Showing posts with label keep hope. Show all posts
Showing posts with label keep hope. Show all posts

Sunday, November 15, 2015

Medicare Advantage Plans, Kidney Stones, Pain, and "pain" from life and all we know... trying to find that positive light admist all the negative's....

Thank you so much Tracie L Carlson and Lourdes Villegas-Anaya !!!!   I so appreciate the kind words, and giving me the courage to try and move past all of the nightmare's life can pitch at us, in any given moment. None of us are "immune" to life's way of trying to take us down further each time things happen. Especially when SO MANY happen all at ONCE! I also know that I am NOT the only person on this Earth with a world of problems, and a universe of pain and suffering. I have tried to find a way back to the "light" in my life... although not an easy task. In fact, you are both correct, a great deal of putting up the tree so early, was so that myself and Bub's can find some warmth and spirit since this nation and world seem to be so totally cold hearted and full of so much indignation, terror, and things we usually imagine to only happen far away from us. Yet, that is not true. Whether we are suffering from illnesses and pain, or heart break from those we thought never would cause it, or the loss of someone so special, like Tazz, and my Dad who passed away 10 years ago, and I as I say the "loss" of "oneself" which when health deteriorates so badly, and chronically, it is so very easy to "lose" who you thought you were... we all change and grow, just a fact of age, wisdom (for some), and the way our lives are meant to be... but when you feel as if you have lost your very core of spirit, you inner most power, your ability to see the world with different eyes, trying to not become bitter, and full of loathing, all too often of your own body, and mind.. the fight is not a simple one, nor is being alone to deal with it ever easy either. Even now for me, being in a room filled with people I feel totally alone, and misunderstood. Of course with Tazzy being a Christmas present and was born about the time she passed away 14 years ago, has made the loss of my one fur-kid even more painful. Thank goodness Bub's seems to be feeling better, and after getting his rabies vaccine and getting those terribly long nails trimmed, and without having to muzzle him, :):) I think his feet maybe a bit sore... now he cries for me to help him on the sofa. But, I also realized that he is almost 6 years old! My papers from the Vet said he was 5 years and 9 months old... which I knew he was pretty close to being between 5 and 6 but time has flown by so fast. I look at the pics of him, when I got him home, he was so little, he had a place on my desk he laid... and Tazz the same way, she was so tiny, I could hold her in one hand when we first brought her home... guess that is why that seems like yesterday, and how hard it has been for me to except her passing away.... but I found her and Bub's ornaments, I had bought them over the past 4 or 5 years in the chest yesterday, and they hang on the tree along with Tazzy underneath it... she can too "see" the warmth and love she still has from her home..... And the Christmas Letter... yes I am sure I will find something positive to say, but in that, I will also have to tell the family and friends about all that has happened in the past year. That is why I write the letter, to catch up to family, we do not get to see or talk with very often. So, those letters remain a lifeline from our home to theirs, and from their home to ours. I still have so much to get done... I have to make a decision about my insurance and Mom's - and that is not an easy choice... I came to find out an interesting fact about Medicare Advantage Plans - OUR doctors are NOT the ones who "take" or do not take these types of plans at all. In fact, they have no say so in it.... ONLY the "insurance" companies make that choice... They "choose" whom they will be an in-network provider, and the physicians cannot say no, but they can't have the plans either, unless the insurance companies themselves "choose" them... Now I understand why my hospital is not on the policy we have now, nor some other providers. Come to find out they all work that way... I know I was totally dismayed that NO HOSPITAL within 40 miles of us took the insurance we currently have... that seemed so ridiculous! Well, NOT the hospital's fault... the insurance makes that decision!!!! Now this is mainly for Medicare Advantage Plans specifically, and I do not think it effects like Medi-Gap policies and so forth... thus just because online the companies may tell us that "this doctor" will be covered, by Jan 1st, they can change their minds and NOT cover a doctor we need to see... Talk about a mixed up mess!!! Our dear government at work... I can guarantee you, THE CONGRESS has a huge say over these plans specifically, and they make it as hard as possible, since many of us on them, are below the age of 65, because we are on disability, not "retirement" age yet... Anyway, talk about one messed up situation.... I was all set to go back to Humana for 2016, then I noticed our PCP was not listed as a network provider... thus I asked Thursday while I was there, and come to find out no, but it is because the "insurance" is not "allowing" them to be a in-network provider, not that they do not want to!!! It made me so furious... Humana COVERS our hospitals and so forth BUT not my PCP! And I have no guarantee after Jan 1st, they will "cover" the others they say they will online... it is a huge mess... and for me to try and get a "Medi-gap" policy would be well over 500.00 a MONTH or more... so it is no "win-win" for anyone... except the insurance companies themselves... and "United HealthCare" Secure Horizons SPONSORED BY AARP!!! is the worst! I have had nothing but problems with them all year long, plus as I said they do not cover our local hospital, my Rheumatologist, our Urgent Care Center, which seems totally stupid, and so forth.... anyway, so that is just one more thorn in my side to deal with.... along with all of the rest... again thanks so much, each of you... I did not make it to church again this morning, but I tried to go see Mom yesterday, and by the time I was in the car, I got sick to my stomach, and had to come back in the house, and let her know there was no way I felt like going over... same way today... my stomach is still "not right" but I am in so much pain, again I have to wonder if I don't have a kidney stone... the past two mornings, around 3AM, I awake to horrible and severe lower back, lower abdominal, pain... and down the fronts of my legs... which is usually how I know it is kidney stones... the leg pain, but down my front thighs.,,

