Posts Tagged With: multiple sclerosis

11 Years Ago…

I still grieve.

Or maybe I’m finally grieving.

I don’t know.

I thought I didn’t remember the exact day my life changed forever.

AND THIS MORNING IT HIT ME.

Sounds so hokey to say that. But those are the judges in my head saying that it’s hokey. I don’t think it’s hokey and so what if it is.

It was November 22, 2002. I was 25. I was moving full speed ahead. Sure I had gone through 6 months of extensive testing to try to figure out why the bottom of my feet were constantly tingling. Sure I had gone through many phases of FEAR about what could be wrong with me. Yet, EVERY test I had taken till then had come back inconclusive or all looked good.

So why would my first MRI be any different?

BUT IT WAS. IT WAS DIFFERENT.

I entered that hospital to get the MRI on the evening of November 22, 2002 and left a piece of me behind back there. I never did go back to that same area where I had it done to retrieve that part of myself. Not only was the MRI more terrifying than I expected but the LOOK that Technician gave me when I was FINALLY taken out of that God-awful tube made a part of me vanish in horror. In her eyes, all I could see was DEATH. It’s taken me all these years to find the right words to describe her look. That’s what it was.

DEATH.

I was 25. I wasn’t thinking about the END. I was thinking about the BEGINNING. This was it. I had just been a Production Assistant for a couple of short films, I was going to be an Associate Producer of another film, I was working 2 jobs to make some extra money, my full time job was in Television and I was gonna make it big no matter what it took. I had an awesome kitty and a wonderful boyfriend (who is now my awesome husband) and life was VERY UP. That was the reason I left my life in NH to go to LA right? I was gonna do this.

BRING IT ON.

Hmmm. I didn’t say BRING ON MS. Nope. That’s not what I meant.

That next morning after the MRI I was admitted into the hospital for 3 LONG DAYS of HELL. They thought maybe I had a brain tumor. No, maybe it was some kind of infection in my brain. No maybe perhaps, but probably not, but maybe, I had MS. I felt like I was living in a nightmare. My sister who was here visiting (poor thing–this was her visit. But the timing is not a mistake.)

After that it was a Thanksgiving family reunion that I don’t remember much of at all and RIGHT after that I was diagnosed with multiple sclerosis.

MULTIPLE SCLEROSIS.

Something REALLY was wrong with me.

4 Days after that I had my first FULL BLOWN EXACERBATION. No surprise.

All symptoms I could ever have ever, you name it, happened in my body.

AND…

AN ANXIETY ATTACK.

AND…

A HORRIBLE, MEAN, ABUSIVE NEUROLOGIST WHO SAID IT WAS ALL IN MY HEAD.

AND TOO MANY STEROIDS…

Still don’t know how I survived what I found out later was a major overdose of steroids.

AND MY LIFE AS I KNEW IT WAS OVER.

And yes, my life is getting better. BUT it is not how I pictured it would be. In a lot of ways my life is better than I ever thought it would be. I’m forced to live more in the Present. And the Present can be a wonderful place.

And I still grieve…

I grieve over that life I thought I would have BEFORE that terror-filled MRI night. I grieve more now over it because I guess I’m ready to.

And that’s where I am today. I couldn’t figure out what exactly that dark cloud was that had been following me all week and was almost suffocating me this morning. Every year I seem to block out just what day it was that this all happened over a decade ago.

AND IT HIT TODAY.

GRIEF.

and

GRATITUDE.

Both can exist at the same time.

I never thought I could make it past that night but I have. One day at a time. That’s all I can do. Sometimes it’s one moment at a time. And that’s what I’ll take today. One moment at a time is enough.

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“Should” Is a Dangerous Word

I don’t know about you but I have a lot of chatter going on in my head quite often. I’ve learned and been able to quiet it down a bit more but it’s amazing how loud it can get in there. My goodness. The things I say to myself. I used to be really mean to me and abusive and I realized that I didn’t like those bruises anymore, that I didn’t deserve them, so I have gotten in the practice of TRYING to take words and phrases out of my head that do me more harm than good.

“SHOULD.”

That word needs to be considered what is called a “bad” word. How often do I find myself “Should be” with the “Should be” because “Should be” is “Should be” and back and forth. It’s awful really. I set myself up on this pedestal and the expectations start. I expect more of myself than others expect of me. For goodness sakes. I mean I have multiple sclerosis and lupus and if I count what’s been happening the past few days, I’m also dealing with a sinus infection and have been sick from that.

ISN’T THAT ENOUGH?

Why does “should” even come into my Being. Why do I even let it in? I try so hard to take it out of my vocabulary. In fact, even writing this, I find myself wanting to write the word “should” in a sentence over and over again. But it always gets me into trouble.

If I act on the “Should Be”s then I am only going to get tense and stressed out if and when I can’t follow through. This became very clear to me again this evening when after a long day of crunching numbers, some rest, taking medications, taking care of my sickies, taking care of my Cleo Kitty, taking a lovely walk in the fresh cool air as the sun set, spending time with Corey and just living my life I found myself playing the “Should be” game.

ONLY IT ISN’T A GAME.

It’s always more serious and it is never fun. It says I’m not enough. It says that I’m not doing enough. I’m not good enough.

Well I have news for me.

THAT’S NOT TRUE. I AM ENOUGH.

SO NO MORE “SHOULD”.

And when I say it again to myself I gotta try not to be too hard myself about it and just try to stop myself and either reword it, trust that all is as it should be and/or tell those words in my head to go away. That they are no longer welcome.

As I said before, I’m getting better at it, at keeping the “Should”s away but it is very hard.

Since I didn’t act much on the “Should be”s today I am relieved to say that I am a bit better from the sickies. I’m also feeling a bit loopy and strange from the antibiotics and the mucinex but I’m not feeling sicker and more miserable so that is a plus.

Progress is a good thing.

I think I’ll write to the people who write the updated dictionary every year or however often they update it and tell them to take the word “should” out. What I do know is that in the Book of Nahleenisms, “should” is not included. In fact, the word no longer exists…

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The “Cool Kids”…as if I know how they are…

I just wanted to be like the “‘Cool Kids” tonight. That’s all.

