SHERI, WHERE HAVE YOU BEEN?

 

Caregiving/Advocacy/Medical 2016
By – Sheri de Grom

Looking back to my last post of Dec 20, 2015 [you may read it here], I had no idea my life would soon become a powder keg.

Many of you have asked if I’ve found the silver heart Tom left me, and unfortunately the answer is no. I know in my heart of hearts, the lost silver heart had to take second place to the beginning of another medical nightmare.

Christmas day I heard Tom using a mallet hammering in his studio. He had trouble standing and I couldn’t imagine what was so important. Sometimes it’s better not to ask Tom why he’s out of bed when there’s every indication he should not be standing without support.

Tom came into my office and handed me a silver heart. He said, “I couldn’t let Christmas pass you by without a silver heart. This heart is from mine to yours.”

Tom took a nasty spill Jan 2, 2016. His upper right forearm fractured in three spirals and broke at 45 degree angles in opposite directions from each other. One break was an inch from his shoulder, the 2nd an inch from the first break, and the 3rd an inch above his right elbow.

Compliments of Google

Compliments of Google

The orthopedic surgeon on call at our local hospital that night was convinced Tom might not survive a surgery to repair his arm due to his multiple life-threatening conditions. He also said there were 2 breaks but there were actually 3, and that they were at 20 degree angles. CATASTROPHIC MISTAKE by the orthopedic surgeon. Tom could have lost his right arm permanently!

Tom’s arm was placed in a compression cast and I was beyond stunned when 2 days later the hospital discharged Tom with a prescription for 30 days Oxycodone, 1 or 2 tablets every 4 hours as needed for pain along with an appointment slip to see the doctor in 30 days.

Medicare refused to issue a wheelchair. Their response to our request was that Tom had broken his arm and not his leg. [Medicare refused to consider that Tom could not walk on the bottom of his feet due to the psoriatic arthritis keeping them an open wound]. HOW DID MEDICARE THINK I WAS GOING TO GET TOM FROM ONE PLACE TO ANOTHER? USING HIS ROLLING WALKER WAS NOW OUT OF THE QUESTION AND HE’D BECOME A MORE SERIOUS FALL RISK.

I brought Tom home and prayed, God’s will be done. I felt myself sinking into a deeper depression. I had to be able to get Tom to his medical appointments but how was I going to make that happen. Medicare put me in a serious situation.

We are fortunate to have exceptional friends of deep faith who have stayed close for the past 10 years. We often share the ups and downs of our lives. Two days after Tom was home from the hospital, a transport wheelchair appeared at our door [fits Tom perfectly and is a gem for Tom to get around in]. I can (with effort) lift it in and out of the trunk.

A quote by Edward Young always comes to mind when I think of Lynn and Bill Garret. To paraphrase, they are indeed “The Wine of Life,” and it’s with thanksgiving to God that I thank them for seeing our need and taking that need and putting it into action. The transport wheelchair is ours to keep. Thank you, Lynn and Bill, seems so little to say when something changes the quality of our daily lives in such a drastic way.

The compression cast placed on Tom’s right arm from the top of his right shoulder and down to his fingertips lasted less than a week before it was too loose to hold Tom’s broken bones in place. The pain medication offered him zero relief.

We visited the orthopedic surgeon’s after-hours clinic for a readjustment of the compression cast within a week of his discharge. Imagine my outrage when on the 2nd visit, I was told, “Take pictures of how we do this. We don’t make money adjusting compression cast.”

I’ve since learned by examining EOBs (Explanation of Payments from insurance companies) that they were paid in excess of $400 for each of the two visits we made lasting less than 15 minutes. For their rudeness and disregard for our need for treatment, I believe they are highly overpaid.

At the time we were at the clinic I wondered if we were being told the truth or was this further evidence of our medical care breaking down further? How could I be expected to take care of the realignment of Tom’s broken bones? I don’t have an x-ray machine at home! I don’t have the medical training

What’s happened to the patient being followed by the physician until a problem resolves? Tom didn’t need yet another chronic diagnosis in the form of a useless arm or one of continuous chronic pain.

The months following Tom’s broken arm have been the toughest yet. My role as a caregiver changed as I met one brick wall after another. However, I’ve learned and I’ve journaled. Much of what I’ve learned has been the result of living in crisis mode day after day. I’ll invite you along my journey in future blogs.

One of the best decisions I made for myself was to get another rescue shih Tzu. I’d asked for an 8 yr old but a 3 yr old flew into my arms the night I visited to meet my possible new rescue. I’m certain now that Bailey knew I was the one that needed rescuing. Each time I went to put him down, right back into my lap he popped

Bailey has been my constant companion these long and horrifying days of not knowing Bailey in Reclinerwhat brick wall would greet me around the next corner.

He’s learning to be a service dog for both Tom and myself as we both have PTSD. When Tom became so sick, Bailey and I lost a lot of ground with our training as Tom came first. We are still using his service dog commands.

