Posts Tagged With: Rheumatologist

Today Is World Lupus Awareness Day!

Posted on May 10, 2013 by Nahleen

“I can’t diagnose you with Lupus now but I can tell you that you have enough of the list of Clinical items we look at to diagnose you with it eventually that it may come up for you in the future. I’m so so sorry I can’t diagnose you now. But please PLEASE make sure to keep it somewhere in the back of your mind for the future when things are at your hardest because this will likely come up in the FUTURE. I know you don’t want to hear that but it will be important to remember.”–That’s what my first Rheumatologist drilled into my head 11 years ago in 20012, as I was on the journey to find out what was wrong with me in the first place. I have no doubt she was an Angel sent to help me find out the VERY HARD way that I had Multiple Sclerosis.

8 years later I can tell you that I believe she was also sent to help me FINALLY be diagnosed with Lupus. That was in June 2010.

8 YEARS LATER.

They still didn’t know enough about Lupus even 11 years ago for her to diagnose me. I can remember her apologizing profusely that she wouldn’t be able to give me any answers about my very uncomfortable symptoms that were in her Specialty–such as me having Lupus and me thinking at the time that that was quite alright. I was 26 years old at the time. I didn’t really need to hear about having Lupus. Really. MS was enough.

I didn’t really need to hear about having MS either but I did. That December of 2002 I was diagnosed with MS because I had FINALLY had an MRI and there were lesions on my brain to show that I had MS. There’s a lot more to this story but these days looking back on the traumatic Hell I went through back then, I’m pretty darn sure I had both MS and lupus and that they were flaring up at the same time but MS was the disease that had physical evidence to show people. You could SEE it. There was SOMETHING to prove. MS is also a VERY confusing disease to diagnose BUT at least there are lesions on the brain.

Lupus doesn’t have that. Lupus is even more invisible. It’s the Great Imitator. It’s the Great Mimmicker. There’s pain, there’s fatigue, there’s a brain fog and they all show up in MS–and now I’m learning they are different BUT wow they overlap like crazy. Lupus also affects organs. It affects the body tissue. It affects the mouth and can make it crazy dry along with eyes. It can cause rashes. It is very sensitive in the sun. HOWEVER, it seems like if the body doesn’t CRASH in some way than it’s hard to figure out. All of my symptoms were blamed on the MS. Even more interesting is that I think I’ve had something like Lupus since I was a kid. Imagine treating that as a kid. Yeah I wouldn’t have liked it but it would’ve explained A LOT and I have a feeling I’d be feeling lots better right now.

For me the signs that “something else” was going on in 2010 were that my thyroid acted up, then my eyes got really weird, THEN my liver nearly failed on me and the levels were toxic. That caused me to basically vomit up my ENTIRE BODY. That is the only way to explain it. I don’t vomit. This may be TMI for you but it’s the truth and I’m here to tell you the truth. I don’t vomit. I get extremely nauseous. Vomiting is strange for me. Sooooo, that really should’ve been the big indicator something was off. But no, I thought it was an awful stomach bug. How did I know the difference? Looking back, I was so out of it there’s NO WAY I would’ve known left from right at that point.

So what happened?

MY BODY HIT A WALL and my liver was nearly in failure. Thank goodness I’m so sensitive and my body gave me enough warnings. Thank goodness I listened. Thank goodness I am pushy and stubborn.

In June of 2010 I was severely ill and doing that “vomiting” I talked about earlier. It took 2 MORE MONTHS to be diagnosed with Lupus.

2 MORE MONTHS.

I WAS DIAGNOSED WITH LUPUS IN AUGUST 2010.

THAT IS TOO LONG. What if something else had gone wrong? What if I wasn’t being seen by any medical doctors at the time and tried to tough it out? What if my body shut down on me? These are the kinds of things that run through my brain. I can’t help it.

The most prominent question is this:

WHAT IF THAT ANGEL OF A RHEUMATOLOGIST IN 2002 HAD NOT DRILLED IT SO MUCH INTO MY BRAIN THAT ONE DAY I COULD HAVE LUPUS?! THAT ONE DAY THINGS MIGHT GET AWFUL AND I MIGHT BE FEELING SO TERRIBLE AND NO ONE, AND I MEAN NO ONE, COULD DIAGNOSE ME WITH ANYTHING TO HELP ME FEEL BETTER? WHAT IF I HAD CONTINUED ALONG THINKING I ONLY HAD MS? WHAT IF I HAD NOT SENT MYSELF TO A RHEUMATOLOGIST BECAUSE I WAS AT THE END OF MY ROPE?!