You know. The “Cool Kids”. The people who are doing stuff that is cool that I don’t get to do.

Right? Aren’t those the “Cool Kids”?

Well that’s what it feels like tonight. I did all my stretches and workouts today which is pretty darn good. I did everything I could do for me and for my health. And…

I ADDED A NEW STRETCH…

That NEW STRETCH has kicked my butt. Everything changed from that point. Even attempting this NEW STRETCH did me in. It was sooooo hard. I haven’t had to attempt such a hard stretch in a long time. Oh good. I’m glad I’m not putting the word “stretch” in capital letters anymore. It doesn’t deserve to have such Power over me. But it sure did take over my life today. Everything in my body changed at that point. I was able to keep exercising but I had to rest after trying to do the stretch and then start up again. My whole body was yelling at me. This is a new stretch given to me by my Chiropractor. I had tried to do this stretch last year with my Physical Therapist at the time and I couldn’t even get in the right position so we decided it wasn’t the “right” time to even TRY it. And now, the stretch is back to haunt me. At least I was able to get in the right position and I kinda pulled it off but it was one of the hardest things I’ve had to try in a long time.

HOLY CRAP.

I’m determined to conquer this stretch. I know it’s a good one. I know it affected my whole entire body. I’m gonna get it. I am. BUT not today.

So because of that stretch…and the fact that I have multiple sclerosis, lupus, irritable bowel syndrome and all kinds of other crappy issues that go with these three yuckies, I DON’T GET TO HANG OUT WITH THE “COOL KIDS” TONIGHT. (I know I know. Perhaps I’m the “Cool Kid” for staying home and resting and not pushing it too hard. Yeah whatever. Still not Cool. I’m not in the mood to look at the brighter side of things just yet. Sometimes I don’t want to make concessions.)

Corey has an Improv show tonight. Actually, it’s debuting tonight. Brand new and full of silly. I just know it. I love to see him up there. He looks so full of joy and really blooms on stage. Makes me happy to see him happy.

BUT NO.

MS, lupus and IBS have reared their ugly heads…YET AGAIN.

YET AGAIN…

They decide my night.

YET AGAIN…

They stop me from getting out.

YET AGAIN…

They interrupt my life.

And you know what? It’s not OK. Not tonight. I will deal. I will get some rest. Everything will happen even if I don’t get to go. I’m not as upset as I used to be about it but I’m definitely not happy either.

AND I’M TIRED OF NOT “GETTING TO GO”.

I’M TIRED OF HAVING TO SAY “NO”.

I’M TIRED OF BEING “LEFT OUT”.

I’M TIRED OF HAVING TO CALCULATE WHEN I CAN AND CAN’T DO STUFF. FUN STUFF!

And it’s when I can’t do the FUN STUFF that’s the worst.

And time will happen. I’ll have another chance to see this new show next month again. Perhaps I’ll be able to go. Maybe I’ll even be able to hang out with the “Cool Kids” and be one of them.

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THE OK POLICE

It’s time for a confession:

I haven’t written in awhile. It looks like it’s been over 2 months. The truth is, I’ve been watching my back. I’ve been keeping an eye on happenings around me. I’ve been looking over my shoulder even more. I feel like my last post revealed something illegal.

It feels ILLEGAL to say “I’m OK”.

WHAT????

To be honest, I have been waiting for the “OK Police” to track me down, to find me. Clearly if I have put in writing that “I’m OK” then I’ll be found out. How dare I have MS, lupus, IBS and all kinds of other issues and be OK? What am I thinking? Clearly then I should be working and living that “normal” life right?

I MUST be ready for a job. I MUST be ready to add that chaos back into my life. I MUST feel well enough to work.

Something happened in April of this year that I have yet to write about here because to be honest I’m still not ready to get into too many details. What I will say is that an entity who shall remain nameless stopped helping me financially and my legal counsel advised me that it was because by writing a Blog and being “able to write” then CLEARLY I can WORK.

OBVIOUSLY.

OH WHAT A FANTASY. I WISH IT WAS THAT EASY.

Or maybe it is right? Well let’s see what I can do in the morning if I were to go to work right now? I can get up early in the morning, stretch my body in the bed before I even get up because due to my MS and lupus my body has stiffened through the night, I can try to do some spiritual routines to help me have hope to get through even the next hour, I can shower which ALWAYS feels like an EVENT, I can put on all the creams and do all the Dermatologist ordered regimens in order to protect myself against sun sensitivity due to my lupus, I can feed my Cleo Kitty, I can think through my fog-addled brain that includes a regular feeling of tired along with MS fog and lupus fog, I can make my breakfast, I can take all my vitamins and medications, I can pull together a lunch for the day, oh yeah and how could I forget putting on clothes which can wear me out, I can put my shoes on with hands that are probably achy and stiff due to MS and lupus, I can do my stretches that usually now take 2 hours to do that have been provided to me by my Chriropractor, my Physical Therapist and those I have learned over the years, I can brush my teeth that requires movement of my hands and arms, I can go to the bathroom which is probably TMI and obvious to some but that depends on the ingredients of this experience, I can find my keys which even to normal people is hard to do, I can be sure to wear my sun protective jacket or shirt AGAIN because of my lupus sun sensitivity issues, I can put my hat on my head and flatten anything that might have looked like a PASSABLE hair do, I can grab my bags and hope I can even carry them, not to mention just dragging and pushing through all my symptoms I might be having for the day like FATIGUE which is a huge issue for me, stiffness as mentioned a bit before, weakness, balance issues, aches and pains, the itchies, HEAT FATIGUE which is separate from regular fatigue and is still playing a bit part of my life here in LA even as October looms, SUN FATIGUE where yes even the UV rays sneak through the CLOSED window blinds and can affect my lupus, dry mouth, dry eyes, numbness, tingling, nausea, constipation, and all the other digestive icky stuff and I could go on and on about symptoms, and THEN I can hopefully remember what I need to bring and actually bring it (Memory is also a serious issue and symptom), go into the hallways into different UV rays and temperature, lock the door if I can remember to, go into the elevator, deal with the fluorescent lights that could also affect my lupus due to the UV rays that blare from these awful lights, ride the elevator and hope I don’t get dizzy (another symptom) from movement, all the while hoping I can stand this whole time if my legs will let me, walk to my car, unlock it and put the stuff in my car and then get into the other side of the car…….AND is anyone else tired?  I mean, I haven’t even left the apartment building yet.

