This is Me

Welcome to my little corner of the world in blogs. I hope you enjoy my “thoughts out loud” as I share about my latest knit, crochet and sewing projects,  activities and my reflections about the challenges of living with chronic illness.

Don’t forget to view my other pages on this blog with my favorite quotes, books and recipes. Thanks for visiting.  For those who happen to stumble upon my blog, I hope you find moments to laugh and hope with me.

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Well, I have been busy trying not to kill myself with doctor’s appointments, labs, tests and more doctor appointments. I have been going to a medical related event every week now for the past month or so, and I really don’t know how I am going to manage it all once I get all my specialist referrals and stuff in HMO land. I know for many of you, getting dressed and out of the house is a daily routine procedure, done almost automatically. But for me, this has been overwhelming and exhausting. I have less spoons and am struggling to keep my knitting mojo.

My New Pain Doc

My New Pain Doc

One of the doctors I managed to visit was my new pain specialist. We got along fine, and the appointment ended with a wonderful shot of Torodol in my butt. I know the effects are temporary, but it made my ride home so much easier and helped me recover my spoons too. The new pain doc is also a neurologist, and that was a nice change of pace. He understood that my pain and health conditions were separate from my cerebral palsy, and also knew some of my stuff was not “fixable”. But he did offer me a new possibility and hope for some relief from my screaming body; it is a new non-narcotic drug that is derived from the venom of a cone snail found in the depths of the sea! Imagine that?!? This non-narcotic drug (called Prialt) would be delivered to my body directly into my spine through an implanted pump device; the venom would slow down the nerve impulses and block the pain messages to my brain. A little sea snail and its deadly venom could completely change how my body screams out every day. The results vary, and there are some very serious risks. And, it could take several months if not all year, before I get all the tests and approvals needed to even try the device and drug. The drug could not work at all, give me psychotic hallucinations and memory loss, or I could even be allergic to the pump device.  But it has given me a small bit of hope, something I have been losing for many months now. I started researching these venomous cone snails, and have now become snail obsessed. I am reading about snail life and how amazing these land and sea creatures are. How they have survived environmental changes and adapted to new environments, searching and creating safe places to live each day. The beauty of the cone snail and their elongated shells had me start a snail shell collection. And it is amazing to watch them capture their prey! Who knew a snail could be so deadly? Just watch this National Geographic video: I realized that my chronic health conditions have forced me to live life at a snail’s pace, much slower than the rest of the “normal” world who is busy with endless activities, errands, commitments and chasing dreams of financial success. Instead, I spend my days doing the most basic tasks, with short “to do” lists, and few long term goals. Like the snail, I have a limited territory to travel; my social life is limited and isolated in its own terrarium, with only short distances outside the house for doctor appointments and small errands. The more my body attempts to do, the more it screams and forces me to walk inches at time, sometimes barely making it back home. I am like a snail — my body often slow and sluggish, my tentacles focused on survival and simple tasks, and at the end of the day, looking for safe places to hide, rest and recover. I began telling a few friends about these cone snails and the potential treatment from snail venom. My friend Melanie recommended a book titled, “The Sound of a Wild Snail Eating” by Elizabeth Tova Bailey. It is the true story about a woman who becomes bedridden my a mysterious chronic illness, and  in the midst of trying to live through her unanswered questions, befriends a wild snail who keeps her company in her studio apartment. Her intimate observations about this wild snail and its activities is captivating and without realizing it, this snail teaches her invaluable lessons about living life at your own pace and not giving up.

The Sound of a Wild Snail Eating by Elizabeth Tova Bailey

The Sound of a Wild Snail Eating by Elizabeth Tova Bailey

Those who live with a chronic illness will hear their own voice in the author’s words and experiences, while all the readers can learn the every day lessons of this snail. Lessons in life about slowing down to see and hear the littlest of things because every moment matters. Lessons reminding us that every living creature is here for a reason, even a person who is broken by pain and illness and living life at a snail’s pace. And lessons of change, as something we battle, adapt to, survive and actually live through it. Read every page of the book – from the quotes, to prologue, each chapter, epilogue and appendix. Every word is part of this story and worth it. Then visit the author’s website at http://www.elisabethtovabailey.net/ to hear the sound of a wild snail eating, and find more chronic health resources, discussion questions for the book, and even curriculum options.

