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

 

MS Awareness

I love that in the month of March we have an awareness week for bringing attention to multiple sclerosis and our efforts to find a cure.  This past week was actually MS Awareness Week.  I appreciate and I am quite sure that all of us who live with, and on some days, suffer from multiple sclerosis appreciate the week, the month, the walking, the biking, the Walleye fishing  events, the banquets, the teleconferences, the meetings etc.  But many of us who have multiple sclerosis know that our awareness pertaining to this disease is not only March, but, January, February, April, May, June, July, August, September, October, November, December. 

Our journey with MS just does not stop and start in March.  Our journey is daily.  Daily we check our physical and our mental health.  Before I get out of bed, I give thanks for a new day and pray that this day will be a good day.  Daily I wake up taking a mental check to see how my body is feeling on any given day.   I have to make sure that my limbs are in working order, that my vision problems are at a minimum and track my body aches and pains to see if they are new or something from before. This is my life and I am pretty sure that many other people with MS feel the same way.

 One thing that I do like about MS Awareness is there is a flurry of activity and interest in the disease. This is the time people remember that, hey, Carla Has MS.  I get emails and Facebook messages regarding how I am feeling, what medications I am on and exactly what is MS and the big question...Is it contagious? I no longer get upset with this question because people just do not understand this illness, even family members.  They do not understand my limitations, the noncontagiousness of the disease etc. I come from a family full of Type A personalities who believe that if you don't move it you lose it. And yes, with MS you have to keep mobile to combat against spasticity.   I too understand this notion, but...there are limits to what I can now do.  I cannot go constantly with no breaks. Those days are long gone. And I am okay with that. This is my life now, there is nothing that I can do about it and its okay.  I know that my family and I deal with the ramifications of MS daily. There are good days and then there are series of bad days. This is my life. This is my awareness. My MS Awareness is not just in the month of March, or the week of awareness, but daily.  That is my awareness, and I am okay with that.  

Today I continue to be aware, as is my family and friends.  But, thanks for the MS Awareness week and month, but please don't forget about us when it is not March. We are still here. Our MS Awareness is today, tomorrow and forever more. 

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What Is That I'm Seeing!?!

What Is That I'm Seeing!?!

I have always had some slight issues with my eyes. I have an astigmatism.  I am nearsighted, which means that I have problems and need glasses or corrective contacts (that I don't have the courage to touch my eye so I don't wear them) to be able to see distances.  The problem is that with advanced multiple sclerosis is that it wrecks havoc on your eyesight.  I am now wearing glasses just to see our big screen TV because without them everybody is blurry. Such a shame.

I have noticed that when I was off of Tysabri, back on Rebif, before I was put back on Tysabri (I had reached that grey area of Tysabri treatment of being on it for 2 years plus and my neurologist a little concerned because the study timelines stopped at 2 years and he was concerned regarding PML), I at this time started having not only debilitating pain, but problems with my eyes, especially after having a relapse. I have discovered that I have developed what my opthamalogist has called iritis. Iritis is an inflammation in the eye which causes eye pain, especially when exposed to bright light.  It includes blurred vision and redness in the eye, especially around the iris.

My last relapse, this past September, resulted in another all day trip to ER, and followed a long trip to the opthamalogist to confirm, yet again, that I had irisitis. I have noticed that with my advancing MS that my eyes are in fact, getting weaker and I am having more problems.  People with MS have to be diligent with keeping their eyesight and vision healthy.  In fact, vision problems are usually one of the first symptoms of relapsing MS, which is usually temporary.  But, persons with MS will find out that as your disease progresses, problems with your vision will persist i.e. double or blurred vision, eye pain, and at times, spots or floaters in the eye.

So, what it is that I am seeing is now...a floater.  Since I have a MS diagnosis, I will be having yet another eye exam, and a peripheral eye exam to make sure that there is not something else that is lurking behind the annoying black dot that swims in in front of my pupil.  Although I am really over seeing doctors, sometime, seemingly daily. I know that health encompasses many different faculties.  Regular physicals and eye exams are needed, especially for MS patients due to the side effects of the many medications that we take.  Dealing with MS is chore enough, but, it will be more of a chore is something else in your health fails i.e. vision.  