IT SHOULDN’T BE THIS WAY. LUPUS IS A VERY SERIOUS AND DISRUPTIVE DISEASE AND I’M STILL RECOVERING. It was a very special Doctor who helped me 11 years ago when I needed it the most. Without her I wouldn’t have EVEN THOUGHT to bring up Lupus. It’s not a black and white disease. It is all in the greys. And let me tell you, it gets REALLY COMPLICATED when Multiple Sclerosis comes into play.

REALLY COMPLICATED.

And this is why I spread awareness and tell my truth about what I have been through. This is why I believe so much in spreading the word about what I’ve gone through and am so grateful that there are organizations who have established Days like World Lupus Awareness Day. PLEASE. If you aren’t feeling well and you don’t know what’s wrong, keep asking. You know your body. You deserve answers and there is going to be someone out there who can help you. They may not have all the answers or tell you what you want to hear (boy is that the TRUTH) but they can help lead you in the right direction.

AND ONE LAST THING: THANK YOU TO THAT SPECIAL DOCTOR WHO WALKED ME THROUGH THE HARDEST TIME OF MY LIFE 11 YEARS AGO. I AM FOREVER GRATEFUL FOR YOU. YOU GOT ME ANSWERS ABOUT MS AND YOU GOT ME ANSWERS ABOUT LUPUS EVEN THOUGH I HAVEN’T SEEN YOU FOR 11 YEARS.

So please if you are so inclined, spread the word about Lupus. Spread the word about all of these crazy autoimmune diseases. They are all so similar and there is so much more to learn. And please, take care of yourself and listen to your body. You deserve it.

If you have any questions or comments let me know. Let’s talk about this. Let’s spread awareness. No more hiding. The more we know the better off we’ll all be.

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I can LIVE. I can FUNCTION. I can DO.

Posted on November 5, 2012 by Nahleen

A week ago today I was in the ER TRYING to get some answers about why I felt digestively HORRIBLE!

TODAY: I feel sooooooo much better!

AMAZING!  I am truly grateful.  It means so much to me to be feeling better.  Sure, I keep waiting for the other shoe to drop (you know, that infamous shoe that is always hovering and just waiting with baited breath to drop) but it hasn’t happened yet.

I definitely still have recovering to do BUT I can eat.  I can LIVE.  I can FUNCTION.  I can DO.

ACTUALLY:

Despite the absolutely miserable week I had last week until about Friday, I have received 3 VERY GOOD PIECES OF HEALTH NEWS that I feel I MUST pass on to you.

1. I heard from my Rheumatologist that all of my bloodwork came back really great and stable and that she firmly believes my lupus has gone into REMISSION.  It doesn’t mean I won’t have symptoms BUT it does mean that all of my organs are healthy and I am stable.  There is definitely no sign of a FLARE of any kind.  I’ll take it for as long as I can!

2. I had an appointment with my MS Specialist Neurologist today and he told me he felt like my MS was under control and that despite all of the crap I had been through in the past week (or even in the past 2 months digestively overall) that I am doing extremely well and my physical well being according to an MS standpoint is BETTER than it was in July!  He’s very happy with my progress.  Now this is with having a VERY early appointment this morning, hardly having time to shower, and rushing to eat (and thank goodness I could even do any of that–not sure how I would’ve gotten there had I felt any worse but I digress and think about things I don’t need to), and being half asleep the whole time.  WOW!  It usually takes me about 4 hours every day to really feel like maybe I can get through a day.  It’s just the way it is.

