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Tuesday, July 24, 2018

I got the results of my sleep study. It showed that I stop breathing an incredible average of 38 times an HOUR. It's no wonder I've not been getting good sleep! I was warned about how dangerous this can become. I was prescribed CPAP (continuous positive airway pressure) therapy. Most people who get this diagnosis groan - I cheered. It's been over a year since I began waking up with a really bad headache every time I fell asleep. My care advocate RN told me that those headaches are your body's way of screaming for help. They're caused by lack of oxygen. A problem arose when I tried to get the proper equipment in place. The insurance only works with certain suppliers. All those suppliers around the greater metro area were backed up and IF my doctor had sent everything they needed it would be three weeks before they could set me up. A week would be added for each time they had to get more information from my doctor. I also learned that you must rent to own the equipment and they only carry the newest, most expensive machines out there. I found out that we would end up paying twelve hundred dollars for the machine alone. We'd get credit for our deductible but our total cost would still be high. I researched and found an online company that had new machines from the last generation of them for four hundred dollars. A quarter of the cost of one through the local suppliers. The insurance wouldn't accept a receipt from that company so we'd have to pay for everything else too in order to get me going. The total cost would be a tiny bit over six hundred dollars. At that point I'd known about things for 6 days. I was so eager to get some sleep that I had to turn the decision making over to my husband. He was on his way home from a family get together 7 hours away so we spoke by phone. He weighed it all up in his careful, thoughtful way, had me look into a few more things and then told me to order the machine and other items from the internet company. I almost had my equipment the next day but I had emailed them only half of the paperwork they needed in the prescription. So I received my equipment the next Monday. I had no trouble adjusting to the mask or machine. I no longer have headaches when I wake up! I call my machine "Pappy" because all of my friends have names! I had carpal tunnel surgery 11 days ago. A week ago I decided to stop the narcotic pain medication that I've been taking for severe back pain for over nine years. When I first broke my back we were with an HMO. They did an MRI, determined that I had a break as well as two herniated discs. They put me on a hefty amount of long acting morphine and then another pain medication for breakthrough pain. I existed in pain and in a fog for two years using a wheelchair when I had to go anywhere. Then God gave us a miracle. Our insurance changed. We could choose a private doctor. Skip ahead a year. I was on a whole lot less morphine and breakthrough medication. I was walking much better, I wasn't in that fog, and the pain was far less. I have been content to leave it at that for the last seven years but as time has gone by, my doctors have had to increase the amount of morphine and breakthrough medication until we're at a place where it can't be increased any more. On top of which the Lord had put it on my heart several months ago that I needed to get the pain medication out of my body. I argued with Him just like I always do. I lost the argument just like I always do. LOL! So I got busy with getting it done. If you want to learn about my experience so far - keep reading. First off I'm very much doing this under the supervision of my pain management clinic team. I'm putting my body through some heavy duty stress. Most people who are going cold turkey off of this high of a dose of opiods do so in the hospital. A good many of them go through the first week or so in a state close to a coma. The pain team is doing everything they can to make me as comfortable as possible. I'm monitoring my heart rate and blood pressure. If I get too high of a reading or if I begin to have chest pain, I must get to the ER immediately. The first 24 hours wasn't too bad. During the second day my muscles began to jerk to the point that one of my arms or legs would shoot out away from my body without me telling them to. I got incredibly nauseas. My nose began to run as did my bowels. My skin got hypersensitive and goosebumps cover it off and on. The pain team had given me anti-nausea medication and additional muscle relaxers. They told me to take OTC anti diarrheal medication. The runny nose and goosebumps were going to be here for a while. The pain began to really hit me only two days ago. Boy did it hit! I read up on what I should expect and why it happens. To put it simply my lovely, biological super computer is going through a reboot. The pain is so intense and pops up in places that don't actually have a reason to hurt because my nerves are waking up. They have been dulled by the years of pain medication usage. They aren't sure yet what's normal and what's pain. As soon as the reboot is done, the pain will subside quite a bit. I'm not sure if I'll be in a lot of pain or not. Whatever comes, God will get me through it. I'm very blessed not to have the mental addiction of the pain medication. God released me from that a few years ago. I used to watch the clock waiting for the time when I could take another dose. As it has been since I was released, I've had to set alarms to remind me to take a dose on time. I'm convinced that attitude plays a big role in the amount of time it takes to get through the withdrawal symptoms. I have periods of time when I'm not hurting so much and my memories of the past are so much clearer than they've been in a long time. My short term memory is still terrible but I'm praying for two things; that it's either due to lack of sleep or that the computer is rebooting from the past forward! Even while in pain and in the midst of withdrawal symptoms I have enjoyed the company of my grandchildren and the first sunrise I've watched in 7 years. The longer a person has been taking opiods and the higher the dose, the longer it's supposed to take to get through the withdrawal symptoms. I'm not going to weigh in on that until my time of withdrawal is over. I'm in good spirits and I'm not a bit tempted to get back on the pain medication. I must admit that nights are the toughest. When I lay in bed not sleeping it gives me too much time to notice how bad the pain gets. The insomnia is also a symptom. As long as I stay distracted it's not so awful. I pray I'll be completely over the worst in about another week. I'm not opposed to the use of opioid pain medication. I have my opinion about the wisdom of the federal government getting to decide anything to do with the American people's medical care but that's a whole other kettle of fish. I credit the carefully monitored pain medication for the things I've been able to do these past 7 years. The problem is that I was started on a very high dose by an HMO that wanted to save money. When I got to a doctor who cares, I had been on that high dose for 2 years and we were only able to take it down so far before the pain became bad again. I get injections into the spaces between the discs where the damage is and in the sacroiliac joints that allow me to bend, walk and ease a lot of the pain. My choice to stop the pain medication abruptly instead of continuing to wean down on it is simple. God put it on my heart that I should do so and do so immediately. If I had quit arguing with Him a few months ago I suppose I would have had time to do it the slow way. But I'll never know now. I'm unsure what the hurry is but that doesn't concern me much right now. If the Lord wants me to know that He'll reveal it in time. My job for now is to get through this with as much grace as I can. I'm very grateful for the loving support of my husband and my daughter and my husband's willingness to fetch and carry for me so I can keep my heart rate down when it starts climbing. They have both also put up with my incessant chatter. The more sleep I miss, the more I talk. In the last year I've missed a LOT of sleep. I also have to be grateful for the Christian women friends I'm in contact with. They read and respond to the intermiminibly long texts and emails I send them when I can't sleep at night. It would seem that I am unable to shut up whether it's talking or writing! LOL!
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Member Comments About This Blog Post
    995 days ago
  • HOLLYM48
    Hugs and prayers for you. Stay strong. You can do this.
    1017 days ago
    oh my goodness, Jeanne! I had wondered what had become of you on SP. You've been through a lot! Praying for complete healing and recovery for you, my friend! emoticon emoticon
    1017 days ago
  • MAYIE53
    Sounds like you've been to Hell and are in your way back. Thank you for sharing your amazing story. I was fortunate enough to realize very quickly that the pain meds they had me on post surgery were making me crazy in the head. That was a very very scary time for me. Glad I did not have to go through what you are experiencing. Blessings.
    1018 days ago
    Thank you for sharing this with us. It takes courage to tackle so many health issues at the same time, but I know you are visualizing how your life will benefit from these major changes. I'm sending healing thoughts.
    1019 days ago
    Hugs girl friend. Getting off the opoids , is very tough. I an so glad you have the help of your pain group. I am blessed that I never allowed myself go that route.

