Friday, March 30, 2012

MS.. I think I'm in love with my anti-depressant!

I know I am a strong woman yet I give a lot of credit to certain things in my life for getting me here.  I am extremely fortunate to have parents who offer me emotional support, along with financial, and are there for me whenever I need them.  I am happy to say that they are more than just Mom and Dad to me.. they are two of my best friends.
I've been "blessed" with a few close friends who mean more to me than I could ever put into words and I hope they know this.  Krissy and I have been best friends since the 7th grade, back in 1981 at St. Anne's Catholic School.  We have not been able to spend much time together in person, due to her living in Iceland and my being in Illinois, but we've never let it interfere in our friendship.  When we say "best friends forever!," we mean it.  My very good friend Mike and I met almost 3½ years ago and became close from the start.  He keeps very busy at his auto repair and brake shop but always makes time for me in his life, too.  Perhaps it has something to do with our being only one year apart in age, but no man I've ever met has understood me as he does and we've been known to talk for hours on end on quite a variety of subjects.  And of course, there's Dorraine whom I was fortunate to meet less than two years ago.  I honestly don't know what I would do without her in my almost-daily life. Her friendship and helpfulness is appreciated beyond words.

And who are my other best friends?  My cats, of course!  Emmi Sue, Jinger and Allie are owners of my heart and without them, I would feel lost in a life I sometimes feel would be better left unlived.  They are my daily inspiration, headache, joy, peace, anxiety, laughter, happiness and love.
I love this image!  It makes me giggle so it seemed appropriate.
But there is one more thing I must attribute my attitude and "success" in life to and it is.. dum dum dum.. drum roll please!  My anti-depressant!  I am close to being madly in love with Pristiq!  My psychiatrist had started me out at 50 mg. and it was working just fine until I began the Tysabri infusions.  For approximately a week and a half after the infusion, I would fall into a very deep depression.  I am not one to keep this information to myself so I shared it with my shrink as soon as I could and she chose to double my dosage for those ten days and it made all the difference in the world with an added benefit.  It also reduced my appetite significantly.  What a wonderful side effect for someone who is in dire need to drop a few (dozen) pounds!  So after discussing it with her at my next session, we decided to stick with the 100 mg. on a daily basis and I have to admit I am liking it a LOT.  I don't feel drugged, I still feel emotions (meaning I can still cry if I'm sad), I do not overeat, I'm in control of myself and I finally feel "centered."  What I like so much about it is that I don't feel it is changing who I am but rather allowing the real me to finally come out, full force.  I tend to have a lot of anger issues and they have clouded over the kind, loving person I am for far too long and now I can shine and be who I should have been all along.  This side of me that is FINALLY emerging was always there but didn't know how to come out of the angry, bitter shell of a woman I was.  And no, I won't say that Pristiq gets all the credit since it is simply a pill and I am who I am and if I was a terrible person, then I would still be a shit to be around.  The medication is simply allowing a part of me to be freed from a sort of "prison" it was locked inside of, even though I have been on numerous anti-depressants from the age of 20.  It's obvious to me now that I was never on the right medication and I feel mentally free as a bird!
I have chosen to let go of people who were bringing me down and hold on to those who add something more positive to my life.  I feel more should do the same, whether or not those people are friends or family.  We all deserve to be mentally and emotionally healthy!  With an illness like MS, stress can trigger an exacerbation (flare) and I will do whatever it takes to steer clear of things that will bring this on.  If someone is offended, I try to explain it to them.  If they are still hurt, then they haven't tried to put themselves in my place and will probably never comprehend the reasons behind the choices I need to make.  I've learned to put myself first and I do not feel selfish in choosing to live this way.  Who else can I really count on every single day?  In the end, I have only me for the rest of my life.  We can surround ourselves with a million friends or with 2 or 3 very close friends.  But when it comes down to it, we have ourselves to depend on and I believe we all know this.  I would do practically anything for my parents, my brothers, my extended family, my friends, MY CATS.. but sometimes I know I can't be there.  I am not dependable, largely due to my MS, but also the distance that separates me from most of those I love so dearly.  I know my friends and family know how much I care so I am not worried or concerned about this.  I tell them I love them as often as I can and try to share as much of their lives as humanly possible and for this, I am ever so grateful to have Facebook!  I am now able to see photographs of my cousins and nieces and nephews in Bolivia and Virginia on an almost daily basis.  I feel as if I am right there with them and it makes me happy beyond belief!  Life is good.. if you allow yourself to enjoy it.  Just make sure you live it on your own terms.