3. And now it seems that getting a 2nd opinion from a different Gastroenterologist paid off for me.  It’s all about new input and different experiences.  My 1st Gastroenterologist has been really integral in getting my health where it was until about a few months ago.  I do believe it’s time for a change.  This new guy might just be my choice.  He saw things a bit differently, approached it on a different path and convinced me to JUST TRY (he really emphasized that because I was so against more medications) this new medication treatment and see what I thought.  If it didn’t work, then he’d try something else.  Come to find out, my Primary Care Physician’s newer Physician Assistant knew of this specific specialist and was pleased to hear I was seeing him.  She said her experience is that he is VERY GOOD and an expert with what I’m dealing with.  Well OK then.  Guess it was the right choice.

4. BONUS: I just had to add this because my goodness, I just brought up all these titles of medical professionals in 3 paragraphs.  I think I need to get some credit for being able to come up with their names when my head is so tired.  Phew!  Rheumatologist (and how on earth would anyone know how to spell this if they hadn’t seen it written out tons of times?), MS Specialist Neurologist (so specific), Gastroenterologist (took me forever to figure out there was an “e” there and not an “i”–not sure why there isn’t an “i” but anyway), Primary Care Physician, Physician Assistant…WHOA!  I AM TRULY GRATEFUL TO HAVE ACCESS TO SUCH TALENTED PROFESSIONALS IN THEIR FIELDS who are so proactive with my health and were completely available for me in just 1 week!  In fact, if you count my first Gastroenterologist, he was also available to me, I just didn’t agree with what he was thinking about my health situation at the time…

So all very very good things are finally happening.  It is about time.  I’m going to cherish them as long as I can because as we all know, everything can change in an instant.  Now about cures…  You know, I stopped expecting cures for anything I’m going through a long time ago.  I’m really just looking for relief and to feel better with a much more improved quality of life.  Waiting for a cure would make me STOP living and I am doing everything I can to LIVE.

IT IS ONE HARD JOB TO LIVE BUT I’M DETERMINED TO DO IT!!

P.S.  I’ve been quite reflective lately about all I have been through.  I think a lot of it has to do with my 10 year MS diagnosis Anniversary coming up.  10 YEARS…I think that speaks for itself.  I feel a very personal Blog Post coming in the very near future.  Stay tuned.  Right now it’s all still processing.  It will be direct from my heart.

LOVE TO ALL!!!

*And special thoughts go out to those affected by Crazy Storm Sandy.  Wishing for peace and relief for all of you!

 

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STUPID INFECTIONS!

Posted on October 23, 2012 by Nahleen

TODAY I’M FRUSTRATED!

I have had enough of feeling sick!  I’m so done!  Too bad my body isn’t!

Yesterday evening my digestive issues started up AGAIN!  They had calmed down and things were ALMOST good for about 4 days…THEN BOOM!  I’m doubled over and having stomach cramps really bad AGAIN.  AGAIN!  To be honest, I didn’t think I was out of the woods yet with this small intestine bacterial infection.  My doctor had mentioned it would take awhile and that I’d probably continue to have some bad waves.  But he had told me to take the antibiotics for as long as needed so that I could go through the whole process of feeling really sick and nauseated and wait it out to the other side.  Then he said to wait a couple of days after I started feeling good and then I could stop taking it…

WELL I WAITED FOUR DAYS…just to be SURE.  That’s what I get for taking care of me right?  I mean, the 4th day started and I really thought I was doing well yesterday.  BUT THEN 6pm HIT me like a bomb and I haven’t been feeling well since.  I thought perhaps it had passed by this morning…BUT SLOWLY the stomach cramps started again and I started feeling bloated and nauseous…

UGH!!!!!!!!  GRRRRR!!!!!  I NEED TO FIND MY HULK HANDS AND PUNCH WALLS!

(Disclaimer: No hands will be punching walls on their own…must have lots of cushion…)

So I muttered and grumbled about it this morning and couldn’t help but be angry.  I’M TRYING TO LIVE MY LIFE HERE!  Trying to get back into the swing of things AGAIN!  The stomach discomfort can be so paralyzing and disabling I can hardly do ANYTHING when it happens and I’m usually a mess after the wave passes–IF it passes.