I mentioned to Bailey about going to Navy Seal Training and he politely told me, ‘When Pigs Fly!”

Bailey asks for little except to be loved. Most days he divides his time between looking out the window in my office [from my desktop], of course, where he has his own lush blanket, and cuddles and tummy rubs on command.

I’m not sure how I would have made it through the dark days of Jan through March if Bailey hadn’t been at my side. He continues to be a joyous spirit.

Bailey thought New Year’s Eve was the cat’s-meow. Tom wanted flavored water with a sizzle and away we went to find it. Bailey was so excited when 5 Brownie Girls approached and asked if they could have their picture taken with him. Bailey was so-o-o- happy to oblige. After all, what new guy in town meets 5 cute girls on New Year’s Eve that welcome his kisses. His wiggling body and wagging tail encouraged me to get us home to tell Tom of his latest adventures.

As Bailey retold his story, he elected to leave out the part about the Brownie Girls being on a scavenger hunt and that they needed a picture of themselves with a cute dog!

I’m leaving much unsaid here about all that’s happened since I last spoke with you. We’ve had close calls with Tom’s health and never before have I met with such frustration. In mental health quandaries I could always remove Tom from any situation and knew I could keep him safe until I found appropriate care.

The serious medical problems Tom faced included: cardiac, infectious disease, pulmonary, trauma surgeon, endocrinology and more. Tom entered Little Rock Baptist Hospital on January 27th and he’s been home 1 week! Our experience with Baptist Hospital in Little Rock was less than ‘Awesome’ and I’ll be writing more about that in a future blog. I was afraid to move Tom and have him classified as AMA [Against Medical Advice].

What I do know is that the diagnostic overshadowing is the direct cause of the rapid decline of Tom’s body. Our new diagnoses are Histoplasmosis in all 5 chambers of his lungs, COPD brought on by chronic bronchitis and yes, way back Tom smoked for 20 years. [Tom and I have often talked with our friends of the Vietnam era who are dying today from COPD, [brought on by smoking cigarettes]. Daily meal rations, during the Vietnam war, included cigarettes. Then we have the fever of unknown origin that roamed from 101.2 and spiked at 108 for 2 days. His arm had 3 spiral fractures and each was at 45 degree angles going in opposite directions of the other and would never have healed in a compression cast. A trauma surgeon treated Tom a day after he received a new generator and batteries for his pacemaker [they both stopped working while they were in his chest].

Why hadn’t his cardiologist staff scheduled his pacemaker checks at recommended dates? Tom would be dead today if I hadn’t counted the dates and called the cardiologist’s nurse. The pacemaker itself was 100% dead [the batteries] when Tom was admitted to the hospital on the 27th of January. I’ll be talking more about this in a future blog but to add to the tragedy of today’s medicine, we had no idea he had actually been alive because of the back-up generator. Tom would have died at home in a matter of days and we wouldn’t have known why! Tom was off-line before he made it to surgery!

Every available space covered with medical records.

Every available space covered with medical records.

I’ll be discussing some of the horrors of Medicare’s Administrative Rulings as I move forward with blogs this year. Suddenly my own time has become non-existent as my days are spent on the phone arranging care for Tom, reading, indexing and summarizing over 40 years of Tom’s medical records and acquiring all new medical records as Tom’s care continues.

 

Front Walkway WildflowersI carve out bits of time here and there to enjoy one of my favorite stress relievers. I refuse to take my iPhone to the garden.

 

I haven’t words for telling all of you just how much I’ve missed communicating with each of you.

My friends, we’ve entered another regulatory age of Medicare. What are your thoughts on this matter?

I’ve spent hours of reading regulatory Federal Registers’ on the matter. It’s not a riveting read but occasionally I unearth a valuable nugget.

As always, I thank you for reading with me. It’s wonderful to be home again.

Sheri

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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About Sheri de Grom

Retired Fed/JAG, 5 yrs. on Capitol Hill. Former book buyer for B and N. Concerned citizen of military drawdown. Currently involved in mental healthcare reform, health care strategist and actively pursuing legislative change wherein dual retirees are exempt from enrolling in Medicare at their own discretion without losing tertiary healthcare benefits. Monitor and comment on Federal Register proposed legislation involving Mental Health, Veterans Affairs, Health and Human Services, Medicare and rural libraries. Licensed OSHA Inspector to include Super Fund sites. Full time caregive to Vietnam era veteran. Conceptualized, investigated possible alternatives, authored, lobbied for, and successfully implemented Title X, Section 1095 (known as the Third Party Collection Program of Federal Insurance).
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101 Responses to SHERI, WHERE HAVE YOU BEEN?

  1. The Poetry Channel says:

    I hope things have improved for you two, three including Bailey.

