"Do Good" Opportunities, Autobiography, Lewy Body Dementia, Uncategorized

The Age of Why

I am trying, with everything that I am, to be disciplined enough with laser focus, to complete and submit Someone’s Medicare (health insurance for the disabled) Reinstatement Request–that he accidentally cancelled repeating the wrong words (about an issue that he was correct in questioning)–a symptom of his progressing Lewy Body Dementia or as he likes to say, “Disorder.”  It is early-onset–which means Someone is not elderly but which also means that it is faster to progress and fiercer as it does.

Because Medicare was retroactively cancelled, all $108,000 from 2018, of Someone’s medical bills, are outstanding–and he is not covered yet for 2019.  If that were not causing me to feel the pressure of it all, his very large inguinal hernia mesh surgery #2 is having major complications and he may need hernia surgery #3, so I have to get this tome done sooner than later.  Over 450 pages and adding doctor letters, articles, medical records, an exhibit list and a narrative that is a challenge to compile even for the brightest and well-rested. (In this process, learning that general anesthesia is a complicating factor for this disease has been worrisome.)

Frayed and exhausted, I am a week past my self-imposed deadline. While legally there is no deadline, the consequences of not getting this done are great so every hour of every day that goes by pains me. During the time that I set aside to do this difficult task–no doctors, no appointments, no shopping, nothing was going to interfere–when two beloved dogs went from critically ill to nearing the end of time.  I put everything aside and care for them as tenderly as possible, turning them, washing them, syringing liquids into them, changing their linens…more.  One very ill dog is difficult, two at a time means give it all to God because it is not possible to manage everything without supernatural help and support. (Nothing is impossible with Him, I keep reminding myself as I say often, every day, “God. Help.”)

Someone gets upset when “his” dogs “time is up.”  He starts to act out behaviourally–agitation, argumentative and now, asking, “Why?” over every single thing that has to go on all day and all night.  I know that it is just a mixed up brain that instead of crying like I might do or being able to turn it over to God like he used to do in the past, knowing that (as we believe) that there is life after life and he will see them again, his brain is misfiring more than normal.  I have learned to handle the rough stuff but the asking “Why” here, there and everywhere is beyond me right now.

Today, I had to wash a red blanket that was dirty.  Someone wanted to put it in the wash and pour bleach all over it and turn the washer on.  “You can’t pour bleach on colors, “I said. “Why?”  “Well, it will ruin the color.  It will have a big bleach spot and then the red color will be a different color when it’s done.”  “Why?”  “Well,” I said as I kept trying to satisfy the ‘Why’s,’ “the material will be weaker and will probably get a hole in it if you just pour straight bleach on it anyway.  Besides, you are not allowed to handle bleach. Why are we even having this conversation?”

“Why can’t I handle bleach…” and round and round we went until a light dawned over my head.  This is a new phase of the always progressing Lewy Body that I am going to call the “Age of Why.”  It is like this with anything, anywhere, all the time.  I realized today that I am dealing with a two year old in a way–a 240 lb one albeit–who comes in and out of reality a few hours at a time each day, several times each day.

Some how, I need to stop giving in to the katrillion questions and find another solution.  I tried, “Because I said so,” but that didn’t work.  I tried, “Because it is a rule.” Sometimes that works.  Exasperated, occasionally I find myself not handling things as well as I’d like.

At 11 PM, I gave Someone 20 minutes to get into bed. (I feel like I am managing a child and not a 50-something man.) If he would just lay down, I could concentrate and work on his Medicare stuff.  I can tell it is going to be at least another two hours before he stops shuffling around and finding reasons to stay up all night like going through things that I threw out in the trash, lest I threw out a treasure (they each hoard particular things) or letting the dogs out in the middle of the night to play (and bark), giving them snacks and bones so they think it is “activation time” instead of sleepy time.

A year ago this May, I wound up with an ulcer in my small intestine that ate through to a blood vessel and I nearly died.  “Cut down on stress,” the docs all said.  I am feeling that pain again in my belly–just occasionally but it is distinctly there–the one that started a few months before I found myself in the ER.

Thanks for letting me share a little bit.  Maybe now I can get back to writing a very important six page narrative that goes on top of everything I have assembled.  I’d appreciate it greatly if you’d send up a prayer for the wings of angels to carry it to the people who can overturn what happened.  God willing, in a month or two, it will be reversed and I can call all of these angry physicians and surgical centers, etc. and have them resubmit their bills for payment. No one really understands what it is like to live with a disease like this until and unless you have–especially when it comes to money.  It is a daily mind-bender for me but that doesn’t matter.

