With the new year… it brings changes.

Living On Oxygen for Life

And now for something new… drama! I realized this past weekend that I had a letter on my refrigerator which I’d slapped under a magnet back in October 2017. Of course, you all know me by now to think… “oh dear, that can’t be good!” If you’re anything like me, you stick important things on the fridge, right? You know, things you DO NOT want to forget. Especially if it’s from the health insurance company.

This important document I have stuck on my refrigerator informs me of a change for the new year. Don’t worry… I was thinking the same thing.. “but these people never give THAT much of an advanced warning.” Am I wrong? Of course not! So I put it on my refrigerator so I wouldn’t forget.

Well, I forgot all about it because my brain just doesn’t retain all the things that have happened since October. Life was happenin’ around K and me. How was I supposed to remember that my Specialty medicine for my Pulmonary Hypertension was going to be dispensed through a different pharmacy? This is the medicine that I have to get labs done every month to even get a refill of this stuff.

I can only say that it’s truly inconvenient and very stressful for a patient, who must take this life-sustaining medication, to have to make this transition at all. It hasn’t been a smooth transition to the new pharmacy because I never have an available refill of this medicine due to needing lab work done every month prior to calling…then wait as I listen to at least 5 minutes of elevator/on hold music, for a refill.

Now I’m stuck within the slow grinding process of the new paperwork and out of medicine. They are supposed to call me when the pharmacy is finished “processing” my account to set up a delivery date. Meanwhile, I’m at home with no one other than myself to blame and feeling like I am slowly suffocating. I’m very short of breath and it’s a constant reminder to never let this happen again.

It’s pretty hard to juggle everything that has been going on in mine and K’s life lately and to have this slip from my memory makes everything seem like a crisis to handle right now. So, when my husband asks me to handle something for him, I start feeling a little buried right now.

For sanity’s sake, I made myself step back to calm down. I’m making a list to prioritize what “crisis” I should handle first because when I start feeling buried, everything feels like a crisis. From there, all of this mess will start to look clearer. I hope! haha!

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9 thoughts on “With the new year… it brings changes.

  1. Hello Christine,
    Sometimes I fear I will run out of magnets before i get all of my paper notes and notices up on to the refrigerator. :o) My computer has a “reminder” feature that will notify me when an important date is approaching. I haven’t used it, but probably should. I know all too well the brain fog that comes on with fatigue and stress when chronically ill. Some mornings just staying in bed under the covers seems like an extremely intelligent idea! Alas, the world awaits, and we must get up and at it.
    I so much appreciate your blog. It is a great comfort for me to know others are on 02 and carrying on daily. Your writing and other’s comments are very reassuring to me and really make my day.
    Thank you and god bless,
    Linda In CA

    • Linda it’s great to know that you find information on this blog comforting and helpful. My refrigerator is my go to for paper documents but alerts are usually put on my phone. (If I remember to add them). Thank you for commenting. I always enjoy reading them. *hugs*

  2. Greetings fellow Drama folks. I hear you about putting things on the fridge. But my drama comes from not forgetting where I put something, but from other fronts. Since last year, and my battle with my oxygen provider who refused to give me liquid oxygen as long as I kept my 20l reservoir in my car, I have had to go and get it filled myself to the tune of 31.00 a week, not bad since It is what gets me out of the house and from underfoot. Well, I asked the company that since you no longer will supply lilquid oxygen to anyone, how about selling me the reservoir and companion, it was agreed upon but have yet to see an invoice. The company that I get filled from knows the provider is a pain, but letting me to continue to fill from tanks which are not technically mine may wear thing ( been doing this isnce July of 2017) So going to see if I can get the provider to send me the invoice. Crisis #1 solution lelt God handle the anxiety this is causing. Yeah God!!
    Crisis #2 last year I finally got on MAssHealth, since my wife and I are both disabled we decided to go the deductible route of $9.425, we had $9.860 when we sent a package of 300 pages of supporting documents. I get the MassHealth she doesn’t go figure no one will tell us why. It’s good for me since my Tracleer costs about $9,800 a month for 30 day supply. My medicare advantage covers all but the $460 copay. I had been using Caring Voice Collation for the past 6 years, but with Masshealth taking over and believing that I would not be assessed for review until I reach 65… WEll this week, I get a standard stock form from Mass Health informing me that my plan will be kcancelled because I 1 make too much money,or 2 my immigration status is in question or 3 I did not meet this years deductable. Ok, there is a way out if you are disabled YOU HAVE TO WORK, YES WORK.
    all you have to do is get someone to say they pay you 1.00 an hour for 40 hours a month, no money actually has to change hands you just get someone to give you a piece of paper which is placed with your application.
    On Thursday, we spent 2 hours at the hospital financial office with them talking with MassHealth trying to figure it out. IN between I don;t know, there was the “Oh, let me connect you with a supervisor, CLICK. Then we would start all over again. Finally got some one who said they would look into it with a supervisor, but we got their name and actual phone. If no word by Tuesday afternoon we call on Wednesday. All of this has to be done by the 19th when my insurance runs out.

    Now #4 crisis ok well I can always contact CAring Voice and reapply. Guess what: because of a government investigation of the foundation all 2018 grants have been closed. Went to check out all the other granting agencies, well guess what they have already allotted their funds for the year.

    I can always go ask one of my friends for a letter, or become a Pirate and board merchant ships, and make folks walk the plank.”YO HO HO and a liter of oxygen”
    So that is my tale of WOE.
    Well my wife and I had a wonderful Thanksgiving Christmas and New Year and was hoping that this year would be a good one. Hey still up walking about, shopping, cooking and breathing even if i have to be on 3-5 litres of O2 constantly.

    • Ok hands down, you win the “Life Full of Drama” award this month. I’m so sorry you’ve had it so rough. I sincerely hope you get all that ironed out. Have you and your wife applied for Social Security Disability?

  3. I am a Canadian and very reluctant participant in this supplemental O2 odyssey. Nonetheless, I have to say I’m very impressed with the O2 delivery system up here. Based on a prescription from my doctor, I receive weekly delivery of liquid, I also have my Concentrator and portable strollers. The health system pays for 3/4 only because I’m under 65. They would pay 100% after that. Sign up was easy and service is stellar. For example, when I visited my relatives for Christmas 3 hours away, they delivered liquid and a concentrator which were there and ready to go when I arrived.

    • If only it could be this easy for everyone everywhere. I’m glad you have an excellent oxygen setup. Stay well and warm. *hugs* one day, I hope America will start caring more for its people than its politics. *sigh*

  4. You have such a wonderful attitude toward life, Christine. You must be a very strong and determined young lady! Just reading what you said overwhelmed me. I avoid that place LOL. I’m 62 and on oxygen for the rest of my life and I have panic disorder. Try hyperventilating with oxygen and trying to take deep breaths. It’s not an easy thing to do!
    I’m very blessed with my oxygen delivery and paying for it. From reading other commenters…wow. We recently switched pharmacy’s we have to go to and the one they chose is not the best 😦 Out of our control, right? God bless you.

    • Aww… Debbie you are so sweet! For people who have serious health issues, it can be very stressful for them when anything disrupts their health care system that they are finally comfortable with. Don’t you agree? In some people, it can be a health risk. Stress and anxiety of having to deal with pharmacy changes or doctor changes, is difficult on a good day. Am I right? Who’s with me?

    • Oh I can so relate to the panic attacks and not being able to breathe out of your nose,had a bad nose bleed,Christine hope your ok,I’m on the oxygen

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