  2. Inese Poga Art plus Life says:

    I completely understand your really terrible situation.
    As somebody who depends on care, I have no good words to say about it, just like your Tom, I’ve been misdiagnosed and disregarded and this all leads to just worsening. I wish you strength because it is horrible what you have to go through. Dog is the best friend one ever can have.

  3. inesephoto says:

    Sheri, I am so delighted you are back! I have been following you on Facebook pages, and know what you both had been through in these last six months. Glad you are doing some gardening, and taking care of Bailey. Life is going on. Rushing to read your latest post.

    • Hello Inese – I just came in from the garden. The humidity is high and I’m ready for sun. Normally the wildflowers would be swaying in the breeze but all is quiet.
      I’m back but not on a regular schedule yet. I’m having a hard time finding a new ‘regular.’ Seems it’s something different every day.
      Is haven’t posted it to Facebook yet but Tom and I did go out to dinner with friends Sun evening. It was wonderful. First time we’d been anywhere together, other than medical appointments or the hospital in well over 18 months.
      I hope to find a regular schedule of some kind soon.
      It’s so kind of you to post after all this time.
      I hope you are having a wonderful spring and step into summer.

      • inesephoto says:

        Thank you, Sheri! I was away from April – first sick in bed, then three weeks vacation. Didn’t interact with people and posted ready-made scheduled posts. So happy you two were able to go out. A normal life! Enjoy your garden, best wishes to Tom!

  4. lorriebowden says:

    My heart sends you love and healing energy! Blessitude!

  5. Gallivanta says:

    Sending you lots of support and good wishes from this side of the world.

  6. raphaela99 says:

    I tried to send you a reply yesterday but it didn’t go through. You have very much been on my mind and I am despondent at reading what you and Tom have endured. That you have kept going without falling in a heap is a momentous thing! I wish I could help you in a practical manner. Sending so much love to you and Tom. Xxx

    • You know, one of the things I missed the most since December was communicating with my blogging friends. There seemed to be so many things going on all at the same time, I simply couldn’t find the time to write. Tom’s medical care was a 24/7 job and then some. I even had a doctor on the staff of a hospital tell me yesterday that it was shameful how the hospital conducted their business, as in [absolutely no regard for the health and welfare of the patient and their family]. The particular hospital is supposedly founded on the principles of the Baptist faith and within the past 10 years or even more, it has turned to nothing but greed. To hear a doctor, who is in such high demand, admit to Tom and I, that we had every reason to be angry with the care Tom received there validated some of our concerns.
      Thank you so much for dropping in and leaving a comment.
      And, don’t doubt yourself. I’ve had times where I’ve come home after yet another gruling day [simply to shower and change clothes] and return to the hospital, 30 miles away – I was operating on my love for Tom and pure adrenaline. Prayer and having Bailey to come home to held me together and still do. Sheri

  7. Terry says:

    Let me know, when you have a chance, how you two are doing

  8. Haven’t heard from you in such a long time. I should have contacted you long ago just to say hi. It breaks my heart the medical community still shows so many shortcomings, which have made Tom’s and your lives so difficult.
    I have been offline for weeks myself. This is my first visit back. Take care you you too, Sheri. ❤ ❤ ❤

    • Hello Tess – Last night while watching a movie with Tom I checked your WP with my phone. You’re right, you have’t been around much either and for just cause. I know all of your readers (including me) have missed you.
      I remember seeing an e-mail come in from you in January and at that time, I was wandering through a maze of fog. Tom has so many dangerous chronic conditions, I wasn’t sure which one was the most critical.
      I understand the hours you are going through yourself in taking care of a loved one. If you are like me, at the end of the day, you wonder where all the hours have gone. We have Home Health coming in at the present time and they are a wonderful assist for Tom and for me. It means I don’t have to drive him to a bunch of individual ppointments every day. I can’t really complain about all the people in the house.
      I’ve broken out Peggy’s 4 ingredient cookbook more than once looking for something simple items to prepare for when staff stays over and that Tom will eat.
      Thank you for stopping in. I think of you often and some of the zany conversations in years gone by. Sheri

  9. Patti – I’ve thouoght about your insurance concerns off and on all weekend. I want to make sure you understand your choices as much as possible. Does your husband have the choice to carry his company insurance into retirement. Those are some of the best plans for personal protection. We can talk about this in more depth. I want you and James and your children to have all of the coverage you are entitled.

  10. It was great to see an update from you!! The healthcare system is a nightmare and it’s getting worse. I hope to see more posts if time permits.