Thursday, March 29, 2012

MS.. I am stronger than my disease

My MS is active right now, causing my right leg to be quite unreliable for driving, so I depend on Dorraine to drive me to my chiro appointments, take me to the store and even help me with my girls on days they need to go to the veterinarian.  It used to aggravate me beyond belief that I could not drive my own car to take care of these things on my own but now I see it as a temporary setback, even though I do not really know if it is temporary or not.  For all I know, my right leg could be permanently out of commission and the next step will be to install hand controls on my car, or never drive again.  It's as simple as that.  But then again, my hands are not too strong anymore so driving with my hands may not be the answer either.  I may just need to accept that driving will not be an option anymore and just remember all the years of enjoyment I had when I could.
It's things like this that show me the extent of how much I have grown by leaps and bounds in these last few years.  I am not bitter that I cannot drive.  I am not sad that I may never be driving again.  I am also happy within myself about a great many things.  I am the first to admit that, back when I was dating and a relationship ended, I was almost desperate to find and begin a new one, not giving myself time to get over the last man I had been with or just heal.  Now, I find myself being the complete opposite.  I'm finding peace within myself, which I always had trouble doing.  I have added a wonderful friend to my short list of existing friends and I don't know what I would do without her in my life.  Dorraine helps me with things I cannot physically do in my home but she also gives me emotional support and understanding in a very compassionate way and always wants to know more when it comes to MS.  I joke with her that she's PAID to be my friend but nothing could be further from the truth.  We met because she works for Help At Home but we became friends because our personalities meshed just right.

There are many things in my life that are falling into place, despite what the MS has decided to do to to my body.  I guess you could say I'm laughing in its face!  I have always enjoyed cooking and now the most I can do is heat up a Weight Watchers or Lean Cuisine dinner each night, add a half can of carrots to it and feast to my heart's content.  Yes, I know you can hardly call that "cooking," but when you know you can no longer prepare a meal, it's fine.  It's not as if I don't add my own seasonings to the food and make it my own!  I choose not to make a big deal about things that aren't terribly important and go with the flow as much as I can.
The same goes for dating.  Do you really think I have the patience to deal with anyone's crap right now?  I don't think so!  I am actually, literally, ridiculously happy with myself at this moment in my life that I will do nothing to change my current circumstances.  I am not saying, by any means, that I am content in having multiple sclerosis, because that would be utterly stupid.  But I must say that part of who I am is because of this dreadful disease.  I have MS from the age of 21.. I am 42 and will be 43 next month.  In other words, I know I have MS for half my life.  HALF MY LIFE.  It is part of what has shaped me into who I am today.  Much of my strength, my fears, my understanding, bravery, compassion, wisdom.. it all comes from a lifetime of having multiple sclerosis.  I still hate it, but it has given me a different outlook on life than I would have had without it.  I do not respect MS but I will give it the credit it is due.  I did not deserve MS but have done my best to make room for it in my life because I did not have a choice.  I am brave because being afraid was no longer an option after the first few years.. but yes, fear kicks in every so often and then I throw it out the window and remember I am stronger than fear.  All of us with MS are stronger than our disease but sometimes, need a little reminder of it.  So here is your reminder.  YOU ARE STRONGER THAN MS.  And most important.. YOU ARE NOT MS.  You have MS but it is not who you are.  It will do all it can to change you, and it will change you.. but only allow it to change you for the better.  We are in this fight together!

Wednesday, March 28, 2012

What is MS really like?

I read this today and even though some of it made me giggle, the important thing was that it seemed to make MS more understandable to those who do not have it.

What is MS really like?

When we say we can’t do something because we don’t feel well, put yourself in our shoes by using the examples of our symptoms below…
Painful Heavy Legs: Apply tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try walk, clean the house and pick up a pencil, if successful stab yourself in the arm.
Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of Novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.
TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
Tingling: Stick your finger in an electrical socket – preferably wet.
Tight Banded Feeling: Put a 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?
Shots: Fill one of our spare needles (syringes) with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.
Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one… Bzzzzzzzzzzzzzzzzzz
Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
Urgently Needing to Pee: We put a .5 litre remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet… Get a very large tattoo in your most sensitive area.
Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.
Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
Bowel Problems: Take a 4 day dose of an anti-diarrhoea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there
till tears appear.
Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead… optional of course.
Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms….. hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.
Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
I copied this from Multiple Sclerosis and Me who had kindly received it from Misty McNeill.
I hope those who took the time to read learned a bit more about what it's like to live with MS and this was a rather humorous way of looking at it, but please try to remember that this is our EVERYDAY REALITY.  We do not have the option of removing the needles or pebbles from our shoes, dropping the 15 or 20 lb. weights that make every movement more difficult, getting rid of the bungee cords, Novacaine, boiling water we feel burning our skin, spiders, bees, steel wool pads, sleeping pills, rocking boat..... and the list could go on and on.  But also, don't feel sorry for us.. or at least not for me.  HELP me when you can.  I am not beneath accepting help and I may even ask for your aide from time to time, even though it is difficult for me.
On a final note, please read this image.. those of with MS (and other chronic illnesses) have heard it all before and we find all of them highly offensive!

