Pain clinic and Michael Phelps keeps on winning

The appointment at the pain clinic, this past Thursday, went rather well but the outcome was not what I had expected.  The doctor whom I saw, Dr. Panozzo, concluded that the intense pain I have been experiencing is not from the MS (although it is, most likely, making it worse) but from arthritis.  Arthritis?  All this hell is coming from arthritis???  Oh my goodness!  I cannot even begin to imagine how much worse this pain would be if I did not take Glucosamine Chondroitin triple strength twice per day, every day, for years now!  I was told I had some arthritis in my shoulders many years ago and that this supplement would help in relieving the pain, which it has, so I have been very faithful in taking it.  My chiropractor has also mentioned that I have some arthritis in my hips and back so while I wasn't completely surprised in what Dr. Panozzo said, I was shocked beyond belief by the horrible agony I felt when he poked me in two separate areas.  One was on my right, upper butt cheek, almost at my waist (I think this is called the flank?) and the other was on my right hip.  I am STILL feeling pain where he applied pressure and it's been over twenty-four hours since it occurred.  Damn.  This arthritis is a bitch!

One of the decisions I chose to make, after discussing it with Dr. Panozzo, is that it appears receiving Cortisone injections is my only alternative for relief, unless I wish to take oral medications.  Honestly, this pain is too severe to consider oral meds as the only way out of this!  I asked him how much of a chance there was that the Cortisone would raise my blood sugar levels and he said 100%.  Ugh.  This was not what I wanted to hear.  The good thing is that he said the higher blood sugar could last as little as one day, but possibly as long as four days.   OK, I can deal with that.  I was thinking it would go on much longer than this, so I have chosen to have my first injection this coming Wednesday.  I'm in too much pain to worry over this anymore.  I need relief!

Michael Phelps waving at me.  Hey, a girl can dream, right?

Not much else has been going on with me since I'm mostly home and in pain, but watching the London 2012 Olympics is a lovely distraction.  My television is on from the moment I wake up until bedtime.  I find myself wanting the USA to win more of the events during the summer games than during the winter Olympics, but this could be because I simply adore swimmer Michael Phelps who just finished winning his 22nd career medal (18th gold!), I always cheer on the beach volleyball team of Misty May-Treanor and Kerri Walsh-Jennings and I love USA gymnastics (mostly the women although they are really just girls!).  For other events, I base my opinion on who I feel deserves the win most of all.

Michael may be only 27 but ooh la la!  I can still look..

Now I'll just wait until Wednesday and see how the Cortisone injection works for me.  I hope it's as miraculous as it has been for so many others!  I could use such a miracle right about now.

How one knows when they're relapsing.. my answer

Just yesterday, a friend asked me how one knows when they are going into a relapse.  She felt rather "stupid" (her words, not mine) in asking me this somewhat basic MS question but honestly, how do we know when our neurologists can't even agree on what a relapse entails?  This friend was diagnosed just this past December so I understand her confusion and anxiety when she asks me questions and believe me, I'm flattered when she comes to me with her concerns as I try my best to ease her mind.  I never claim to know everything about MS but do my best to inform her from what I have learned along the way, as gently and honestly as possible.

The answer I gave her, as to how we know if we are going into a relapse, was: "I'm not sure how one knows exactly.  I feel I have been in a relapse since the beginning of the year but my neurologist does not agree with me.  I feel when you feel your old symptoms flaring up again, it's a relapse. If you feel new symptoms you have never felt before, you should call your neurologist.  Actually, if your old symptoms are flaring up, you should call him too.  They usually want to take new MRI's to see what is happening, but even without new lesions showing (as occurred with me), shit.. I'm still having a flare up!"  What do I mean by this last part?  Well, my MS got worse around November or December (2011) but the pain progressed dramatically by February and my right leg became too weak and unreliable by mid-April to drive anymore.  YET, my neuro refuses to believe I'm having a relapse from the lack of enhanced lesions (old or new) in my MRI's.  But what about the many people who are diagnosed with MS despite the lack of lesions on their MRI's?  Or even those who have normal Lumbar Punctures?  There are other ways to prove you have MS and there must be other ways to show I am having a relapse, such as I FEEL LIKE FUCKING SHIT AND MY RIGHT LEG IS WEAK AND THE PAIN IS GETTING WORSE, NOT BETTER!!!  What more do these doctors need?!!