AND THAT IS JUST THE MORNING.

I’m exhausted just thinking about it. This is what I go through every morning if I have a morning doctor appointment to go to. This is what so many of us do. Have you all realized what you do in the morning? JUST the morning? It’s a wonder we can do anything EVER.

AND YET, I’M WORRIED ABOUT THE “OK POLICE”. That I might get “found out”.

I mean, Gawd forbid I say I’m OK. It’s as if the Disability Police are going to come and tackle me and say they “caught me”. That I’m going to admonished for being “OK”.

What is OK? Well, that is a very broad term for all of us. Yet some people and entities who shall not be named choose to think it must mean all is right with me or you or whomever it the subject of those 2 LETTERS.

2 LETTERS can implicate you. 2 LETTERS have the power to make me feel guilty. To make me feel guilty about what????? I have friggin’ MS and lupus! It’s a miracle to even think I could be the LETTERS “O” and “K”. Seems to me, those that think I can do more than I do should feel guilty if anyone.

Come on now. Sure, a lot of this is in my own head. But where did it come from? It came from a society that believes that we have to keep going and going and we’re NOTHING if we don’t keep going and we must be “LAZY” (if we stop and smell the roses for goodness sakes–needless to say I really don’t like that word because there is such a negative connotation to it) and that we have to accomplish the world and yet that’s never good enough is it? We live in a world that judges based on words, based on outward appearances when so much of what we ALL go through is invisible to the eye. So we live in a life of constant stress don’t we?

WHY?

Why are we so concerned with what others are doing?  Why do we decide it’s wrong? Why do I think I’m wrong for being “OK”? Why can’t I celebrate it?????

For so long I have struggled. For so long I have felt CRAPPY. For so long something was wrong.

So why be so worried about the “OK Police”? Why can’t I just live my life? Why on earth do I have to be punished for feeling a bit better?

BETTER.

Now there’s a wide open word for ya. Oh my goodness! She said she’s better so it must mean that all bad and uncomfortable things have come to an end. I have news for everyone who thinks these things and all entities who use that word to stop taking care of someone who actually deserves the help (YES I SAID DESERVES THE HELP)! Guess what???? BETTER DOES NOT MEAN THAT I AM ALL BETTER AND I AM READY TO STEP BACK INTO THE WORLD AND WORK MY BUTT OFF NOT JUST ON TAKING CARE OF ME BUT ALSO TO WORK 40 HOURS A WEEK AND WORK AT LEAST THE EQUIVALENT OF MY PAST JOB AND WORK UP TO 50 (YES I SAID 50) MILES AWAY FROM WHERE I LIVE! And yes I am yelling.

Better means there is improvement. It means that I don’t feel so absolutely miserable that I don’t know how I can make it another day. And no that has nothing to do with ending my life. It means what I just said. It means that maybe, just maybe I can eat more than toast. It means that I might even be able to write a bit. It means I might be able to take a shower without wearing myself out.

OH NO! I’m writing a Blog! A Blog! I can clearly work right?

WRONG. Since I’ve been writing this post today my hands and arms have been throbbing a bit but I am determined to write it. I will not keep it all in and be quiet and stuffed into a dark corner where no one even has to know I exist. I have news for you. I do exist. I have a name and I have a life and I am not less than. I deserve to be heard. I have so much that I could feel crappy about. I have so much reason to think no one wants to hear me or see what I write. Those are delusions however. I will FEEL this afterwards. I won’t be able to wash the dishes by hand because we have no dishwasher and it’s the only way to get them clean. I won’t be able to think clearly for awhile because I’ve used so much of my mind energy to write and focus on this that is also so fulfilling.  I won’t be able to do the 4 loads of laundry even with my husband’s help because I’ll need to rest. I also won’t be able to focus on the bills that need to be done. Yes, I even do bills. I struggle through them cognitively (I deal with a hard time concentrating quite often due to MS symptoms.)

Oh sorry. Should I have even mentioned that I can sometimes do dishes and sometimes even do laundry with help? Or that I do bills? Yes, even those of us who are disabled have bills to pay. Lots of them. We may not have a lot of money to pay for them though. Heck, we might even have more due to health insurance and other medical expenses that drive us out of our minds. Or maybe I shouldn’t be writing this because then it will look like I can work. Again, I’d be expressing myself too which might be bad.

My awesome Chiropractor, or Holistic Healing Coach as I like to call him, ordered me to celebrate me feeling better and turning a new corner to improved healing. He said I should shout it out. I still cowered a bit when he said that and he noticed it right away. “Why are you sinking a bit?”, he asked me. I had to tell him I felt guilty. “Guilty? Why? Embrace it! Don’t let anyone make you think otherwise, especially you.” I’m trying Dr. D I’m trying.

Isn’t that the whole point? Shouldn’t I be encouraged to take the time I need to be getting the help I need even financially that by the way is not mooching from the system? Shouldn’t it be OK to see me out and about? (There’s those 2 letters. Uh oh.) Shouldn’t I be cheered on to keep doing what I need to do so I can become even more of an “accepted” member of society? Here’s an idea. Perhaps if I keep doing what I need to do to heal and recover I can go back to working because yes, I do want to be working. Sure I don’t think I can ever go back to doing what I was doing or being in that kind of environment again. It was too chaotic. It was just too much for me. That’s OK. (those 2 letters just keep sneaking up on me). But I’d really like to help people in some way. That would be neat. Maybe there’s a future career in that for me.

So today I declare that I shall not let my own mind become the “OK POLICE”! I shall not let the thoughts, attitudes and feelings of others affect how I live my life. (Oh wow. This might be too much to ask for at once.) I shall not let others get me down.

I SHALL RISE UP!

