I feel like a Yo-Yo - Up....then down....constantly changing

Hello! Let me start off by warning you, this is a long update with several things that are going on - so bear with me as I ramble on about all this!
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Many people call me and one of the first things that they say is "how are you feeling" or "how are you doing" - my most common response, as many of you know is "it depends on the day and sometimes the hour" - because from day to day everything changes. One day I feel great, one day I want to just sleep all day...one day I have pain all over, etc and it's constantly changing like this on a daily, sometimes hourly basis. So just because yesterday was a great day doesn't, by any means, mean that today is going to be the same - I sure wish it did though!

In fact yesterday (4/27) was one of those "not so great" days - I was just simply
exhausted from the moment I woke up......it was just one of "THOSE" days. I went out and did a few things, met up with a friend for a light lunch, did a couple errands and after I got home didn't move off my chair. Today on the other hand has been a much better day - I even took a nice long walk this morning. I'm not as exhausted as I was yesterday and not having as much pain in my legs, although it's still there. My ankles and feet are quite sore on a frequent basis as well.

I also have been continuing to work on figuring out this sleep study I need to do - my Dr was able to hook me up with a company that does "at home" sleep studies - so instead of being a cost of $3000 this is $500 and I do it at home. The only thing I need to talk to my Dr about is the fact that this particular company is "out of network" for me which means it won't apply to our "in network" deductible - so I need to see if he knows of another company he can hook me up with instead of this one - either way I'm happy that I can do it for much less AND at home.....as of now, if I go with the "out of network" company, I'm scheduled to start it next WED and it lasts for 3 days......they will send me all the machines and sensors and when I'm done I will send it all back for them to analyze and report to my Dr. I'm super hopeful that this is just another step to me feeling better......if in fact the underlying factor of my chronic fatigue is because of sleep apnea then I should be a new person once I get hooked up with an apnea machine. I'm hopeful anyway that this is that "one step closer".............

For those of you reading this blog who might not have to deal with chronic issues please take a moment to read the story about "The Spoon Theory". It really gives a great analogy about someone who has chronic illness and will help those of you out there who don't have to deal with it and maybe just don't understand what it's like in the daily life of someone who does. I often times wonder just how many people out there think to themselves "oh just deal with it, you'll be fine" when in all reality, each day is a huge battle to function. I hope the story helps you understand a little better and helps you know that someone who has this is truly living from minute to minute and having to make decisions about their activities that most people don't. For anyone who thinks that these "silent illnesses" are a bunch of bologna, I honestly hope that this helps give you some insight.

I would love to hear back from those of you who read the above story with what you think about it.....

The medication withdrawl is going much better than the last update - I still get those weird sensations in my head but not constantly like it was, rather just a few times a day which has been much nicer. I had about a week of feeling annoyed at everyone and everything.....my poor family had to endure that nasty mood swing and for that I feel bad.....especially because I knew I was in a bad place but couldn't do anything about it. I am glad that it seems that the withdrawl period is not going to be constant and last as long as I had feared it would. The mood seems to have passed for the most part and overall I'm feeling that the "withdrawl" is lessening. I hope it lasts! The new medication I'm on, I can't really say much about just yet as I'm not sure about it. I am beginning to wonder though if getting off the old one was a smart move since I'm having much more pain than I previously had while on it - I guess it was working and I just didn't realize it was! But either way, I'm glad to be getting off it because of #1 the cost of it and #2 the withdrawl symptoms it would give even if missing even just one dose.....certainly there are other meds out there to give a try that aren't as heavy when coming off them......I actually want to give Lyrica a try...I've heard it's a good one for my condition.

On another note, my son has been on a new medication since the beginning of this month - long story short, he has had "issues" since he was a baby - we have dealt with Sensory Integration Dysfunction and ADHD since he was 1 - he is going to be 10 in July and over the past several months he has been having a rough time with his ADHD - I am not sure the diagnosis of ADHD really still fits him so we are in the process of getting another or rather a renewed diagnosis from his Dr. He hasn't been on medications for this until recently because nothing we did was helping him, he seems to have gotten worse over time and my husband and I really just needed some help with him......it is definitely more than him just being a kid trying to get his way too - definitely more. He has something going on inside his little body that nothing we could do was going to help - I'm so glad that we recognized this and got him the help he obviously needs.

Since starting his new medication he has done a 180.......at school and for the most part at home....he has had way more better days/nights than he has had bad with the exception of a few good blow outs (compared to constantly having problems with his behavior and attitude). We are pleased with the result of his medication and he is as well - he can really notice a difference too. We go in next Wed to see his Dr for a follow up and to determine what MG dose he needs to be on - we have "played with" several from 10mg to 60mg and think 60mg (out of 70mg) is where he will be, with maybe a little booster in the afternoons....we'll see.

It's really been a tough road with both of us...I have never mentioned my son in this blog only because this blog is about me finding my health, however, being that his actions, behavior and all that comes with that is a huge part of my life, at times will also effect my health - mostly my mental health!