Posts Tagged With: MS

Picking Up the Pieces

Posted on September 17, 2012 by Nahleen

Oh my goodness. What a weekend it was! I am so relieved to get through it.

On Saturday, it was 104 degrees here in West Los Angeles, CA! Crazy ridiculousness! Thank goodness the AC was working. However, it was still hot in the apartment if you ask my MS and lupus. OH yes it was. Yet, at the same time, somehow I got out with Corey to run some errands. I needed to get away from the building. Like in a car get away. I hadn’t been in a car to go anywhere in over a week and my little visits to the sun deck and my walks around the block just weren’t cutting it. Nope. So for sanity’s sake I got out and it was good to do so even though my body was yelling at me.

On Sunday, it was a bit cooler but still too darn hot. And it was an awful day because our Cleo Kitty (who’s been doing quite well since her cancer diagnosis in December 2011) was very very sick and we really weren’t sure what was going on. We think it was a bad reaction to medication but we’re really not sure. It was one of the hardest days I’ve had in a really long time. And the GREAT news today (Monday) is that she’s doing much better and almost seems like herself again. She didn’t eat for 24 hours. Very scary…when she did finally eat a little bit it was so exciting!

Meanwhile, I’ve still been fighting this small intestine bacterial infection. So while it was so hot and then Cleo was sick, my stomach was churning at times. The good news is that the infection seems to be getting better and I’m functioning more in my life. Today I stopped taking 1 of the 2 antibiotics I was on to treat it so hopefully that helps a bit to clear my head. I tend to feel a bit woozy on them.

So needless to say, we’re trying to settle back into a norm here. Thankfully it isn’t AS HOT here and Cleo’s recovering. I feel so blessed and grateful that we are given the gift of more time with our little girl. She is truly very special and definitely a fighter.

And as much as I feel like I SHOULD BE hitting the ground running, there will be no such thing today. I have a few more things that need to be done, one errand to do which will help me get out and otherwise it’s resting with Cleo.

Gotta give myself room to pick up the pieces and recover in all areas. Most of it can wait.

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Rough Week

Posted on September 6, 2012 by Nahleen

Thought I’d check in.

IT HAS BEEN A ROUGH WEEK.

Monday was a Holiday and I was still recovering from feeling yucky over the weekend.  Thank goodness Tuesday worked out with the Pulmonologist and all of my reflection because then the whole week wouldn’t have been so great.  Then again, it was a lot of hard work going to that appointment and being out in the heat.

So then Wednesday comes along and all chaos breaks out because the AC’s not working in the apartment.  In fact, it’s more like heat was coming in the vents and the temperature was rising by the minute.  It’s a long story but it’s not looking good for the whole building at this point.  Sure, the AC is working a bit right now thank goodness (nice bandaid they put on it I guess) but it’s only temporary and I was told it would take months to really get it up and running again.  Hmm, needless to say I was not happy about that since my MS and lupus continue to be so dang sensitive to the heat.  Oh and to top it off, I can’t get the YouTube links to work on my ’80s Blog post for this week so that’s been delayed STILL.  Geez.  Looking into that.

Thursday’s been a catch up day for me but I’ve had to reconfigure my whole day and my health depends on as much routine as possible.  So in order to make sure I’m able to get some stuff done before the AC “might” stop working again today, I had to go to the grocery store before my shower and exercises (I feel much much better if I do my whole self care regimen first usually) and then eat, take a shower and exercise–all the while hoping the AC wouldn’t go down again.  I know I’m blessed to have AC.  I’m truly grateful.  BUT life sucks without it.  My body started acting up RIGHT AWAY as it is getting warmer.  Sucks big time.

And tomorrow I need to see the Gastroenterologist because my digestive symptoms are starting to act up again and I want to address it sooner rather than later.  UGH!  I really don’t like going to the doctor on Fridays.  They’ve half checked out for the week and I’m pretty much done and spent from the week.  Sooooo, this should be interesting.  Here’s hoping he can help me and it’s nothing too serious.  As if I need more symptoms and health stuff to manage.  Please if you can, send along good thoughts for me.  Since that appointment is happening I may not get a chance to post my Moments of Peace but I will play it by ear.  I may need to be reminded that there are such things as peace.

