Saturday, May 26, 2012

MS RANT OUT LOUD = new friends & lots of hugs!

Have I mentioned lately how much I enjoy my time on Facebook?  By pure luck, I had "liked" a post by a gentleman on one of the MS pages of which I am a member and proceeded to send him a "friend request," which he accepted.  Since then, and it was only a couple weeks ago, he has started two pages.  One is called MS RANT OUT LOUD!, while the other is the MS RELAX ROOM.  Being the way I am, I had fully intended on spending most of my time in the MS RELAX ROOM but have found myself in the RANT ROOM almost the entire day, and I do not regret it in the least.
I came across many people, mostly women, who had been recently diagnosed with MS in these rooms, and the way I've learned to handle people and situations seems to have benefited me in helping at least a few of them.  It wasn't my intention to help anyone this afternoon when I entered the Rant room but I saw a post that was near and dear to my heart.  The post was written by a 37-year old woman who was tired of religious people saying to her that she should "just pray away" the MS.  She didn't like religion being forced on her and of course, I had to chime in!  The discussion became slightly  heated but no one was disrespectful, and the main topic became whether or not it was offensive when Christians (we were focusing on Christians since no other faith made an argument) offer to pray for a person with MS.  I was wonderfully surprised to find a few Atheists present in this RANT room and proceeded to respond this way:
"When people say they wish to pray for me, I used to smile and say 'thank you.'  I don't do that anymore.  Yes, I too am an Atheist and my parents are both Christians (Catholic even).  They know how I feel about it and they understand.  If you're going to take time out of your day to pray for me, it would mean so much  more to me if you could help me in ways that would HELP me since I can no longer do much for myself.  Heck, bring me a casserole, pizza or a $1 cheeseburger.  Don't assume I want your prayers.  Hundreds have been praying for me for these 21 years with MS and not a thing has changed and it won't ever change.  Do something productive or bother someone else.  My parents help me in a million ways and I know they pray for me .. I can't stop them but they do not talk about it around me."
But this wasn't the only sort of post I encountered today/tonight.  People with MS have many frustrations, as do those with other illnesses.  Two ladies posted how they were tired of family members not believing their MS was real and that they were "faking it" in order to get attention.  How sad!  One woman "ranted" how people treat her as if she is broken when in fact she is not.. she has MS.  The lady who posted this comment was Brenda (who asked me to call her BrenBAAA) and I simply mentioned how I usually say that "it's just another day in paradise.. how are you?" and only my mom knows it means that I feel like crap but others don't need to know.  She loved this phrase and asked if she could use it, which I, of course, said she could.

During the course of the evening, BrenBAAA, Amy and I got to know one another and shared our stories and many laughs.  It was wonderful!  I hope we become close friends and are able to chat more and more, not necessarily only on topics having to do with MS.  And really, we did have a lot of fun this evening.  Both these ladies were diagnosed just this year, which breaks my heart in ways they cannot even begin to comprehend.  I was giving them one of the best pieces of advice I could think of, which helped me immensely when giving myself either interferons or Copaxone injections.  Before injection the patient is told to take the syringe out of the refrigerator in order for it to reach room temperature.  But honestly, how long should that be?  I learned the answer on how to not only bring it down to room temperature but a little warmer, all in less than 5 minutes and was eager to share this little piece of knowledge.
I am extremely busty and learned early in life that it gets very, VERY warm (yeah, more like HOT) underneath my breasts, so while I was taking Copaxone I would place the syringe under one of my breasts for 3 or 4 minutes and it was instantly warmer than room temperature!  It was just that easy.  And if a woman is not busty enough or the person needing the injection is a man, merely sitting on the syringe for at least 5 minutes will also do the trick, just be careful not to bend any part of the apparatus.

It may seem silly but in sharing something as simple as this tiny bit of information, we became close and were laughing more than we probably have in quite a while.  It was extremely therapeutic for me as I have been in terrible pain for days on end (even with the TENS electrodes all over me) and I was focused on our chat to such a degree that my pain was completely forgotten.  I need more nights such as this!

After a few hours of chatting in the MS RANT OUT LOUD! room, Brenda needed to head off to bed and Amy and I said good night in a group ((((hug)))) and it was so sweet that I could almost feel the arms of my new friends around me.  I cannot wait until tomorrow to chat with them again and find out what they thought of this post!

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