Soooooo, I called the doctor like a good proactive patient even though I resented it the entire time.  He called me back a few hours later and told me that what I’m going through what sounds like a classic small intestine bacterial infection reaction to the treatment itself.  That the good news is that it sounds like the MAIN infection has been killed BUT that there are pockets in the intestines where the bacteria can hide and that they’ve come out and are free since the first layer of crud is gone and the antibiotics are now KILLING these furious LITTLE CHOMPERS and are not letting them hide and sneak around anymore!  At first he was going to have me keep taking the antibiotics twice a day till this passed but I was honest and I told him this was day 18 and I was really irritated and my body was quite uncomfortable from the forced and prolonged detox.  He listened to that, seemed to change his mind and said that I should take the antibiotic twice a day for the next 2 days so that I will have taken it for 20 days in a row with this round.  The next step will be to start a MAINTENANCE regimen and only take it once a day twice a week on Monday and Thursday for a month or two to make sure there’s no more new growth for awhile…  I’m pretty sure I’ve done this before and it has worked out really well…HOWEVER it also means I’m going to continue to have these really bad waves while feeling “almost good” the other times…Sooooo, there will continue to be NO status quo JUST YET–if that’s EVEN possible for me.  Once the maintenance round is done then I start on Probiotics to help maintain even MORE digestive health.

Well OK then.  FINE.  So glad that the antibiotic is still killing and working as necessary BUT what about me?  It affects ME.  It makes me have to STOP everything.  It makes me feel AWFUL as it’s all happening.  I’m the one who has to PAY FOR IT.

SOOOOOOO FRUSTRATING….

I know this will also pass.  I know that being so committed and determined to do what I can to kill this infection is what will help the most in the long run.  IT DOESN’T MEAN IT WILL BE EASY!!!

STUPID INFECTIONS!

*******

I’m also trying to remember to keep in mind that I also saw my Rheumatologist today for a follow-up regarding my lupus.  The GREAT NEWS is that she thinks the lupus has really calmed down quite a bit and that more and more of the disease seems to have gone into a bit of remission.  Sure I’m having some symptoms that are flaring up but overall I’m doing a lot better…

YES THAT ROCKS!!!!

And it seems like my MS has also calmed down quite a bit so that’s also AWESOME!

NOW ABOUT THIS INFECTION–GO AWAY!  I’M BUSY TRYING TO LIVE MY LIFE!

 

 

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I GOT OUT!

Posted on October 2, 2012 by Nahleen

I did I did! I got out, had lunch with a friend and I didn’t have to cancel! Yippee!!!!

Yes it was 100 degrees today and yes my MS was still upset with crazy heat fatigue, BUT other symptoms seemed to have calmed down. I was able to get up earlier and stay up, pull myself together, get out into the hot car and hot sun and make it to lunch!

The lunch was yummy at BJ’s Restaurant and Brewery (and the tables were freezing–never had that before), the conversation was fun and the friend was so easy to talk to and be with (as usual–you know who you are wink wink). It was lovely! We ate from the lunch specials and got to save some money, we dealt with an overeager and very bored waitress (who hounded us about what we were going to order and did we have any questions and and and and…she was really like that), I had a refreshing berry limeade drink thingie and then we walked around the mall right next to the restaurant. The mall was quiet and relaxed, we overwhelmed our noses with fragrant fall candles at Bath and Body Works (some crappy–I swear a whole table was set up just with crappy ones….some wonderful–I swear a whole table was set up with wonderfully accurate fragrances of fall like “leaves”), looked at shiny things, giggled about gummy bear shaped earrings (totally cute) and about how the ’80s are so back in style with fashion accessories (can you say Madonna gloves from “Like a Virgin”?) and gabbed, gabbed and gabbed.

Then sadly she had to leave. I’m not sure where the time went. I stayed at the mall and walked around some more, poking, looking and trying oh so hard not to buy anything. I was a good girl. I didn’t buy one item. It was hard. Some of the sales were really great. Then again, it was so hot I doubt I’d be able to be comfortable trying on clothes anyway so it worked out. Before I left, I sat for a bit and just took in the ambiance. I haven’t had that much fun in a mall in a long time.

It was so nice to get out, see my friend and to be able to do ANYTHING in this dang heat. Sure, I’ll need to recover now but my mind/soul are happier. And my Neurologist would be thrilled to find out that I had some fun. His orders a couple of months ago were to have more fun. OK. I did.

And now I need to make my Rheumatologist happy and get some rest.

My body will be happy with that idea too.