OK.  Gonna go now.  Gotta rest.  My body’s done with me.

I hope you’re all having a better week than me.  I am aware that I’ve had worse times for sure but it’s been quite a hard one and I’m feeling tired and bothered.

Take care.

 

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ACUPUNCTURE TODAY!

Posted on August 28, 2012 by Nahleen

I have a one track mind today. It’s called ACUPUNCTURE AT 3PM TODAY!!!!!

My body has had more than enough of this sun and heat and so have I! Yes, it’s summer and Blah Blah Blah but for goodness sakes, I need some relief!

Sure, air conditioning is fabulous and closed blinds help but there’s only so much a cool dark cave can do. When it’s hot it’s HOT. My body knows it. I can’t fool it. I tend to hold in the heat and stock up on it just in case I end up freezing one day (hmm, it’s been YEARS since that’s happened) and I am rarely ever cold. I also am a sponge to humidity and suck in the dampness and then I’m really in trouble. Heat and dampness don’t mix well in a multiple scleroris/lupus world. Nope. No they don’t.

Heck, MS and lupus don’t mix together either but that’s a whole other topic.

I’m grateful to have found acupuncture years ago and been willing to try it. It’s not a cure but it sure has reduced my body temperature a great deal. I still remember my first appointment and treatment with this wonderful lady. She told me I carried too much heat and dampness and she was going to cool me down and dry me out. I HAD NO IDEA the effect it would really have on me. While I laid on that table in that strange room with all these weird needles in me (DON’T LOOK) with a lovely eye pillow on my eyes and relaxing music playing in the background, I started feeling what felt like a door/window open in my right arm and it was like this rush of cool air started working its way in up my arm, across my shoulders and into my left arm and kept going throughout my body. I was convinced it was someone turning on the AC or was blowing a fan on me. Nope. It was the effect of acupuncture and because I was so seriously boiling hot internally the relief was almost overwhelming! When I told my Acupuncturist about my physical sensations, she was thrilled. It was exactly what she was hoping for and yet she was baffled. She said I must be really sensitive because most people aren’t so aware of how they’re feeling during their treatment and will tell her later instead of right then. (I continue to be that sensitive years later and she says she LOVES to treat me because she gets more of an idea of what works and what doesn’t with me.)

After a few more treatments I was committed to keep on going with these acupuncture treatments. In fact, the relief of the intensity of symptoms (my body was throbbing with symptoms at that point) had me on a big HIGH a few weeks later because it was like the endorphins knew how to function again and the ABSOLUTE PLEASANTNESS I felt was unbelievable. I was bouncy and unbelievably light and happy. Everything was GREAT! Now realistically that didn’t last but it was a nice feeling to have at the time. I had NO IDEA I COULD FEEL BETTER…

I soon found acupressure treatments at the same office and swear by those too. It is acupressure that has loosened up my body the most and helped me to function with daily activities and in the world.

Sooooo needless to say, I CAN’T WAIT FOR MY ACUPUNCTURE APPOINTMENT TODAY AT 3PM! IT CAN’T COME SOON ENOUGH!

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A BIG OLE THANK YOU!!!

Posted on August 9, 2012 by Nahleen

Thank You! Yes You!

You are reading this right now and I thank you. I wanted to send a little note along to you all and share my gratitude and appreciation for your support, encouragement, conversation, and anything else connected to a Blog that I know I’m missing.

(My head is not thinking straight. This heat is kicking my butt today. Mega slow motion…UGH.)

For years I was unsure anyone REALLY wanted to know my story. I mean, why me? There were lots of people who tried to tell me I had a story to tell and that people might want to read it. My thinking is that we all have a story to tell and I had this odd idea that since we all had a story to tell that mine wouldn’t be good enough or that you wouldn’t care. But you do care.