MS.. MRI results leaving me both happy and utterly confused

I had a surprise phone call this afternoon.  OK, so it was not technically this afternoon since I'm writing after midnight.. I'm referring to Tuesday, but I will write as if it were today since I have yet to go to bed.

Anyway, my neurologist's nurse, Melissa, called to inform me that the results were in from the MRI's I had just had on Monday.  I was almost speechless!  I have never been called so quickly with my scan results and this was only the beginning of the good news.  She told me that they did not find any new lesions, even with the contrast that had been injected that is used to "highlight" active MS lesions.  This was wonderful news, but yet I'm left very confused.  The way I have been feeling lately.. the horrible pain in my body, is NOT my imagination.  It is most definitely not my diabetes as I make sure my blood sugar levels are kept in check, I see my endocrinologist every three months, have all the necessary blood work done and my A1C is rarely over 6.5 (diabetics should try to keep it under 7.0 at their three month check up).  So if the MS is not active and it's not the diabetes, what's going on?

I'm left wondering if my body is, perhaps, just aging more rapidly with the MS and I'm feeling all the aches and pains of someone much older than my almost 43 years.  The pain in my back, hips and pelvis has been so violently harsh the last couple days that it has left me clutching at anything I get a hold of while I sit and tears practically shoot from of my eyes as the pain becomes stronger and stronger.  While at my chiropractor today, he could barely touch me without my body stiffening up and almost jerking off the table as I held back a few screams, even though he is very gentle in the way he treats my body.
I'm not ashamed to admit I'm scared out of my wits right now.  I can't put my finger on what is happening inside my body or what to do about it since I feel I am doing all I can at the moment and will continue with the Tysabri infusions for at least three more months, if not longer.  I'm just used to learning that, with what I know is an "MS attack," there is evidence of it on the MRI scans and this time there is no proof and I find it rather disturbing.  I never want to be considered a hypochondriac because I am anything but.  To look at my face and see the way I am barely walking is to know the pain is real and the MS is most definitely acting up.  So why did it not show up on the MRI scans?  I'm thoroughly confused and want this phase to be over already.  It has barely been a week since this exacerbation began, although I knew it was coming for many months from the way my body was feeling.  I suppose all I can do is ride this out, keep hoping for the best and rejoice in knowing I have many people who care as much as they do.. yet I find it difficult to be happy when the pain is real and is not lessening in any way, shape or form.

I will never give up the fight and I will remain strong.. but I am tired.  I am so tired and maybe this is why I have chosen to remain single.  It's easier to be strong for one person than for two.  If I'm having a tremendously difficult day, I can feed and medicate my kitties, take my own meds and go back to bed without having to worry what anyone will think or feel.  It's only me I need to worry about and I guess I truly prefer it this way.  Perhaps some will find this selfish yet I see it as just the opposite.  It is the most selfless way to be.. and it is how I've chosen to live my life because I can.

Monday, March 26, 2012

MS.. getting by with a little help from my friend

Today has proven to be more difficult than I had anticipated.  Last week I called Help At Home to let them know my MS was affecting me more than usual so they could, perhaps, increase the hours Dorraine is allowed to help me out each week.  I was told I would need to call DHS (Department of Human Services) of Illinois and they would have to approve my additional disability needs before any changes could be made.  Luckily, there was no need for a home evaluation and I have been allotted an extra 3 or 4 hours per week, totaling between 11 and 12 hours (Dorraine and I can't figure out the exact hours since Help At Home doesn't seem to know either).

