Preparing for tomorrow

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Good-Evening-ButterflyGood evening Y’all, I hope you had a great Sunday! I received a phone call this afternoon from the doctor that will be here tomorrow morning to give me my first dose of Gilenya. I explained to him that I was on this medication previously for 6 years and have only been off of it for 3 months, but did understand the protocol. I told the doctor that we currently do not have a dining room table, but that I have set up a folding table for him and his assistant so they will have somewhere to work. Truthfully, I had the folding table set up for my comfort more than theirs. I do not want to have to sit in my living room with 2 people I do not know all day. I know they are probably nice people, but sometimes we need a break from feeling like we have to entertain.

I am going back on the Gilenya with a positive mind-set. Like I said, I was on Gilenya for 6 years previously and did not experience any severe flare ups, so maybe I can go Positive thoughts butterflyanother 6 years with nothing major happening! Even though I decided to go back on a medication that is strong, does not mean that I believe that my MS is aggressive, I just think it is a little sensitive and needs to be treated like so. I think that is a much better way to view things!

Now, I am very well aware of how things are supposed to go tomorrow. The doctor and his assistant will arrive at my house a little before 9 am, ask several questions, do an EKG and then give me my first dose. Once I take the first dose, the doctor or his assistant will have to monitor my vital signs every hour for 6 hours, unless I can somehow convince them they can leave earlier. Considering I know they have a protocol they have to follow, I highly doubt I can convince them to leave before the 6 hour time period as that is what the company requires, but a girl can try!. The doctor will have to do another EKG before he leaves just to make sure there were not any changes, but I am sure everything will go as well as it did my first time around with this medication!

I hope the rest of your evening goes well and I hope you have a great Monday! I will let y’all know how tomorrow goes, but I really am not at all concerned. Honestly, the only thing I was worried about was having people I do not know in my house all day, but I am sure they will not be at all bad! If any of you have experienced having home health personnel in your home and have any advice on what I should expect, please let me know. I am trying to make them feel as comfortable as I can, while still keeping my own comfort level. I know I am not allowed to leave my home the entire time they are here, but I guess they can probably go somewhere for lunch, hopefully!

Love 2

 

Always, Alyssa

43 thoughts on “Preparing for tomorrow”

  3. Hi Alyssa, good luck tomorrow. Things will go fine. I had this before when I first started Copaxone. We did allot of talking, sharing stories, asking and answering questions, held good conversation, watched tv/movies that are entertaining and something that is keeps people interested. I did show them where the bathroom was and offered beverages (i.e. water, tea, coffee, juice, soda) whatever I had on hand. They will probably go out to lunch. I did ask them about lunch when they arrived and also offered for the use of microwave or oven if needed. I did minimal hospitality because I couldn’t really walk around freely with an I.V. stuck in my arm unless I needed to do something. However, I did want them to feel welcomed. It makes the atmosphere not feel tense or awkward but warm and friendly.

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    • Thank you Sal! I am a very nice person so I will do what I can to make them comfortable. I just did not want to have carry on a conversation all day because I want to read my book. Plus, I am trying to write a book myself!! I borrowed the folding table from my mother in law so they would have something for their laptop and my husband will take care of WiFi access for them. The doctor sounded very nice on the phone so I am sure he is a good guy!!

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      • You can give them a minimal explanation that you are working on a project. Who knows they may have some ideas that you could work with. Sounds like you have everything in control and Yes, you sound like a very nice person. I’m sure they will do their best to not make things uncomfortable for you. Everyone feels some type of way with strangers in their home. If they say they don’t they’re lying, hahahaha. They may not express it but they are sure feeling something. Have a wonderful rest of your evening and relax as much as possible tomorrow and for the rest of the week since you are going back to your old routine. It does take time for the body to adjust.

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      • Thank you Sal! The doctor arrived this morning a little early and the assistant was late because she was lost. The doctor seems pretty nice but his assistant’s personality is a lot different from mine. She is very abrupt and a little unpleasant. I told her about the table I set up for them in the back room and she said “So you do not want us in the living to watch TV?” I thought she was a little rude! It will all be over at 3:45!!!!!

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      • Wow, well some assistants are better than others. It sounds like this one is more technology entertained rather than doing the job. We run into those here and there. I hope that overall things went well. If they has for an evaluation you can always report how they can make things better.

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      • Some people really enjoy their jobs and want to do well and some do not. It is funny you said that about the evals, they had left one with me before they left. I already filled it out! The doctor was fantastic so he got a great eval! I hope you are doing well!!

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      • All is well for the most part. Some days are good others well, we try to add some sweetness to it to feel a little better and make it through the rough part. How’s being back on your original meds working out? Hope it’s good. Have a wonderful blessed week and keep smiling. Take Care

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      • Thank you Sal! Things are going very slow and I have not made it back to “normal” yet. I am getting ready to try to get through some of the day at work. I guess someday things will get easier and better, I just wish it was last week!!! Take care Sal!

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      • Good to hear. All is well for the most part. Long week and it’s only Wednesday. It has been feeling like Friday since Monday, my brain is not firing on all cylinders this week and it’s driving me nuts. I have to actually write down everything and pull out what needs to be worked on each day just so I get most or all of my goals done this week. I am so looking forward to Friday night. To top it off the weather the is finally changing to fall/winter. I love all seasons but its gloomy. Have a wonderful day.

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      • I wish you lots of good luck and I really hope things calm down soon! The weather here has been so cold but does warm up a little in the afternoon. My body isn’t ready for cold yet. The change was too extreme!!!!! That is a great idea to write everything down so you don’t forget to do anything. I am very forgetful lately! Take care!!!

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    • Thank you! Yes it is a little uncomfortable. The doctor is pretty nice but the assistant is a lot different from me. She is very abrupt and did not seem happy I set up a table in the back room for their computers. I was told I did not have to entertain but she apparently thought she would come her to watch TV today. It will all be over at 3:45!!!

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  13. Hello my dear. I’ve been getting monthly 4-hour infusions since 2005, and in recent years i had to change from going to an infusion center to having a home-health nurse come to the house. She cannot leave during the infusion, just in case something goes wrong. One of our dogs used to growl and bark at her, but they became friends. My nurse sits at the kitchen table the whole time and does paper work. Sometimes we chat for an hour or so, since we know each other so well now.
    I have also had too many rounds of IV antibiotics at home, and am in the middle of one now!
    I’m very glad that you’re getting the treatment you need. The doctor and nurse don’t expect you to make them comfortable. They’re doing their jobs. I hope you have been able to relax and get your RX.
    I’m sending positive energy your way. Can you cuddle with a cat later?
    Love Aunt Martha

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    • Things went well and I am glad it is over. The doctor was great but the medical assistant had a bad attitude and said mean things to and about my cats. But it is now done and over with. I can safely start back on the Gilenya!! I hope you had a great day!!

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