It finally clicked at the beginning of this year that it shouldn’t be about whether you all want to read or know my story but whether I want to share it. Then it became a NEED to share it because I was going to burst! I needed to get it out. There has been so much inside me for years…so much I needed to express. I used to write a lot when I was younger and I loved it. Then I lost site of it as I explored other creative paths (and because one college professor didn’t like my writing so woe is me I can’t write ANYMORE–dramatic I know) and built a wall to block my writing as high and tall as I could muster. I wanted to write about my diagnosis story with multiple sclerosis 10 years ago when I was first going through the traumatizing hell of trying to figure out what was wrong with me but I wasn’t ready. And yes, I think it took me nearly 10 years to take down that wall piece by piece.

And so March of this year was the time to TRY. Apparently I was READY. I couldn’t stop once I started. It was all starting to burst out the flood gates because now there was some freedom. It’s hard to get the crap out. It’s hard to be vulnerable and to tell the truth–to be personal and yet I’m learning it’s so important to get it out.

AND you have all been there with me. You responded to my Blog posts about MS, lupus, doctors, appointments, concerts, health, heat, people, ’80s, my moments of peace and the topics really are endless. You liked my posts on Facebook. Yes I’m on Facebook (I mean, who isn’t right?) as “Nahleen Blake”. My page is private so please send me a friend request and feel free to let me know who you are and how you found me. I love to converse on there with all kinds of people. It’s been great to catch up with old class mates from way back to new people and to hear your feedback about what I post and the messages/photos I post. I’m also on Twitter as “nahleenblake”. Feel free to follow me if you like. I would love it too if you responded to my Blogs and we opened up conversation. One of my favorite things is to connect with people. Please talk to me. I’ll be honest. It’s kinda weird putting myself out there to what feels like the “WHOLE WORLD”. You can also send me an email and there’s a link to my email on my “About” page.

THANK YOU. (And Corey–thank you with all my heart. You are my biggest support of all. You have coached me and loved me the whole way through. That means so much to me.)

You are ALL helping me to BE ME.

That matters most.

P.S. Anyone know of a human-sized refrigerator I can go in now to cool off so my MS doesn’t act up anymore in this heat????

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Ever Had a Left-Handed Hygienist Clean Your Teeth?

Posted on August 7, 2012 by Nahleen

I have.  Today.

She’s bubbly, friendly, funny, gentle and left-handed.  It was so cool.  It doesn’t take much to excite me these days I guess.  She’s the first left-handed hygienist I’ve had.  I thought I had noticed her position in her chair as she cleaned my teeth the last time I was at the Dentist and today I asked her about it.  Not everything she did was the complete opposite of doing it all right-handed.  She said that in school her teachers ONLY knew the right-handed method of cleaning teeth and when she and her 3 other left-handed classmates (she tells me that’s very unusual for one class to have more than one left-handed person in it) got stuck trying to figure out how to do the next part of the exam they were learning with their left hand, the instructors would be stumped and wouldn’t know what to tell them.  She said it was really good in the long run because she had to problem solve each roadblock they hit in the mouth on their own (that seems very strange to articulate in writing) and not everything was completely opposite.  She also was forced to learn the right-handed method too in order to get by.  Pretty interesting actually.  So she then answered the next question I was going to ask her which was why it seemed like she had different methods for cleaning than what I was used to.

And why am I even talking about this?  Well because I had a good dental appointment today for the first time in years!  There are no real issues to report.  I PASSED WITH FLYING COLORS!  Amazing!  Not only do my wisdom teeth (crazy that I still have them) look good with no areas to watch for cavities, but my gums aren’t as irritated or bleeding (can happen with not only lupus and MS, but also with the medications I take for both–isn’t that just great???), and all the other teeth are good too.  Sure I have a bit of a cracked tooth (have no idea how that happened–guess this it it–I’m getting old…) but the Dentist had no worries about that AT ALL.  Oh and a lot of times my jaw and face muscles in general get really tired of being open for a long period of time (MS and lupus related during the cleaning and I didn’t have much of a problem with that either.

I think it’s the first doctor appointment I’ve had in a long time that was so positive–and get this–NORMAL.  It’s a really nice feeling.  I’ve been kind of a high all day about it because I feel like I rarely ever get a break from any doctor these days.  There’s always this underlying black/grey cloud hanging over my head about something.  I just have to stay very diligent about all the brushing, flossing, etc. that I do to keep up and all should be well.