So, I may complain. I may hate going to doctor after doctor. But, I have a choice. I could refuse all treatment and let the proverbial chips fall where they may, or try to maintain my current level of health and catch something early before it becomes an issue.  The choice, really, has already been made for me.  I look at my two children and know that I want to continue being able to be a "seeing" mom.  I take physicals to know that my cholesterol is high due to the many, many, many relapses treated with steroids and that is an issue to which I am addressing through a change to a low fat, almost vegetarian diet. (Don't hate me because I still eat meat...I'm trying). And regular exercise, definitely on the days when I am having a good day. And, I am taking supplements for added health i.e. Vitamin B12, Fish Oil, Vitamin D, Multvitamins, Kelp, Vitamin K, Vitamin C, Vitamin E, Evening Primrose, and whatever else my mother, after watching Dr. Oz. brings over.  

Look, I know dealing seemingly almost daily with doctors and nurses can be a bit much.  But in the long run, it will all work out.  I am determined that I will be preventative and proactive in my health because I definitely want to see more birthdays. And not just more birthdays, healthy birthdays.  So, I am closing now, with my floater in my eye, I will make my appointment for yet more eye exams and I will grin and bear it because...seeing....is believing.
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You Look Like The Picture Of Health!

You Look Like The Picture Of 

Health

I get up daily, thanking God for another day. And most of all, thanking him for the use of my limbs.  As a child I remember that an old mother of the church used to say this prayer when she led devotion.  I can almost hear her thanking God for waking us all up in our right minds, and the use of our limbs.  This mother of the church, with age and dementia no longer has either of these faculties.  But, I believe in mercy and faith, so I now say this prayer.

MS is such an insidious disease.  So insidious, and covert.  It is such a hidden disease that many times people see me, speak to me, ask me to do things, but when I tell them my limitations, my affliction the one phrase that I hear is, "But, you look like the picture of health."  I guess I should think of this as a compliment, but what am I supposed to look like.  I look like myself. Carla. I am up everday, shower, dress, do my hair, put on some makeup, to yes...sit in my home while my children do online schooling. I do this everyday, no matter what.  No matter the good days, no matter the string of bad days.  My father told me to always get up, fix yourself up. That's half the battle and maybe, just maybe, you'll feel better. Some days this is true, most days...it is not. 

I know people look at me and don't see my illness. And that's okay.  I don't want to be a burden to friends and not even my family.  My children, and my mother ask me daily how I am feeling. My answer is always the same.  My answer is, "I'm okay!"  I pray that one of these days I will mean it. Until that day, that is my story and I'm sticking with it.  So, no, I keep the daily ailments to myself.  I log them into my phone to remind me to discuss with my neurologist because MS is affecting my mind.  I don't tell anyone about the crippling fatigue, the numb feet, the constant MS hugs that I feel, the insistent itching at night that keeps me awake, or the deep bone itch that cannot be scratched.  I don't let them know when I run into a wall because of balance problems, I don't alert them that at times my attention span is lacking, my concentration is a problem and I am afraid of the cognitive issues of the disease.  No, I don't alert them to the constant anxiety I feel, the depression that hangs around like a old friend. No, I don't alert people to the feeling of heavy weights constantly on my legs. No, I will not tell you about my facial and hand twitching. No, all this is just for...me.

No, when people see me, they see Carla. Carla at whatever her best is that day. Carla with a smile, and easy laugh, and sitting in a chair to constantly rest her legs.  So, thank you for telling me that I look like the picture of health.  No, it's not for you to know how things really are and if I told you, would you really care? So, I will take your statement as just that, a statement and I will smile, say thank you and pray that I have the energy to get up from the chair, walk to my car and head home.

Hi, I am Carla. I have advanced stages of multiple sclerosis and people say I look like the picture of health.  But...looks can be deceiving.


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Sometimes You Just Have To Go With Your Gut

Sometimes You Just Have To Go With Your 

Gut

I have to admit that I go to the doctors'...a lot.  I have new insurance so it seems like instead of reading my chart, I get tested and retested and retested then to find out that things are normal. Among the many appointments for my MS, there are other health issues for women over 40, like taking an annual mammograms.

To be truthfully honest, I have dense breast and coagulated milk ducts, which always show up on a mammogram.  This ofcourse is well documented by my previous insurance company and my previous doctors.  All this being said, after my yearly mammogram the fun began, yet again.  Maybe because none of my doctors have read my previous medical history. 

After my annual, I was called back to get more scans. Then after the scans I had to have an ultrasound.  This was quite unnerving as the technician is telling me as I have my ultrasound that if things don't look quite right I would be immediately ushered down the hall to have a biopsy.  I have always been an opponent for prayer and starting praying that this was just unacceptable. 

