Posts Tagged With: Gastroenterologist

I Survived the Hydrogen Breathing Test!

Well.  That’s over.

I did it.  I’m still recovering and settling in but it was OK.

I did the test with one other gal who was pretty pleasant.  Another person was supposed to do it too but she showed up too late and they rescheduled her.  I don’t even think she was ten minutes late.  Phew.  Glad I got there early and stuff.

Anyway, first we had to drink this cup of water that had this weird sugary powdery not so yucky but not so good stuff in it.  Then we had to blow into this bag/balloon thingie and this tube and apparently it was measuring things and stuff from my breath.  CRAZY.  From what I read, it was measuring the amount of hydrogen I was producing just from my breath and that’s supposed to tell them if I have any small intestine bacterial overgrowth because I guess some of the bacteria can produce hydrogen.

WEIRD HUH?

Anyway, so I hadn’t eaten since 8:30pm the night before and was really dragging and doing things like almost punching Corey in the eye while saying goodbye to him this morning while he was still waking up in bed. Then I was draggy and words weren’t registering when I got there when others talked to me.  Then I was achy and creaky and all I wanted was water. I kept trying to reach for my invisible water bottle. So used to always having some water. And my body was so confused because it was out of routine and I hadn’t taken any meds yet and then it had to drink this weird stuff.

So then my belly reacted and everyone was like “UH OH” but I think it was just like–“What the heck is this crapola and where’s the real stuff”? because then it seemed to calm down.  Then every 20 minutes this nice lady would come in and have us breathe into the bag and tube and around and around we went. One time I lost track of my concentration and was worn out from doing this breathing stuff and first sucked in and then had no air left to go out but she said it was still readable so OK.

I tell ya though, drinking water and eating afterwards was GLORIOUS!  I’m so blessed to be able to drink and eat when I’m allowed to and have enough money to do so.  I know some people have to go days without drinking or eating and never know when they’ll be able to do so again so I was trying not to get too whiny about it, BUT IT WAS STILL HARD.  I’ll admit it.

MY BODY WAS OUT OF ROUTINE.

So I have been spending the rest of the day trying to get myself back.  I’m pretty wiped and yet I’m so glad that my body is strong enough to be able to handle such a strange experience to go through that is completely out of my comfort zone.  I know there is a reason I haven’t taken the test until now.  I would’ve been much more of a mess before if I had done it in the past.

Monday I see my doctor and hopefully I’ll find out the results.  FINALLY.  Been thinking about taking this dang test or something like it for years.  I didn’t know what I’d be in for but was told and cautioned by my Gastroenterologist at the time to be cautious and to wait if we were to do it at all because it may take a really big toll on my body.

Well it hasn’t been awful.  It’s just been uncomfortable and thankfully I didn’t have anything else planned that I HAD to do so I was able to REST MORE today and into the evening.

So that’s that.

Another test I can check off my list.  Oh the strange things I do to find out what’s going on in my body…

GOOD TIMES!

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LIFE: ALWAYS IN SESSION (A BLOG POST NOVEL BY NAHLEEN BLAKE)

THIS IS MY 150TH BLOG POST!  Woo hoo!  Go me!  I think part of me was holding off posting this HUGE MIND BLOWING BLOG POST for my 150th because my goodness, it’s my 150th post!  There should be fireworks and you should all be touched FOREVER by all that I have to say. 

OK.  Well, first of all…EGO.  Yes, I have one.  It can get in the way but it helps sometimes…I suppose.  Second of all, WHAT THE HECK?  Fireworks?  Really?  I’m so weird.  I get one compliment from someone and I feel like I don’t deserve it and WOW “they really like me” and my favorite quote that Corey always teases me about, “I’m just being me” as if I’m not good enough for a compliment.  BUT THEN, I want to have words that LIVE ON FOREVER AND EVER?!

Well, no wonder no Blog was coming out.  Conflict and pressure.  Geez!

ANYWAY…

To be honest with you, I don’t know what’s going to come out of these hands as I type.  My head has been all over the place and there has been so much of life happening that I think it almost silenced me.  I know.  HA!  Yeah right!  But it kinda did.  I mean, I had to have a Blog post in order and outlined (not that I ever have…Ahem) before it had to be written.  I had to have a clear head before I wrote it.

Um, it’s the New Year.  Is anyone’s head clear right now?  Is anyone’s head EVER clear?  Really clear?  I mean, like it’s all in order.  I doubt it.

So here I am and this may be a stream of consciousness.

BUT before I go any further, I want to make sure to hit on a few things before I go off on tangents again:

1. HAPPY NEW YEAR 2013!  Turns out the world DID NOT end and we are all still here…I think.  Well as far as I know.

2. WELCOME to all my new followers.  Thank you for helping to encourage me that past posts are worth following.

3. THANK YOU to all of you for joining me on this crazy journey called life and what I like to call, “Life In Nahleen’s Head”…I hope you’re all wearing your seat belts.  My head can get crazy and I’m sharing it with you.

4. TOPIC (at least I think this is what the topic is for this Blog) “LIFE: ALWAYS IN SESSION”.

You know, the first time I heard those words from a very wise person I know, I was beside myself.  How profound that sounded.  How simple that idea is.  Life is always in session.  There’s always something going on.  There are always errands to run, people hurting, happy people, the weather continues to change, and really nothing stays the same does it?

So why is that idea so hard?  Why is it that it’s so hard to accept that life is always happening and changing?  Well, for me it’s that YET AGAIN, I gotta morph to it and be flexible.  Ew.   AND if a new event pops up in my life, that doesn’t mean the rest of life STOPS.  Wouldn’t that be great to be able to stop all of the other stuff, you know like stop time whenever we want and how we see in fantasy/sci-fi movies and they make it look so easy with their special effects, that we STOP everything else so that we can take care of this SPECIFIC thing that’s happening?