    I can't say I never took codeine, but nothing stronger. Usually I would take half a dose. Working as an RN I knew the hazards and high incidence of dependence. I still have that pain. I am getting ready to go back to pain management. But I have learned that I can tolerate a lot more than I thought.

    I am on O2 at night but not a CPAP. I may have to go to a CPAP. I was shown to be stopping breathing 96 times in an hour. I too was having headaches and waking up feeling like I was smothering. I am resting much better since the O2.

    I am glad your carpel tunnel surgery is done and you are on the road to recovery.

    God bless, prayers said and of course gentle hugs.
    1020 days ago
    Dear Jeanne,
    So glad u found out about your sleep apnea. I pray that u make it through the withdrawal from your pain meds. I am grateful i didn't start on them. emoticon you go girl!! Love, Angie
    1020 days ago
    YES! My DH got a CPAC he was not breathing 93 times an hour.! It has changed our lives! We are both sleeping!
    Prayers to you!
    1020 days ago
    You are amazing dear friend!
    1020 days ago
    What a story - you have a whole book you could write about this! I am so impressed with the things you are doing to help you get better. I'm so sorry there's so much pain but I think you have the best healing partner in this. HE won't let you down.

    Wow - thank you for sharing this tale.
    1020 days ago
    Hi Jeanne,

    You sure don't do things the easy way and you have determination emoticon

    Getting off pain meds is an admirable feat, I'm glad you have your pain management team helping you.