In the meantime, the phones are under lock and key now–no calls are answered or made without me knowing to whom and for what reason. It is so difficult to start doing things like this to your adult significant other, who you have lived with for so long, but I have learned a lesson that I won’t soon forget. Someone sounds very credible and “normal” but really does not understand anything but the basics…

…like giving love and being kind to the dogs, helping the homeless and less fortunate (yes there is an amazing social awareness still in tact), worrying about homeless animals who may not have found a Rescue Ranch, and praying for our angels–by name–each night–which is extremely sweet and has a very innocent element about it. He knows who is helping, who sends prayer cards, who dropped off lots of doggy stuff at the mail, who sent Pasha a stuffed Bunny, “so she would never be without ‘her’ Bunny” and more.  He doesn’t know my name–or at least doesn’t use it anymore–but he does know yours–and he asks God to bless you daily.  (When I hear him praying, I stop whatever I am doing to lift my hand in agreement.)

Thank you for caring. Especially for caring.

Sending love and always, Hugs from Our Herd!

PS  All feedback/ideas on how to handle the “Why’s” is very much welcome!

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Angels, please know that your help and prayers are still needed even though I set aside this time to do the Medicare Reinstatement and to take care of Charlee and Pasha.  I will write next week–I just have got to get this document submitted and then let God take over!

Please don’t forget about us!

In the meantime, if anyone wants to send prayers, gift cards, fast food gift cards, a generic Visa, greeting cards (Someone LOVES them) I would be so very grateful.  I am beside myself, just walking in pure faith, that everyone’s needs will be met each week.

For instance, tonight, because of your kindnesses, I was able to just crumble Whopper patties and some real McBacon and add no-salt green beans and some Chinese-restaurant rice (they only charge me $1 per large container) and dinner was done! (Kibble added, too, for the bigger dogs who don’t have mouth-issues.) In addition to the stove and oven being locked down and silverware now consisting of plastic spoons (and one paring knife I have hidden away for cutting up veggies), it is a lack-of-time issue in addition to a safety issue when I plan to cook or why I can’t.

Mailing address:  Rescue Ranch, 4057 Riley Fuzzel Road, Ste. 500-130, Spring, TX  77386

Anything e- goes to: a.rescue.volunteer@gmail.com  (amazon credits, email, etc.)

Photo: Bunny (L) and Pasha in their doggie carts playing with sweetie pie, Junie.  (This was taken before Pasha developed cancer.)

Helpful Links:

Lewy Body Dementia Association: lbda.org

To Adopt, Foster, Rescue, Volunteer to help many types of animals: Petfinder.org

The Rescue Ranch website: firststop-laststop.com  (Next week, I will write more about Charlee and Pasha there).

 

“We could never learn to be brave and patient, if there was only joy in the world.”  

Helen Keller

 

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Autobiography, Lewy Body Dementia, Spiritual, Uncategorized

Like Nails on a Chalkboard

To those of you who haven’t heard from me, just know that all is OK.

Someone has major complications from his second hernia mesh operation and has to have an ultrasound and CT scan.  He now has a testicle the size of an ostrich egg and a very large band of rock hard colon? or tissue on running on the outside of his abdomen from his waistline to his privates. Now he has mesh just under the skin (an external repair was tried first) and now inside of him but is not eligible for the mesh lawsuits because it didn’t “let go” per se.  But…

If you remember, his medical insurance was wrongfully cancelled retroactively…or really, the cancellation is invalid and I am hoping to prove it through my documentation and research.

(To read how it was cancelled, see my previous post: https://icantbreathe.blog/2019/02/04/superbowl-sunday-together-time-turns-into-nappy-time/ )

…so I am writing a thesis of sorts of 400 plus pages to get it reversed retroactively. God willing.  Otherwise, we will incur another $108,000 in debt and he will have no medical insurance until July.  With this hernia complication, that’s a long time to wait.

In order to do this, I had to get four doctors’ records, statements and opinions, collect a lot of previous medical information about Someone’s Lewy Body Dementia AND the hernia mesh surgeries and do a whole lot of research.  It feels like a piece of your soul basically goes into something like this.  I have read more about Medicare law than I ever wanted to.

If that wasn’t enough, two dogs are critical–on the edge of God calling.  Charlee Barlee, is very close to being an angel we know in heaven, whose beloved white Poodle Doodle, Jed, is keeping him company and making sure that I hear his barks whenever his Charlee needs a drink or needs to get up to go potty, etc.  It is amazing to watch what an animal bonded pair relationship looks like. (I have seen them before and they are very special.) They should never ever be separated (if fostering or rescuing) and already my heart is breaking for Jed.

