MS.. why some meds are so important!

Yesterday, Friday, was a very strange day for me.  It's worth beginning with Thursday, as it seems this is when things got out of whack for me, yet I hadn't realized it until yesterday in the early evening.


Mom, Dad and I celebrated my Dad's birthday on Thursday, at the restaurant of his choice after two doctor's appointments.  In the afternoon, the three of us were scheduled to see one of the nurse practitioners at our endocrinologist's office (all of us had good results) and afterwards, Mom and I had appointments with the chiropractor.  The problem was that I had fallen asleep later than usual the night before.  I had forgotten to take my night medications until later than usual and this was why I wasn't able to rise as early as I had planned.  Aside from taking insulin, I did not take my daytime medications Thursday as I never take them on an empty stomach.  I wasn't concerned, though, as I do not make a habit of skipping any of my pills.  And we really did have a lovely time together.  My parents are truly spectacular and I love being Daddy's princesita.

Since I hadn't taken any medications and felt quite well, I decided to see how I would feel if I didn't take my nighttime meds either.  Ugh, big mistake!  I've become accustomed to laying my head down on my pillow and drifting off to sleep moments later, thanks to a few of the medications I take a couple hours before heading off to bed.  Without these pills, my mind kept wandering to a dozen different subjects, causing me to lay awake for quite a while.  Aside from that, I had the most vivid dreams, not all of which were pleasant, whereas most nights I sleep very deep and awaken well rested.  When I awoke Friday morning, I felt more tired than I had when I went to bed the night before and spent much of the afternoon yawning, yawning and yawning some more.  There wasn't enough coffee to wake me up!  Every time Dorraine looked at me, I was in the middle of yawning so my dear friend found herself yawning all afternoon, too.  So sorry!


While Dorraine was at my house, I started having the strangest pain in my right foot.  I don't remember having this exact sensation before but it was absolutely horrible and maddening.  It's very common in MS to have strange, itchy feelings on different parts of the body and I usually feel this on my legs and back, but even more so on my feet.  The itching on the top of my right foot was making me insane but then it got worse when this terrible stabbing began and didn't stop for a few hours.  Since the itching isn't a rarity for me, I smear some extra strength anti-itch cream on the affected area and it tends to help after a little while but since it was accompanied by a stabbing pain, the cream didn't do too much for me this time.  I just had wait and see if it would pass, which it finally did.

Of course, the itchy, achy foot couldn't be the end of my troubles for the day! Without realizing it, I had forgotten to refill one of my medications into my weekly pill container on Tuesday (when my parents picked my refill up) and it was one of the most important meds I take!  I was feeling "off" from the moment I woke up Friday morning but attributed it to not sleeping too well but by early evening, my head felt as if it was filled with rocks and I was feeling dizzy on top of it.  What was happening?  And then I remembered what this feeling meant.  My vertigo was kicking in so I checked my weekly medications and sure enough, the pills I had ready for the next few days had one medicine missing, the Meclizine!  Meclizine is my anti-vertigo medication and I cannot live without this one for more than a day or I feel the effects very drastically.  I had probably not taken it on Wednesday, nothing on Thursday and it wasn't with my meds for the day on Friday.  No wonder I felt so crappy!  I took my three little pills as soon as I could and should be feeling back to normal by tomorrow afternoon, although I feel much better already.  I really hate needing to depend on medications as much as I do, but this goes to show how necessary some of these meds really are.  At least tomorrow SHOULD be a better day. :)

Ugh.. I overdid it again and a great anniversary gift

From the moment I woke up Tuesday morning, I knew it would be the day from hell.  The pain was horribly intense in both my hips and I hoped with all I was worth that the TENS would bring some relief as the day wore on.


Dorriane arrived that afternoon at 12:30pm and found me in terrible shape.  My hips were leaning severely to the left, meaning the pain radiating from my right hip didn't even need to be put into words.  Dorraine already knew from the way I looked and if that wasn't enough, it was also written all over my face.  The only thing planned for the day was my going to the chiropractor at 4:30pm and I can't even tell you how relieved I was that it was chiro day!

After Mom and I finished at the chiropractor later that day, which proved to be more painful than usual but very necessary, we drove home to pick my dad up so we could have some dinner together.  When we finished eating we stopped at Walmart so I could buy a few things I needed but while we were there, I did the dumbest thing ever.  For some odd reason, I decided to walk.. the entire store.  Why would I do that to myself on a night I was not feeling well?  Was I trying to prove to myself that I was Wonder Woman?  Whatever it was I was doing, it was not the brightest move on my part.  By the time we got to my house, I was ready to drop.