Considering it was quite hot today it’s been a pretty good day overall.  It’s nice to be able to say that.

Thank you all for being here on the road to recovery with me.  It feels really good to share with you.

Hope you’re having a good week!

 

 

 

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101

Posted on August 6, 2012 by Nahleen

GO ME GO!

I HAVE WALKED 101 DAYS IN A ROW!

That’s so cool. Thank goodness I had a Physical Therapist a couple of months ago who I really clicked with. She encouraged me to “Keep On Keepin’ On” no matter what. She told me the most important advice she could give me is to walk–even just a little bit–every day. Yes, EVERY DAY.

She pointed out that with lupus and multiple sclerosis WALKING is the BEST thing I can do for me. Even just a few minutes every day will help. The point is the repetition with my muscles and with my body in general. Pretty soon my mind and body will be programmed to make it a habit and it will all work out. Otherwise, the muscles are encouraged to stiffen up and in turn I will not have the flexibility, strength, stamina or endurance and it will continue that way. She understood both illnesses well enough to tell me that she knew there were days I felt like walking WAS NOT A GOOD IDEA. It kinda did feel like she was reading my mind. Perhaps I’m too tired or have too much going on or my legs just hurt so the red flag goes off in my head that I BETTER NOT WALK TODAY AND JUST LET MY LEGS REST. BUT the point is to WALK.

She also made it a point not to bite off more than I could chew right away–that it was really okay to ease myself into it and to even do a few minutes if that’s all I could do. There was no need to push too hard or walk for an hour every day or to walk too much all at once. It’s cumulative. The body will remember, the muscles and nerves will remember. Sure it might be hard at first to mentally be committed and my legs might yell at me for using them “too much” but to keep at it. Take it easy. WALK. No judging of myself.

WALK.

So while I was still in treatment with her I attempted this idea called “WALK”. Sure I did too much at first and walked too much and wore myself out. Of course I did. I’m me. She pointed out that as humans we are all programmed to think we have to take it all on. She’s worked with pretty healthy people too who also bite off jump in right away and wonder why they can’t walk the next day or a week later.

ONE STEP AT A TIME.

So that’s what I’ve been doing and it’s worked. And I can say that it has finally clicked in. I’ve heard over the years that someone with MS (specifically) should try to exercise every day and do something–whatever that is–and that walking was a great idea.

IF I CAN WALK AND HAVE THAT PRIVILEGE THEN TO WALK IS A PRIORITY…

I do have to change it up a bit. I have a fitness walking video I use at a home, sometimes I do a dance walk type thing–hey maybe I can patent it is the Nahleen Dance Walk, I walk around the apartment (so boring but gets the job done), I walk outside, I walk where I have errands, I walk the mall, I walk a park, I walk in a museum, I walk before or after a doctor appointment.

By now I know you get the point.

I WALK.

And the payoff is really great. Not only do I know I benefit from stretching every day (been doing this for years–thank goodness), BUT now I walk every day. I have always loved to walk outside. It helps to relax me to see nature with the sky and flowers and birds–you name it. There’s even some fresh air to breathe. It’s lovely. So this is all really good for me to add it to my daily routine. I’ve noticed my legs ache and are less stiff, my joints don’t hurt as much, my legs are stronger, I have more endurance and can walk more distances and a lot of times it’s not my legs that bother me much–it’s the rest of my body.

I’m so so glad I listened to this very special woman. She has really changed my life.

ONE STEP, ONE WALK AT A TIME…

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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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OK OK

Posted on July 26, 2012 by Nahleen

I woke up this morning and my body was begging me for REST!! OK OK. I get it. For now anyway. I’ll do my best to rest today.

I’m also gonna follow these unwritten prescriptions (although if they were in writing I might take them more seriously) that both specialists have given me in the past week.