Needless to say, after the ultrasound I was allowed to go home and later on that day I received my results stating that  I have present in my breast a fibroadenoma cluster, or could possibly represent an
intraductal papilloma.Now, both of these could be benign and I claim that they are and I was told to come back next year for my regularly scheduled mammogram.

This would have been great had I not called my primary and told her that in that particular breast I had some twinges of pain occasionally. I was scheduled immediately for another breast exam. The nurse told me that this was necessary to make sure that there were no lumps, inflammation or dimpling of the skin and no nipple discharge.  I ofcourse raced into the office, ofcourse, exhausted as I usually am to get yet another breast exam.  

On this breast exam, my breast looked normal, no dimpling of the skin, no inflammation, no redness, no lumps, and no discharge.  Yet, if my doctor had read my previous history, all of this would have been understood that I have wacky breast.  But, my doctor, and yes I know she is playing it safe, signed my up to go on yet another appointment to see a breast surgeon to see what she has to say.  Annnnddd...here we go again.

Now, I don't want you to think that I am casual about my overall health, and casual about the risk of African American women having breast cancer. But sometimes, you have to think for yourself on whether you want to go through unnecessary testing, poking and prodding.  So, after discussing this with my husband, and mother, I decided to thank my primary for the referral to the breast surgeon, ask her to keep the referral active just in case my breast changes and come back next year for my annual mammogram.

In the meantime, I have been focusing on my change of lifestyle to combat MS symptoms and now I will continue to change my lifestyle to combat possible cancer.  I am overweight. Well, according to my chart I was obese and now I am overweight.  My BMI needs to continue to go down.  With my overall MS diet, I will continue to go lean to become lean.  I know that being overweight is a health risk factor for breast cancer, so I am working on lowering my numbers.  My diet now is full of fresh or frozen produce,  green tea, olive oil, fish oil supplements and exercise.  I am determined by next years mammogram I will be of healthy weight, health HDL and LDL numbers and my mammogram will be normal.  As a patient, I do take my health serious, but I don't want medications and procedures pushed on me when taking control of my lifestyle should be the first preventative step.    So, I am going with my gut and saying I am procedured out and I will see you again for this issue, next January. 

Home Bound But Heart Is Open

Home Bound But Heart Is Open

There is a saying about the beginning of things, like Spring can come roaring in like a lion and leaving out like a lamb. But this saying comes to mind when life and life events happen. This saying is the only thing that comes to mind when I think of the beginning of 2013.  With the personal issues, stressors and passings of loved ones and friends, I am praying that  2013 will go out like a lamb because it is starting with a roar.  

My husband recently lost a classmate, and this got me to thinking.  To see a beautiful, young woman lose her life at 42 years is heartbreaking.  I looked at what all she accomplished, all who she had touched and all that she had left behind.  But, I looked at her and was not only saddened by the loss but realizing that one cannot live isolated in a box.  I call this my Oprah moment, or my "Aha"  moment that life is about building and continuing friendships, reaching out to others, and just being there for others.  So, though I NEVER make New Years Resolutions, my husband and I took stock in our lives and realized that we have to do better, be better and be present in other lives. 

I have now faced the fact that I am essentially home bound.  I am not saying this for sympathy, I am just stating a fact.  My home bound is in the sense that I go some places, i.e. some stores, library with my kids, church, but all these activities take place during the day.  I want to reinforce my circle of people, of friends, but it comes with a catch.  My catch is that by the end of the day, by evening my MS exhaustion is at a peak.  Now, all I have to do is figure out how to expand my circle, strengthen my relationships when EVERYTHING is always scheduled for later on the evenings i.e. 7PM and later.  

So, though I know that I will not be able to make many, or any of these functions, the solution is to open my home.  I may be home bound, but my heart is open to increasing my circle.  I feel like I have been in a fog for so long and it is finally lifting.  I hope that my friends reading this will know that they will soon be getting phone calls.  Please pick up and please come by and see me.  I may be essentially home bound, but my heart is open. 

I'm Going, I'm Going, I'm Going...I Can't...I'm So Tired!

I'm Going, I'm Going, I'm Going...I Can't...

I'm So Tired!

One thing that I hate about multiple sclerosis is the unpredictability of it all.  I hate not being able to schedule fun activities, or plan activities and not being able to follow through with the plans due to my illness.  MS has robbed me of this ability to do this.  MS has robbed and is robbing me of expanding my social network and having some much needed female, friend companionship.  