Perhaps maybe even one day in the near future I’ll be better than “OK”. How cool would that be?

But I have news for everyone who thinks that I should be able to jump into the life of a “working” person. Actually, this brings me to a new tangent. Just writing that line has sidetracked me. I’m going to keep these thoughts in this order for you all to read because sometimes stream of consciousness is so important to help us understand each other. Here’s a thought:

I AM A WORKING PERSON ALREADY.

My JOB is to keep taking care of myself. Do you know how hard that is? How good are you at taking real care of yourself? It is much more than a full time job! Heck, I need an assistant just to help take care of ME. I DO WORK. I still go to AT LEAST one doctor appointment a week. I still have to chase down my medications and supplements. I still have to try to eat healthy. I still have to exercise. I still have to make sure I get enough rest because gosh darn it life is tiring and then adding multiple sclerosis and lupus on top of it magnifies it a gazillion times more.

IT’S WORK.

ANYWAY…back to having “news for everyone who thinks that I should be able to jump into life of a ‘working’ person” as mentioned above before my tangent. MS and lupus are no joke. They are not CHOSEN as part of my life path. They are DISEASES. They literally cause way too much “Dis-Ease”. They are always making me feel something uncomfortable. Yes, I am STILL always feeling a symptom. There has not been a break in years. Over 10 years AT LEAST. And they can get worse and flare up WITH NO NOTICE. They are completely unpredictable.

SO NO. I’m not OK enough to work just yet. I’m not sure I will ever be. This doesn’t make me feel so good about myself sometimes. It’s one of the hardest realities to ever have to live with.

WHY? Maybe we’re not all supposed to be members of the Rat Race. There are so many other ways to live our lives as part of humanity. If we all did the same thing we wouldn’t get anywhere.

So you know what, “OK Police”, try it. Try to tackle me and then what? Because here’s the thing. YOU ARE NOT GOING TO CURE MY MS AND LUPUS. THEY ARE ALWAYS GOING TO BE THERE.

And it is OK (I say this proudly now) for me to be OK. It is OK for me to need your help if I asked for it. It is NOT OK for you not to help me if you are judging all I do on what you read on a screen. (I am sending this message along to an entity who judged me by my writing.) And while I continue along this path of OK-ness I’d really like it if you would at least join me before judging. We can walk together. We don’t have to stand next to each other especially because I’ll still be working on even being “OK” with you being on my path but I’d really like it if you’d try to UNDERSTAND me first before PUSHING ME DOWN and doing your best to make me INVISIBLE.

And to tell the truth to my own mind, since this really is just one big discussion with my insecure sensitive mind, it’s been 2 months since I wrote that lost Blog post about how “I’m OK” and not once have I even caught a glimpse of the “OK Police”. I can let it go now. I can at least try to.

AND I WILL CELEBRATE AND EMBRACE THE FACT THAT I AM GETTING BETTER! Sure it’s not the better I want but it is still Progress. It doesn’t have to be Perfect (dang it), but it’s in the right direction. I deserve a good quality of life just like everyone else. And I am really starting to feel it.

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Doctors: Please Take ME Into Consideration

Full Name: Nahleen Virginia (Knight) Blake. Knight is my Maiden Name. Where did Nahleen come from? Well funny you should ask. I’m sure I’ll have to repeat to you over and over how to say it and how to spell it but let’s get it right the first time. What’s the significance of Virginia? It’s my Grandmother’s Name.

Birth Date: 5/28/77. Thanks! Yes I just turned 36. Uh huh. I’m aware of what 36 means. Wait, what does it mean? Do I dare ask?

Male/Female: I’ll let you guess.

Phone Number: Oh great now you’re gonna bug me all the time.

Any Other Good Numbers to Call?: Nope. And even if there were some I wouldn’t give them to you because you’d chase after me and I’d get no peace. And no you are NOT getting my work number. I made the mistake of telling you that number before and you kept calling me there. Um hi. I’m busy there.

Address: Great. You might stalk me. You’ll at least be sending me bills here. Why else would you want it? Why do I want to give this to you?

Is This a Good Billing Address?: Knew it. It’s all about the $.

Emergency Contact Phone Number: ACK! What’s gonna happen here? There’s gonna be an Emergency here? What if I have no one? And if I give you someone, will you call them every time you can’t reach me? What if that person is across the country? How will they know where I am? Great, now they’ll be worried.

Weight: Does that really matter? Is this any indication of anything? There is no black and white here.

Height: 5’Short–according to my Chiropractor I should be 5’5″ someday as long as I keep going to get adjustments/treatments from him.

Usual Blood Pressure Reading: As if I’m gonna tell you if it’s high. Uh huh. But you’ll take it here in the midst of White Coat Land and freak me out EVERY TIME and take that as a regular reading. Oh you want me to check it at home to get a more accurate reading? How will that be accurate again? I’ll know when I’m gonna be doing it and it will go up.

Usual Body Temperature: 97.5 but you won’t believe me so when you check my temperature and see that it’s 98.6 you’ll say that’s normal and I’ll say it’s high for me and you’ll pass it off.

Hair Color: Well now that’s a good question. Some kind of purple since March 2012.

Hair Type: Pretty dang curly. It’s really short right now.

Eye Color: Blue and to me my eyes are tiny. I also wear glasses so it’s hard to tell they’re as blue as they are.

Birthplace: Homestead, FL (Does that really matter?)

Where I’m From: Kingston, NH

Where I Live Now: Los Angeles, CA

Grow Up With Both Parents?: Yes. I’m blessed to have done so. However, growing up with Single Parents wouldn’t make me less than.

How Old Are They?: None of your business.

Siblings?: Yes. An older sister.

How Old is Your Sibling?: Isn’t that Private? I already said she was older.

Employed?: No. What’s your point? Thanks for reminding me.

Insurance?: Yes. What if I said no?

Are you the Insured? The Primary Card Holder?: HUH?

Primary Insurance?: Ummm…

Secondary Insurance?: WHAT THE?! Leave me alone!

Insurance Information (and everything you didn’t even know you needed to know…): OK. Let me just dig through my purse and wallet and FIND that all for you. Didn’t I just give you my Insurance card? Isn’t it all on there?