    • Yes, indeed, I have enough health care stuff written on scraps of paper, journel entries and recordings I made on my phone as events were unfolding that if I wanted my hair to curl, I’m sure it would. I’ve missed you and the scenes you create. Some are so tranquil and they have the power to transport me both to the past and to the future. Keep up the good work. I’ve missed my regular contacts more than I can begin to explain. I’ve even missed me if that makes since.
      I do hope you are making a nice transition into spring. I’m not ready for summer but I love spring like weather. Thank you for taking the time to read with me. Sheri

  11. Patty B says:

    I have 10 yrs to go until I am forced to go on medicare and it scars me I can tell you. Right now believe it or not tri care has met my needs – and I have had been poked and prodded since November to find out what is going on with me. The government has destroyed the health care system they should get their little grubby fingers out of what doesn’t concern them. My cousin won’t be on medicare until I think next year and so he thought he would enroll in the ACA…well that is a joke. Poor guy spends most of his retirement on the premium that covers squat. He is insulin dependent and lets just say the ACA doesn’t care that if he doesn’t get it he dies…affordable my aunt fanny – it is only making the government elite get richer that is all it is doing, same with medicare. Soon we won’t have doctors at all because of the screwed up system. I am sorry you and Tom have go through so much after all your years of hard work. The US has indeed let their seniors down – I keep saying this for the first time ever I have been so ashamed of being an American, I miss the country I grew up in.

    • Patty – You are speaking words right out of my mouth. When I first heard ‘certain candidates’ spouting ‘Medicare for All’ I shuddered inside and wondered how so many people could be so naive. Medicare doesn’t want to pay for over 70% of the preventive services now approved my major insurance carriers. I have learned some ways around Medicare but not nearly enough. I’ll do my best to keep the military community updated of where Medicare can help you vs not having access to it. It’s a fine line dance.
      It’s nice to see you here. BTW – I have some new coloring books with very fine lines [too small for my vision]. Are you or your daughter interested? I did a lot of coloring while sitting by Tom’s bed at the hospital. Love to you and yours. One of the things you’ll need to be concerned about is your pharmaceuticals. Tom’s are now running so high that we would be homeless if it weren’t for our BC/BS. Then TriCare is good about picking up the deductible. Sheri

      • Patty B says:

        As you can tell I am getting caught up on my blogging…the past few months have been crazy with my own dr appt. Need to go for follow up tests at the end of the month and praying for the best. …. you have really created two coloring monsters with me and my daughter. We are officially hooked! Even got some friends and my sister coloring too. So glad you told me about it. Yes we would love the coloring books email me with the cost …. thank you for your hard work in keeping us up to date on the medical stuff it has turned into a nightmare to be sure. Hugs…

        • Let me know how you are as time permits. I’m much better about the e-mail than I used to be. I’ll get the coloring books together. I color some almost every evening. I’m so glad you and your daughter both enjoy coloring. I always go to the post office the middle of the month and will send the books then. ❤️ and 🙏

          • Patty B says:

            Thanks Sheri – you are popular here in PA – all my friends are into coloring now and I let them know who started me!! I even bought a coloring devotional/journal…great way to end the day. 🙂 How is Tom doing? Will get email out soon…think of you often.

  12. The two wonderful things about this post are that (1) it brings everyone up to date with all that has happened in recent months, and (2) you had the leisure to write at such length. It’s proof that your life has settled down at least a little from the constant, relentless chaos recently.

    • John – My dear friend. You, more than any other blogging buddy probably know more than anyone else about the ‘hell’ I’ve been through the past 4 months. You know how scared I’ve been and all the times I didn’t think he could possibly live another hour. I cannot begin to tell you what your words of kindness and the phone calls and texts have meant to me. It’s so easy for the caregiver to get lost in the demands of the day and never come up for their own air.
      I struggled with this first post and wrote and rewrote. You know there’s a lot more that I learned and you passed along great ideas for me to try also. Actually you played a huge part in helping me keep a large part of my sanaity. I’ll admit there were days when I thought I was headed over ‘the edge.’
      The numerous times I sat down at the computer I faced a blank screen and then simply got up and walked away. Everything was so raw, I couldn’t write. I’d reverted to the time in my life when I journeled and wrote simple thoughts on scraps of paper. I’m in the process now of gathering some of those thoughts for writing purposes.
      Most of all John, thank you for standing firm. I always felt you had my back.
      Congratulations on Ian graduating college and I know the party this weekend will be glorious. Sheri

  13. Sounds like you’ve really had a lot going on… Hugs to both of you!

    • Michelle – Hello my friend and thank you so much for stopping in to read with me. I thank you for leaving a comment. I hope to return to a regular schedule but am learning rapidly there’s nothing normal about the routine of a full-time caregiver. I have some catching up to do with you. I only thought I was busy before. I must work at finding a workable schedule for myself [small nitches of time that belong to me and Bailey too].

      • I just hope you will be able to get some rest through it all and find a little bit of time for yourself. I’m glad you have Bailey now…. what a blessing to find such a wonderful little dog.

        • Michelle – Yes, Bailey has indeed been my lifesaver through this ordeal. He seems to understand prayer [he gets his blanket and is absolutely still for both prayer and quiet reflection. He’s also a bundle of energy and delight. Had Tom’s injury happened a week sooner, I would have missed the joy of having him in my life, thinking I would never have time to take care of a new dog instead. The reverse is so true. We positively needed each other. It always amazes me how when we lose a pet, we say we won’t get another for a long time and perhaps never. Well, Bailey entered my life at the exact moment I needed him in my life.