1. Don’t be so hard on myself. I have MS and lupus. That is enough. That is MORE than enough.

2. Get more rest.

3. HAVE MORE FUN!!!

Alright. I’ll do my best. These really are the three main things I need to work on and I’m really pleased that my doctors picked up on that.

MORE FUN?! What’s that? I think I’m learning slowly…

And so, that’s what I’m doing today. Just wanted to pop in and say hello and put these 3 things in writing.

I guess they’re important…

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Smartypants

Posted on July 25, 2012 by Nahleen

Guess what??

I saw my cute Neurologist today annnnddddd:

My multiple sclerosis is STABLE!

Great news!!! Turns out the lesions I have are the lesions I’ve had FOR-LIKE-EVER and they’re not active! No new ones to speak of. Just the ones that seem to have taken permanent residence on my brain–you know–for kicks and memories I guess. I won’t lie. I sure would like those old lesions to get the heck on out of my brain, BUT I’ll take what I can get.

As my doctor says, “Guess what? You have a beautiful brain!”. Hmm. Thanks…I think?

He’s also pretty darn thrilled with my physical improvement since I first met him almost 2 years ago and he gives me and the oral MS medication, Gilenya, A LOT of credit for that. As for Gilenya, there was a time earlier this year that he was worried about the reports of deaths while on it. Turns out, none of those deaths look like they are connected to Gilenya AT ALL (so sorry these people died BUT so relieved to hear it wasn’t Gilenya) and if there’s even a hint of a connection, they have nothing to do with my clinical make up and he is VERY HAPPY to keep me on it! Well OK then!!!

This Neurologist continues to be my favorite Neurologist so far which is saying A LOT since I have had crappy luck with these specialists in the past and I think he’s my 9th Neurologist in 10 years. It’s not just because he’s cute either. REALLY. No really. He’s knowledgeable, patient, compassionate, takes the time to talk to me, answers ANY and ALL of my questions, asks me about ALL of my health issues because he believes his MS patients can’t be truly healthy without taking care of the WHOLE body, his Assistant rocks it in the Assistant Department (and could give classes about how to handle Patient and Doctor demands), he responds very quickly to phone calls, he’s personable and quite humorous, pays attention to detail, he was very understanding when I had to cancel an appointment due to being sick, he’s proactive, and apparently he’s one of the top MS Specialist Experts in the country. You’d never know that from him. He doesn’t talk about that at all. I hear it from his colleagues (all the other doctors I see who work with him). Oh and did I mention he used to be a JAZZ MUSICIAN in a past life??? How crazy is that? How does that happen?–First a Jazz Musician, then a Doctor, then a Neurologist, then an MS Specialist??? When I asked him about the connection, he said, “I’m a Nerd.”

My clinical neurological tests during the exam went okay. I think I had some issues. He knows I’ve done those tests a bazillion times so he tries to trick me and ask me what I ate a week ago (not last night or this morning but a week ago). He tries to pull questions out of thin air and ask me what I don’t expect. When I answered the spelling of “orange” correctly (kinda hard to spell with your eyes closed–you should try it), he said, “OK Smartypants. Let’s see what else you can do”–and after he had me do a few more tests he told me to spell “orange” backwards…and then giggled about it. Yeah ha ha. Thank goodness I’ve always been a good speller and visualizer. Now you try spelling orange backwards with your eyes closed. HARD RIGHT????

So that’s that. My MS is probably just acting up because it wants to and because it’s been hotter. AND it takes nothing for me to get hotter when it’s extra sunny. And wouldn’t you know, he says I have a case of the “Double Whammy”…hmm…sensing a theme here. Isn’t that what my Rheumatologist said about lupus and MS last week???

So to end the appointment, he told me to “stop being so hard on myself.” He pointed out that I have multiple sclerosis AND lupus. Enough said I guess. I don’t know why that can’t stick with me more and I can’t accept that as ENOUGH.

Guess I just want to live a “normal” life WITHOUT multiple sclerosis and lupus.

BUT since that doesn’t seem to be in my near future (an obliteration of any disease at this point), I’ll continue to practice this “RESTING” thing that is all the Rage with doctors these days and TRY to be gentler with myself.

I’LL TRY.

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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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