Luckily, I have an appointment tomorrow (Thursday) at a pain clinic.  Apparently what they usually do at these places is inject some sort of pain medication into the affected area, but I am not going to allow them to use steroids on me.  No matter how much the doctor I am assigned will insist (and from what I've heard, they sure do like to push corticosteroids!), I know they have other pain medications at their disposal and they will need to use one of those.  Just as I refuse Prednisone and Solu-Medrol for my MS (due to my being diabetic and these steroids not really helping me much anyway), I will not allow steroids into my body, considering much of the food in the USA is already full of them!  Yeah, I'm stubborn enough to stand my ground so they'd better be ready for me.

This picture is almost perfect.. it's just missing one more kitty!

The scary thing is that I'm becoming almost used to the way my life has been these last seven months or so, which includes not being able to drive in four months.  Will this be my "new normal"?  I sincerely hope not but if it is, I know I'll survive, no matter how much I wish I could go back to the way I felt just last year, when I was far more independent.  After my couple weeks of deep depression, it's good to be mostly back to being myself again and seeing life more clearly and less dismal.. yet I'm horribly fatigued.  I'm not one to take naps or feel tired throughout the day (especially since I'm not able to do much of anything anymore) yet lately, I am tired beyond belief.  I know my cats love it since they get to sleep on top of me when I lay down on the sofa, though!  Ahh, what would I do without my precious babies?

July 23, 2012, in front of my house

July 23, 2012.. I really like this one!

Depression is gone but MS problems are back.. ugh!

When life becomes too difficult, sometimes we must make changes and that is what I did a few days ago and the difference it made for me has been incredible.  Really, the only change I made was to do some "soul searching" and decide that a friend of mine was hurting me more than helping by being in my life, so I had to let him go.  It was not a pleasant experience but the outcome has been very good for me.  I feel much lighter, happier and more free to be myself once again, so it was worth the short term discomfort that was the conversation which led to our no longer being friends.

So after this change took place, my depression vanished almost completely, telling me that our friendship had been very toxic for me.  It's not that he was/is a bad person, but there are people we are not meant to be close to for long periods of time.  In my life he was one such person.  Now, I find myself smiling, laughing, enjoying my cats more than ever and seeing life as I had once before.  I still cannot believe all of this has occurred after one change, but I'm very proud of myself for having realized what had been bringing me down and for having the presence of mind to end it.


My parents picked me up for my my regular, twice weekly chiropractic appointment today and we headed to Godfather's Pizza for dinner afterwards.  The humidity rose so much from the time we left the chiro to when we arrived at the pizza place, only 20 minutes away, that it was stifling!  It was even more humid by the time we finished eating and headed to Walmart to pick up a few items but I was not prepared for what it did to my body.

When we arrived at Walmart my mom, who usually walks by my side, took off ahead of me and Dad so she could return/exchange a couple items.  The moment I stepped out of the car, I knew something was terribly wrong.  My right leg was weaker than it had felt in years, but then I noticed my dad was walking off to catch up with my mom.  Hmm, this was strange but it was no big deal either.  I had my quad cane and knew I could make my way over the crosswalk and into the store, no matter how slow it would be.. and I was terribly slow.  Once inside Walmart, I noticed there were no motorized carts available!  There was absolutely no way I would be able to walk any more, so I called my dad over and asked if he could check the other side of the store for one as I very slowly inched my way to a nearby bench to wait for him.


Shopping was fine but for the first time in I don't even know how long, I was afraid to get up from the scooter once were finished at the store.  My dad headed out to the car to load our purchases while mom stood near me as I ungracefully made my way out of Walmart and waited for Dad to pick me up from the front of the store.  I didn't have enough strength or coordination to walk all the way to the car, even though Dad had parked in one of the nearby handicap spaces.

"When you have Multiple Sclerosis your body becomes your worst enemy."

I'm not sure what is happening with me and I am going to assume it's due to the extreme humidity of the day but I'm not even sure.  My right leg is not only weak, but I have lost much feeling in my foot and leg, all the way to my upper thigh.  Both my feet and ankles are a bit swollen, too, which happened suddenly.  I am considering calling my neurologist, although not much seems to be achieved by my seeing him. Perhaps his wonderful nurse, Melissa, will be able to give me better advice than he will, as seems to be the case in most instances.  If I still feel as horrible as I do now in the morning I will, most likely, try to get a hold of Melissa and see what she recommends.  I swear I stick with my neurologist because I love her so much!

A week filled with too many damn tears....

I have not been doing too well this week and parts of my life have suffered because of this.  I don't like that I have been ignoring my blog as this is a sort of therapy for me, but I have been paying little attention to my beloved cats and there is no excuse for this as they need one-on-one time with me.

What has been happening with me?  Depression.  Deep, sad, ongoing depression and I cannot seem to shake it.  I know it will eventually pass but I am so tired of the life I have that it may take more time than I would like.  I'm just sad.  Deeply fucking sad.