  14. mihrank says:

    Dearest Sherri –

    You & Tom are always in my prayers and thoughts. I wish there are many other options in our health system to bring comfort and better assistance. I am praying and asking from everyone to have their wonderful support and assistance.

    • Thank you so much Mihran. I cannot begin to tell you how much comfort Tom and I both took from listening to your music while Tom was in the hospital. I also program it to play here at home. I pick out calming songs that we both relate to. Songs from when we were dating and the early days of our marriage when all seemed so perfect. I try to have a new playmix of about 20 to 25 songs for him each day for him to listen to as he tries to either work his various muscles in his hands, feet, and sometimes I see him with his eyes closed and a soft smile on his face perhaps dreaming and remembering far away places.

  15. Our health care system fails those most in need. Tragic and horrifying. So sorry that you both are having to deal with this mess.

    • Kitt – Hello and thanks for stopping by. I thought I knew most of what I needed to know about mental health and the general health care system but WOW, what I didn’t know shocked me to the very core of my being. The care Tom was denied in a critical setting was because of his bipolar diagnoses [I didn’t know that was the problem at the time] could have killed him and nearly did. Tom has not had a manic or severe depressive symptom in the past 12 years – yet the hospital used that for an excuse to withold critical care.

      • They will find any excuse they can to deny claims. Been through the nightmare of being insured through both Medicare and Blue Cross. Resulted in claims denials. “Coordination of Benefits” means denial of claims, even retroactively.

        • Hello Kitt – It sounds as though you’ve run into some of the same problems I have. I learned tons of information from Denise at http://www.inspired2ignite.com. I had almost given up on getting some claims paid and after more work than I wanted to think about, we were finally victorious. It didn’t happen overnight, but my doctors were finally paid at the appropriate level.

          • We went to battle, as well. Because of Blue Cross Medicare Advantage Part B’s carve out (as I was also insured by my husband’s policy), I ended refusing Medicare Part B and keeping Medicare Part A only (which comes with SSDI). Still triggers questions and denials.

            • Kitt – As long as you can stay on your husband’s policy and not have to go on Part B the better off you are. Big government made us go on Part B although we had plenty of coverage without it because we also have Tricare for Life (which Tom is entitled to because he is retired military). However, in order to keep Tricare, we also had to have Medicare Part B. I’d drop Part B in a minute but Tricare is the insurance that pays the 20% deductible on our prescriptions. The whole mess means we pay more than ever for insurance, we have tripple coverage in some areas and still have to pay for the care of some doctors if they are not in-network. It’s crazy enough to make me want to go under ground and stay there.

  16. Oh Sheri, it just doesn’t get any easier for you or Tom, does it? You’ve got so much strength to cope with this, though I know often that’s a matter of just putting one foot in front of the other and getting through each day. Dogs are such a blessing in terms of rescuing people as well as the other way around and Bailey is gorgeous 🙂

  17. So many challenges. So sorry.

    • Yes, the challenges continue to roll in but some of them we’ve been able to turn into a positive learning experience + positive health process. Medicare holds there benefits close and makes it necessary to read every line of legislation as well as inbetween the lines. One page at a time, I’m gathering some valuable information.
      Thanks for reading with me.

  18. GP Cox says:

    You know how I feel about you and Tom. I’ll write soon.

    • Thanks G.P. and yes, I do know.
      A dear friend of mine is now reading your blogs to her 90+ yr old WWII Veteran Uncle on a regular basis. I suggested to her it just might bring him pleasure. And, you and I know how our veterans are. I talked with her a couple nights ago and she said it was the best idea for getting her uncle to cheer up and engage in a conversation. He’s been blind for about a year and recently suffered 2 strokes after being totally independent all these years.
      Oh how I wish I could get programs started in rehab units and care homes such as nursing + independent living homes. There’s so much that brings our veterans pleasure [your blog for example] and it’s already there for the reading.
      I was so happy for my friend’s uncle. She was getting really concerned about his constant state of depression. Kudos to you my friend for all you research and do day after day.
      Tom and I are hanging in. It’s hard having the house invaded several times a day with Home Health yet they are a life saver. If we didn’t have them, I would have to drive Tom to PT 3 X week and instead they come to the house and on and on.
      Thanks for stopping in.
      Sheri

  19. I was wondering about your absence. Glad that you are back. Sheri, I wish you both the very very best.

  20. Elaine says:

    So sad to read of all you and Tom are experiencing. Praying for both of you. Glad you have your little Bailey to lift your spirits. Hugs!

