Content based on personal privacy health issues and opinions. Please read for GOOD purposes ONLY!
Tonight’s blog is going to be more heartfelt and emotional as our symptoms change daily. First, I need to say a huge thank you to the MS Society for being an enormous help. I honestly don’t know what I’d without them. For any newly diagnosed I highly suggest being in contact with the MS Society and if you have any questions call them before anyone (other than healthcare providers).
I get upset and basically heart broken because I feel as if I’m treated like I’m undependable, crazy, dumb, lazy, just “want” attention etc… everything I’m not and never was. If I were on the side of say a sibling or husband….and I wasn’t the diagnosed I would be supportive and helpful as much as I could possible be. I wouldn’t just pretend it’s not there and say things like “it’s all in your head” or “well if you eat organic food” or “if” do this you this or “if” you that then you’ll be fine you’ll see your not going to die. I have heard them all! “I” didn’t do this and “I” didn’t ask for it and “I” don’t NEED this BS!
The only person who can tell you how you feel is you. You know your body just because a Dr. might have more knowledge WE have the most knowledge of our bodies and what we feel. If a “Dr.” can’t trust what we say then why say your a “healthcare provider” because you care? I got a second opinion from another Neurologist further away and I told my Neuro this and I was honest I said I wanted to keep them both because I was scared, it’s a very long scary process (for some). Ever had a spinal tap? It hurts! Ever had every test that’s offered including blood work and MRI’S ? Not fun, remember you lose time at work for to many appointments I had about 3-4 a week while getting diagnosed. It’s a long lonely shitty road full of options, medications, life style changes etc… Does this sound fun? It’s not! So my question is for all of those who have been left their spouses or friends or didn’t want to even bother with you anymore maybe, family members that treat you like shit who just don’t seem to care what happens to you, and never had ever offered too actually REALLY help you not even a shoulder to cry on? Did that make you feel good, especially while getting told you have to live with a chronic illness the rest of your life that only get’s worse? Yea, didn’t make me feel good either just stressed me to the point of many flares as do many others. Did you expect that this is the way your life was going to turn out? Did you ask for this or want to be progressively sick forever, and for some who eventually may have everyone they ever cared for leave you to rot alone? I’m gonna go with with a big NO to all of these!!! The thing I think that doesn’t make the most sense is how can you abandon someone you love at the hardest time in their life? How can you give up so easy? Why do you take your anger out on the person who is stuck in a situation they ALSO didn’t plan for. It’s because that can’t possibly be true love, no way!
I’m in a support group online that has about 4k members. I have never in my life seen this many people show full support for each other, help each other and basically love each other like family, and they are my second family. No stupid fights, no snobby comments just people helping people who understand each other in an unexplainable way that’s the most amazing feeling ever! My support group helped me get through the roughest time and times in my life and they do every day. we call ourselves warriors not the group just us that have MS. We’re warriors because our battle is never ending, we will never win and we’re battling inside ourselves, we battle our self. So I decided to write a book that is now in the process of being written. It’s about real life real with graphic true stories you would never imagine in your worst nightmares. How we have and are battling 24/7 and WE WANT EVERYONE TO KNOW THE GRUSOME SAD TRUTH! It’s come to this point now where we need to speak up and be heard, to show the one’s who left us behind, the Doctor’s who don’t know what kind of pain they have caused and who has helped and supported us through this. THIS BOOK WILL BLOW YOUR MIND! Multiple Sclerosis is getting more common and getting more diagnosis’s now than ever before. It’s time everyone knows the truth behind closed doors and it’s not pretty and it’s not good or fun!
They say MS doesn’t kill and “technically” no it doesn’t but…..a woman in my support group committed suicide because she couldn’t take another day of living like this. Marriages have been ruined, families torn apart, friends lost, career’s lost, hopes and dreams lost, many suicide attempts etc….. Woman being physically abused, teens and kid’s ripped apart by their peers because they have truthfully been diagnosed as young as 4 years old.
If anyone reading this would like to write their story in OUR BOOK please contact me it’s going to be an amazing journey where we’ll all learn about ourselves and what other’s have gone through and most importantly we’re helping other’s who are newly diagnosed. Because we’re going to tell the TRUTH it’s not pretty but it’s HONEST! Shoot me an e-mail if your interested and if not I’ll keep you all updated as to when it will be published and how it’s going.
Thanks for reading I appreciate your interest. Let’s do this, let’s change this judgment before it goes to far, like everything else in this world and especially this country! Stay safe I wish you all good health and happiness! Please be kind to other’s, help your close friends and family because you also never know when your going to be on the other side and WE NEED YOU and your SUPPORT!