I cannot tell you how much I hate MS.  There is a wonderful sisterhood group that I am a part of.  It just started in November.  There was no group this past December, and the next scheduled one is in January.  I was so hoping to be able to go this Friday, January 18.  I had great hopes and expectations. But, to no avail, I woke up today with achy feet, dizziness and crippling fatigue.   And today, I cried. I cried because I had made plans. I cried because I had expectations. I cried because I was looking forward to seeing my sisters, my friends,  my sorors.  I cried because I hate disappointing not only myself, but others. I cried for the loss of really living, of really experiencing things or planning things.  I cry because MS is a real son of a bitch.  

So, as I close this out, I am a little down, a little weepy, a lot disappointed. I want my sisters in my monthly group to know that I love them, I cherish them, I miss them and I need them.  The mind is willing, but the body is weak.  So, if you know someone who has MS, please don't think because the person hasn't been to your functions, or doesn't have the energy to talk forever on the phone, or at times seems isolated to you or to other friends.  Please know that that person is alway there.  That person is wanting, wishing and desiring to be the life of the party, the belle of the ball, but, MS won't let us be.  Please don't forget about us.  Please know we are still here.  But know, that by 8pm, we are in bed.  

Adieu

Anxiety!? Panic Attack!?

When Normal Isn't Normal

Anxiety is something that I feel is rarely discussed when dealing with symptoms of multiple sclerosis.  I found this out when I switched doctors due to a new insurance carrier and they refused to give me my very low dose of lorazepam that I had been using on an as needed basis.  My new doctor went into the whole lecture that the meds were addictive and that they wanted patients off of benzos.  Well, that is all well and good...that is until you are overcome with anxiety which increases to a full blown panic attack.

This panic attack and ensuing calls by my hubby to my new primary doctor and also a call to my primary doctor from my previous neurologist convinced her that due to MS, these medications were to be taken on an as needed basis.  This is why I implore doctors to review your new patients medical record and do not change or refuse to refill medications without speaking to the patient and to previous doctors.  Also, I implore that primary doctors need to be more familiar regarding the added scripts needed for people with multiple sclerosis.  To the average lay person it may seem superfulous, but, it was given for a reason.

There are many reasons for anxiety with MS. MS is a recurring disease.  It can go into remission or you can have relapses frequently.  For me, MS is proving to be a progressive disease that has steadily reduced my abilities.  And for me, the disease predictability is low.  I have great things that I want to do and unfortunately cannot plan to do based on the unpredictability of this disease. The unpredictablity of this disease means on any day, at any moment, MS can rear it's ugly head. And, unfortunately does. This unpredictability of MS is a cause for significant anxiety.  For many  MS patients their MS is predictable, in my situation, my MS is VERY unpredictable, hence this is a significant cause of my anxiety.

Another reason for ongoing anxiety is the presence of a new symptom, or coming down with an illness. The thought of being sick with another illness in which I know will exacerbate any of my symptoms really increases my levels of anxiety. Due to dealing with my anxiety, yes I still at times will take a pill, but with this new year I am focusing more on more positive, natural ways of dealing with my anxiety.  I am using yoga, and starting meditation. Though I don't think that meditation should be as hard as I am making it.  I will just wait for my Deepak Chopra meditation tapes to be guided through meditation. 

 

Here are some ways that I have found that are really helpful in dealing with anxiety.

• Chamomile tea
• Deepak Chopra and his 21-Day Meditation Challenge.  https://www.chopracentermeditation.com/Bestsellers/LandingPage.aspx?BookId=172
• Yoga for relaxation and stress release. Try these Yoga DVDs'.   This is one that I have been using: http://www.collagevideo.com/workout-
•  If you need to talk to someone, you can go to http://www.liveperson.com/?utm_source=AdWords&utm_medium=CPC&utm_term=liveperson&utm_content=7062007458&utm_campaign=AdGroup&Network=Search&SiteTarget=&keywordid=102144&_kk=3f3b3ba2-9940-4eee-871b-3053f7270e80&_kt=7062007458&gclid=CKKTh9zx27QCFQioPAodbzsASg.    This is a great site with great professionals who do talk therapy over the phone, through email, or by Skype.
• If all else fails, please contact your neurologist regarding your anxiety and remember that you are not alone in this fight.