I don’t know if the snail venom will work for me. I don’t know what lies ahead for my body as it continues to struggle to survive the most basic of days. But learning about the snails has reminded me that my life still has value and purpose, even at a snail’s pace. That  I, too, have found ways to adapt, survive and  live through the unanswered questions.  And the snail reminds me that taking time  to rest and recover  from the world is ok, and normal for living creatures. And like the snail with its venom, I can still fight on. I am so grateful to snails. Even if their venom doesn’t end up helping my body, their spirit has lifted my soul. Just call me snail girl. And, don’t be surprised to see  some knitted snail monsters in  a future post. Please share spoons when you can as I will need them for all these doctor appointments this year. And remember to practice a random act of kindness. Sharing love and light, and hoping you fall in love with snails too.

For those of you who don’t know what my reference to spoons are, read the Spoon Theory here.

Cone Snail Shells

Cone Snail Shells

© https://kkhymn.wordpress.com

Yera by Ambah

Yera by Ambah

In the midst of all the chronic crap, new doctors and insurance hell, I have been obsessed with shawl knitting. In particular, I have gone mad over the Yera Shawl by Ambah on Ravelry.  I was lucky enough to test knit the pattern for Ambah last month, and the pattern has just been released on Ravelry. Yera means “joy” in Australian, and it really is such a joy to knit! During the test knitting process, I knit three of them! I have gifted two of them and have decided to keep the first one for myself for once. So far, the universe hasn’t changed my mind about it. LOL The Yera is an asymmetrical shape shawl that also wears lovely as a scarf. The pattern uses approximately 800-850 yards of fingering weight yarn, in three colors of your choice. You can use less or more yardage as desired; just increase or decrease the number or repeats. The lace pattern is a lovely 12 stitch lace pattern that is repeated across each row. Each repeat is a total of 36 rows, and the only stitches that change slightly are at  the beginning or each row. The 12 stitch lace pattern has a nice rhythm to it, and is easily memorized. If you are not familiar with charts, this one is a good pattern to learn for reading charts. The pattern is well written and charted, suitable for an advanced beginner or an adventurous knitter who wants to try lace. There are lots of yarn overs in the lace pattern, and purling or knitting the yarn overs can be a bit fiddly at first. But, it just takes practice to get the hang of it. Go slow and steady in the lace to help avoid dropping stitches, and definitely use a row counter to help you keep track of your rows. For my Yera shawls, I did end up changing the final edging of the pattern to match the cast on edge. At the last repeat for the shawl, I knit Row 36 instead of purl, then knit two more rows before doing the stretchy bind off. The video for the bind off is here . I also changed the purl front and back stitch (pfb) in the pattern to knit front and back (kfb) because my hands did not cooperate with the purl front and back stitch. Blocking this shawl can be tricky of you want the asymmetrical shape. The first time I did this pattern, I forgot to look at the diagram measurements and instinctively blocked the long sides to have the same length. The second time I was able to shape it properly. I made mine slightly larger to show the lace pattern more; my stitches are semi tight. Be sure to block it so that one of the longer sides is at least 10 inches shorter than the other long side to ensure a more asymmetrical shape. You can see my blocking photos on my Ravelry project page here. The pattern is available for purchase here on Ravelry. Ambah’s group on Ravelry is doing a knit-a-long for the Yera pattern from April 10 to June 10, 2015, and prizes will be awarded! You can find the thread for her Yera KAL here. I  hope you enjoy the pattern and jump in on the knit-a-long! May your stitches be filled with joy, love and light. Don’t forget to practice a random act of kindness today. © https://kkhymn.wordpress.com

It's Your Birthday Yera

It’s Your Birthday Yera

Yera Shawl by Ambah

Yera Shawl by Ambah

Starry Sky Yera

You are in Denial

You are in Denial

I don’t even know where to start with this one, It has all been so overwhelming. I have now lived in Medicare HMO land for several months, and it has not been good at all. My primary care doctor has done her best to put in requests for the things I need, but it has been one denial after another, for things that should have been easily approved.