Driver License Number: Geez. Nosy! And didn’t I just give you my ID? Isn’t that what this is?

Social Security Number: None of your business. Stop snooping around. I think I need to report you.

Disability?: Meaning what? Yes I have Disability Coverage but don’t get me started about all of that. Am I Disabled? YES! OK?! I think that’s in the mind of the beholder.

Married? Single? Divorced? Domestic Partner?: What does that matter?

If Yes to Married, what’s your Spouse’s Name?: What if I’m not married? I feel like crap now.

If Yes to Married, Spouse’s Social Security Number: Well now that everyone else has been left out…now why on EARTH would you EVER need their Social Security Number?

Allergic to Anything?: What exactly do you mean by allergic? I hope not! Great now you have me paranoid.

Eyesight: Yes I have it but I’m pretty blind. Do you mean do I wear glasses? Yes.

Illnesses?: Must you remind me? (Sigh.)–Multiple Sclerosis, Lupus, High Blood Pressure, Asthmatic Tendencies, Hay Fever, IBS, Prone to Infection, Probably Depression–and now I’ve crawled under the chair in the corner…

Is This a Work Related Accident?: I knew it was an accident I had all these illnesses! Yes! I’ve wanted to blame my work for something! Perfect!

When Did It Happen?: Ummmm…which dates are you looking for? What are we talking about now?

Medications: Hmmmmm. Do you have a whole book I can fill out? This little box here ain’t gonna cut it. And do I include vitamins in this or not? None of you ever know if you care about these or not.

Other Doctors?: Too many to count. Again, looking for a book to fill out. I might have room to write down one doctor.

Can We Contact Your Doctors?: Meaning what? Yes aaannndddd No. How’s that? And will you really contact them?

Any New Doctors?: Chiropractor (not that you pay attention to that because they are NOT in Western Medicine…OH but he’s a doctor too? OK…). Psychologist/Psychiatrist: Yes she’s both.

Symptoms?: Ok great. Thanks for reminding me. Yep. (Tense up).–Fatigue, pain, stiffness, weakness, tingling, heat fatigue, eye light/dark sensitivity (new–and I’m annoyed), dry eyes, dry mouth, cognitive symptoms, emotional symptoms, overall malaise, hair loss, nausea, bloating (hmmm there’s not enough room on here. In fact, there’s not enough room in any of these boxes on here. What the heck? Do you really have any patients who can fit their life/health histories in such a small space?)

WHAT KIND OF A FORM IS THIS?

*THESE ARE JUST EXAMPLES OF WHAT I’VE BEEN ASKED OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AGAIN!*

Seriously, doctors, nurse practitioners, physician assistants, medical assistants, nurses, office staff, lab technicians, etc.: How often do you really look at these? Are you even looking at these? And do I even want ALL OF YOU to see EVERYTHING I just answered? That is a flat out NO! And why isn’t there an overall database that all medical professionals have access to? Why do I have to KEEP filling out all the same questions? Why is each form different? Why can’t they be uniform? I’m tired. I’m tired of writing all of this down. I’m soooooo over rehashing all of this.

I AM NAHLEEN.

What does that mean? That means I’m a Person. I mean something. I’m not my penmanship (which used to be really good btw until I kept having to write these answers over and over again). I’m not just my name. I am 3D. I have Depth. I giggle a lot. I’m struggling all the time with my diseases. I’m not working and that was one of the hardest decisions to make. I’m afraid to say I’m feeling better because I don’t want you to think that I’m all better and shut off when I tell you that. And who knows who will be looking at these files/records and will assume I’m magically all better and then what? I don’t fit in a box. I don’t come in black and white. I come in many colors. Perhaps that’s why I express the purple that’s within me. Yes, my hair is purple. That doesn’t mean I’m happy. That also doesn’t mean I’m crying out for attention. Purple is a part of who I am. Purple has been a part of my soul since I was at least 10. That’s a long time. Can we get passed my purple hair? Thanks. Yes, I have a husband. We’ve been together 15 years. Married 6. Why does the part where I’m married mean more than the commitment of the relationship of 15 years? Yes, I have a weight problem. I’d think I myself would be the most aware of this at all times since I have to live with me. I have ALL MY LIFE. Sure I don’t get to exercise as much but how much do I need to do necessarily? I’ve been walking every day now for 401 days! I know it’s cool. You better think it’s cool! I stretch every day too. Cardio? I try. Coming here to all of my doctor appointment should count as cardio. I’m serious. Oh and did you ever ask me how I am? How I’m feeling? How I’m really doing with all these illnesses? You want me to come in next week too? Did you ask if I’d feel up to it? Did you take into account my life? You are not the only doctor in my life. You are not the only part of my life. You want me to try a new medication? Oh it only has THAT many side effects? Will you be able to pay for it? I’m currently low on funds. Did I mention to you that I’m going on a trip soon? That I want to do more than go to doctors? That I want to have a fulfilling life not focused constantly on medical crap? That I want to try to live my life not ALWAYS talking about my illnesses? Not being defined by these life disrupters? Did you know I have a Cleo Kitty? That I love to write. That I have a Honda Fit that I love? That I miss my family and loved ones back east like crazy? That I’d love to be a Producer of TV, feature films, short films, videos of any sort and to be that creative and not worry about how much time that would entail and how much that would wear me out? That because I’m always seeing you I get really tired and don’t have a lot of time to be social? That I love to be social? I almost forget this myself because I’m so caught up in stuff with you. Don’t get me wrong. Thank you for helping me or trying to. Thank you for helping me feel better (well at least a lot of you–I won’t talk about the others). Thank you for being proactive and part of my time.

BUT PLEASE TAKE ME INTO CONSIDERATION.

I am a person. I have a life. You take up a lot of me. I don’t see you for fun. I see you to get healthy. Perhaps we need to take a look at the best way to keep me healthy. Is it by seeing you all the time? Filling out these forms? Getting my arm constantly squeezed by the blood pressure cuff only for it to spike when I’m there? Is it by constantly talking about my weight? Is it by constantly stabbing my arm to check my blood work levels over and over again because you haven’t been in communication with my other doctors about my blood count levels that were taken just last week? OR is it by spacing out these appointments a bit more? By letting me expand and grow my life to see what I can do and not do? By taking the time to see that I am a human being who needs to breathe and to LIVE and experience the world as this newer more enhanced version of Nahleen???