I tried to go to bed a little bit earlier last night, knowing Dorraine would arrive at 11:45am this morning, which is the ass-crack of dawn for me!  Even with my phone alarm going off four different times before 11:30am, I was still fast asleep when Dorraine called, announcing she was already at my front door.  Oops, I guess I over-slept yet again.  I've been sleeping far too much almost every night day lately (technically, morning), which isn't a rarity when my MS is over active.  It doesn't even matter what time I go to bed either.  I tend to go to bed around 3 or 4am since I have no reason to be up in the morning, but I haven't been conscious until after 2pm many days as of late.  But even if I go to bed around 1 or 2am, I'm still having trouble waking and lugging myself out of my comfy bed by 1 in the afternoon.  The fatigue I feel is just horrible and if it weren't for my sweet kitties, I honestly wouldn't have a reason to get up.. ever.  But now that Emmi Sue needs both her insulin and medicine for her one of her ears in the morning AND Jinger needs her medication for hyperthyroidism (she has an over active thyroid), my girls need me to be up and alert so that I can give them their next round of medications twelve hours later, with Emmi Sue needing her ear medication in the other opposite ear at night.
When Dorraine was at my house today, she helped me in ways that brought me to tears.. and I'm crying now as I write this.  My girls are my life yet right my body hurts so much that I'm not able to do as much for them as I would like and she knows this.  Dorraine has been coming to my home for over a year and during this time, we have become very good friends.  She is priceless to me and I hope she realizes how much I appreciate all she does.  It is completely beyond her call of duty to do what she did but she volunteered to clean the litter boxes for me, even though now that Emmi Sue's blood sugar is still elevated, she tends to pee outside the boxes from time to time, which is why I have a few "doggy training pads" set out next to the boxes.  Dorraine didn't mind and went right into the kitty room and cleaned up after them, knowing I couldn't do it.  I was in tears and she said it was alright because she knew I did as much as I could when it was possible.

In a few hours I'll be off to get my next MRI's and then the waiting game begins.. will my MS be found to be advancing or will it be my old lesions attacking me?  I hope so much that it's just more of the same and I won't be expected to re-learn to adapt to a new life yet again.  I've become tired of readjusting my life and way of thinking to make room for what the MS does to me, even though I know this is what it means to have multiple sclerosis.  I'm exhausted of saying enough already!  I'm sick of making room for MS in my every day life.  I divorced two men because things weren't working out.  Relationships end when differences are irreconcilable.  But I can't break up with the MS no matter how desperately I need to get rid of it.  I'm stuck with it forever.  FOREVER.  I'm not sure how long forever will be but it sounds so daunting.. so depressingly long.
So I'm putting my happy face on because my parents will be coming to pick me up around 5pm to take me to my appointment and I don't want them to see me sad.  I need them to believe I'm handling things better than I really am so I can convince myself that I'm fine, rather than how I am truly feeling.  It's not that I choose to lie to Mom and Dad, but I prefer to smile and be pleasant than show my sadness and insecurity when I need them to be strong.

Sunday, March 25, 2012

MS.. looking at the ugliness of our brain lesions.. and still smiling!

I go in for my next batch of MRI's tomorrow so my neurologist can see if I have new lesions in my brain or if my old ones are active once again.  I'm hoping I do not have more lesions as this would indicate advancement in my MS and the more the MS moves forward, the more my health goes backwards. 

Most of us have seen this type of MRI picture, right?
Years ago one of my former, and absolute favorite, neurologists showed me my MRI's upon my asking.  Seeing the scans depressed me to such an extent that I pleaded with him to not show me any future scans, no matter how much I begged.  My outlook is very different now and I wish to be far more informed and knowledgeable about what is happening in my body, including seeing the scans of my brain (and/or spine).  The MS is not who I am so it no longer bothers me quite as much.. until I saw something a few weeks ago.

My friend Mike told me that the wife of a friend was diagnosed with MS and the way her neurologist had described MS was that she had "clouds" on her brain.  Hmm.  Clouds?  Really?  I guess that's an easy way to explain it when looking at an MRI but take a look at THIS and tell me if they still look like clouds!
The arrows are pointing at MS brain lesions.
When I first saw the above photograph, I literally cried.  It was the first time I literally saw what MS looked like and I wanted to vomit.  MS lesions are not clouds.  MS lesions are not little white marks on our MRI scans.  MS is FUCKING UGLY AS HELL AND IS EATING UP OUR BRAINS!!!  I think seeing this photo was also one of the first times, in recent years, when I felt completely helpless to this beast (MS) which lives within me.  It's taking bits of me away with each passing moment and all I can do is.. basically nothing. Yes, I'm on Tysabri and I still do my physical therapy exercises, go to my chiropractor and take whatever meds I need in order to make my life more tolerable.. but in the end, the MS will do as it chooses because it has more power than I do.  I do my best to keep a strong, positive attitude, but I can do nothing to eradicate the MS from my brain and that is as true as can be.

Will I allow this image to dictate how I live my life?  No, absolutely not.  Yet it has put a different spin on how I see the MS.  Not only do I know what it feels like to have MS, I now know what the bitch looks like when I'm cursing at it.  MS finally has a face so it deserves to be as ugly as it is.  Clouds are far too pretty to be associated with MS!  So I will take the knowledge I have gained and hold my head high and face it, as I always have, and smile in the face of adversity.  I am strong because I have no choice but to be strong.  Life goes on and will continue on.. and I intend to live it to the fullest.