It started with a pre-approval request for my Lidocaine pain patches. I have gotten these patches with no problems in the past, so I was surprised to get a denial letter from my HMO Medicare plan provider. My primary care doctor tried to appeal the decision but it failed to get the approval. I could attempt to appeal with an administrative law judge, but I would need a minimum of $150 in court fees (it most likely will double in cost in California) just to make the appointment! Not to mention the fact that my body could not handle the entire process of appearing in front of a judge. The appeal process ended for me, and for most people who need it. The pain patches help me survive when I need to run errands and drive anywhere on my own without the need for medication. They are part of my pain toolkit so that I don’t need to rely as heavily on pain medications and build a tolerance or get addicted.  It has been devastating.

My Tombstone

My Tombstone

Without my pain patches, I needed a new TENS unit. Although TENS units are available now online, most are not strong enough to really do a good job for my back and butt pain. The prescription TENS units are the best, but cost over $600 out of pocket to purchase. I asked my primary care doctor to put in the request for a new TENS unit, and once again it was denied. Really? I am not asking for heroine or morphine; medical marijuana seems easier to get than a TENS unit! The request was denied because this HMO has not bothered to look at all my prior medical records, thus thinking I have no medical history of chronic pain. So I need to see their Pain Specialist to be evaluated. REALLY? I couldn’t believe it. I have been in tears ever since. I am pulling teeth just to get the basics for my care. I have to prove all the chronic crap all over again? It is going to take forever to see all the specialists I need to and to get established with them. Why do I need to prove my disability and chronic crap after I have already proven it? It is beyond insane. I truly believe that the HMO hell is designed to make everyone who is “sick” just give up and die.

After talking with my primary care doc, I decided to go ahead and make the appointment with the pain specialist. I am hoping he can just see me for the medical mystery meat that I am, and help me get the tools I need to survive my screaming body. I am not an addict looking for an endless supply of pain medications; I need my pain patches and TENS unit!

I am not even going to write about my first visit with my new Rheumatologist. Suffice it to say that I am hoping she sees the light of day after reading my medical records and realizes that aerobic exercise is not an option for me. Yeah, she said that. No, she was not joking. I told her my expectation for any of my doctors is to help me get more good days than bad, not to cure or  fix me. Her response was aerobic exercise. A reasonable option if fibromyalgia was my only chronic condition. Totally unrealistic, however, with my list of chronic crap.

I am definitely fighting the blues every day now as I feel more trapped in my screaming body and living in HMO hell. I am still knitting and doing random acts when I can, but I have overwhelmed with grief. I am  grieving my old doctors, my pain patches, my TENS unit and wishing every little thing wasn’t a battle. I remember when doctors were in charge of their patient’s care and  prescribed what was needed. I feel like  Edith Bunker at the piano singing “Those Were the Days,” except I  am crying through every note.

Yarn Therapy

Yarn Therapy

One last thing. If my health insurance won’t cover the medical things I need to help my screaming body, I  think they should pay for my yarn therapy. Yummy yarn too; no generics. Knitters say, ” I knit so I don’t kill people,” but  knitting saves me too. Will someone give me a  pre-approved script for yummy yarn please?

Practice a random act of kindness today and send some good mojo out into the  universe please. It is my only hope for this world these days. Dr. A, if you are reading this, I miss and appreciate you more and more each day. Will you please come to HMO land to help me? Never mind, I wouldn’t wish this on anyone, provider or patient. LOL.

© https://kkhymn.wordpress.com

Saroyan

Saroyan

Well, last week was a tough one for me. I saw my new primary care doctor under the HMO Medicare plan. It was not an easy appointment. First, I ended up parking several blocks away from the doctor’s office because the parking lot next to the building only took cash. Then, I realized that I had forgotten the two page summary sheet that I had typed up with a list of my primary health conditions and medications, and former doctors. I had to handwrite as much as my brain could remember on the new patient forms, and I know I missed a lot.

My new primary care doctor was approachable and direct. I liked that about her. We talked about what I needed and the challenges of being back under the HMO plan with so many specialists. She was not too hopeful about getting the referrals I needed back to some of my former specialists but she said she would do her best. More than likely I will have to be referred to her specialists first before attempting to refer back to any of my old specialists. We will have to pick our battles and take it one specialist at a time. It was still discouraging, even though I expected a not so easy answer to my request.