I couldn't allow myself to drop, though.  When we pulled into the community I live in, I had my dad check the mail and there was a key in my mailbox, indicating that a package had been delivered and was waiting for me in one of the larger mailboxes.  I knew exactly what it was!  It was the gift I had ordered for my parents' wedding anniversary next week, which I chose to give them Tuesday evening rather than wait until their anniversary date.


My parents have an on-going joke between them, which they have shared with their friends numerous times.  Mom jokes that when she wants something done, she gets out a 2 x 4 (a huge, cut piece of wood) and swings it at my dad and he does as she says!  Of course this is just a joke as she wouldn't actually do this, but anytime anyone mentions a 2 x 4, they start to laugh.  Well, I was watching Jimmy Fallon the other night when he introduced a line of "Man Candles" by the Yankee Candle company and 2 x 4 was one of the scents.  I almost died laughing and knew I had the perfect anniversary gift for Mom and Dad.  The thing was giving it to them before any of their friends beat me to it!  There is a very good chance another one of their friends could very well have seen an advertisement for this candle scent and bought it for them, which is why I chose to give it to my parents early.  It meant much more to them the first time around than if my candle would be the 2nd or 3rd one they received.  And believe me, they loved it!  When I spoke to Mom earlier today, she was still laughing and raving about this rather silly gift.  And yes, the candle does have the scent of freshly cut wood.. a 2 x 4!

I was supposed to have physical therapy today (Wednesday) but when the therapist called, I told her how much my body was still hurting so she asked me to promise to do a few repetitions of my exercises during the next few days and over the weekend and she'll be here on Monday.  This was fine with me as I really had no strength to even consider exercising.  I'll do my best to get some exercise in but rather than doing 10 repetitions, I'll cut it down to 5 instead as my body is not responding too well at this time.  TENS or no TENS, my body is very weak and in tremendous pain.  There's no need to push myself into yet another relapse when I'm not over the last one yet.

Physical therapy and "I miss" list

Today (technically, yesterday) was officially my first day back to physical therapy.  My physical therapist, Lisa, called in the late morning, made sure I would have the TENS electrodes attached and buzzing away, and arrived in the afternoon.  After going over how I had felt this past weekend, we headed to my bedroom so I could lay down and do the series of exercises she had taught me earlier this year.  Lisa was impressed how I remembered all of them easily, while I honestly didn't think she believed I had been doing them in her absence.  Yes, I have executed these exercises many times but had to skip the entire month of April from the pain I was feeling from the kidney stone.  I admit to not having exercised as much as I should have lately, but the pain I have been had in my hips, lower back and pelvis prevented me from even considering it.  Now with the TENS firmly in place, the movements were not nearly as difficult nor as exhausting as they had been in previous months and Lisa added one more exercise to the end of my "work out."  By the time I finished, I was extremely tired but glad I was able to do as much as I had.  My next therapy session will be Wednesday with the head therapist, Megan, and I don't plan on exercising until then.  I go to my chiropractor tomorrow and Thursday, which should be quite enough for me.  This will be quite a week!

I wish this was what I looked like wearing my TENS, but.. anyway, this is the "classic" placement for the electrodes on the back.

My friend on Facebook, Jennifer, started a post in the RANT room Sunday about things she misses doing.  Her list consisted of dancing, not being able to run with her daughter (who has never seen her run), knowing she had very little limitations, her mind and memory, going out with friends, working and writing.  She, of course, added details to each of these but since I didn't ask if I could include what she wrote, I won't elaborate without her permission.  My list consisted of this:

1.- I miss writing poetry.  I was once able to write the most beautiful poems in minutes and that part of me died a few years ago.  I was even a published poet so now I have to rejoice in that I was able to do it once upon a time since it's not possible anymore.  That part of my brain no longer exists.  2.- I miss reading.  I can still read medical-type books but when it comes to novels, my mind can't grasp the abstract and I feel lost.  I suppose this is the same reason I can no longer write what I once loved so much.  3.-I miss cake decorating.  And damn, I was good!  My hands are no longer strong enough to do this.  4.-  I miss walking without a cane.  It's hard to feel truly sexy when you need a quad cane to get across a room.  5.- I miss not remembering what life was like before I had MS.  I've had this for half my life.  I no longer recall life without it and would almost be afraid to not have this crutch anymore.  Scary, but true.

The good thing is that I don't dwell on what I have lost along the way.  My life is what it is and spending my time crying over things which are no longer possible would accomplish nothing.  I did far too much of that years ago and I've moved on since then.  Now, I really am happy to see my three girls each morning and hear their sweet meows and purrs, hear my parents' voices on the line when they call almost daily, read updates on Facebook from family and friends, see the sun shining in the windows, and make new friends on the MS pages on Facebook.  My life has changed completely in the last few years as I no longer look outside myself to find happiness.  The few outside influences I have are my cats, family and a few choice friends I have allowed into my life, otherwise it's all me.  I am a relatively cheerful person because I have found a level of peace and acceptance within myself which no longer allows misery to reside inside my person.