  21. So sorry to hear about your and Tom’s new struggles. Wishing you both the best.
    Jack

  22. from one Vet’s wife to another… We complain about our health system here in New Zealand, but I guess we don’t know how well off we are (for now), although things are getting harder for those who can’t afford private care. I’m so glad you have good friends who are there to help, and little Bailey to give you cuddles. My heart goes out to you both…

    • Hello, Maureen. It’s good to see you here. It’s Medicare that’s causing my anguish. It’s nothing more than socialized medicine. If we weren’t forced into it, we would still be able to use our BC/BS that I pay for and have 100% coverage. Sometimes Medicare will say no to something and then I’ll call BC/BS and they’ll agree to cover the care at 100% that Medicare has refused to cover. It gripes me to end that the government forces us into a program we don’t want and then denies us care we need when we could get that care and it would be paid for if Medicare would get out of the way!
      The entire situation is crazy making and I spend hundreds of hours chasing benefits.

      • typical bureaucracy – here government allows rents to skyrocket out of reach of many and then pays an allowance to cover it – lots of paperwork and red tape…

        • If you could see the number of double size Rubbermaid tubs in my house, filled with 40 years of Tom’s medical records, you’d know paperwork and red tape is alive and well in the United States. Of course, there was never any doubt in my mind.
          I’m reading every page. Would you believe I even have Tom’s pediatricians records! There’s just a few gaps I still have to fill.
          Here’s where I wish I had a medical degree – seems like I spend 50% of my time looking up the names of abbrievations. And, those who say all of our records are now electronic are only fooling themselves. They say they are electronic because it’s a Medicare reqirement but in fact, we are far from having all records available electronically.
          I’m eagerly looking forward to visiting your blog and taking in some of your exquisite photographic shots. — Sheri

  23. I read and keep saying WHAT THE HELL. Sheri I’m so sorry for everything you and Tom are going through. I am so relieved to read of your good friends, and your little bitty piece of salvation-Bailey. Across these pages, from your hands to our eyes, comes the horror of what you’re going through. I know it doesn’t help, but it angers me. And I’m sorry. So very sorry.

    • In this episode of medical care, and I have this feeling in the pit of my stomach that we are a long ways from coming out the otherside, I’ve met with more unreasonable regulations and individuals than I had any idea could possibly occur in one person’s life. Every day has been a learning experience and normally I’ve always welcomed learning. However, it’s time to call a hault to just how much misery a medical bureaucracy can cause one patient and the person that loves him.
      I easily understand why individuals caught up in this bureauacracy die if they don’t have an advocate that’s willing to stay the course with them. You don’t dare drop the ball, not one time.
      The caregiver becomes so bogged down in trying to do what’s best for the patient, your entire sense of self can rapidly disappear. Bailey has indeed been my salvation in that regard. There’s nothing like the face of a 3 year old with a wiggling body and wagging tale with his leash in his mouth to take you away from what’s going on, even if it’s just for 10 to 15 minutes.
      Thanks for checking in and commenting. Sheri

  24. Elyse says:

    Sheri I was hoping that your absence meant that all was well and you and Tom were living a life that needed no outlet. Alas …

    I continue to be appalled by our system. We have the best medical system in the world — if you can afford it. Of course, it is out of reach for the rest of us….

    Wishing you strength (which you have, in spades, actually). I know you have love. And those hearts break mine.

    • Elyse – Wouldn’t it be wonderful if I could write a post and explain the long absence as having been in California gold country with Tom panning for gold and me playing tourist and taking Bailey for long walks in the forests.
      But, that’s not to be. I continue to fight for what Tom deserves and refuse to back down. I’ll pass along some of what I’ve learned during the past 3 months. It’s been the hardest and darkests days of my life, but I’ve found a few tricks alongthe way and I want to pass them along.
      Thank you so much for checking in with me. It’s wonderful to rejoin the blogging community. Sheri

  25. I often feel like it’s the Doctor and I against the insurance company. You didn’t even have the doctor on your side. I don’t know how you keep your spirits up. Well, there is the dog…

    • Hi Jacqui – Oh dear – I won’t let Baily know you said, ‘ There is the dog . . .” If I’d known Tom was going to break his arm on Jan 2, I would never have taken on a dog at the present time but I’m convinced it’s all in the timing. It was having Bailey constantly at my side that reminded me I had to have something to eat when I fed him. When he wanted to go to bed in the bedroom, he made no ‘bones’ about it. His bedtime is 10 pm and I’ve never gone to bed that early – never, ever, ever. Of course that comes with getting up around 7 or 8 to go outside but surprisingly I adapted to and it’s amazing how much better I feel sleeping a reasonably descent schedule.
      I’ve always stayed up until 4 or 5 a.m. and then slept until 11 a.m. or so.
      Bailey also reminds me that when I prepare his dinner that I should fix something for myself.
      Once I can get Tom away from small town mentallity I can generally obtain ‘all on the same sheet of medical care’ with the doctors. The on-call ortho surgeon that misdiagnosed his rt arm is from the same clinic that misdiagnosed his psoriatic arthritis. They called it cellulitis for 7 months!!! Tom is such a complex patient, most of the local docs are afraid to touch him.
      We have doctors in Little Rock who have fought along beside me to bring certain treatments about. Just as soon as they realize we have Federal BC/BS the docs are willing to do whatever is needed to obtain treatment through the BC/BS channels. It really is amazing.
      I believe one of the biggest hurdles we face is that Tom has 12 specialist and they often forget to talk to each other and try to do their own thing. I now know I have to let Tom’s psychiatrist at the VA know all medications Tom’s prescribed. The psychiatrist is the one that keeps track of all the meds Tom is on and they won’t do more damage than good.
      Thanks for your in-put. I always enjoy reading your comments and am looking forward to getting back into the swing of life – although several hours of the day are taken up with helping and caring for Tom.
      Keep on fighting you fights, Jacqui.