Wirra

Wirra

I was at the office for almost two hours. My body was in screaming pain by the time I was ready to leave. I asked my new doctor for a Torodol shot so that I could drive home safer. But she told me that she couldn’t give me the pain shot because they did not have access to it there. It was completely unexpected and through me for a big loop. I did not know how I would make it home with the pain surging to every muscle and bone.

I realized later that the only reason I was able to get the Torodol shots when I needed them was because my old doctors were at a university hospital, and they had access to those pain medications from the hospital pharmacy. It is hard enough for me now to drive all over town to my doctor appointments and labs, but now I wont be able to count on getting a pain shot to help me drive home. The impact of HMO-land got even more depressing and stressful. I was so lucky to be able to drive 10 minutes tops to my old doctors and labs, and to be able to get a pain shot when I needed it to help me survive the rest of the day. My heart was crying all the way home as my body was screaming. And it was a miracle to make it home.

The bright spot of being in this plan though was that I wont have a co pay to see my doctors or specialists, and the prescriptions will also cost me less than before. But it seems that I am starting all over in HMO-land, having to establish new relationships with all the doctors and hopefully coming to a good understanding about my care. It is exhausting to think about it, let alone survive it. I am doing my best to remain hopeful. But, in truth, I feel like giving up.

Pendulum

The only thing that is saving me right now is my knitting. I have been knitting more shawls and learning new techniques. After learning short rows, I decided to finally learn how to knit cables. I managed to knit one fingerless glove with a cable pattern along the wrist and arm. I have knit a Saroyan, a Wirra, a Pendulum and a Ka-ana shawl. I haven’t decided which knitting technique to learn next. I think I will be practicing short rows and cables for awhile.

I am also test knitting a shawl for Ambah, and reading more novels using the Overdrive app from my local library. With this app, you can check out and return  e-books and audio books from the library without leaving your home. The books appear on your bookshelf in the app or e-reader, and disappear after the loan period is up. Yay for no late fees!

Ka' ana

Ka’ ana

So I am still here.  Taking it one step and stitch at a time. Still practicing random acts of kindness. Still hoping for more good days than bad. Still adjusting to the changes in my life and health care. Still grieving the losses. I don’t know what the future holds. But I know we will all walk into it as best we can.

Love  and  light.

© https://kkhymn.wordpress.com

So the New Year is here – finally. And, I decided on some resolutions for the year. Resolutions I am determined to keep, for my own sanity and creativity.

Goodbye Facebook

Goodbye Facebook

First, I decided to give up Facebook for Lent, and actually delete my account this year. I realized that the way Facebook is built, you really end up feeling like life is a popularity contest with your posts, when it never has been for me. Suddenly, I found myself getting more upset with certain friends ignoring my posts and not others. Or not responding to my posts when I regularly respond to theirs. When in reality, your friend may have not seen your post in their newsfeed at all, or unintentionally missed your response in the midst of several others. Yeah, they may be ignoring you, but why was I becoming more and more cyber sensitive? When in the big picture, friendships should be based on more than that? And I was never a person who needed popularity or recognition?  Yes, my real friends are on Facebook and it was an easy way to see what they were up to, if their posts showed up on your newsfeed. But, no, it was not the same as picking up the phone, writing an email or letter, or meeting them for coffee. Facebook actually made me feel more isolated and alone in the end, rather than connected to anyone.

And then there is the constant news of the world and all its crises, reinforcing whatever political and socioeconomic views you already have, and not really creating any sort of meaningful dialogue. More often than not, my news feed would be filled with the latest statistics about the dysfunctional government, the latest school shooting, missing person or animal being cruelly abandoned or mistreated. Once in awhile there would be a feel good story about a random act of kindness, a charity event, or an inspirational quote. But all of it did the same thing after awhile – stole my spoons and time that I could be reading a real book, knitting a new project, having a conversation with a friends or family, or playing with the cats.

