I finally was able to get myself into my neurologist to get concerns heard. First we had to document everything and anything that was going on. You can not go into this with your thumb up your ass. You have to have all of your ducks in a row know what you are talking about. I refuse to look like an idiot any more than usual.
I want to be able to sound somewhat intelligent when it comes to my own health and well-being. I admit I do research on the internet but I do have my access to numerous medical libraries, thanks to my degree. But I am one of those geeks who actually reads the patient information that comes with the medications.
I read it front to back. You have to be knowledgeable and aware of what you are taking, and what it does to you. This falls in to the category of ” never sign anything until you read it” well “don’t take anything until you read it well!”. However, I go further and go to their website and seek out the side effects that they don’t have to list.
I seek out my journals and medical libraries. Thank goodness for my lifetime perks…🤣
So, the issue or issues that I have been having is whenever I eat, no matter what it is, within a half an hour I am trying to get to the bathroom. But with my MS I am unable to make it, thank goodness for diapers but mainly for the massive cramping that I get prior because it gives me enough warning to provide a heads up . I get a somewhat of running start if you will. Gimpy wabble..
But regardless,it’s explosive…
I have watched what I ate, cut the portions,what time I ate, you name it we have done it. I have taken over the counter medications to assist but nothing has changed.
Then there’s the copd/emphysema type cough. I have to have a mint or cough drop by me at all times because of severity of the coughing. It takes my breath away, it causes heart burn . But it’s not gerd or pneumonia. Both of these are side effects of the Aubagio (ms medication)..I have had nothing but issues with this drug since I was put on it.
Now today I have been officially released from it!!!
I will be trying self administering shots. (3× a week)
According to my ms Neuro this Aubagio is possibly to blame for my worsening of my other symptoms. They were being exhasberated a great deal. So maybe.. I mean I did have two good days in one month.. So that’s some,right?
I have been experiencing some other fucked up shit as well. My psychiatrist up and quit on me with no notice. She never filled my prescriptions on my last appointment and I was calling her to see why. I was emailing her to see if she could. I called her and they told me she was no longer with the facility. They told me that I could come in and start over with some one new or go elsewhere.
Either way it will be a long process. I was with out medication for an entire month. So I am crying or laughing uncontrollably for no reason. I am miserable. Now mind you I am being treated for anxiety, depression, insomnia and ptsd. So I have been off meds abruptly for a month. Add ms to the mix and I am a complete mess.
I struggle to just exist. It is exhausting to just exist. I am not generally a depressed person but I am not myself. I am so tired. I only get an hour of sleep a day and that is because I am so exhausted and beaten up from the MS. You add in the shit storm of crap that the ms meds are causing, I am a mess of emotions.
But I have scripts waiting to be picked up for my depression and insomnia. Thank God for my MS neurologist!!!
I hope for some normalcy..
This hasn’t been me yet I rise…… And I will continue to rise….
I feel guilty for the way my house looks like but I will get to it. I feel guilty for a lot of things.
I am tired of looking out the window. I am tired of sitting home. I want to be able to get some of my life back and possibly my friends back. But then again, if they were true friends they never would have left to begin with. So I am not sure if I even want them back.
I want me back….