Thursday, April 9, 2015

A "Daunting Challenge in Life" WEGO Health Writers Challenge April 9th, 2015

I could start off with a couple of periods in my life, that offered up a "challenge" or actually more than one, that truly put me into the realms of being not so sure I could "last" through that time.

I had a couple of those types of circumstances at 25 years old, and having to have my face "fixed" mainly my upper lip from a 4 wheeler accident that honestly I am here today wondering why I even made it? Another story for another time.

Also, at about 40 years old, suffering through a heart attack, by myself during the very beginnings of it, as I was also going through a horribly abusive relationship, him leaving completely, and the decisions that I had to make in order to basically "stay alive". Again, another story for another time.

There was the time at 50, I spent well over 6 weeks in two hospitals, and to this day, I don't think even my doctors knew exactly why I got so ill, in such a very short amount of time, and went through at least 4 surgeries, and was told to "call my family" on one of them, because they were not sure what the outcome would be. Once more for another time.

Then, there is what happened a year ago March 26, 2014. I had been in Washington DC, with the Arthritis Foundation, and their annual "Summit on Capitol Hill" for 3 days. I had found out very close to the date it was actually going to happen, and sent in an application for a "travel grant". I figured for one, I was too late to even get anywhere as far as a travel grant, plus at the time my health had been waxing and waning with Lupus and several severe flares I had been having at that time.

Yet, as "fate" would have it, I DID get the TRAVEL GRANT, and I was accepted to actually to go Capitol Hill, face the very Congress I had always wanted to face, and tell my own story, along with the story of others. I felt if I could do that, I could make a huge difference in how the nation, the world, and those in Congress "viewed" Autoimmune and Arthritic Diseases. Thus, it was a dream come true and I was in shock for a day or so, in disbelief I got the award to go.

Yet, I did. And even up until the very wee hours of Monday morning, April 24th, 2014, I was not sure I was truly well enough to go. But, a very good physician at one of our local Urgent Care Centers, happened to have Lupus himself. So, he gave me the medications I needed, along with an injection of corticosteroids, and I was up on my feet and able to make that flight. I was elated.

My spouses Step Mom lives very near DC, and since I had never met her, plus my husband had not seen in her over 10 years, he was going to fly out on that Wednesday the 26th of March, to meet me. We were to visit and also have a vacation until the Following Sunday, before flying home. It was kind of a trip of a lifetime for both of us. I definitely loved what I saw on Capitol Hill, and had felt like the trip had really given me more hope, that what I was doing as an Ambassador, activist, and advocacy voice, truly would make a difference.