And this leads to my next resolution: To learn at least one new knitting technique this year. Actually, I want to learn new creative things all year long. whether it be with knitting, crocheting, sewing, art or dolly related. Even though I have been knitting for several years now, I still have plenty to learn. I want to learn how to cable, do entrelac, short rows, read charts properly, and more.

I have been knitting shawls lately, and found several that I want to do, but they have this shaping technique called short rows. Something I have avoided learning because people have told me it can to be difficult and take too much concentration. This month, I finally decided to learn how to do short rows, also called wrap and turn, in a knitting pattern.

I picked a shawl pattern that is almost completely based on short rows to learn the technique. The pattern is Pendulum, available for purchase on Ravelry. The pattern instructions were very vague, especially for someone new to the short row technique. I had to do a ton of research on short rows before I could even understand how to begin the pattern. But now that  I figured it out, the pattern has been very relaxing and enjoyable.

There are several different  ways to work short rows in knitting. Each method is different, and none of them are 100 percent invisible in your work. The short rows create little bumps, and if done correctly, leave minimal holes or gaps. I tried several versions of the short rows, including the German short row technique and the traditional wrap and turn.  Neither worked as well for me as this bobby pin technique (#3) shown very quickly in the video below:

 

I have created a photo tutorial on the short rows with a bobby pin, seen below.  It is based on the Pendulum pattern, but the concept is the same with any pattern using short rows.

In the Pendulum pattern, you work the two edge stitches and knit 18 stitches across before doing the turn for the short row. Then you work the row on the wrong side of the pattern. Then you work the next row on the right side of the pattern, knitting until you have gotten to stitch #18 on that short row. You pick up your wrapped stitch on the bobby pin and place it on your left needle, next to stich #19 on your needle. You knit that wrapped stitch together with the next stitch, #19. Then you start again by knitting 18 stitches past the stitch you have just knitted together.

I hope this helps someone learn short rows in knitting too. And encourage you to keep learning something new this year.

 

Short Rows in Progress

Short Rows in Progress

 

Short Rows in Progress

Short Rows in Progress

 

Finishing the Short Row

Finishing the Short Row

 

Resolved in 2015, I will be reading more books, sharing conversations with friends and Tony, learning something new, and playing with my cats. I will learn about what is happening in the world on my time, watching the evening news. My friends will remain and we will keep in touch as best we can the old fashioned way. And the random acts of kindness will continue, with or without recognition. Hopefully, I will find some balance in my life again, with some new opportunities and more time to reflect, relax and create.

© https://kkhymn.wordpress.com

I have been busy in the holiday chaos just trying to survive my screaming body and knitting. I decided to take a break from my monster and toy making to knit some accessories again. I am not sure if I am going to keep anything I make, because they usually end up as random acts of kindness (RAK) . But, it was a good excuse to go through my stash and figure out what yarns I had and what stash I can give away to friends who would appreciate a holiday RAK package.

Eliyna Shawl by Ambah

Eliyna Shawl by Ambah

I decided to try knitting a shawl, and went on Ravelry to hunt for some great patterns. I almost joined a mystery knit a long, but then chickened out cause I wanted to see the entire pattern before deciding on what colors to use. Color choices can make such a huge difference. Then I found some wonderful patterns by a designer named Ambah. She had a knit a long this past month, and even provided a discount on her patterns. Something I really appreciate on my limited budget. You can find all of her patterns on Ravelry here. I bought her Eliyna and Sea Dragon shawl patterns while they were on discount, and started on the Eliyna right away.

The Eliyna shawl is a simple pattern that is mindless knitting. After you do the set up row, you just knit the same garter row pattern until you are ready for the picot edging. You change colors every two rows and it is easy to keep track of how many rows you have knitted because of the stripes in the pattern. I knit 93 stripes – or 186 rows – before doing the picot edge. The hardest part of this project was patience to knit all the garter rows but I needed some mindless knitting to distract me this holiday season. I still miss my sweet Reina so much and the only thing that fights the tears are my knitting projects.