  26. rabbiadar says:

    I’ve been worried, Sheri, but golly! So much to deal with, so much frustration! I wish y’all were nearby so that I could offer help.

    Bailey looks like a champ! I am so glad you have him.

    • Rabbi – Yes, this has/is a long road and I have a feeling we haven’t seen the worst yet. My primary goal is to keep Tom as comfortable as possible each and every day. I’ve learned even more about Medicare but the patient wouldn’t be able to seek out the ‘material in the fineprint’ in the notes of the Federal Register that can make or break a potential valuable recovery process. As I’ve said before, I’ve learned more than I ever wanted and I plan to pass it all along to you for your arsenoul of information. I pray the day will never come when you are forced to use it but it’s good to know the bottom line when that day comes.
      You are so right, my Bailey is a champ. The Southern Arkansas Shih Tzu Rescue League heard about him being held captive by a hoarder along with 76 other dogs by a hoarder.
      He brings pure joy into my heart each and every day. Currently he’s asleep on his blanket on my desk – he loves to look out the window – the red cardinals and blue birds are feasting this a.m. Bailey never barks at them. He’s simply appreciative they visit one of his favorite windows and he doesn’t want to scare them away.
      Thanks for checking in Rabbi. I’ve missed talking with you and am anxious to get to your blog and see what’s happening in your world. Bless you and the world of those you love. Sheri

  27. ksbeth says:

    oh, I read this after i replied to your kind comment on my post. this just seems to keep getting worse and worse. i’m so sorry that you both are victims of the system, like steel balls in a pinball machine. i’m glad you are both home and my wish for you is for some relief and rest, that’s not too much to ask is it? it’s good to see you back and look forward to seeing more when you are ready and able. best –

    • Beth – It’s so nice to see you here. And, yes, it feels so good to have Tom home with Bailey and myself. We have Home Health coming in everyday and it feels as though the house is always full ot people but it’s a real blessing after being away from home so much and it saves even more wear and tear on Tom’s body. PT comes to the house 3 X wk, RN comes 2 X wk, OT 2 X wk, RN 3 X wk – and they never come at the same time – oh yes, an aid comes each day. It’s a terrific service and the intent is to help the patient continue their recovery process without having to return to the hospital. I’m all for not returning to the hospital!

  28. Sheri, I’ve missed you! You are a brave lady, and I feel so helpless to come to your rescue in some way. Keep the faith and lots of prayers continue to wing their way towards the heavens for your name. Blessings, dear one.

    • Jeanee, Good morning my friend. I’ve missed you. I knew I had to return to blogging, I wasn’t sure how I was going to pull it off but I so missed my blogging friends.
      I know prayer is the reason Tom and I are still holding on. It has indeed been a scary process and with his new diagnoses, life is more precarious than before. Thank you so much for your positive thoughts and prayers.

  29. Mae Clair says:

    It’s so odd to have your post appear now. You and Tom have been on my mind lately. I’ve noticed your absence and have been worrying about you. You’ve certainly had your hands full, yet our Lord continues to give you strength and ensure you are there for Tom. It’s amazing how He works in small ways like your latest rescue dog who has clearly touched your heart and provides emotional support where needed. Pets are so therapeutic in so many ways. I’m glad you and Bailey found each other. Hugs and blessings to you and Tom.

    • Mae – Thank you for checking on me. I kept telling my best friend I was going to return to blogging for a purely selfish reason, I missed my blogging friends and interacting with them. I bet you’ve written at least 2 more books in my absence and am looking forward to checking your blog out to see what you are up to now.
      I so agree about how God works in such amazing ways. I have no idea how I could have survived without Bailey – I know I would have – but it would have been so much harder. I’m sure the nurses tired of my daily Bailey stories – but hey, they were a captured audience. I couldn’t keep up the 2nd round of ‘service dog’ training classes with all of Tom’s needs but I expect to get back just as soon as possible.
      Thank you, Mae, for thinking of us. We aren’t out of the woods, as they say, but Tom is doing so much better. I came so close to losing him so many times within the first 2 months it’s been a tough emotional time both physically and mentally.