I’m not the same Nahleen who was working 3 years ago and pushing to do my best no matter what cost it put on my body and my life because I didn’t know or understand anything different. I am a Nahleen who is feeling out my boundaries. Who is not willing to be horribly sick again if I can help it. Sure my body might have its own plans but I will not push it too far. But see I don’t have much chance to see how far I can push. If am pushing, it’s to see my therapist and chiropractor while I’m seeing my other doctors. And these 2 new medical professionals in my life are helping me to figure out how to be a Nahleen with purple hair who still has a chance to smell the roses and look up at the sky (3 of her favorite things were just mentioned here), wants to figure out where her place now is in the world, wants to be social and not live within a medical professional tunnel of health, wants to try new things, wants to do more than rehash her health stuff over and over and who needs to BREATHE!

So if I tell you I can’t see you next week and there is room to BREATHE without putting my entire health at stake (I understand sometimes there are exceptions), please give me that room. You have your life schedule. I have mine. Please respect that. And if I don’t have time to see you, please COMPROMISE. With all due respect, it’s not all about you. You are not my only doctor. You are not the only thing going on in my life. Let’s talk about this. And PLEASE, don’t give me less care because I didn’t put my life aside to come in and see you and pay you more money. There is a phone. There is email. There is always another way.

THANK YOU.

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Today Is World Lupus Awareness Day!

“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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Love Will Help Me Know My Name

First of all thank you to Seal for this absolutely amazing and beautiful song.  You and this song have carried me through many many hard times.  Too many to count.

I haven’t posted much lately because I’m really working on me.  And what’s been happening is that my body and mind are trying to keep up.  They are trying to keep up with the past and the present while keeping an eye on the future without trying to FIGURE IT OUT.  That’s a lot of hard work.  A lot of introspection.  A lot of NOT CARRYING it all anymore.  A lot of Change.  AND–a lot of rest.  A lot of quiet time.  A lot of landing as I float and spin around in all of this.  I feel as if I’m in a snowglobe where it’s all so pretty and all the snow is spinning and swirling around so beautifully and at some point I know it will settle.  I feel it inside.  I have the faith.

For the first time ever I feel the most UNSAFE bringing it all up to come out–you know, that emotional crapola we all stuff in way too deep and it is very poisonous.  I feel raw, vulnerable, exposed and oh so strange…Yet at the same time, I feel the most SAFE I’ve ever felt too.  I know I’m in good hands.  I feel the most supported, the most loved, the most taken care of I ever have in my almost 36 years.  And I’m not going to think too hard about that number of 36 because it is ONLY a number.  And how cool.  I am headed to another year by the end of this month of May.  Some people don’t get that chance.

What has been the most potent in my Healing has been all of the LOVE surrounding me and all of the LOVE I’m able to give.  LOVE is truly powerful.  I used to feel like talking all about LOVE was hokey, or that I’d be judged for being some light fairy silly chick with flowers in my hair.  Well, first of all, I now want more flowers in my hair.  There is nothing wrong with LOVING LOVE.  The world needs more of it.  We all need more of it.  We also need to give it.  Heck LOVE even needs LOVE.

And what I am finding is that I LOVE LOVE.  Without LOVE I don’t believe I’d survive right now.  There is TOO MUCH.  Life can be TOO MUCH.  But with LOVE I feel a sigh of relief.  I don’t have to have any expectations with LOVE.  It is all around me.  It is all around us.  I just gotta let myself feel it and feel it even more.  You know earlier I said without LOVE I don’t believe I’d survive right now.  I also want to say that without multiple sclerosis, lupus and IBS I don’t know that I’d understand LOVE the way I do now.  I had to slow down. To smell a flower.  To watch a flower. To look up.  To see the tall trees.  To see the clouds.  To see the sun.  To see the birds fly and float in the wind.  I have had to talk to more people in general.  To connect in ways I have never had to do before.  I have had to survive.  Right now I have so much LOVE surrounding me and given to me that I’m really trying to let it all in.  I’ve learned I don’t let it in enough.  Breathing it in helps the most.  One of these days I’m hoping to feel settled enough with this Nahleen I’m getting to know so that I can give out all this LOVE I feel to others who are in need of it without depleting myself too much.

And with LOVE–LOVE has helped me know my name.  That is one of the lines of this wonderful and passionate song Seal sings.  I wanted to share it with you all.  The more I hear this song the more it changes me inside and outside.  It has changed my life.  Thank you Seal.  Thank you all.  I hope it touches you as much as it has touched me.

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Consistency Would Be Nice

Um yeah hi ILLNESSES!

Yeah you multiple sclerosis, lupus, IBS and any other physical issue associated with my body that causes discomfort. I’M TALKING TO YOU!

Why is it that when I CRASH into FEELING CRAPPY mode it takes no time AT ALL usually to get to that place BUT it takes a bazillion years longer to RECOVER, FEEL BETTER and HOPEFULLY MORE LIKE MYSELF?!

Here’s the other part of that:

Why is it that when I’m RECOVERING I may not actually get back to where I was but a different place? It may not be a worse place mind you, but a DIFFERENT PLACE?

CONSISTENCY OF BETTER WOULD BE NICE.

I know I know. I’ve been asking for this for years and it still hasn’t happened BUT I’M STILL GOING TO RANT ABOUT IT FROM TIME TO TIME!

DANG IT!

I’VE SO HAD ENOUGH OF YOU MAKING ME FEEL CRAPPY! NO MORE! YOU’RE ALL DONE! GO AWAY! (Yes I know it was probably more side effects from a poisonous medication yet I still have the same feelings about it–after all I am trying to have a life).

And you’re still here with me and I’m still recovering…WITH YOU.

Back to resting…to feeling sad…to feeling frustrated…to feeling relieved…to be feeling like I’m turning the corner to me again.