I joined the Ambah group on Ravelry and am really loving all her patterns. They are simple and elegant, and the results from the people’s projects are beautiful. I was surprised to hear from the designer herself this month after I finished my Eliyna shawl. She wanted to gift me one of her patterns after reading about how I do RAKs as a part of my every day life. It brought me to tears because I have been on such a tight budget these days, and even though I try to encourage others to RAK in their lives, I don’t always feel like anyone is listening out there and I am the odd bird. So, now I am able to Shawl-La-La through the holidays with some more Ambah to knit.

I am so grateful for my knitting therapy and for the kindness of others. It really does make a difference. I am planning on knitting some more shawls, scarves and fingerless mitts. Most will probably end up as future RAKs. But maybe I will keep something for me this time, just to remind myself that someone is listening out there and remembers me too. Practice a random act of kindness doing the holiday season. And make it a part of your life in the New Year. Every act counts, seen or unseen. You never know when your act of kindness will remind someone else that they are remembered, listened to and not forgotten in their own battles.

© https://kkhymn.wordpress.com

Navigating the medical mayhem is part of living with chronic illness. Not only do you have to find a doctor who believes your pain and fatigue is not “all in your head”, but find a doctor who is willing to diagnose you properly and then treat you for those conditions without assuming you are a drug addict looking for pain medication or a hypochondriac. If you are lucky enough to find a doctor who believes and understands you, and knows you are doing your best and aren’t looking for a miracle cure but just more good days, it is a small miracle.

It took me many years to find a team of doctors that were able to diagnose and treat me for my long list of chronic conditions. And for a team of doctors that communicate with each other about my treatment goals and results. In addition, all these doctors were working all under the same hospital system, all in buildings and offices just minutes away from my home. I did not have to drive all around town, through nightmare Los Angeles traffic. My Rheumatologist in particular, has been wonderful to me. He didn’t make me go to every specialist for all my labs. He ran them for me with the tests he already ordered, so that I did not have to make multiple appointments with multiple specialists to get the same stuff done. If anything unusual showed up, then I would make an appointment with the appropriate specialist for follow up. It saved me money, time and energy – all of which are in limited supply for my body. He understood that I knew my own body the best, and so if I told him something was not working for me, he knew I was not making it up and would find another option. He did his best to give me more good days than bad. I was one of the lucky ones.

But now I will most likely have to say goodbye to all my specialists. My Medicare health plan is being cancelled at the end of the year. It was a supplemental PPO plan that allowed me to see all my doctors, even though I had to limit them this past year because the co-pays were so expensive. Something changed in the Medicare requirements for the state of California, that has resulted in the Medicare PPO plan options to be cancelled. It would be too expensive for the insurance companies to give that option to California Medicare recipients.

Health Care in the USA

Health Care in the USA

People think that once you get approved for disability, everything is set for you and you are easy street cause you don’t work, get a disability check every month, and healthcare. Let me tell you that I would never wish my life on anyone. You can’t live off your disability or social security check; it isn’t enough money to pay all your bills and have a roof over your head. Most people on disability have to rely on their spouse or their family to survive and not be homeless. And the medical care under Medicare is not free. You still have to pay for it, and you don’t get all the care you need if you have a lot health problems. Your choices are more limited than ever under Medicare, unless you have the out of pocket funds to pay for the extra care you may need. And, the commercials for the Medicare Advantage plans  that say “Choose Your Own Doctors” don’t tell you that you need to have a PPO option to do that.  Or, you have to already have doctors that are on the HMO plans for it to work to your advantage. If you are married and your spouse still gets healthcare through their work, or if you are getting disability benefits from your former employer, it isn’t so bad because the Medicare ends up being your “back up” plan, covering any additional expenses not covered by your primary health insurance plan.

My Medicare coverage was survivable when I had my PPO option. All my doctors are specialists. And all my doctors are PPO doctors; they don’t take HMOs because of how screwed up that system is for them and all the additional hoops required to give their patients care. I understand why they don’t want to be in contract with HMO plans. HMO plans work best if you are healthy and don’t have lots of doctors and specialists to see. I gave up on HMO plans a long time ago. And, once all the chronic crap started, I knew my only option would be with a PPO plan.

