Obese with MS

Obese with MS

Today I head to see the neurologist because  I am having a flare-up of my multiple sclerosis symptoms.  Don't judge, but I have been having these same symptoms for about two to three weeks, and I just made an appointment to see my neurologist for today. Why do you say didn't I make an appointment before today? Probably because with the flare-up doing ANYTHING extra is just an extreme effort. And...I HATE having to be weighed in for my doctor's appointment.  Yes, sad but true, suffering with multiple sclerosis and still vain.

See, I am, according to those lovely insurance weight charts I am not overweight, but...Obese! I never had any issues with my weight until I  started having back to back major relapses with my multiple sclerosis and round after round of steroids and solumedrol.  No, I never refused treatment like so many people do so they won't gain weight. I mean, I'm vain but not that vain.  I look at my kids and want to be my best so I take the medication.  Now, though the effects of the medication that I took to feel better, to function better is coming back to literally bite me.  What's a lady to do?

Some things I have done to reduce my past steroid weight is cut fat, cut carbs, and reduce sugar.  Though dealing with the fatigue that comes with multiple sclerosis can make doing exercise sometimes unrealistic, I do try to do some sort of exercise three times a week.  I right now focus on MS Yoga with Jean Baptiste and Walk Away The Pounds with Leslie Sansone.  And, yes, all these efforts are paying off but I am finding out that with each five to ten pounds that I have lost I still have that much more to lose to get that damnable obese off of my medical chart.  

   Hi. My name is Carla and I am Obese with MS.

So thanks primary doctor who has a body mass of a prepubescent teen for sticking that lovely moniker on my chart. Thanks not reviewing my past medical history that shows my weight was never a problem until my multiple sclerosis spiraled and my quarterly steroids started and stayed for seven years.  Thanks for not taking into consideration the cultural factors that separate your weight standards to "ours". Thanks for signing me up to go to the weight clinic where other patients give me the evil eye.  Thanks for ignoring the fact that due to my illness I may not EVER be able to exercise for an hour EVERY DAY. Thanks. Oh. So. Much. So, as I go weigh in for my doctor's appointment and face the dreaded scale I will again be motivated like I am everyday to lose 10% of my body weight, well, at least 10 pounds.  I'll take being overweight as opposed to obese any day.

Pain, Pain, Go Away...

Pain, Pain, Go Away...

I remember so well that cute little saying I learned in kindergarten of, 'Rain, rain, go away, come back on another day.' This morning it was raining.  The rain didn't bother me, but the pain that I was in and still am in is the problem.  I thought of the cute little saying about the rain, but for me it changed to, 'Pain, pain, go away, don't come back on any day.'  Even in this MS world, there are even cute euphemisms for pain, it is called MS Hug. Doesn't that sound cute?  But it is soo not cute by any means.  Well, today the MS is hugging me and unlike the warm, loving hugs I get from my kids and my husband that I love so much, this hug is just downright horrible. 

The MS Hug is just like a hug, except that it doesn't feel good at all.  The MS Hug is a tightening sensation that feels like I have been griped by the most extreme pair of Spanx ever around my torso. But you see with my MS Hug, it just doesn't stop around my torso. No, my MS Hug REALLY loves me unfortunately.  My MS Hug not only tightens around my torso but also goes up to my neck, shoulders and my jaw. Today is not a good day. Today is a really painful day. Today, I want the pain to go away, never to come back any day. Unfortunately, the MS Hug is around more often than not, and it gets worse each and every time. Ugh.

Sometimes in dealing with a chronic illness, the day in and day out of things can be a bit much. Some days I just need a break from the symptoms. A break from the constant pain. A break from all the medications.  A beak from the litany of doctor appointments. A break from...me.  But, alas, that cannot be, so you deal. You deal with the pain. You deal with emotional distress and depression. You deal with the guilt of not being the person you were before the illness. You deal with people not understanding your illness. You deal with people judging you for not doing more.  You. Just. Deal. 

Pain, pain, go away, don't come back on any day.

"I Just, Can't"

"I Just, Can't"

It has been a bit since I have been writing on my blog. I have been on a couple of vacations, dealing with the heat and, ugh, the humidity and most recently a flare-up of my MS that just won't go away. Dang It! But, in the end I just had to say, "I Just Can't"!  I know that this is so self defeating, but sometimes, maybe it's only me, but there are days where "I Just Can't".  It's not because I don't want to, it's just...ugh. But is this statement a bad thing!?!