The key word being:

AGAIN…

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Telling the Truth is Really Hard

TRUTH: The past 24 hours have SUCKED mostly physically but mentally too!  There I said it!

I TOLD THE TRUTH!

DETOX IS HARD!

ANOTHER TRUTH!

Being on an emotional roller coaster yesterday for HOURS was REALLY HARD!

MORE TRUTH!

Feeling A LOT OF PAIN, FATIGUE WITH HEAVY LIMBS, SHAKINESS, LIGHT-HEADEDNESS, WEAKNESS, TINGLING, WAKING UP IN THE MIDDLE OF THE NIGHT WITH A HORRIBLE KNIFING PAIN ON MY RIGHT SIDE (making me freak out it’s my appendix or something crazy) AND HAVING TO RUSH TO THE BATHROOM (TMI–just getting you ready) ONLY TO HAVE MY BELLY MAKE THE LOUDEST RUMBLING NOISES AND THEN ACTUALLY HAVING THAT TRIP TO THE BATHROOM BE PRODUCTIVE (used to not be in the middle of the night and I would suffer for hours so that’s something) AND THEN HAVE THAT PAIN GO AWAY BUT FEEL THE DIGESTIVE AFTERMATH IS REALLY HARD!  BUT–THANK GOODNESS THAT KNIFING PAIN WENT AWAY AND HAS NOT COME BACK.

YES I’M YELLING!

PHEW!

It feels so good to get it out.

I have only had 2 Chiropractic treatments in the past week, BUT I have also added an Alkaline Water Detox prescribed by this Chriropractic Doctor added to my treatment so it has been extra potent.  I CLEARLY have a ton of acid in my body.

IT HAS BEEN 1 WEEK AND MY BUTT FEELS KICKED FROM 2 CHIROPRACTIC TREATMENTS?!

OY!

You know, I have heard over the years from all kinds of people on social media and elsewhere talk about all the “GOOD” effects of Detox of the body.  NOT ONE OF THEM THAT I’VE NOTICED HAS EVER TALKED ABOUT ANYTHING NEGATIVE.  Did they ever feel anything crappy going on in their bodies or was it just absolutely divine and magical with birds chirping with light breezes as they frolicked over the rolling green hills singing songs from the “Sound of Music”?  That’s what it’s always felt like to me.  So I have no idea if these people have EVER felt crappy.

Is it because they don’t want to tell the truth because Gawd forbid they look weak?  Is it because they really are feeling JUST PEACHY (although if you ask me I’d never say I was Peachy because I CAN’T STAND PEACHES so it would be the opposite for me if I said I was PEACHY.  In fact let’s all make that note now.  PEACHY for me is CRAPPY.  OK then.  Now that we’re all clear.  Back to my ranting…) KEEN?  Did I even spell that word right?  The point is, AM I THE ONLY ONE WHO HAS FELT CRAPPY FROM DETOX?  AM I THE ONLY ONE WHO IS NOW TELLING THE TRUTH?

MORE ON MY TRUTH:  Okay.  So for the past 24 hours I have wondered what wall I hit this time.  In some ways I haven’t felt like this in a long time.  Felt like someone kicked my butt and the rest of my body really hard.  What’s interesting is that the first 24 hours after treatment were actually QUITE GOOD.  I think I was on a mental high and my body was TRYING to follow along.  I felt so much mental clarity and relief and life almost felt like it was ALL good no matter what.  I almost wanted to skip down the street singing “La la la” but my legs weren’t QUITE up to it.  Oh and just to be clear, I didn’t feel up to frolicking through the rolling green hills singing songs from the Sound of Music.  I wasn’t THAT good.  That’s good right?

Anyway, I did so much in that 24 hours because I thought, WOW, I can do this.  This Chiropractic treatment stuff rocks.  It was ONLY the 1st Treatment that would be really hard at first.  Perhaps I’ll be feeling this later but not now.  LIFE IS GOOD.  I got home, made some medical business calls, wrote a Blog post, did stuff and things and I DID let myself REST a bit BUT THEN off I was running out to get groceries that evening while my mental hyperactivity was still on overload (I think now that I look back).  I mean, we NEEDED groceries and my head told me it was RIGHT then no matter what.  So I left at 6:30pm and by 7:30pm as I was almost done my ARMS started telling me they were really tired and didn’t want to work much more and then they were in pain.  Then by 8pm my BODY was done.  By 9pm my MIND was done.  And yet there was still some clarity so I stayed up way too late.  I CONFESS.  I didn’t LISTEN enough to my body at that point.

Got up for a dang Fasting Appointment the next morning to have blood work done with a doctor I have VERY mixed feelings about and thought all was going to be OK.  I was still OK.  Sure I was tired but Fasting Appointments are really hard for me.  My body with its MS, lupus, IBS and you NAME IT needs its routine.  No food means no medications.  No medications means my body is already unhappy.  No food yet already being active when on a normal day it usually takes me over 4 hours to really feel like I can go on with my day as a human being is not a good thing for me.  At least let me have some food.  PLEASE.  If my body lets me that is…

ANYWAY, after the appointment, I ate and I felt a bit more invigorated YET to be honest my body was starting to protest more.  And then I ran around doing too many errands at once when I should’ve just gone back home to at least get some more rest before doing them made my body VERY UNHAPPY before 12pm.  The appointment had been at 8:30am.

BY 12PM I had HIT A WALL.

ALL DONE.  Had to push to do the basics.  The emotional roller coaster (was told this would happen even more and be magnified according to my Chiropractor as the emotions are cleared out and released from my body and it was ALL part of the healing process) started for the next 5 hours at least, my body had a hard time letting me do the basics like get up and move around.  It was shaky and weak and in pain.  SOOOO DONE WITH ME.

So I rested.  AND RESTED SOME MORE.  Resting helps.

RESTING HELPS.

Phew.  Sometimes resting doesn’t ALWAYS help the way I want it to.  My body has been recovering ever since.  I’d get waves of physical symptoms into the night last night and then there was that time in the middle of the night of complete and utter pain and discomfort and I’ve been working through that ever since.