On that Wednesday, my husband was to drive to Dallas, to the DFW Airport. It was about a 65 to 70 mile drive, before flying out. I had been finished with my own items to do with the Summit around noon that day, so his Mom was to come by the Hotel and pick me up. He was to get into DC around 7PM or so.

Just about the time it was close to time for me to be picked up by my Mother in Law, my cell phone began to ring, ring, ring, and ring. I had been outside of the Hotel, it was very noisy, so I really had not heard the phone ringing, until I walked back in. After seeing the number of calls from my daughter, I rang her back right away. Her voice sounded terrified, and as she said, Mom, Jim's (my husband) been in a very severe car accident in Dallas. He is in the ER at Baylor Hospital in Dallas, and the doctors need to talk to you ASAP! I almost lost it then, but I held myself together long enough to make that phone call. As I listened to the "voice" of the doctor over the phone reading out this "LIST" of things wrong with Jim, I just sunk to the floor and was sobbing uncontrollably. So, one of the kindest men I've ever known, had been in our group during the Summit, heard me. He came over and asked about what was happening, and I asked him to please take the phone and write down what the doctor was telling him. Most ribs broken, a very severe back injury from possibly C-7 through T-7, broken shoulder, concussion, a broken leg, a whiplash, a "nick" in the Aorta, and the list continued to seem endless.

About that time, my Mother In Law, came up to tap me on the shoulder. She of course didn't know any of this at the moment, so she thought I was crying because I was happy she was there to pick me up. I had to look this woman, my Mother In Law, that I had never met until that moment, in the eyes and tell her, that her son, was in critical care, headed to ICU in Dallas due to an 18 wheel tractor trailer "running over him" in Dallas. By this time, the woman who I just owe everything to from the AF had already spoken with Chris (the man helping me on the phone with the doctor), and they had made flight arrangements to send me to Dallas within a couple of hours. I am still in such awe and have so much gratitude for them, and her. I still feel I owe them so very much, for their kindness and generosity at that moment.

Basically, when I look back on it, the next 72 hours, I believe I ran off of shock, horror, dismay, and honestly I think I had truly become "dis-associative" in order to be able to "deal" with everything that needed to be done so quickly.

Needless to say, that date was just a year ago, this past March 26th. For almost this entire year, between my own ordeal with totally losing my own teeth to Sjogren's, Jim's long and laborious recovery, the doctors, bills, medications, therapy, the 3 months he spent in the hospital... all of the integral parts of him being partially parapalegic. He had been MY CARETAKER, before the accident. NOW, and probably possibly forever, I've had to become a caretaker for him, myself and honestly often my Mom, who will be 80 years old this August.

I've had many, many people ask me how I have been able to "cope". Truthfully, I am not even sure if I have. There are days, moments, weeks, that I feel so totally trapped, others I feel we will conquer, and times I am so ill myself, like I was last year right after his accident, I came down with double pneumonia. I had to do everything in my power NOT to have to go to the hospital. The doctor really wanted me to. Yet, I just felt if I could get well at home myself, then I could get things accomplished, that I would not be able to in the hospital.

Day to day, moment to moment, hours, weeks, months and now a year later, I'm not really sure if I am "sane", or if I've become insane. I've tried to take each step in stride, hoping for a better tomorrow, week, month, and years.

Yet, I am not sure exactly what to tell anyone in this situation other than, believe in yourself, try to take care of your own health as much as possible, accept others help when they offer it, or ask if you have someone that could help with some things. Try to stand tall, know that each moment, each step forward is one more to whatever a new "normal" will be. Also, keep hope and faith, along with asking others for prayers too, can be a huge help to be able to accept what has happened. You must finally in one way or the other truly "deal" with the issue, and then you can work on all of the other stuff.

Plus just that. Come to your own place that you must, you have to accept, "normal" as you knew it will never be again. You must find a "new normal"... and sometimes possibly several of "new normals" through out the process....

Rhia Steele April 9th 2015