My mother comes from the generation where a person NEVER, EVER states that they can't do something. And for a very long time, I felt the same way.  I never said I couldn't do something. I never said that this task was too much, too overwhelming, too energy sucking, too mentally draining, too physically draining...  But, now I have gotten to the point in my life and the progression of my disease that I realize that saying that, "I Just, Can't" is really not a bad thing. One has to stop looking at the phrase, "I Just, Can't" as to one delving into self pity, or giving into weakness.  The phrase, "I Just, Can't" is just honest and straightforward.  If a person ever uses this phrase with you, don't take it as a weakness of the person saying it, but take it as a person who knows and understands his/her limits and is okay with acknowledging them. Aloud. Ahh, if others could be so lucky as to realize that you are not Superwoman, or Superman, that the world will continue to spin and things will get done without your input. Kind of a scary thing huh!?!

When I say to people, "I Just, Can't" make plans with you next week, it does not mean that I NEVER want to see you, or you are getting on my nerves. To the contrary. "I Just, Can't" make plans in the future because I never have any indication of how I will be feeling from day to day. So if I have no idea how I will be feeling tomorrow, how can I make plans to go out with you next week!? "I Just, Can't" I still love you, but...

When I have been in situations where I am not liked, and or welcomed and struggled to make a breakthrough, years before, I fought, I struggled to make people see that I was an okay kind of person. But, as my disease has progressed, things that are endless, senseless, energy sucking, mentally draining is...ugh.."I Just, Can't."  "I Just, Can't" put myself in situations where I am constantly going uphill.  "I Just, Can't" be bothered any longer.  It's not that the wish is no longer there, or the determination is lacking, but it is the fact that with my disease, I no longer have the energy, either mentally or physically to be bothered.  My concern is taking care of my health, my family who loves me, my friends who accept me.  So, no, "I Just, Can't." "I Just, Can't" be bothered anymore. Ugh.

When my friends call and I end the call in a half an hour, do not be upset. It's that "I Just, Can't." I wish I were the woman of yesteryear, early, early in my disease, where talking for long stints on the phone were just, awesome. Now, talking, really for more than fifteen minutes is just too taxing and I talk for a half an hour because I am being nice. But to be truthfully honest, I am exhausted every waking moment of every waking day. This is no reflection on how I feel about you, and not that I don't want to talk to you, it's just I just don't have the mental energy to expend. I'm sorry. "I Just, Can't."

When I make plans with you, then call you to cancel, please do not be upset. It's just that, "I Just, Can't." Gee, I have so many great intentions that get lost in the MS translation of my reality.  If I told you that I could come over to your house, and tell you that I just need to rest, please do not be upset.  If I tell you to please come over my house instead, please know that on any given day driving is..."I Just, Can't."

When my children ask me to go on a field trip and, I yet again, have to disappoint them, don't think that this doesn't break my heart. It's, "I Just, Can't." I want nothing but the best for my children. I want them to experience any and all things and sometimes I can pull it together and go. But, there are other times where, "I Just, Can't."

So,  I am proud now that I can say, "I Just, Can't." For many years after my diagnosis, I pushed, and pushed, until I fell down. Now, I am a older, wiser. I know and understand my weaknesses, and saying, "I Just, Can't" is not bad thing. 

When In Doubt Just Shut Your Mouth!

When In Doubt Just Shut Your Mouth

My mother totally despises the title of this post because she is considered "ole school" and dislikes telling anyone to shut your mouth. Well, at least some years ago, but now that she is older she is more likely to tell someone to shut their mouth but states that I am still too young to say this outright. But...I feel that this is a must.  If you know someone who has multiple sclerosis, here are just some helpful things to not say to someone who at any given day is either living with or suffering from MS.