    I'm you got you CPAP and that it's helping you. Sleep is an amazing tool for healing.

    emoticon and emoticon to you.
    1021 days ago
    Hang in are in my prayers
    1021 days ago
  • no profile photo CD3409143
    emoticon Its really stupid some of the rules that they have .Hang on to the receipts maybe you can claim them on income tax in April.
    1021 days ago

    Comment edited on: 7/24/2018 8:56:53 PM
  • no profile photo CD10676776
    Glad that you are on the mend and never lost faith in your higher power. I enjoyed reading your blog and how you persevered. Wishing you a speedy recovery without any more problems. emoticon
    1021 days ago
    Many emoticon My friend, as you hold on to your sanity in all this! You will feel so much better, and come off the meds. so much easier with your CPAP! I am so thankful you were able to find one! Your hubby and family are awesome to support you like they are! I wish you continued health and recovery as you eat, sleep, and think HEALTHY! emoticon emoticon emoticon
    1021 days ago
    So proud of you for sharing your story. You never know who God might help through it.
    1021 days ago
    I am SO glad you got the CPAP and it was discovered what was going on! And I do feel for you regarding the Opoids! … I pray God's grace in that one and I am glad now the carpal tunnel is out of the way!! … (Just keep this in mind: "Many are the afflictions of the righteous, BUT the Lord delivers him/ her out of them all!!" …. And my saving grace has been the 103rd psalm (1-6-7) many times over in even a life 'n death matter and the Lord did deliver me!!! … He will you too as you keep your focus on Him and His word!! … Love you lots Sister!!! … Glad to hear from you too!! emoticon
    1021 days ago
    My prayers and thoughts are with you always! emoticon emoticon
    1021 days ago
  • LINDA!
    I also have a CPAP. I was good with it for a year. However, I started being a bit aggravated with different masks that I tried. I am so happy that it is working well for you. I am so happy that your DH was okay with buying the machine although the expense was high.

    1021 days ago
  • no profile photo CD5241267
    Girl have I told you lately how much I love you and how very proud I am for you doing this? God certainly has a plan for you. Perhaps his plan is to have you talk to people about addiction. This tickled me pink! Love you Jeanne. emoticon Donna
    1021 days ago
    Wow, Jeanne, I had no idea you were battling all this pain! What an ordeal you've endured! And the sleep problems just made everything worse, so what a blessing it must be finally to be able to address the apnea issues. As I told you a couple of weeks ago, getting the sleep machine has helped my husband a great deal. He used to stop breathing hundreds of times a night, and I would lie there counting the seconds when he stopped breathing, knowing that if he were in a waking state he would never be able to hold his breath so long. I'm so glad I finally nagged him into doing something about it a couple of years ago.

    In your case, it sounds like the chaotic insurance system was a big obstacle to getting healthy again. Isn't it ironic that the health insurance in the US is so stressful that it gets in the way of good health? It's just too bad, but thank goodness you were able to find a doctor and other health professionals who could finally help you get your life back together and help reduce your pain as you become drug-free.

    I salute your strength, persistence, positive attitude, and faith that God will take care of you. Please keep us posted about your condition and know that we are pulling for you in your journey toward restored health. I think you and I are both at the age where we have to take control of our own destinies. I, too, have realized that I can't procrastinate any longer or ignore my issues but must manage them as best I can so that I can live to see my grandchildren. I wish you comfort and peace in the days ahead.
    1021 days ago
  • no profile photo CD15653250
    Sending hugs and prayers. emoticon
    1021 days ago
  • KURTZIE1998
    Sending hugs my friend and hoping things are actually going to turn around for you, you have been through a lot.
    1021 days ago
  • KAREN608
    It bothers me that only the most expensive CPAP machines were to be used as insurance could be lower cost if we could choose earlier models that work just as well, and other devices as well. I am glad you have such a good support there with family. Writing/talking is good, get it all said. I'm glad you will be free from the drugs and on to a different time in your life, with good sleep.

    1021 days ago
  • GEORGE815
    Glad the CPAP situation caught squared a way and no headaches in the morning.
    1021 days ago
    My goodness! You continue to go thru so much.

    I a sorry you had to have carpal tunnel surgery, but am glad you're on the recuperating end of that.

    I am very glad to hear you have your CPAP machine. Indeed, apnea as you have had is definitely a cause of headaches, brain fog and hope these things fade for you as time goes on.

    getting off the opoids -- an incredibly difficult task, but you are toughing your way thru it. You have my admiration!

    HUGS, prayers and all the best to you, my dear.

    1021 days ago
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