I wish I could drive again.....

One of the worst parts of having MS (and arthritis in my hips/pelvis) has been my inability to participate in activities I used to take for granted.  Just last year, I was able to make the trip to Iowa City, Iowa, barely an hour away, to visit my uncle and aunt (Mom's cousin and his wife) who share a home with my great uncle Emilio, who happens to be my absolute favorite tío (uncle in Spanish).  Now, I can't even make that trip with them, even though my tío Emilio turned 91 just this past weekend.  My aunt and uncle have gone to the east coast to visit their daughter (my cousin) for a week leaving my tío alone, so my parents are driving out to see him every few days to make sure he's doing well.  As much as I would love to go with them, I can't imagine making the trip without feeling horrible for days on end.  Believe me, I've learned this lesson from pushing myself far too many times and always regretted it.

For the last couple months, I've been plagued with not being able to make it the bathroom before my bladder releases, yet I'm also not emptying completely.  Because of this, I'm not taking Vesicare (or did Medicaid switch me to Enablex?) to stop the bladder spasms as it would also make "going" much more difficult.  I'm still taking my nightly dosage of Terazosin to help me go, but I feel like such a mess.  Either I go too much or I can't go at all, and this happens in the same day most of the time!  On top of this, I'm having problems eliminating from the other end due to my not being able to push (even though I never miss a day of taking generic Colace), so all I can say is UGH!!!  I guess I'll be taking an extra capsule tomorrow, even though I already take two on a daily basis.  My insides just don't feel right.

In two weeks, it will be six months since I have been able to drive my car and even though I've grown used to not driving, I really do miss being more independent.  The truth is that being able to drive myself around wouldn't accomplish much since my energy levels and strength would not allow me to do anything, but the thought of driving, in itself, is a feeling of freedom.  I really do miss that.  Just driving, music playing as I smoke and feel fresh air coming in from all sides, provided it's not as stifling hot as it has been for months on end this summer.  Yeah, that's what I'd like to do before the year is out.  I want to drive again!

He just left yet I miss my brother already!

I have been so neglectful of my blog.. what is wrong with me?  Ugh, I should be severely reprimanded for this.  As always, I will do my best to catch everyone up on the happenings in my life.

My younger brother, Gonzalo, left California for good a little over a week ago.  My parents and I thought he would stay in the area for a decent amount of time but one week later, he left on his next adventure.  He left Thursday, by train, and arrived this evening on the east coast.  I miss him so much!  We didn't see each other as much as I would have liked, mostly due to my body hurting so damn much, but the time we spent together was extremely enjoyable.  Gonzalo is one of my favorite people in the world and I didn't let him leave without telling him this, and also letting him know how much I admire and respect him.  He's not only my brother but also my friend, and I treasure him more than words can say.

With my brother at our favorite Thai restaurant.. August 29, 2012

My biggest concern lately has been my little Emmi Sue.  At her vet appointment last week, her doctor informed me that her blood sugar was at 122 (a good number) but her weight had dropped quite a bit.  She had lost 3/4 of a pound in less than a month!  That's quite a bit for a kitty who weighed less than 9 lbs. to begin with.  I've noticed her behavior changing lately and I've become increasing worried about my sweet little girl.  I've had Emmi Sue for almost her entire life and cannot even imagine life without her!  She will be 16 in March (80, in people years) so her health is not going to be as stable as it was in her younger days.  With her weight dropping so quickly and significantly, the doctor is wondering if, perhaps, she also has hyperthyriodism, as Jinger was diagnosed with a few years back.  We have an appointment Tuesday so until then, I'm making sure Emmi Sue is getting all her favorite canned (classic) paté Fancy Feast cat food.  I just bought 40 cans, so I'm sure that will be more than enough. ♥

My sweet little Emmi Sue.  I can't put into words how much I adore my baby girl!

I'm scheduled for my 3rd cortisone injection this coming Thursday but I'm not sure if I'll keep the appointment yet or not.  I suppose it's too soon to tell how I'll be feeling by then but the lower back pain I've been having since my last injection has been very bothersome.  It hits me the hardest at bedtime, yet it's always there.  I've also noticed my MS problems coming and going, but mostly sticking around for days and weeks on end.  Both my feet are horribly numb, much more than my usual, accompanied by the most annoying ITCHING on the tops of my feet and up to the sides of my ankles.  Luckily, I discovered Walmart's Equate brand "Maximum Strength Anti-Itch 1% Hydrocortisone Anti-Itch Cream" (same type of cream as Cortaid, but less expensive) takes care of this itch within a few minutes, but then the itch moves to a different area and I have to apply the cream there.  It gets terribly annoying but at least this cream takes away most of the discomfort.  I do know that itching is one of the strangest MS symptoms in existence, so it's good that I found a way to combat it, at least when it happens on my feet.

