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!

MS.. these are the days of my pain

As I was sitting at a restaurant this evening with my parents, enjoying our pizza, my mind was a bit absent as the conversation went to things which no longer held my interest as much as they should.  I was, once again, wearing the TENS contraption and focusing on the repetitive buzz buzz buzz I felt against my body.  It was not uncomfortable nor painful, but I found it odd that I had one side set at 4.5 frequency while the other side was at 21.  Allow me to re-word this statement.  The pads are placed in an X pattern, so the pad placed on my right buttock is attached to the one on my left lower back, at 4.5.  Obviously, the pad on my left buttock and right lower back were the ones set at the higher setting, yet I could barely feel the electricity on my back.  It was rather troubling to me.  The more I thought about it the more I realized how incredibly fucked up my body has become over the last 8 months or so.


When I was dating the last man I had been in a relationship with, he lived an hour and a half away.  We would take turns driving to see one another on weekends until driving such a distance became an impossibility for me, around November or December.  The truth is, it was becoming increasingly difficult by November but chose to not voice the pain I felt since I hadn't wanted him to feel I expected him to be the only one making the sacrifice, although I eventually let him know.

Two years ago, I was driving up to five hours in a day (each weekend) to see someone but now, I couldn't even be a passenger for an hour.  The pain is THAT severe.  I choose not to dwell on these things but I sometimes get lost in thought and it hits me how far I have come in regards to pain in recent months.. and I don't like it.  I don't like it one bit.  If the pain has increased so much in such a short time, will it continue to progress?


There is an evening I enjoy recalling from almost three years ago and when I allow myself to lose myself in that moment, I can't help but tear up as I remember the sensations of feeling alive.  It was October 2009 and I was laying in my bed, close to falling asleep around 3am when I was suddenly aware of my bed.  I could feel the coolness of the sateen fitted sheet against my skin.  The perfect smoothness.  The slight weight of my light bedspread over my feet and legs.  I sat straight up but was afraid to stand as I had not felt my feet or legs since I was 23, in 1992!  I was able to reach the cord attached to my ceiling fan to turn the light on so I could look at my feet as I cried tears of joy.  My cats must have thought I was insane as I laughed and cried and rubbed my feet on their little bodies just to feel their fur as I had not EVER felt before.  I was in heaven and tried to stay awake for as long as I could.  Ohh, I must have moved my legs over my king-sized bed dozens and dozens of times as I felt each inch of that bed like a mad woman, but it was absolutely divine to finally "remember" what sheets felt like!  I don't know how long I stayed awake but when I awoke the following morning, the MS took the little miracle away but I am forever grateful for that moment.  That one moment of absolute bliss which most people take for granted since it is normal to feel these every day things.  But not for me.  And probably not for you, my friends with MS.

When I try to explain to others what my feet and legs feel like on a daily basis, I tell them to imagine wearing control-top pantyhose with thick socks on top and that is how my feet and legs feel.  My feet are more numb that my legs but all of me is somewhat numb.  Of course, pantyhose and socks do not allow for the pain we feel, but at least it gives an idea of how we don't feel sensations, yet we also feel exaggerated sensations at the same time.  Hey, no one said MS was easy to live with, nor explain!

TENS unit.. I think it's making a difference!

When I was given my TENS unit I really wasn't sure what to make of it, but it seems to be helping already.  I'm nowhere near pain free and I somehow doubt that will ever occur in my life, but my day seems to have gone by without the usual aches and discomforts.  I woke up, threw my linens in the wash, sat at my computer as I ate my yogurt and drank a cup of coffee, then proceeded to the bathroom to take a shower.  Taking a shower tends to leave me not only wiped out for hours on end, but also leaning horribly to the left and in such a degree of excruciating pain that I can barely see straight.  Today proved to be different and I was relieved!  I was able to shower without much difficulty, take the necessary time to style my hair as much as I could and still have enough energy to "stick" the TENS pads where they needed to be placed.  When I was finished I was exhausted, but I did quite a bit and was happy I had been able to do as much as I did.

