Don’t I look like a chipper little gal in this pic? Looks are deceiving folks. Although I’ll always be a glass is half full kind of gal, to say I’m chipper these days would be a farce.
Life is still good and I firmly believe God is still great every single day.
I will admit that sometimes the realities of this crappy disease gets the better of me. Well before the storm (hurricane Michael) kicked our ever loving asses my MS has been taking a toll on me. The past two years have been extremely hard.
I’d be lying if I didn’t say the hurricane left an indelible stain on my soul. It was hard and still is. It hasn’t gotten much easier. Still waiting for insurance and still hoping to get this rebuild under way.
Living in a travel trailer is far from easy, with balance issues making it very, very hard to get in and out of. I’ve noticed more and more that I rarely venture out, purely out of pure dread due to the couple of steps leading to the free great world and my front yard.
With all of that I maintain my semi positive attitude. I admit it is difficult and sometimes frustrating. While I used to have a pretty positive attitude, I find myself a smidge cranky and a bit less patient these days Things are NOT settled and far from over in regards to that shit show of a hurricane.
One of several things that still make me laugh and smile are my fur babies. Thank God for them or I’d surely have lost my way. Between them, my hubby and boys life is still good. While all of this there’s still Dr. appointments and meds, neither the dr. appointments or meds make me happy at all.
There are still new meds being released and new findings regarding the ones already released. There’s data and side effects to go through before jumping into one. As the years have went by I’ve become more and more hesitant to jump into the new drugs available, as they all come with side effects.
What’s good and what’s not is the question. What side effects I am willing to deal with and what meds would interfere with other conditions we face.
Here lately I’ve been dealing with breathing issues and dizziness that has really and truly make me too scared to do anything that requires too much walking. Too much being, anything over a few feet.
After just about fainting in the yard while talking to a girlfriend I decided to go to my GP. I don’t want to put everything on my MS. I highly suggest anyone else with a chronic illness do the same. We can’t just assume it’s our chronic illness that’s giving the current issue. Many have made that mistake and suffered for it.
We can’t think it’s the chronic illness we suffer from getting the better of us. We need to have someone else look at the big picture, not just the chronic illness picture.
So I did, I went to my GP first to tell him what was going on. He went over everything I had going on and felt it was possibly the cardiomyopathy I had been dx’d with over 2 years ago. After going over everything he said you may possibly need a defibrillator placed to make sure you don’t suffer congestive heart failure. While he talked I thought to myself great another BS thing to deal with.
My GP set me up with the cardiologist I saw two years ago. The one that said I suffer with cardiomyopathy, but also said my cardiac cath was that of a 20 year old with no plaque in the arteries.
The cardiomyopathy was probably because I took Novantrone back in 2009. It was a type of chemo to slow down my MS. It worked for a little bit and can’t really complain due to the fact it did what it was intended to do.
The following week I went to my neuro, we went over the newest meds on the market for SPMS. While going over the newest DMD he let me know the newest Med was nothing more than a glorified Gilenya.
Not sure if you guys remember, but that particular medication (Gilenya) led to a trip to the ER via EMS. Talk about a shit show. He said with my cardiac issues I shouldn’t take the newest hot medication.
I appreciate his conservative approach with me. My last neuro would have let me do that medication and then claimed ignorance. Not sure if he was really just that ignorant or lacked care and compassion. Regardless, he did not have my best interest at heart.
As the visit progressed me and the hubby talked to him and he answered any and all questions and was a wealth of information. We also asked him what he thinks my EDSS score is. We went over many different things that I deal with on the regular, his final answer to the EDSS question was that I was at a 7-7.5.While this did not make me happy in any way shape or form, I will say I appreciate his candor. It is what it is after all.
After talking with him I had to do a urine test, as the nurse talked to me about insurance etc I couldn’t understand what she was trying to relay. I looked at Lance for answers and she gave me a look like I was an ignorant bitch. Well let me tell ya this flew all over me. I couldn’t believe she was making me feel like an idiot. If I had a bit more strength about me I would have laid into her. Instead as she walked me to the bathroom I let her know in a very stern voice that I’m not an idiot, but have cognitive issues and genuinely didn’t understand what she was saying. When I came out of the bathroom she had a completely different attitude.
My point to writing about that is have patience, you just never know who you’re dealing with. If anything I’ve been considered quite the quick wit in my day and far from stupid and still am just in a different way.
So in the past couple of weeks I’ve had the displeasure of using scooters at the grocery store. Does this please me? Oh hell no. The look of pity or the people trying to ignore you is unnerving at best, but I’ll keep on keeping on, making the best of what I can do and saying FU to the looks and ignorance I encounter.
Sorry if this isn’t my lightest of blogs, but hey at least I made the effort.
Still chipper, just a little edgy mixed in these days.
God is still great and life is still good. Do something kind for someone, it will make a difference. I know it makes a difference when I encounter it.