• "Oh my goodness, you have gotten so big since I last saw you!" Again, I can't understand the rudeness of the nation today but everything that comes into your head ought not be said.  There are many side effects of the medications that we having MS take in order to survive and keep a decent standard of living. At any given time a person with MS could be on steroids in order to combat a flare-up or a relapse.  We are surviving, just keep this comment to yourself.
• "There is a person I know that has MS and they are still working, what's wrong with you?" For as many cases of diagnosed MS that's the varying ways that the disease affects each and every individual.  Yes, for some years after my diagnosis I did work, but each year and with each relapse it was clear that in my line of work, continuing working was not in the cards. Do I feel guilty about not being able to work? Ofcourse. But on the days when I have problems seeing, walking and problems with balance, the choice is clear. You do not know nor understand a person's circumstance. And for you to inquire or question why a person is not ABLE to work is just rude.
•  "I knew a person who had MS and they died. You do know that that is fatal?" There are many things that could take your life, a sudden onset of an illness or a freak accident. But to remind a person who has MS that it could be fatal is rude and very obtuse in thinking.  I understand and I am sure that others with MS have understood this notion and have come to grips with this.  But, just because I have MS does not mean that I am dying from MS today. But for you to remind me of this usually on the day where I feel like crap, let me be the first to say, 'Just shut your mouth!'
• "You look like the picture of health!" Though I am very happy to hear these words, let me reiterate that I am not healthy. MS is called the 'invisible disease' for a reason.  I feel like I need to carry around my MRI's, my symptom checklist and my litany of scripts that I take daily to combat each and every MS symptom. And though this may sound like a compliment it just brings to my mind that on any given day I feel like crap. But, thanks anyway.
• "I heard that MS is hereditary. You must be so worried about your children!" News flash, there really isn't enough substantiated evidence to support that there is a hereditary link with MS.  Although MS has been seen in more than one family member, there is more likely an environmental link or the case where both family members have had a similar illness i.e. mononucleosis. And yes, do I still worry about my children developing MS. Yes I do, but I also do not need your two cents in the matter either. So again, shut your mouth.
•  "You don't really need that cane do you!?" Even though I do have a cane that matches each and every outfit, (yes, I am still vain), this does not in fact mean that I am simply trying to accessorized. My. Cane. Is. Needed.  Though you may not think 'I need' my cane, I in fact, do. I need my cane to balance, to aid with my sluggish slightly dragging left leg and foot, and to be able to walk pretty much any distance. Again...keep it moving.
• "You sleep a lot, how in the world can you be tired all the time?" Yes, I sleep, when MS allows me to sleep.  Each an every night I take medication prescribed to be to aid in MS insomnia. You do know that in the brain where I have lesions causes impairment of each and everything that I do and cannot do, i.e. sleep. And MS fatigue is just bad.

"I know exactly how you are feeling. Once when I had whatever, whatever....." I am not trying to negate how you are feeling or how you have felt but PLEASE I really do not want to hear that you feel EXACTLY the way that I feel because, you do not. Do you know that there are days, nights when I am in pain, in tears and can barely move due to fatigue but life has to continue. No!?! Again, shut your mouth.

I could on on for days and days about the ill spoken comments, questions and remarks.  A word to the wise, if you meet someone who has MS and you have a question, think first and if you are in doubt...just shut your mouth. This has been a public service announcement. 

Karma May Be A B****, But Global Warming Is A Bigger B****!

Karma May Be A B****, But Global Warming Is A Bigger B****!

Well...it is coming up on the start of summer holidays which is Memorial Day!  WooHoo!  What is coming seemingly earlier and earlier is the heat of Summer coming in the middle of Spring.  And contrary to what Sarah Palin and her gluteus maximus state, and the GOP, global warming is real and is upon us.  And either we deal with now, or brace for the consequences that will follow.

Global warming, let's look at some facts regarding this phenomenon that is taking over our weather.  Global warming is the increase of Earth's average surface temperature due to greenhouse gases, such as carbon dioxide emissions from burning fossil fuels or from deforestation, which trap heat that would otherwise escape from Earth.  All this means is that we, us humans, are basically corrupting the earth with our carbon footprints and no regard for the major repercussions that will follow. We are destroying lands due to deforestation. We are slowly killing of species of animals. Places on earth that were wet, are now wetter, places on Earth that were dry will be devastatingly drought stricken. If you look around you can see the devastating effects of global warming.  Since when does the East Coast of the United States have severe hurricanes like Hurricane Sandy, which we felt up in Ohio! 

Then, we have the rising temperatures.  Each year our average is rising.  As I sit and type the current temperature in Euclid, OH is a muggy 84 degrees, with the humidity hovering at over 50%.  I look ahead at the Farmers Almanac and look at the forecast for the coming months and I worry. I worry because with my chronic illness of multiple sclerosis, the worst thing for me is heat and humidity. I look at the coming months and the average temperatures will be basically 90. But, this is 90 degrees with humidity. Not nice.

I have a cousin who states that these temperatures remind her of yesteryear when Summer heat hit you up in mid Spring and climbed higher with each passing month.  I don't share this fondness.  I remember the 100 degree temperatures that we saw last year and the year before and each year the temperatures get a little higher and the humidity is about equal with the temperature.   Actually on the day of my grandmother's 90th birthday party the temperature was a steamy 95 degrees. And I say steamy because the humidity was at 100%.  The many days of dealing with this type of heat day in and day out, inevitably led me to a relapse. 

I know the song well, Some Like It Hot by Power Station, but this person, does not like it hot.  I sit back and try to do my part to combat the global warming effects. I try to reduce my family's carbon footprint. We recycle religiously. We unplug appliances that not in use. We have timed showers.  We have a garden. We use natural products to kill weeds and insects to protect the water supply. We have energy efficient windows, light bulbs, appliances. But, it's not enough. We are in the midst of global warming. Our temperatures are increasing, ice is melting worldwide, sea levels are quickly rising, hurricanes and tornadoes are stronger, more fierce, there will be more flooding, more droughts, species will become extinct due to their inability to adapt, and yet...we do nothing.