But now that I no longer have a PPO option. I have had to spend the last couple of months trying to figure out what my options were. I could stay on the Original Medicare plan, pay that premium each month, and just know that I would have to be prepared to pay up to 30 percent of the costs for my medical care out of pocket. In addition, I would have to pay for a separate prescription plan premium. And, still have co-pays and other out of pocket expenses. I would not have much hospital or emergency coverage, and there would definitely be some major medical bills from any emergency or hospital visits.  My doctors all take the Original Medicare plan, and I would be able to continue seeing them with this option.

Sounds like a solution, right? Not really. I have been going through my statement of benefits this past year just to try and figure out how much out of pocket costs I could be stuck with under this option. Just to visit my Rheumatologist for my trigger point shots would be over $120, not counting the costs of any lab work or tests that are ordered, or the out of pocket costs of my medications.  This is on top of the monthly premiums for the basic Medicare coverage in the first place. I would not be able to afford getting my annual heart test, which is considered an outpatient surgical procedure, because I would end up with a bill of several thousands of dollars! So, yes, I could keep my doctors, but how much care could I afford to receive when my out of pocket expenses would be too much for my limited budget?

So the next option would be to consider a Medigap plan. It would help cover some of the medical care costs not covered by Original Medicare. Maybe 20 percent. It is not a Medicare Advantage plan and has no networks, so I could still see my current doctors. Well, sounds good until you know how much a Medigap plan costs. If you are under 65 years old, it can cost anywhere from $250-$350 a month! This is on top of the monthly premiums for the Original Medicare plan and the Prescription Plan. That means I would have to pay $550 per month just to get most of my medical care covered, and still have some bills on top of that for the 10 percent that isn’t covered.

HMO Help Desk

HMO Help Desk

Next option? It has killed me to do this. I have been screaming and agonizing over this. But I had to start calling all the HMO Medicare Advantage plans. None of them had doctors at UCLA or USC listed, even as a facility for care. Only one had a new contract with Cedars-Sinai. The HMO plans had some specialists listed, but very few had pulmonary heart specialists which treats my heart condition. And the list of Rheumatologists were limited as well, so it would be a roll of the dice to find one that believes in fibromyagia and treats it. And it looks like I would end up driving all over town again to see my doctors, fighting the traffic and the pain of my screaming body after the drive and the wait in the waiting room.

I called and researched and talked to multiple representatives in the different Medicare HMO Advantage Plans. and it has been exhausting. I finally one plan that listed my doctor’s hospital but not my doctors. It did not make sense. Why list the hospital locations but not have any of the doctor names listed as well? I called them up and discovered that my doctor’s hospital is considered a specialty hospital in their plan. If I can find a primary physician to refer me to a specialist there, then it would be considered in network and covered by the plan. The representative explained that most doctors don’t want to refer out of their own network of doctors that they work with, so I may not have much chance to get a referral to my specialists. But at least it is a chance, however slim it may be.

So, after much heartbreak and agony, I signed up for the Medicare Advantage HMO plan. Starting over with doctors is overwhelming. Fighting for referrals and insane waits for appointments are in my future again. Not to mention the traffic to get there. I will have hospital and emergency coverage, and outpatient procedures are also covered once approved.  With this HMO plan, my copays are reduced significantly. So, once I get all my doctors established again, it could be a good thing. But my Christmas wish is to find a good primary care physician who will work with me to see a few of my former specialists again.

I am still preparing to say goodbye to my two favorite specialists next month. I am already grieving the loss of my doctors, cause I know that things will still be harder under the HMO system to get my care. I would never wish my life or any of this insanity on anyone. Being disabled. Getting disability. Being on Medicare. It is not easy. It is an endless process of hoop jumping, paperwork, phone calls  and headaches. Every day I am saying goodbye and grieving a loss as I live with my chronic illness and pain. This is another loss and change I will adapt to, but I don’t know how my body will survive it.

The next month will be spent researching doctors on the list. I will make a list of potential doctors to call in the new year. I hope my search for a primary care physician will be short and sweet. And that any new specialists I see will be a good match for me. Otherwise it could take years to find a good team of doctors again.

Still knitting monsters. Still doing random acts of kindness. Still hoping the universe will be kind to Yoshi with his cancer this holiday season. Still grateful for Miya and for my life with Tony. Just hoping I don’t get killed in this Medicare minefield and end up in HMO hell.

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