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You’ve Come A LONG Way

Posted on July 30, 2012 by Nahleen

Helloooooo!!!!

First of all before I forget, I want to welcome all of my new followers!  Thank you thank you thank you for joining me on this crazy journey of life with chronic illness.  It means so much!

Hope you all are starting your week off alright.  I got to start my Monday first thing with a “Fasting” appointment with my Primary Care Physician’s Physician Assistant this morning.  I tell ya.  The fun I have.

These “fasting” appointments always get me extra tense because well, who wants to go to a doctor appointment and not eat when they’re body is yelling for food?  Aren’t we told to eat 3 healthy meals a day and to be sure to eat breakfast?  Well, we can’t eat breakfast when we go to a morning “fasting” appointment now can we?  These doctors want accurate blood test readings for cholesterol and blood sugars levels and such.  Yeah, well, tell that to my body who decided to wake up this morning and be INCREDIBLY hungry!  Isn’t that always the way?

Sure I’m pleased that my body was hungry because 2 years ago at this time I was trying to teach my body how to eat and ACCEPT food again after being so severely ill I had to start on a basic diet of chicken broth and then build to applesauce and go from there.  BUT when I “fast” I can’t take my morning medications with an empty stomach so that waits too and my whole body gets screwed up.  And it was 2 years ago in June when my body started going into a huge shock of what we all believe (NOW) was part of a major lupus flare (had no idea at the time) that all started with a basic “fasting” appointment for an appointment with who was my NEW doctor at the time so he could get BASE levels of bloodwork for me.  Well, that “fasting” and then running to work and then running through the rest of the day was too much for my body to take and I became severely ill with vomiting, etc.  So of course I still take that baggage of memories with me to my appointments now.  I’m working on letting that go but it is VERY SLOW.

So anyway, back to the appointment this morning.  Sorry for the tangent.  I was able to see the original Physician Assistant who is now back in the office after being on her own Medical Leave of sorts that included Maternity Leave for what seemed like FOREVER, and it was really great to see her.  How cool is that?  It was felt really good to see a medical professional again.  I really think she is THE ONLY MEDICAL PROFESSIONAL I currently see who DOES NOT make me NERVOUS.  I put those words in caps because that is how nervous I still get around almost all medical peeps.

This woman is probably younger than me (hmm, seems to be happening A LOT lately and I’m not THAT OLD) and has been so caring, supportive, compassionate, has always listened to me, been calming, loving, has always paid attention to detail, is really smart and knowledgeable, has a great memory, and has ALWAYS made it a point to ask me so thoughtfully how I’m doing when she walks in the room and I know she means it.  What I remember most along this very slow and at times VERY DARK 2 year journey with her is how she ends each appointment with me telling me how far I’ve come and really making sure I understand that and give myself credit.  I can remember one appointment when she was telling me how happy she was that I was “feeling better” and even though I may have a long way to go to hopefully feel “good” one day, that I have come so very far and she was starting to cry.  I was pretty much in disbelief.  I almost wondered why she was crying and then I realized she was crying about me!  She REALLY connects.

So the appointment today went really well.  And wouldn’t you know my blood pressure was “normal”.  CRAZY.  It has not been normal lately ESPECIALLY when I have been to see my Rheumatologist for lupus and my Neurologist for MS.  It has been quite high.  I have known for quite a long time that I have “white coat syndrome” but this just proves it to me.  I saw the one medical professional I feel the most comfortable with and my blood pressure was normal.  I was nervous but not anxious around her.  There is a direct connection.  So now if she could be with me wherever I go that would be great.  Do you think she’d go for that?  To be my constant moral support everywhere?

To be honest, I’ve considered changing to a different Primary Care Physician than the one I’m seeing now (this lovely PA I speak of currently works in his office) because I don’t know that he’s a good fit for me anymore.  He’s not a bad doctor at all.  In fact, he has helped me immensely.  There have just been some issues that I have with his medical care that I don’t necessarily like and it may be time for a change.  However, after seeing this PA today I’m not so sure.  I see her every other appointment and I have to see him all the other times.  Is it worth it to stay with this office (really GREAT office staff!) and deal with the Doctor I don’t exactly like in order to see her half the time?  Not really sure so I guess that means it’s not the right time to make that decision yet.