So, no. I don't like it hot. I don't like the fact that we are the cause of so many things going wrong with the climate.  As the heat rises, people who suffer from chronic illnesses will become sicker and some will perish. So, yes, I think of the heat and I am truly scared. I know what it will do to me and to the millions of people who suffer from chronic illnesses. But still, I do my part in some hope that others will follow suit. Because, to be truthfully honest, I am worried that I and many people like myself will not be able to adapt to this changing climate, the rising temperatures, pollution and pollen.  I guess it comes to Darwin's natural selection based on the survival of the fittest.  The way the climate is going, Darwin may be correct in that only the strongest will survive.

You Are So Strong!

You Are So Strong

"Carla, you are so strong!" I smile and say thank you, but I always question, how am I strong?  If anyone knows me, I was and never have been the healthiest person. I was the child always in and out hospitals. Doctors running test after test, not knowing my condition, and telling my mother to pray.  Even then I can remember nurses speaking in hushed tones how strong I was. I didn't get it then and now that I am grown, I still don't understand it now.  Am I strong because I am still here after being sick all of my childhood? Or being sick basically all of my adulthood? If that is being strong, well then, that pretty much sucks. 

I have to mention that I get this a lot and maybe others of us who have MS or any other of the wide variety of chronic diseases have heard.  You are strong.  This is a compliment that is nice, but not deserving. Any given day, at any given minute I do not feel strong. At any given time I feel weak, scared, ready to give up.  I am working on what hand I have been dealt.  I have MS, I don't consider myself strong, just living.

When I think of strong I think of our last tragedy in Boston. Strong is the survivors of the Boston bombing. The families who lost a family member.The survivors who have to be strong and carry on to a new life with artificial limbs. To me they are strong.  Strong is the Newtown parents speaking to Congress regarding gun control, using their grief to strengthen them. To me, they are strong. 

I guess, when you look at strength, or being strong looks different on the outside looking in. I am quite sure in the scenarios that I mentioned that they do not feel strong all day, everyday.  Strong is such a powerful word that I feel like a fraud to accept this compliment.  I do not feel  strong.  I feel scared. I feel afraid. I feel weak. I feel, at times, like giving up.  But, each morning, God wakes me up, so he woke me up for a reason.  My father used to tell me that each day you are either living a little or dying a little, it is up to you to make a choice each day what you are doing.  Are you living or are you just dying? So, today I am living. I am making memories. I am loving. I am laughing, and today....I feel strong. 

MS Has Got Me Going In Circles

MS Has Got Me Going In Circles

Another day, another symptom, oh...wait, an increase of a symptom.  There is a litany of symptoms that accompany MS.  There is crippling fatigue, vision problems, memory and concentration problems, balance problems, sleeping problems, incontinence problems, numbness and tingling, well you get my drift.  For as many symptoms that are present with MS, there is a drug to assist in either alleviating it, or at least living with it.  On any given day I deal with many or all of these symptoms. Today, it is vertigo.

Dizziness is a common symptom of MS. People with MS may feel off balance or lightheaded. Much less often, we have the sensation that our  surroundings are spinning, this is a condition known as vertigo. Today, I have spinning. I always fear the feeling of dizziness or vertigo.  It makes me nauseous most of the time and unfortunately, after years of dealing with this disease it normally is a precursor to a relapse.  A medication that I am prescribed for vertigo is Atarax.  Atarax can be prescribed in place of Antivert. These drugs reduce the histamine levels in the central nervous system. It is also used to reduce anxiety, but used for neurology patients to reduce the symptoms of vertigo and reduce nausea.  Well...today all the medication that I am taking is not diminishing the nausea or this vertigo.

I, like any other human being have things to do throughout the day. Just because I am no longer able to work, does not mean I sit and watch soap operas all day.  My children are with me throughout the day for school. And no, I do not homeschool them. They attend school online, and their classroom is wherever there is a computer. Vertigo does not care that I have a home to take care of, children to assist in school and a wife and mother to be.  It is, debilitating.  Besides being nauseated, I do not like the feeling of the room spinning.  I hear well intended advice of resting, lying down to combat the vertigo.  This unfortunately does little to alleviate the symptoms of vertigo where literally everything seems to be spinning including the bed you lie in.

As I "rest" I heard an oldie but goodie this morning. The beautiful ballad of "You Got Me Going In Circles", song by the group, Friends of Distinction.  When I heard the song as I was trying to get out of bed and stop my spinning world, I thought, "How appropriate!" MS does many things, robs us of many things, and today...it has me going in circles