Erin's Page

Hey Erin, Hope you're doing OK.

Hi Erin,
Thanks for the prayers, I need them. Funny thing is that what I have been struggling so hard with would be so simple and straight forward for most people. I just don't have the ability to function right. So many of the questions are yes or no or too specific to take into account the types of symptoms and their constant change in frequency and intensity that I have. I keep writing more detailed answers than they want because I can't possibly see how they could otherwise understand how the variability and multiplicity effects me. I know I need to be more concrete and specific and especially more brief because that is what they want to deal with. But for the life of me my brain can't work that way especially the more tired it gets and the more pain I have and I end up spending a long time "spinning my wheels". I hate it that I need help from outsiders and am therefore forced to prove myself. I am over proving myself. I hereby no longer give a shit if anyone believes me or not. Yet, here I am playing their game because other wise I will not be able to survive. I just wish I new some way to actually make my own money instead of being dependent. Oh well, I called today and they extended the required time to have in the paperwork until next Friday. So relieved, I haven't worked on it all day because it had really flared every thing up.
Anyway, hopefully I will see you at the next meeting, I definitely intend to be there. Hopefully, I can get my sister to come as well. She has been sick forever too and just got diagnosed with fibromyalgia last week from a very mean and stupid Rheumatologist.
Mary

Hey Erin,
I may have met you at the group, but I'm not sure. I was wondering if maybe I had. I missed the last meeting because I was my disability interview was that day (what a pathetic waste of time). I was there the meeting before that. I brought my sister with me for the first time. Plus, I felt especially horrible as I had the flu. There were two or three new people there that day; were you one of them? I missed the month before because I simply forgot, despite having been planning on going all week and knowing when it was. Sometimes Terri calls to remind me in the morning, but not that time and it had vanished from my mind from one minute to the next. AAARG.
As for Sevella, my comments are not related to that drug in particular, which I have not personally tried, but rather to the side effects and withdrawal I have experienced with various medications. For example, I have had severe enough withdrawal effects when trying to go off of Lexapro several different times that I have made a personal solemn vow to myself never to attempt to go off of them again unless I can be hospitalized and cared for around the clock. I plenty more to say on this including suspected causes of the withdrawal intensity, the fact that many doctors are unaware of them, and possible (theoretical) ways to help yourself get off of them. Of course, this would include my view on whether or not to take the meds in the first place. The extremely brief explanation of my opinion is that in the long run most of our meds do more damage that good and often perpetuate or increase the problem they are meant to solve. However, even knowing that, most of us are faced with how to survive NOW. Regardless of the risk involved many of us don't have the luxury to not take them because of the future risk due more the more immediate need for survival and a lack of other options being more important at the moment. They are buying us time. But I would be surprised if any of the meds (not counting supplements and hormones and a few replacing or building up substances) that we are taking to survive symptoms are causing any actual healing other than possibly by means of the time they grant us or possibly the effect of relieve for your body in a certain area so as to free it up to repair things it otherwise would not have the time or energy resources for. That made sense in my head, but I'm not sure how it came out. I'm not stating this as fact, but rather the opinion that I currently hold due to my own experience and research. More to say later but got to go now. What doctor did you see last?

I'm sorry about your doctor's appointment, Erin. I know that feeling all too well. Keep your chin up and find a new doctor if you can (although I know that is stressful as well).

Hi Erin,
I noticed you on here yesterday. I noticed that you live in Marrietta. I have had such similar experiences. I can relate so well to everything you said. I have been sick since childhood. But of course no doctor could find anything wrong with me. According to all my tests, I should have been the healthiest human on the planet. It wasn't until I was nineteen that I got a diagnosis of IBS and Chronic Fatigue Syndrome. It was about 5 years later when I went to a rhumetologists and was diagnosed with Fibromyalgia. Mostly I was just considered depressed and such (which I was that too) I am older than you and I can say that the difficulty with doctors were even worse back then, which can be hard to imagine. I too had to quit college because I was too sick to contiunue. Even though I am 38 now, I know what is was like to be sick in my teenage years and my twenties. So much for them being the "best years of my life", huh?
I am too sick to write much right now, but I did want to ask if you go to any "in person" support groups for this. I am only asking because I go to one not too far from you probably. It is on Shallowford Rd and Sandy Plains Road at the library. It is very difficult for me to get there. I usually go all unshowered and bummy because I have found that if I shower and go somewhere on the same day, my symptoms will increase too much from the effort. Still though, it has been very worth it it me. All the ladies there (yes they are just ladies, no guys!) (but that isn't because they are not welcome, they just don't show up usually) understand everything I am going through because they have experienced it too. Just like on this site except you meet in person. We have a chance to exchange information about what we have tried and the doctors we have seen and stuff like that. And most importantly we get to see others just like us which is so helpful to me because it is easy to feel like the unique freak of the world. Anyway, if you have any interest, let me know.
Also, I would be interested to know what doctors you have gone to in the area and your experiences with them. I have some things to say regarding the Sevella, but need to go for now.
Mary

Hey Erin, your story, unfortunately, echoes mine. It helps to know that we're not alone. I hope you enjoy the website!