A few hours after being attached to the TENS unit, Mom came by to take me to the store so I could purchase the ketone strips so I can monitor Emmi Sue's sugar levels.  I've been terribly concerned since she has been napping in places she never has before and seems to have much less energy than usual.  I've had low blood sugar many times but I know what it feels like and what to do to counter this.  My cat doesn't know what is happening if and when this occurs, so I have been keeping a sharp eye on her and calling her name when I see her sleeping for too long.  I don't want her to pass out!  I chose to not give Emmi Sue insulin last night and I will do the same this evening.  High blood sugar is easier to treat than low levels and much safer, too.  My little girl is 15 years old so I know she is no longer a young kitty but she is MY BABY and I will do all I can to keep her as healthy and happy as possible, no matter what it takes.  I've also noticed how when she is not feeling well, she can't seem to be in my arms enough and this is what has been happening with her for months on end.  When I hold her, she doesn't want to get down. She lays back in my arms, reaches up with one of her hands (they are not paws to me!), caresses my face and licks my fingers.  I just love her so much and can't imagine life without her sweet presence.

The short excursion today was the first time I've left the house wearing the TENS unit and it went better than I had anticipated.  It was well concealed beneath my clothes while the monitor was securely hooked onto the top of my skirt.  It felt slightly awkward but didn't even look bulky as I checked my look in the mirror.  I have a chiropractic appointment tomorrow and will wear it to show my doctor and see how that goes.  I'm thinking it may be fun!

MS.. started using a TENS unit for pain

The physical therapist came to my home yesterday (Monday).  Her visit wasn't to begin therapy but to bring my TENS unit and show me how to use it, since I had no idea how it was done.  This next part is word for word from Wikipedia:
"TENS stands for Transcutaneous electrical nerve stimulation and it is a non-invasive nerve stimulation treatment designed to reduce pain both acute and chronic.  It is a small electrical devise that delivers low-intensity electrical impulses across the skin.  The devise is usually pocket size or smaller and is connected by wires to pads which are placed on the skin.  A typical battery operated unit is able to modulate pulse width, frequency and intensity.  It is thought to work in two ways.  Pads are places on or near the area of pain and low-intensity pulses are sent via pads through the skin along the nerve fibers.  The pulses (controlled by the user) are thought to suppress pain signals to the brain and encourage the body to produce higher levels of its own natural pain killing chemicals called endorphins."

I had my TENS unit on most of yesterday but decided not to put it on today as I had a somewhat busy day in taking Emmi Sue to the vet with Dorraine and a planned shower after returning home.  Well, I was much too tired after Dorraine left so showering is on my to do list for tomorrow!  It really is too soon to tell if the TENS unit has helped me at all and as the therapist said, it may take me a little while to feel the benefits as I have intense chronic pain but I can't wait for it to start helping.  I'm not a fan of being over-medicated and this seems to be a wonderful alternative.

As I mentioned, we took Emmi Sue to the vet for her two-week blood sugar check and it was finally below 300.  WAY below 300.  Her blood sugar was at 71 this afternoon and this is frightening to me as Emmi Sue cannot tell me if it gets too low.  It's amazing how that tiny extra 1/2 unit of insulin twice per day made such a difference, but it did so she's back down to 2 units in the morning and again at night.  Her doctor suggested I go to Walgreen's (or other store) and purchase glucose/ketone strips so I can monitor her blood sugar levels through her urine at home in between appointments.  Apparently, the same strips humans use can also be used on my beautiful kitty so I will be buying this as soon as possible.  I'm honestly almost afraid to give Emmi Sue any more insulin tonight so I will probably skip this evening.  I'd much rather her blood sugar be a little high than drop too low.

Can you believe that's all that's been happening in my life since I last wrote? I promise, it's true.  I'm still not able to drive so I'm home all the time with my sweet baby girls and enjoyed the final performances this evening between Jessica Sanchez and Phillip Phillips on American Idol.  Yes, I'm an American Idol junkie and I make no apologies for it!  They were my top two picks from the very beginning and felt they did very well tonight.  I voted for the one I felt should win and the world will know who gets the title tomorrow night!  And for the first time in years, I feel both deserve to win so I wish them luck.