OK, enough for tonight.. I'll try to continue more soon.  I wish everyone the loveliest weekend!

I love being a girl!

I had the girliest of girly days Tuesday.  Allow me to set this up for you.  Until around when I was 35 years old or so, I was an obsessive nail biter.  I bit those things almost down to the nub, too.  Ugh, my hands looked awful!  What made it worse is that my hands are small with short fingers (my palms are the largest part of my hands), so my hands looked absolutely horrible.  In my early 20's, I discovered artificial nails, but not the ones you get done at a salon, but the full nails that are bought at any store with nail glue.  The nails looked convincingly real and I enjoyed polishing these nails to perfection and showing off my lovely hands.  It turned out that my fingers, with longer nails, looked stunning, slim and not nearly as short as they had with munched on fingernails.  I was ecstatic.

The negative part of using artificial nails and glue is that it weakens the real nail and doesn't allow much growth, which had kind of been my intention when I had decided to wear them in the first place.  I guess it was around 2003 or '04 when I chose to stop using fake nails and grow out my own natural nails.  It took a while for them to regain some strength, although I am plagued with eternally weak, bendy nails as my mom has.  Now, my nails are so long and pretty and I love to look at my hands.  This leads to my girly day.

I was in my bathroom on Sunday when I lost my balance and grabbed the nearest wall and ugh!  I ripped one of my longest nails (my right ring finger) almost completely off.  I cursed the wall so loud!  I quickly put a band-aid around the finger to save the nail and thought to myself that I had seen something called a "nail wrap" at the store and wondered if I would be able to save my nail with it.  I know anyone who has never had long nails is thinking I was (and still am) insane to stress over a damn nail, but think about how much I am able to do in my daily life.  Umm, nothing!  I still cannot drive and August makes it five months since I've been behind the wheel.  My favorite thing to do is do my nails!  So yes, I was adamant on saving this nail.

When Dorraine arrived on Tuesday, we had to take Emmi Sue to the vet for her blood sugar check up (she is no longer on insulin as her sugar levels had leveled a bit too low) and afterwards, we stopped at Walgreen's.  She stayed in the car with my baby as I went in and was informed that they no longer carried nail wraps but the nearby Sally Beauty Supply had them, so off we went to Sally!  While at Sally, I was explained the correct way to use the wraps, brush-on nail resin and adhesive accelerator and know what?  I was able to save my fingernail!

OK, so on to slightly more important things.  How have I been feeling?  Well, I went in for my second cortisone injection yesterday afternoon, which explains the radiating pain I am experiencing from my hips today.  I'm sure this will pass within the next few days as it did get somewhat better after the first injection.  I'm hoping I won't need to go in for the third round of cortisone in a couple weeks, but we'll see how my body feels.

The worst side effect I experienced from the cortisone was extreme depression and the "need" to eat from the moment I would awaken for an entire week after the treatment.  However, I armed myself against it this time.  I called my psychiatrist ahead of time and was given an extra 50mg. Pristiq for one week to add to the 100mg. I take each day.  I hope this helps as my depression had gotten quite bad.  I also increased my Topamax back up to three tablets in the morning and evening, rather than two at both times.  I've been less hungry for the last week or so, so I know it is already working but not sure how it will react against the cortisone.  I just didn't want to leave things to chance or my own will-power, as I would be sure to fail if I had done that.

Some may disagree that choosing medication is a way of depending on myself, but knowing when to ask for help is a strength, not a weakness.

The best news is that my younger brother, Gonzalo, has left California and is back home!  He came by train but with my not feeling too well today, I won't have my parents pick me up to visit until tomorrow.  It'll be so nice to see him again as it has been almost a year since the last time we spent time together and I love him so much. ♥

Cortisone update

The cortisone injection on Wednesday went well and I have been feeling a lot of relief, although I've been having some strange pains in different parts of my hips, but I'm sure it will pass.  I'm very happy with the outcome so far and was surprised at how easy it was to keep my blood sugar controlled.  Sure, I checked it quite a few times and took some extra insulin, but it was back to normal by the following day.  I was honestly expecting my sugar to stay very high for days, as is usually the case when I'm put on steroids for MS.

Ever since I went through a few weeks of very deep depression, I haven't been able to get completely back to being myself but after the cortisone last week, I feel very disconnected from everything once again.  My cats are annoying me, I have very little desire to chat with any of my friends, all I do is sit at my computer and smoke.. it's been a very dismal existence and on top of it all, I've gained at least 10 or 15 lbs. in the last few months.  I guess I should have expected the weight gain since all I can do is sit on my ass, even when I'm in the shower!  I'm just so tired of looking the way I do and feeling so empty inside.  I need some sort of a change yet I have no clue what sort of change I am seeking.  I'm so sick and tired of feeling sad and depressed and not knowing where the hell my life is going!  My life is completely stagnant and I have no idea how to get it moving again.

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!