  30. What a horrible quagmire of Medicare bull****. It saddens me that you even have to deal with such crap when you are just trying to help your husband have a better life. It all makes me sick to read about what you have to go through on a daily basis, fighting with them over health care. My goodness. Thankfully you have close friends and now Bailey to bring a smile to your face – sometimes. I’m thinking of you.
    Patti

    • Hello, Patti – First please allow me to compliment you on your beautiful new site. I love the art work and the colors so match what you write. Keep the good stuff coming.
      Yes, Medicare is what I fight all the time. We wouldn’t have about 95% of the problems we have in obtaining the medical care Tom needs if Medicare didn’t stand in our way. Our BC/BS would pay for everything ordered by the physicians. Here we are reaching a million dollars for Tom’s healthcare since Jan 2, 2016 and I’ve had to fight for it and threaten legal action every step of the way.
      I’m convinced it’s the management of medical care that gets to the caregiver more than any other single element. During the past 4 months I’ve often spent 4 and 5 hours on the phone daily acquiring the care Tom needs just to stay alive.
      Thank you, Patti for being here to read with me. You’ve stayed from the beginning and I so appreciate your loyalty. Sheri

      • You know, Sheri, I’m still confused though I’m sure you can set me straight. If you have BC/BS as your secondary insurance, why don’t they automatically come to the forefront after Medicare denies something? I don’t understand all this stuff and it’s very confusing to me. I know you said once (I think) that you didn’t want Medicare but you legally had to take it. Is that correct? But if they don’t pay for something, I thought it didn’t matter because then you had BC/BS to pick up the tab…….?????

        • Patti – It’s hard for everyone to understand. I pay for full coverage with BC/BS through my federal retirement and have since the day I retired. If I drop it, I will never get it back. The way Medicare works is that it’s the 1st payer and the medical provider is required by law to bill them first. We’ve had times when Medicare wouldn’t pay and our doctor was able to get a go around and BC/BS was able to pick up the charge. However, that doesn’t happen nearly as often as it should.
          The reason I kept BC/BS when I retired [although I have to pay the policy fees and they are hefty] I knew our medical cost would be horrific in the future. We also have Tricare for Life but they pay as a last resort. We have Tricare because of Tom being retired military. We do use our BC/BS as 1st pay for prescriptions and then Tricare picks up the deductible. That part is a real life-saver.
          It’s the federal government that requires us to enroll in Medicare, and pay for the pleasure for doing so. If we don’t have Medicare then the government takes away our Tricare for Life. It’s a sad situation when the federal government takes away TriCare from the service member that served 20 years because the gov wants to save money. What the gov squanders, they could easily allow the retired military population that has other full pay insurance to pick which they want to have. Does this help any?

          • Hi Sheri! When you say: “We’ve had times when Medicare wouldn’t pay and our doctor was able to get a go around and BC/BS was able to pick up the charge. However, that doesn’t happen nearly as often as it should,” that’s the part that I don’t understand. I thought with BC/BS as your secondary insurance that they get the bill for the services Medicare won’t pay for so that THEY can pay for it. What good are they if they don’t pick up the leftover tab after Medicare denies payment?

            • Patti – It’s a sticky business. Medicare would probably deny everything if they could get away with it. BC/BS almost always pays but here’s the hard part. The medical service may be an approved service according to Medicare but for whatever reason, Medicare doesn’t cover the service. This is the case for the shingles vaccine. Medicare is supposed to cover all preventive services. However, they won’t cover the vaccine but my BC/BS covers it at 100% and did when Tom and I both received ours.
              If the service is preventative oriented, BC/BS will almost always pay. It’s for the benefit of the company to keep the client healthy.
              My new rule of thumb: Never take for granted any thing or any service will be approved or paid for at 100%. Check for pricing before you accept whatever it is you are to receive.

          • Yes, Sheri, thank you for explaining. What a convoluted way of running the country’s health benefits!

    • Patti – How could I forget – Bailey brings me endless hours of joy. How could I forget to add this note. I hadn’t planned to get a dog so soon after loseing Prissy but I don’t know how I would have gotten through this whole ordeal without him in my life. He’s at my side almost 100 percent of the time. Presently he’s asleep on my desk.

      • I know what you mean, Sheri. We have never had any of our labs make it to 12 years old. Annabella will turn 11 next month and I think she’s the one who’s going to break that chain. She’s only on some light meds for arthritis. Maybe she’ll be the one. Anyhow, I know that when she passes, her son Jack, only two years younger than she, is going to freak out. One of our labs years ago – when her mom died – she became so depressed and so agitated, she was never ever the same dog. It was so sad to see. And I’m afraid for Jack when Annabella passes on. We’ve always gotten another dog to keep company to the dog left behind, though it is so very hard to get excited about a new pup when one has just passed away. A difficult decision but I can’t see Jack taking his mother’s death well.

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