SO GLAD I CAN WRITE THIS.

Yesterday I wouldn’t have been able to write this in any way.  ALL OF ME WAS DONE.

DONE.

But this Blog post has been bubbling up to the surface ever since I FINALLY was able to really get up out of bed today.  EXTRA SLEEP HELPED TOO.  I HAD TO WRITE THIS TODAY.  I HAD TO EXPRESS MYSELF.  I know it is all part of the healing.  I call it EMOTIONAL HAIRBALLS.

Meanwhile at the same time, as I think about how my body is overall, I know it’s not a regular lupus/multiple sclerosis flare.  I know my body is flaring up because all kinds of healing trauma (WHAT?  HEALING TRAUMA?  Parts of me want to object to what I just wrote and argue with me.) because it feels cleansing.  It feels like all kinds of toxin crapola is being FORCED out.  My mind is clearer.  My body is clearer.  So strange to say that and feel it and NOT REALLY BE ABLE TO DESCRIBE IT.

So the FEAR comes up.  Is this Treatment too much for me?  How will I do this?  I DON’T WANT TO MAKE MY BODY WORSE.  I CAN’T MAKE MY BODY WORSE.  I DEAL WITH ENOUGH.  IT’S HARD ENOUGH.  But then the nurturing side of me comes in and gently reminds me that I am feeling better at the same time.  I’m going to NEED TO BE VERY UPFRONT with the Chiropractor tomorrow at my next treatment and tell him EVERYTHING that has gone on in the past 24 hours BEFORE he jumps right in and manipulates my body into its relieving craziness of the next treatment.  He had told me it would be hard especially at first and to try to trust and be honest with him and myself in all ways at all times about how I’m doing.  That we would adjust treatments accordingly.  He also told me I’d have to rest more.

That’s hard to do.  I’m TRYING to have a life and I have SO MUCH going on right now.  FINDING BALANCE is a whole other issue I’m dealing with.

WHERE DOES IT ALL FIT IN?

Well what I have to remind myself is that it all fits in the way it is supposed to fit in.  It will all work out and it will happen or not happen BUT the world still turns.  It doesn’t explode because “MY PLANS” didn’t work out the way I liked.

DO THEY EVER?

SO WHY DO I KEEP TRYING TO FORCE MY PLANS OVER MY LIFE?  It doesn’t work that way.

So for now I’ll go back to resting and doing THE BEST I CAN WITH WHAT I HAVE.  It feels really good to have communicated this today.  Thank you ALL for reading.  It means so much to be able to get it out and STOP HOLDING ONTO IT.  Something tells me this may not have come out if it wasn’t for this detox and new treatment journey I’m starting.

I feel much better and calmer right now and I will enjoy it while I can.

Take care all and please if you can, be gentle with yourself and your body.  Healing can be really hard but what I’m discovering is that I’m worth it and so are you.

 

 

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325 DAYS I’VE BEEN GRATEFUL TO TAKE A WALK

-GRATEFUL to be able to move my legs.

-GRATEFUL to be able to stand up.

-GRATEFUL to be able to put one foot in front of the other.

-GRATEFUL to still be able to walk on my own with no assistive device.

-GRATEFUL to have taken a walk 325 days in a row as of TODAY!!!

Ten years ago today if you had asked me if I thought with multiple sclerosis I’d be able to walk today, I would’ve been afraid to even think of an answer. It was way too far ahead to even comprehend. Yet I’ve lived my life since my diagnosis of MS in 2002 as if one day I might not be able to walk…or I might not be able to walk as well…or I’d have an exacerbation of symptoms and I’d lose movement in my legs…or I’d be using a cane…or I’d have to use a walker…or I’d have to use a wheelchair…or that the MS would progress making it harder and harder to move my body all over.

Then there’s lupus that just had to make its way into the picture because I didn’t have enough to think about and that can also affect my walking. The joints can get very stiff, swollen and in pain and I hobble around sometimes. The fatigue with both can drive me crazy.

I know people with MS who have a hard time with their legs and are in need of assistive devices. I know people with MS who used to be in a wheelchair but aren’t now. I know people with MS who don’t have any problem walking at all. I am getting to know people with lupus who have similar issues. I myself have a problem with balance at times, I get the foot drop, my feet can give way under me and I can fall (hasn’t happen in awhile), I trip quite a bit, I’m clumsy, I have stiffness, pain and spasticity in my muscles in my legs that come and go. I have ankles that like to roll and that’s not necessarily from lupus. That can just happen. I can often feel like my legs just aren’t strong enough to go down hills so I’ll ask Corey for his arm just so I can feel more stable and not as wobbly. (That hasn’t happened as much since I’ve been walking every day.)

So EVERY DAY in the beginning of all of this crap, I used to wake up in FEAR that my body or at least some part of my body would not be able to move.

EVERY.

DAY.

Then as time has passed I’ve found myself often taking it for granted that I can even walk at all. That I get a chance to walk on my own two feet and take a stroll EVERY DAY is a miracle.

EVERY.

DAY.

I am blessed with the chance to STILL get up every day and be able to move my legs enough to WALK even for 5 minutes. That’s all it takes to take a walk. The POINT IS TO MOVE MY LEGS. I get to walk on my own still. I don’t know if that will ever change and I’ll admit I still have that FEAR cloud lingering over me like a veil it seems but it is just there because ANYTHING CAN HAPPEN AT ANY TIME TO ANYONE BUT NOW WITH MS AND LUPUS I HAVE AN INCREASED CHANCE OF VERY “UNFRIENDLY” (a friend used this word about her physical symptoms and I hope she doesn’t mind that I stole it), symptoms occurring that can be debilitating to my body and not only can they be debilitating BUT I will have NO IDEA whether I’ll be able to get that part of me back or not. AND I HAVE NO IDEA OR WHEN THE NEXT ATTACK/FLARE WILL HIT OR IF IT EVER WILL… Only time tells that part.

So at this point, as long as I can I will…

WALK.

AND WALK.

AND WALK.

IT HELPS SO MUCH. My legs have improved greatly.

I am truly grateful and blessed to still be able to walk.

WHAT A GIFT.

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