I didn't put my TENS on until late tonight.. why again?

Through trial and error, I learn things about my body and what works for me.  Well, apparently not using the TENS unit for more than one day is not the best idea, at least not until my body has achieved some sort of normalcy in pain relief.  Live and learn!  I had fully intended on showering early in the evening and somehow didn't get to it until around 7pm or so, which meant I was TENS-free until that time.  Ugh, bad idea.  It wasn't until after showering and fixing my hair that I finally attached the electrodes to the right side of my body but for some reason, I had a lot of difficulty in doing this tonight.  By the time I finished, I had the TENS turned up to the highest levels I have had it set to since I have had it, but I'm not worried about this.  At least I know how well it works and will feel relief soon, hopefully before my physical therapist arrives tomorrow.

My parents stopped by last night for a few minutes and brought me a wonderful surprise.  I had asked them if they could possibly get me a new wireless computer mouse since mine had been acting up lately and what do they do?  They not only bought me a new mouse but a Logitech Wireless Wave Combo.  What is this exactly?  Well, the keyboard and mouse both have a "comfort curve" to make it less tiring for me to use while the keyboard also has a padded palm rest.  I was speechless!  I wasn't expecting such a fabulous gift and am enjoying it immensely.


The next couple weeks are full of family events, although we really don't "celebrate" too much.  Today was Mother's Day in Bolivia and my parents were in Chicago for the day with a group of friends from church.  Wednesday will be my dad's 71st birthday, which seems completely insane to me!  He still behaves as if he were closer to 50 or maybe 60 than 71!  June 4th will be my parents' 46th wedding anniversary and I ordered the absolute perfect gift for them!  I won't post what it is since they also read my blog, but I'll tell all about it after their anniversary and how much they loved it.. I promise!

The TENS unit.. I'm loving it!!!

I have learned to take joy in the small victories of life and today (ok, it was really yesterday) was no exception.  I wanted to see for myself if the TENS unit had made any difference yet so I chose not to place the electrodes (pads) on my body and was ecstatic to find that it had already helped quite a bit!  I wore my TENS unit almost the entire day Monday (from the moment my physical therapist put it on me until bedtime) and at least 12 hours Wednesday through Friday and the difference has been astonishing.  I won't claim to be pain-free, but I am standing and sitting almost completely straight with my pain levels lowered from my usual 9.5 - 10 to a 6.5 - 7. I would say that is a massive improvement in less than a week!  Granted, I haven't done much of anything today that would cause much pain but then again, how much do I usually do to feel such a tremendous amount of pain wracking through my body?


As I did Friday, I spent much of the day in the RANT room on Facebook, sharing thoughts, ideas, laughs and pieces of advice from experiences I've had from years with MS.  One thing I shared had to do with constipation or my problem, which is not having any "push," as my former neurologist described it.  Basically, my brain can't figure out how to help me in having a bowel movement since it can't remember how to push anything out so it's futile to even try.. and this leads to constipation.  I choose to treat this problem before I become constipated, which needs to be done on a daily basis in order to remain semi-regular.  I was told, a few years back, that it is perfectly safe to take Colace on a daily basis to treat bowel difficulties as it is NOT a stimulant nor a laxative.  Being that Colace is a bit pricey, I take the Walmart generic version, which is not as potent but is much more economical.  I take two soft gels one day, three the next, and continue in this pattern indefinitely.  It has been working for me pretty well and felt it was important to share this information with those who had no idea what medication was safe to use for long periods of time.

I hate having MS.. I hate it so much!  But in the last few days I'm learning to love what I've learned through my battles, tears, frustrations, pain and I'm hoping others on Facebook and, of course, here on my blog, will understand their own illness(es) a bit more and how to deal with their lives without as much heartache.  The MS will not disappear because of what any of us read or learn but through human experiences and understanding, the transition into a new phase of life can be gentler, less stressful, and this is what I hope to provide in my sharing parts of my life as candidly as possible.  At the same time, in telling my story and exposing myself as I do, I feel an inner cleansing each time I sit down to pour my heart out to each and every one of you.

Oh, my goodness.. I hadn't realized the time!  It's already after 4am and I really should be tucked into bed with my three girls snuggled in around me so I'll head off to bed now.  Once again, I have absolutely no plans for the weekend so I am sure I'll be back soon with more thoughts and ramblings. :)