Charlee is wanting to keep me within sight all the time.  His heart is failing (Congestive Heart Failure) and his belly is swollen and big from ascites (as-site-eez) or water in the tissues that his heart isn’t clearing.  Charlee and I have been having talks about what comes after life–and who will probably come to greet him (here) and how he can come visit us anytime.  I also reinforce that we will see each other again and it is that hope, that helps me to smile through my tears eventually.

Pasha Dasha has a cancerous tumor the size of a swollen plum that developed almost over night.  It is on a stalk or at the end of a band of tissue extending it away from her body (her rear flank). I’ve been trying to find a surgeon who can remove it without putting her under general anesthesia.  She will be 15 this year and just as a quality of life issue, removing it would make her more comfortable.  In the meanwhile, external cancerous tumors create a large amount of exudate (wet, grey, shedding of muck) and so she needs to be cleaned up and the tumor treated and wrapped often.

Between reading, working on the computer, no sleep and crying, my eyes are taking the worst of it.  I have to take an hour “eye break” every three hours or so.

Before God called my mother, she had sent me a basket of things, recipes and notes from her (that is almost empty) I might need some day–to go into when I think of her.  It is as emotional as it is sweet and the things I find are funny, useful, and thoughtful.  I took out the cucumber eye pads one time and put them in the ‘frig in case I ever needed them.  They are a godsend right about now. I wish she were here…She loved Someone like her own son and so I know that she is here with us “in spirit” and in love. (It brings me to my knees when one of her notes drops out, in her handwriting, and starts with, “Hi, You Two…I love you so much…”)

So, please forgive me for not responding to email or texts or mail right now.  I must use every ounce of energy I can muster to get this Medicare Reinstatement Thesis in–it is taking energy from deep inside me to do this but if I start diverting my attention, I will not be able to do it.  Hoping to get it out this week, and then getting our Senator involved after that, I can take a break and will be back in touch with y’all.

In the meantime, please know that I am so deeply grateful to those of you who have cared and still cared about us.  This is a very lonely, scary, uncharted place to be in.  I don’t know what people do if they don’t believe in God and have their faith to stand on because it seems like at least hourly, I check in with Him just to keep going right now.  (If I didn’t have to do this report, I wouldn’t be so overwhelmed but it is a “must do” and there is no one else to do it.)

I love you all very, very much and open your cards slowly and thoughtfully and read them and treat them as precious gifts and hugs.  I take your gift cards and put them in my wallet to use when I need a break (like now) from cooking and managing 6 different sets of eating demands (special needs/end of life dogs are very picky!)  I tuck away your other gifts for emergencies or those times when there just isn’t funds to cover whatever is needed–whether you designate them for the dogs, for what is needed or for Someone.

Please say a prayer that I have the strength of spirit and soundness of mind and argument to get this reinstatement request done and heard.  I will continue to say prayers of thanks for all of those helping us.  Also, please keep Someone, Charlee and Pasha in your prayers.  I just hope that they hold on while I get this submitted.  I don’t think I would have the energy of spirit to grieve and get it done so I am pushing myself to get it out.  My eyes will be so swollen from crying that typing will be out of the question so the urgency is definitely being felt so Someone can get help.  Then, I will turn it over to God, knowing that I did everything I could do and it is in His hands.

Please continue to write and email and help if you can.  Next week, I will catch up on all of my “thank you’s” and responses.  Please except this, “THANK YOU” for now and a big hug!

Thank you for caring. Especially for caring.

PS  For those of you who have been following my own stuff, the full-body PET scan was finally approved mid-Jan!  I think the insurance company delayed it for three months to carry it over to a new deductible year since last year, with me having been emergency hospitalized, spent a week in the ICU, had transfusions and surgery and Someone had surgery, too, in 2018, there was no deductible left and the PET would have been free.  Now, its a new year and everything reset and we would have to pay 100% of it to go towards our high deductible plan. My next project is to get the deductible waived.  What happened seems kinda fishy and like some insurance law was broken or at least some moral ones were.  Research, more research to do while the docs are biting at my heels to get the test done for my own sake.

Mailing address:

Rescue Ranch, 4057 Riley Fuzzel Road, Ste. 500-130, Spring, TX  77386

Email for e-anything: a.rescue.volunteer@gmail.com

 

I Love You.

We Love You.

The Herd Loves You!

 

“The best kind of people are the ones that come into your life and make you see the sun where you once saw clouds. The people that believe in you so much, you start to believe in you too. The people that love you, simply for being you. The once in a lifetime kind of people.” —Anonymous

 

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