Posts Tagged With: multiple sclerosis

Diagnosis Part 4: “9 Times Out of 10”

In October of 2002 I’m guessing I was out of my mind.  I must’ve been.  What was I thinking?  I was working a full time job, I had just finished working as a Production Assistant on a “B” movie that I never heard about again, I was still working out and eating really healthy and then I decided that I needed to get a second job because I just wasn’t making enough money.  Hey, I was 25 and I was invincible right?

Wrong.

It was October in Los Angeles, CA so I’m guessing it was quite hot.  It usually is at that time of year.  I wouldn’t have known because I was too busy running around.  I worked full time at my day job in television which had its own stress.  I walked every day during lunch and worked out at least three times a week.  I ate well and I had lost almost 50 pounds.  My second job consisted of working in a linen store and running around lugging big bed spreads and other bed linens up tall ladders and dealing with customers.  Things were going well…I thought.  Yeah sure it was a bit hard on me but it would be on anybody.  I could do it.

Somewhere along the way as my feet continued to tingle on the bottom, I started feeling that dreaded tingling symptom travel up my left leg.  Then it traveled to my left arm.  Then my left hand.  I denied it.  I ignored it.  It couldn’t be happening.  An echo of a memory of my Primary Care Doctor’s voice rang in my head from months before, “Is the tingling going anywhere else up your leg or in your arm?” and I told him no and asked him why to which he replied, “Oh no reason.  It could just be more serious if it ever happens”…”ever happens”…”ever happens”.  Those two words rang in my head but I pushed them away.

Did you know it’s really hard to push that tingling symptom away when it doesn’t go away?  I waited two weeks until the tingling sensation then jumped from my left hand to my right hand and then I admitted it to me and somehow told Corey about it.  I wanted to be in denial.  I wanted to believe it wasn’t happening.  If I didn’t talk about it it would go away.

So somehow I got over myself and called my Rheumatologist to make an appointment.  I sat in that exam room and I told her about these new symptoms.  She looked at me long and hard and kept her facial expressions very still.  Then she said she wanted to order an MRI for me.  I freaked out.  An MRI?!  BUT it’s just tingling.  That’s all.  MRIs are to check for serious things.  I only had tingling.  That was all I had been told by how many doctors till then?  Somehow I got out the words and I asked her, “Why an MRI?” and she beat around the bush a bit and said, “Well your symptoms could be indicative of many things.  9 times out of 10 it’s not MS but it’s always good to check just in case.”  And she also made some comments about the lack of attention from my previous Neurologists and how she couldn’t believe I hadn’t had an MRI before then but that she’d get it taken care of.

MS????  What did it even stand for?  I didn’t know it stood for multiple sclerosis.  Why would I know that?  It’s not like we learn about all of the diseases out there during our normal lives.  What was that?  It sounded awfully serious.  All I could picture was those poor celebrities we had seen in the limelight who were in wheelchairs, if anything.  Then again, why would it be MS?  I hadn’t been diagnosed with anything else so there was no need to jump to any conclusions now.

So how did she calm me down?  Well she talked to me about her health problems and how she had just had to have an MRI herself and she told me the tricks of where to put my hands and how not to feel too claustrophobic and what to do when I was in the tube, etc.  She tried to show me how she could relate and some of what she said still sticks with me now when I have to have follow-up MRIs as part of my multiple sclerosis healthcare plan.

You know I somehow knew I had MS.  I don’t know how or why but something about it clicked for me.  I spent a lot of time contemplating it and talking about it with Corey while I waited for my HMO to go through the horrible rigamarole that was “necessary” to get me approved to have an MRI.  I had to wait at least a few weeks to be able to schedule my MRI let alone have one.

And you know all of this didn’t stop me from keeping up with my crazy full schedule.  To me I had no reason to slow down and stop.  Not yet anyway…

 

The next Blog will be about my 1st MRI experience.  It was a truly traumatizing and life changing experience for me that deserves it’s own Blog entry.

 

Thank you for reading my story.  It is so very hard to write but so necessary to express and share.

Categories: Diagnosis | Tags: , , , , , , , , , , , , , | 2 Comments

Not a Happy Nahleen This Morning

I am so not a happy Nahleen this morning. I feel awful. I tried a new blood pressure medication yesterday–ONLY ONE PILL–I will NOT be taking that again.

I feel weak, depleted, achy, stiff, my body temperatures are going hot and cold, and I really feel like I’m getting the life sucked out of me. I’m trudging through muck and I feel like my hands are stuck to a stringy glue-like substance and I’m starting to lose touch with me.

