling. Tired, no energy, no ambition, inability to concentrate, feeling overwhelmed all the time…I thought it was just menopause and/or getting older. Or the fact that I lost my mother 7 months ago and now stay with my dad every other weekend to help while his caregiver is off. And, quite possibly, a combination of the above.

I was diagnosed with depression many, many years ago and have been treated ever since, both with medication and counseling. I have worked through many issues, including recent ones, and can usually tell when my medication needs to be adjusted. This wasn’t it.

It had gotten to the point where if I saw my doc one more time and he gave me the “salt talk” I was going to strangle him with his stethoscope. Although I have been overweight all my life, my blood pressure was always good. The past few years, it has been creeping upward and I now take a mild diuretic…and get the talk about salt/sodium in my diet. Which must have raised it another 10 points, because I don’t use salt, period. I don’t add it when I cook, nor do I add it after. I am very conscious of the amount of salt in packaged foods, and I know I am well below what he was recommending but I felt like he never believed me. Hopefully, treatment will allow my BP to go back to normal and I won’t have to listen to the “salt sermon” any more.

Oh, and I could never figure out why exercising regularly wasn’t boosting my energy or helping my BP. And I’m talking 3-4 times a week, riding a stationary bike at a good clip for 30-40- minutes each time. I am just more tired, although it helps with stress.

My one big comfort has been spending endless hours on this forum, and realizing most (if not all) of you have been through the same thing. I have never been good at waiting, anyway.

On Friday, I called the insurance company, and found out my equipment will be covered as long as everything follows the guidelines for Medicare. (Not to fear, I have the time and date, as well as the name of the woman I spoke with‼) I found (and printed) a copy of the guidelines somewhere in the forum, and that should not be a problem. I was also given the names of two DME’s in my area. I’ve already checked them out, both on the forum and online elsewhere.

I have choices of machines narrowed down, but am open as to the type of mask. Is there any other “homework” I should be doing to pass the time while I’m waiting?

Thanks for listening.

[Emilia]

Hi Tired Linda.... The first thing you need to do is register on this site. Forum members cannot give you private messages until you do, and once you have your equipment, you'll want to add it to your profile so veteran cpapers can help you based on their knowledge of the equipment you are using.

Your story is so similar to mine..... in many ways. I am actually seeing my sleep doc this afternoon to get the results of my titration study and my RX's for equipment.

Best of luck with your study.... and we can chat once you have your profile registered.

[newhosehead]

I am hopeful that just the act of posting this may have been cathartic. You literally brought tears to my eyes with your complete honesty. I can relate to far too much of what you have written about. Doctors, far too often, just do not listen. Or, if they do, it seems they have a limited supply of stock answers..lose weight, exercise, blah blah blah. And they don't seem to listen when you tell them you ARE doing all that and more and you still feel like shit (excuse me, but it fits). Several years ago, I was diagnosed with Diabetes and as I began a weight loss regimen, my doctor told me to eat NO carbs, NONE. I tried for several fruitless minutes to explain to him that it is all but impossible to avoid ingesting a carb of some type if one is going to eat anything. He never heard me. He didnt hear me 50 lbs lost later either. He is no longer my doctor either.

You asked about research you should be doing. You will, I hope, get better advice than I can give, but I would strongly urge you to get a data-capable machine. That is, really, a must if you are to have any control over your own treatment. Masks, as you can probably see from reading on here, are a highly individual thing. Do you mouth breathe? If so, a full face mask is the way to go. I use the Mirage Quatro, a full face mask, and I love it. Others hate it. If you are not prone to mouth breathing, a nasal mask may be the way to go.

I have so much admiration for the sheer honesty of your post. I hope you will continue to post here, there are losts of good people here who have been where you are. I went through what you are going through with parents, only my dad died first and then my mother developed Alzheimers. It is such a hard time of life and one that takes everything we have and then some. I will be thinking about you. Also, just please bear in mind that this treatment you are about to begin can be the beginning of a real turnaround in the way you feel. It may not happen right away. For some lucky souls, it does, but many many times it takes time and changes in equipment, settings, etc. Do not give up. It can and will get better.

Best wishes,

Jeanette

[Tired Linda]

Registered!

[chunkyfrog]

You are embarking on an adventure.
It is a beginning, not an end.
It is an opportunity to feel as good as you deserve.
Do not let anyone deny you that.

[DreamOn]

Welcome, Tired Linda! Your story sounds all-too-familiar, as so many of us come here feeling as you are now. In my own case, I had suspected that something was wrong for many, many years. Although I wasn't overly fatigued during the day, I would never wake up feeling refreshed and I would doze off while watching television in the evenings. My most glaring problems were cognitive. I often couldn't make sense of things, such as the nuances of language. My short-term memory was shot. I would find myself re-reading pages in a book because I couldn't concentrate or absorb the information. It was like I was "thinking in circles." What a mess! My blood pressure was also sky-high and I was having heartbeat irregularities that I could feel. I had to get up multiple times during the night to urinate. All frequent problems with sleep apnea. Depression is often associated with sleep apnea as well, and is sometimes improved with effective therapy. When you think about it, not sleeping well can affect all aspects of our waking life.

