Random Picture Day #13

Living On Oxygen for Life

Hello everyone! Wow… time sure does fly quickly. Doesn’t it? Well, I guess it seems kind of slow if you are snowed under. I hope you have sunshine by now. It’s starting to peek out more and more here in Texas. It is amazing how much a little bit of sunshine can change a person’s mood… from rainy-gloomy-cabin-fever blues to rip-the-doors-off-the-house-and-let-me-at-the-glorious-sunshine happiness. This Winter has been a heck of a roller coaster. So, I guess Spring has sprung and all that sweet sunshine has brought our daffodils up and blooming. That is until someone came by and cut and stole them from our front lawn. K was crushed. All that work and now it’s like he has nothing to show for it. The thing is.. he told me that he would have been happy to give them to whomever wanted a few if he’d just ask for them. K would have felt like someone sweet, other than me… of course *wink*, was going to enjoy them and appreciate his effort. But no… someone stole them. I’m a little worried about the tulips that are starting to come up. As you know, daffodils and tulips, make their appearance once a year in the Spring and they are beautiful. Majestic, really, which makes our next outing plans super exciting. It’s a wheelchair adventure with my new camera I got for Christmas! Thank you Santa!

We are going to a place that is GLORIOUSLY filled with tulips, daffodils, and so many more types of flowers. The last time we went to appreciate the flowers was about 5 years ago. Here’s two pictures that I took there.

tulips

cottage

Taking pictures with my Nikon dslr 5200 camera is something I LOVE doing. It’s something that is easy to do while having to use oxygen. It doesn’t take a lot of energy unless I am having to move about a room like at a wedding reception. I like taking candid, spontaneous pictures of people in the moment instead of posed people in a group picture. But nature, by far, is my favorite to photograph. K has really developed an eye for photography. Sometimes my hands are too shaky because I get tired or my oxygen saturation drops and that gets me frustrated because pictures can blur. So, K will drag the tripod around with us if I end up needing it, we’ll have it handy.

So, what am I really like? You read my blog. Do you wonder… what is she really like in person? Here’s a bit of a weird bio.. I’ll try to add a little bio each time I remember!:

  • I have to say that I am pretty goofy.
  • I’m afraid to tell you that I can be a bit cranky or fussy when I’m tired but who isn’t, right?
  • I read a LOT! I should list the books I’m currently reading or at least, the books I’ve read that I think are good. I get most of my books through Amazon and read them on my Kindle app on my cellphone. Did you know that they have a boat load of free books? Just use the filter to look at the LOWEST cost books first. (you’re welcome for that tip!).. Thank you Thomas K., my Scottish friend! *wink*
  • I’ll only eat spinach in a salad. I love it raw/uncooked!
  • I’ve never been to college but I’ve been to a trade school. (Travel Academy)
  • Daisies are my favorite flowers. There’s something about them with their simple, innocent look.
  • I love my wheelchair and it’s driver (aka: my husband)
  • I believe in training a dog with the reward system versus punishment system.
  • To motivate myself in getting things done that I really DON’T want to do is by rewards (no I’m not a dog! *wink*). Those rewards can be ice cream, ice cream, and maybe some more ice cream.. but if I’m out of the ice cream (watch out!) then I’ll take whatever it takes to make me smile and moving with a pep in my step.

 

Now finally, here’s the part you are waiting for… Ready? My health update… YAY!!!: I did some lab work last week because my Endocrinologist asked me to. Instead of my TSH (thyroid stimulating hormone) being too low, it’s flipped out and gone the other way. Needless to say, since I switched back to Tracleer (bosentan) from Opsumit (macitentan) and started taking Methimazole, it has worked especially well. Unfortunately, it worked too well and I have had to cut back on the Methimazole two weeks ago. I’m thinking that I’ll be off the medicine all together after my next Endocrine appointment at the end of this month. The weird thing is… I asked my Pulmonary Hypertension doctor if they have heard of any other PH patients on Opsumit having the same TSH problems. She said no. That’s why they keep telling me that they think it’s my Cordarone (Amiodarone). Though, Amiodarone, is not a good medicine to be on, it’s the one medicine that I could tolerate when my heart started it’s arrhythmia problems back in 1993. I’ll be going to see my Cardiologist for an Echo and to discuss this more and maybe see what else is out there that can replace Amiodarone. I mean it’s been 20 years. Surely, something better and MUCH more expensive is available by now. Though, Tikosyn was recommended to me as my first option last April but I’m not too thrilled with it. I don’t have A-fib and I’m not ready to subject myself to a new medicine that I’m not at least 75% sure that it’s something that will do more good than harm. I’m just not one of those patients that blindly go where doctors lead me. I read up on everything they suggest.

Stay in touch because I love to hear from you. You can find me on Facebook, Instagram or email: goredrider@gmail.com *HUGS* to you all!

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7 thoughts on “Random Picture Day #13

  1. Love the post.
    I’m still too afraid to go on meds for the PH. I was on Viagra and bosentan a little while ago and it wasn’t a pleasant experience. I’m feeling worse lately and have less endurance…and looking for options. Going on Monday to the lung clinic to see what’s up. I was in ilaprost years ago…. It didn’t show amazing results… I like things that don’t help one cause and ruin another organ.

    • Hi! I know how discouraging it can be to try different PH medicines to only find out that they make you feel awful. Some of the medicines you have to stick with them for a while before you start feeling better. However, the Revatio and Cialis really, really made me feel so bad that I could not continue with either one. That’s the way it was for almost all of the PH medicines I’ve tried.. believe me.. I’ve tried almost all of them. Tracleer is the only one I can tolerate. There is a newer medicine out now and another one coming out soon, I think. Don’t give up hope on trying a PH medicine. I hope the Monday appointment went well.

      christine

      • Thanks Christine, I appreciate the information you have shared with me. I know I need to start looking into getting onto one of the meds, after a long week of tests and ruling out why I’ve had a health decline… I’m now awaiting more results and then based on on my lung function tests booked on the 13th of this month, a comparison will be done from last year to now. It’s a long journey.
        I will keep the info you have given me and speak to the PH team about them. Many thanks again xx

  2. Darlin, I wouldn’t say weird, but enteresting!!! Glad to see you got a good report from the Doc…You will definitely outlive me. I am going to work on that Amazon thing, Found two new authors, Greg Iles & Catherine Coulter. ( Still trying to find my feminine self )
    ” Stay one step ahead of the guy behind you, he wil be the next Lions meal !!!
    Love Ya
    Jim

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