I’m so frustrated and powerless. I had plans for a Physical Therapy appointment and I also had a commitment to fulfill for tonight. Both of these plans will now have to be cancelled for today…because of my body’s reaction to ONE PILL of a line of blood pressure medications that I previously struggled with six years ago. So I got to wake up off and on all night with my body feeling so “weird” and was given a chance to reminisce about those horrible days of trying crappy medications to take care of an issue that had nothing to do with my chronic illnesses. I think what was happening back then was that my multiple sclerosis and lupus (didn’t know I had lupus at the time) were feeling very overwhelmed by any new medication because I was taking a very strong injectable medication for my MS and they were especially unhappy with BP medications so my body went into purge mode. I remember all too well that I was starting to feel lifeless, like the medications were sucking the life out of me.

I have been currently taking a blood pressure medication that has actually worked out but my doctor insisted on raising the dosage by adding another medication and instantly my mind went into RED ALERT. I figured that I’d be okay this time because both my MS and lupus are being treated and I’m no longer on the injectable medication. WRONG. Turns out my body rejects diuretics altogether. No more. All done. I tried it for one day. My body hates it, doesn’t want it and it is all done.

I agree. I hate it, I don’t want it and I’m all done with it too. I will be calling my doctor today to let him know I’m not taking it. It has been a long time since I woke up feeling this physically crappy. Turns out I like my body much more without this new poison. Hey, at least it helps me have perspective that I don’t need to feel this crappy (and I haven’t FOR A LONG TIME NOW I GUESS) and that I want my previous body back–you know, the one from over 24 hours ago that hadn’t taken this stupid medication yet.

So today I will be resting, drinking lots of water, hoping my body can rebuild and repair itself and will do my best to have patience. It’s time to be gentle with me and to remember that I’m not the same person I was mentally or physically six years ago and I can get through this one thing at a time.

Categories: Uncategorized | Tags: , , , , , , , , | 2 Comments

Motivation: GRATITUDE

This morning I am grateful.  It’s such a relief to feel grateful.  It would be so nice to feel it all the time.

I’m grateful to be able to get up and face the day.  I’m grateful for so much love in my life from my husband, my kitty, my family, my friends, a huge support system, people in general and with life.  I’m grateful to have a roof over my head, an awesome car, for food to eat, water to drink, air to breathe–that I CAN breathe.  Then there’s my health: the progress of recovery, to take it one day at a time, really awesome proactive doctors, to be able to walk, to see, to move, to even function at all.  I have an abundance to be grateful for.  The list is endless.

What started this new round of gratitude?  I believe it was asking for more help yesterday.

Being on Long Term Disability has required an enormous mental surrender.  I have had to let go of what I thought I needed to have to survive: a job, a consistent paycheck, at least 40 hours of knowing exactly what I’m doing in a week.  It has been almost two years without that routine and somehow it’s all worked out.  Somehow Corey, Cleo Kitty and I have been taken care of.

BUT it takes A LOT of work.  I not only have to spend 24 hours a day 7 days a week taking care of me with self care but there is a mega amount of medical business to attend to too such as: medical insurance red tape, my plethora of doctors, a long list of medications and regimens, and dealing with Social Security Long Term Disability along with the Private Long Term Disability that is provided as part of the Benefits from my old employer.

YES I am truly grateful to have any access to Long Term Disability and to be taken care of AT ALL.  HOWEVER it is SO DIFFICULT to even admit I am disabled, to then ADMIT I can’t work right now, and then ASK FOR HELP, for financial assistance so that I can be a contributing member of society.  And not only is it hard for me to surrender to that need for help, but then they can make it SO HARD to even get the help I need.  This is NOT an easy process.

It is worth it because I DESERVE TO FEEL BETTER.  I DESERVE TO GET BETTER.

With that idea in mind it was so REFRESHING to call the Director of Benefits (yes, I have her direct contact number) of my old employer and let her know about the messy situation I’m involved in between both Long Term Disability Entities.  Not only did she LISTEN but she AGREED with me that that sounds like a mess and she seemed genuinely surprised this was happening.  I ASKED HER TO HELP ME and you know what?  She’s going to try to find out what’s going on and to do just that, help me.  She was nice and she was sincere.  She backed me up all the way.  It doesn’t mean she’s going to be able to change anything but it is just that much more empowering to feel her support and for that I am grateful.

GRATEFUL.

What a wonderful word.  What a inspiring idea.

Categories: Motivation | Tags: , , , , , , , , , , | Leave a comment

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