We go through various emotions after being diagnosed with any medical condition. I had to work through some anger at the medical profession, as my doctors never even suspected that sleep apnea was responsible for many of my problems. It really irritated me that I was the one that discovered what my problem had been all those years. I had to grieve "what might have been," as the years of oxygen deprivation really did a lot of damage to my body and had robbed me of a better quality of life -- and, in turn, the lives of my loved ones.

On the other end of the emotional spectrum, I also felt greatly relieved that there was an explanation for many of my physical and cognitive problems. I continue to be very grateful that I have a condition that can be treated -- with air! I have zero (or very few) apnea events now, and my oxygen levels stay within a healthy range all night long. This therapy does work!

Since using CPAP therapy (9+ months now), things have greatly improved for me. I actually saw immediate improvement, but for some people it takes many months to feel better. I had the usual therapy-related challenges to overcome (masks, pressure adjustments, condensation in the hose, etc.), but I have done very, very well. I sleep soundly now, I no longer have heartbeat irregularities, my blood pressure is down, I can think clearly again, my memory is improved, I handle stress better, I feel optimistic, I don't fall asleep in the evenings, and I have more energy. Life is good! I realize that you have some other life challenges right now that may be contributing to the way you feel, but I hope that you will enjoy the same benefits that many of us have found with this therapy. Just stick with it!

I found that this helped me in my early months of CPAP therapy ("Seven Stages of CPAP and What Is Feeling Good?"): http://smart-sleep-apnea.blogspot.com/2 ... at-is.html. It discusses the process that we go through as we work through our initial reactions and overcome any difficulties with therapy. I hope that it helps you too.

[KatieW]

Welcome to the forum, and good for you, for being so proactive and learning as much as you can. The time you have invested will serve you well. In case you haven't come across this, here is an excellent article:

http://smart-sleep-apnea.blogspot.com/

I would also stress getting a data capable machine, a copy of your sleep report, and a copy of your prescription. Keep reading and posting, and we will help when we can.

[elena88]

Hi linda!
Welcome!

and no more feeling guilty for feeling rotten! Now you have the key to the treasure chest.. one which may allow you to
toss out all the meds you were given for things that were caused by OSA!

It is easy to get down, when your body is in a state of anxiety from not getting enough rest and oxygen.
Personal losses are all that much more hard to take if you are exhausted.. it can be so much harder to clear your heart and mind.

Now you are in a place where you will get help. Be your own health advocate now, read, read, read everything you can..and ask lots of questions.

I hope your journey is smooth, and you get very quick results.. some people do, so no more salt talks, no more blaming..

its time to get your life back..

elena

[brazospearl]

Welcome, TiredLinda! Your story really touched me, as there are many similarities between us. Effective cpap therapy is going to help you manage all the other situations in your life. You've made a wise decision to study up on machines and such before you have to pick one. I agree with the others that you MUST insist on a fully data-capable machine, preferably autotitrating, for the best chances of having the most effective therapy possible. As for masks, try on as many different ones as you can, all kinds, because there's no way of telling beforehand which will be the best for you. Finding the right mask is sort of like finding the perfect black dress, as there are many that could work but only one that is PERFECT. Also, think about the pillow you use, and whether that will be appropriate for use with your mask. Let us know if you have more questions.

[Tired Linda]

Thank you all for the words of encouragement.
I do plan on requesting a fully data capable machine, and an APAP at that. And I'm not afraid to shop around and find medical professionals I can work with and fire the ones I can't.

My eldest daughter was diagnosed with two blood clotting disorders while she was in college. I did a lot of research before we met with her hemotologist-to-be. We (well, I) went in with a list of questions and he listened and patiently answered every one. My daughter felt very comfortable with him. (And OMG was he good looking!!!) About 6 months later, the doc left for another practice. We were "assigned" a total jerk. We became extremely frustrated with my daughter's care, and her blood draws were a nightmare. I went online, and searched until I located Doc. No. 1. Turned out he was in another city 30 minutes away, and accepted our insurance. The first time my daugher saw him by herself, he said "tell your mother it's never too late to go to medical school..." We had a good laugh about that one.

So, maybe, if the fog clears and I feel like I can remember farther back than what I had for breakfast, I could have a new career in my future??

Have a good day.

[kc5tty]

Since I am a newbie myself, I cannot tell you as much as everyone else can. BUT --- please do this:

1. Tell the doctor you are in charge of your health.
2. Remember that you can fire any of the doctors or medical suppliers that do not help you.
3. Fight for what you want.
4. Keep digging in this forum for info.
5. BE THE EXPERT ON YOUR APNEA!

(I know it sounds rough and tough but as you or someone else said "no one cares but you or another apnea sufferer.")

I did feel much better this morning after my FIRST night with my Resmed S8 Autopap. Couldn't believe it.

Now to practice what I preach.

If you need any encouragement just holler. This place is loaded with REAL experts.

(.... CAUTION ---ANY RESEMBLANCE BETWEEN ME AND SOMEONE WHO KNOWS ANYTHING IS SIMPLY A MIRAGE.)

Steve
Elgin, Oklahoma ..... where the allergies come sweeping down the plains .....
580-591-2338