Only time with tell what decision I make.  Luckily I don’t have to know that answer right now.

So just for today, I am satisfied with the appointment with a medical professional who really “gets it” who sent me on my way at the end of the appointment today with, “You’ve come a LONG way, Nahleen.  I’m very proud of you for all the work you’ve done.  You deserve to feel better.  I hope you give yourself credit for that.”–and AGAIN, I know she means it.  It’s not just part of her script.

Oh and by the way, it’s currently 6pm (Monday) and I’m doing okay.  Nothing horrible has happened because I “fasted” this morning.  Sure it messed up my body’s schedule, but thankfully my body can take it today.

 

…Guess I HAVE come a long way.

 

 

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Double Whammy

Posted on July 19, 2012 by Nahleen

I have multiple sclerosis.

I have lupus.

Double whammy.

Not only do I have 1 disease but I have 2. It’s the summer. It’s REALLY sunny. I don’t know which disease (or it could be both) is acting up in my body or why but I do know that I don’t feel good and symptoms are starting to flare up. I was told by my Rheumatologist today that because I have both diseases I may never feel “good”. There will probably always be something happening in my body to cause me discomfort.

Now I know things are never for sure for any reason. Experience tells me that only time will tell what really happens or doesn’t happen. I went almost 8 years believing I only had MS and how I felt was “the way it was” until I was finally diagnosed with lupus 2 years ago and I learned I could feel “A LOT BETTER” than I had been feeling. And you know it’s true. I feel a lot better today than I did 2 years ago. Absolutely. Thank goodness and I am very grateful for that.

BUT…my doctor pointed out that I have been on a physical plateau for awhile and since it had been awhile she was thinking that may be my new baseline. Well OK–but NOT OK. So what happens from here? Isn’t it the unknown that’s so scary? Isn’t it our heads that freak us out too? I hear this and I start thinking, “Well this is it. This is all I have. I don’t ever get to feel better.”–but then what is there if I live with just those thoughts?

AND it’s back to one moment at a time, one hour at a time, one day at a time–whatever it takes to keep the “time” idea really simple. Because right now the summer and the sun are fogging my perspective and making me think that there is a LIMIT TO HOPE. I DON’T BELIEVE THAT! I have a wonderful husband, I have an adorable kitty, I have amazing supportive friends and family, I have a roof over my head, I have AC (THANK GOODNESS!), I have a great car, I have clothes, and the list of HOPE goes on and on.

BUT–I can’t mask it.

I am really struggling…

I’ve been very confused lately. I’ve been functioning better, able to exercise more, be a bit more active, I feel stronger, but YET I still have really bad fatigue, pain is coming back in my joints and especially my hands, I’m getting weird rashes, I get to the point in the day usually where I CRASH and my body is all done, I’m starting to have digestive issues again and I DON’T GET IT! What’s going on with me? Am I getting worse? But I thought I was better? How will I know when the weather is wacky and I’m so darn sensitive to it? And how can anyone really figure out which disease to treat when both diseases have been known to act up exaggeratedly during the hot times of the year????

My Rheumatologist and I had a very in-depth conversation about all of this today and that really means a lot to me that she took the time to talk and listen with me for quite awhile. She was understanding and compassionate but also very direct and to the point and not too harsh about it. I have MS. I have lupus. Double whammy. She confirmed that it’s going to be really hard for me. Will I be able to work again? What will I do now? What can I do now? She’s not really even sure that I’m much better than I was 6 months ago, it’s just that “THINGS ARE DIFFERENT” and so this probably really is my plateau. Perhaps I’d feel much better with only one disease (you know, as if only 1 of these diseases is a cup of tea–they’re all sucky)…but that’s not the case.

REALITY TELLS ME I HAVE MULTIPLE SCLEROSIS AND LUPUS.

Reality HITS me these days. This is it. This is my life. Yes I could be a lot worse. Yes I could be a lot better. But the truth is, I don’t feel good. Will I ever feel “good”?

I will do my best to have hope but right now I AM TRUDGING and the muck is really thick and it is very easy to feel stuck…

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Diagnosis Part 4: “9 Times Out of 10″

Posted on May 17, 2012 by Nahleen

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

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