My way of dealing with depression is not the best, and I know this.  Rather than talking about what I have been feeling with my friends, I lock it away deep inside and spend many days crying as I try to pull myself together.  Have I been able to do this?  Hmm, I suppose I have to some extent, but not nearly enough.  I reached my breaking point on Monday, when on the way to my chiropractic appointment.  Nothing major had happened but after less than 10 minutes on the road, I asked my dad to turn around and take me back home while Mom kept asking if there was anything they could do for me.  No, there was nothing they could do.  I was tired of needing rides to my appointments and arriving late to most of them, not being able to do almost anything for myself, dealing with unending pain and being alone.  I enjoy living on my own but I realized how lonely I have become.  The only ones who call me on the phone are my parents and/or reminders for medical appointments.  That's it.  No one else ever calls me.  To be fair, I don't call anyone either but hey, I DON'T HAVE MANY FUCKING FRIENDS WHO LIVE NEARBY!!!

So why have I not written lately?  When I am hurting too much, especially emotionally, it becomes nearly impossible for me to put words down and share what I am going through.  I know what I am doing is not fair to the wonderful friends I have online since we are always there for one another, but it's so hard for me to share my pain since I became accustomed to being teased when I "complained" when I was growing up.  My older brother basically drilled into my young mind that I was a whiner and nobody wanted to hear it anymore, so now I clam up and choose not to share my pain with those whom I should be sharing all of this.

I prefer to be looked upon as someone who is strong and dependable, rather than a woman who has many weaknesses, pain, depression, fears, sadness and nightmares.  But then again, I am only human.  Yes, I am strong but I can't be strong every moment of every day.  I have my moments of severe depression when life is almost too much to bear and nothing will console me except time alone to wallow in my misery.  And when I emerge from my tears, I just want to be held.  To be told I am loved just as I am, even when I am shaking from all the crying and am unable to speak through the tears.  Is this really too much to ask for?  Do I come off as so damn strong that it is incomprehensible to believe I may need someone to depend on?  Well, here it is.. I, too, need someone to lean on!  I need someone whom I can depend on and trust with my sadness and fears.  I need someone who is strong yet weak, loving and comforting, stubborn yet yielding, who needs me yet can stand on his own.  I think I found him.. I really do, but he's unsure so I will never force myself on him nor will I make decision for anyone but myself.

I think it's mostly my own fault that my friends see me as strong all the time as I rarely allow them to see my weaknesses and when I finally do, they're shocked to see how "real" I am.  I set myself up for the way they react as I try to be so strong for everyone, not allowing my own needs to be seen.  I really do need to work on this as my friends have told me they wish to know what is troubling me and what they can do to help.

Sometimes my thoughts are my worst enemy

Oh my goodness, I think this is the longest I have ever gone without writing an entry and I must say I feel terrible about it.  My mind has been in a million places but I haven't been able to make it stop in one place long enough to form many coherent thoughts so I am going to attempt to make some sense tonight.

After a couple weeks  with the new TENS system, I am still unsure if it is helping as much as I had hoped but am using it as much as possible.  It never ceases to amaze me at how much power this thing uses!  Two batteries rarely last more than a couple hours, so it's a good thing I have been doing a pretty decent job of charging them up ahead of time so I haven't been left without batteries too often.  Still, it's somewhat inconvenient to need to change them as often as I've had to but as long as I get some relief, I'll continue to do so.

I guess you could say my life has fallen into a sort of lull as of late and there isn't much to write about as I truly do not find it productive nor helpful to merely write about the pain I feel nor complain about it.  There HAS to be more to life than this.  There is more, isn't there?  Or have I lost touch with life outside these four walls to such an extent, that I've forgotten what it's like to feel more alive than I have been?  This could very well be the case as I cannot even remember the last time I left my home with the sole purpose of having fun.  What is fun anymore?  For me, I couldn't even say.  Honestly, if someone were to ask me what I wanted to do for an entire day, I would be speechless.  Yes, ME, speechless!  My mind would not even know where to go to come up with any ideas, much less decide where to go or what to do.

I spent much of this past weekend and early this week crying and over analyzing things that have been happening in my life and I need to learn to stop doing this.  I freely admit to having this terrible fault in my character and need to work on it, yet it such a part of who I am!  How do I stop doing something, which truly makes me insane, yet calms me at the same time?  I can't explain why over thinking situations would relax me when in all reality, it keeps me up at night and prevents me from sleeping enough, yet I can't seem to stop.  And then I want to demand answers to my questions now!  Not later, but immediately, even though the timing is, more than likely, very premature.  Ugh, I can't even explain what I'm talking about but I think I have reached a place where I can finally stop stressing as I believe some of it has been resolved.. to a point.  Add my scattered MS-brain to the mix and you get one very messed up lady on your hands these last few days!

Not the best few days for me and those I love

It seems Thursday was basically a bad day all around for me and most of my friends.. and my sweetheart.  When I first got on my computer and checked Facebook, I was startled and really very frightened, by what I read.  My honey had experienced a sort of "black out," or perhaps seizure, of some kind.  It was short lived as it was only a couple minutes in duration, but it was enough to scare his co-worker into calling the paramedics.  This has us both concerned and I hope he doesn't have another episode before seeing his neurologist in a few weeks.. or ever!

This is a message he wrote and posted  on Facebook on June 28th.. and I love it.

A few of my dearest friends with MS were also having a terrible time of it and much of it can be attributed to the intense heat wave which has been plaguing almost the entire United States for over a week.  We should finally have some relief by Sunday, or at lease in parts of the Midwest.


Then there's me.  I had gotten up earlier than usual Thursday, as I'm trying to become accustomed to a more "normal" schedule so I can catch my sweetie earlier in the day and maybe even get a few things done.  After reading his message and knowing he way laying down to sleep for a  while, I took advantage of the moment and showered and this pretty much wipes me out for the rest of the day.  I knew I had to relax after showering as I still had a few things to do as the day went on, so I hooked myself up to my TENS system and sat down to let it work its magic.  I really am going to blame the excessive heat for the incredible pain I have been in as neither the Baclofen (my pain/spasm medication) nor the TENS has been helping as much as usual lately.  By the time my sweetie got online, around 3:45pm, we only had a few minutes to chat before I needed to get ready for my parents to take me to my chiropractor.  He was still feeling quite "out of it" and reassured me he would be going to bed early that evening, as I still needed to do my grocery shopping after my appointment and would not be able to catch him again that night.

Even with my using a motorized cart at Walmart for shopping and my parents loading everything into a regular cart for me, by the time we arrived at my home I was completely exhausted and my hips were in terrible pain.  What had I done to hurt so damn much?  Basically, nothing. I'm sure I had been very tense inside since I couldn't get the picture of him out of my mind, laying on the hard, cold floor yet having no recollection of it when he came to.  I couldn't get this image out of my mind so between my concern for him and the body pain I was in, it was a very shitty day and evening.


Honestly, the pain keeps lingering and with the weather finally stabilizing a little bit this coming week, I'm hoping the pain will lessen at least enough for some relief.  I don't ask for much, just a tiny bit would be nice.  The good thing is that after spending some time with him online today (yes, it was technically yesterday), he was feeling somewhat better and for this, I am VERY thankful.  Now to see what the rest of the weekend and week hold for me, my love and my friends.  It can't get much worse, can it?

Dealing with the heat, life and love ♥

Tomorrow is the 4th of July, Independence Day for the United States of America, and I will spend it at home where it is nice and cool.  We have been having 100°to 110°F (37°to 43°C) for days on end with no relief in sight until, maybe, Sunday or Monday.  Luckily, I haven't had to leave my house for any reason, aside from seeing my chiropractor yesterday, so I've been keeping very cool but those of us with chronic illnesses still feel the effects of weather changes, even when inside our homes.

My happy news is that when I was coming home from dinner with my parents (after the chiro) yesterday evening, there was a box in my mail with a battery charger and two packages containing four rechargeable batteries in each!  I was so glad and hopeful that I would maybe finally get some relief with my new electrotherapy system and so far, it is working quite well and the charger is actually working as it should.  Yay for me!

I have to admit that as much of a positive person as I have become in recent years, I have few friends in my life.  Wait, what am I saying?  I HAD very few friends until recently!  Now, I have friends to chat with at almost any time of the day and it is absolutely wonderful to know they are there for me as much as I am there for them.  Most of us share an MS diagnosis, but not all.  Those who do can understand me on a different level as we have many of the same insecurities, battles, fears and are able to support one another beautifully.  And in the process, I fell in love and am on top of the world.  What more could I want?

Simply by being true to myself and sharing my insights, an entire world of friends have come into my life and changed my outlook to make it even sunnier than it already was, and this is saying quite a lot.  Yes, I get down on myself and life when my MS is kicking my behind with the pain, but all in all I really am a very positive person as worrying and stressing is pretty damn pointless.  Now I have a new focus.  I have something, or someone, to keep my mind so very occupied that even the pain cannot compare to what I feel in my heart and mind.  I hate to call him a distraction but from the pain, yes, he definitely is that and I am very grateful.  It feels amazing to be happy and smiling from ear to ear for no reason other than knowing he's thinking of me.