But then, if it’s something that’s really hard to deal with, then we have to be ready to deal with it.  So, then when do we stop the rest of what’s going on in our lives?  And hey, maybe we don’t want to stop that other stuff.  Maybe it’s the other stuff that helps to keep us going right?  Or maybe it isn’t. 

But the point is: LIFE IS ALWAYS IN SESSION–DANG IT!

I had to add that extra part because well, it’s how I feel most of the time even if there is more than one good thing going on, well then what comes first?  How do I prioritize?  How do I process it all in my crazy filled head?  Isn’t it already filled to the brim?  How can it take on more?  Should it take on more?  Does it need to be handled right away?  WHAT’S GOING ON?

ACK!

Then I turn into the loveable Tasmanian Devil from those wonderful Looney Tunes cartoons of the past and away I go.  But where do I go?  Usually I’m just spinning in place.  But if I’m spinning, I probably don’t have my feet firmly on the ground now do I?  I probably haven’t paused to breathe. 

AND MY HEAD JUMPS IN RIGHT NOW AND ASKS:  WHAT?  BREATHE?

What’s breathing?  Well, there’s the involuntary breathing that thank goodness our bodies are already programmed to do.  Thank goodness for that huh?  I mean, imagine if we didn’t have that involuntary process.  Hmm.  Oh how different life would be.  Would we make it as humanity?  I don’t know about you, but quite often I find myself forgetting to take those intended deep breaths that help get the oxygen into my body and brain and usually help me to relax and calm down even a teensy tiny bit.  So then I’m sort of I guess holding my breath.  Well that’s not good.  The body needs to be doing both kinds of breathing in order to survive the best way: involuntary and voluntary.

SO WHAT AM I GETTING AT HERE?

Well, somewhere along the way in late October or November (or maybe I had never REALLY found myself even a bit at all) I LOST MYSELF.  Where’d Nahleen go?  I’m sure she was there.  I speak of myself in third person on purpose.  She was out there handling the world the best way she knew how.  The holidays were coming upon us.  Cleo Kitty was going through a bit of a hard time and we had to cancel our little Wedding/Together Anniversary Trip to stay with her.  Wouldn’t have changed that for anything but I think it played a part in things.  (I haven’t had a chance to get away for over a year due to either my health or Cleo’s, both or just life reasons in general and I’m feeling it.)  But then, Cleo got so much better and we nursed her back to health, after bringing her to her wonderful new vet who was ONLY a second opinion vet for her back in February of 2012 because we thought she was dealing with cancer. 

BUT then come to find out a few weeks later with a very different care regimen for Cleo, that she was UNDIAGNOSED with cancer because it had been a year since her DIAGNOSIS OF PROBABLE CANCER (Corey and I had made the decision along with Cleo, NOT to do any invasive testing on her and to just let her be a kitty and keep her comfortable as long as she needed it) and as her new vet told us, she was showing NO SIGNS of these probable cancers and she DEFINITELY WOULD BE BY NOW–and that was in November 2012 I believe.

Well, then how AWESOME WAS THAT?!  A true MIRACLE!  I would love there to be more UNDIAGNOSES FOR ME AND ALL MY LOVED ONES AT THIS POINT.  She does however have a very sensitive immune system like I do (oh the parallels of our health together can get a bit too creepy sometimes if I think about it too much) and probably has asthma, IBD of some sort and probably chronic upper respiratory infections that will affect her off and on so we gotta find balance with that.  BUT STILL!  As Corey put it, there was no DARK LOUDLY TICKING CLOCK (Edgar Allen Poe comes to mind) HOVERING OVER OUR LIVES ABOUT how many days Cleo had left.  Sure, she’s older and has immune issues but her life is wide open.  AND YOU KNOW WHAT?  She’s doing EVEN BETTER now.  It helps to be told you don’t have cancer and to see that your people are even brighter about you now I’m sure.  I believe she’s more youthful than she’s been in a LONG TIME.

So yay about that right?  OF COURSE!  But I think it lifted me off the ground even more and it was hard to trust anything after that.  What was real?  What wasn’t real?

THEN THANKSGIVING HAPPENED.  That was a great day.  It was so nice to be of service to others.  Corey, our friend Aaron and I volunteered at a big event that welcomed ALL to come together as a COMMUNITY and cook, eat, cut hair, make crafts, have a kids carnival in the morning, dance, sing, get free check ups from doctors, get family photos, give away and pick up free clothes and the list goes on and on.  Apparently, the event was an absolute success.  I had the PRIVILEGE of being a VOLUNTEER to sit and eat with people and talk to them.  Well, that’s no problem for me now is it?  To be honest, it was a bit awkward at times.  Usually if it was a family I sat with (I think I sat with at least 4 different families as the event went on) and there were kids, it was the kids who were talking to me, not the adults.  Well, that was fine.  I love kids.  I always have and find them very easy to talk to.

MEANWHILE, as all of this was happening, I was still waiting for Social Security Disability to come through and get their payments to me correctly because it helps to have money but at the same time, I saw all of these people who had so much less and it started to not matter.  At some point along the way, I don’t even remember the day which is AMAZING, they did come through and it looks like the payments are FINALLY coming in right after 2 years of waiting for them to get it right.  Still have a few things to iron out with that but I’m ok.

I DON’T REMEMBER THE EXACT DATE THIS ALL CAME TO A HEAD, (again, Amazing that I don’t have the exact date etched in my head), BUT MY DIGESTIVE SYSTEM STARTED FLIPPING OUT AND I COULDN’T EAT ANYTHING WITHOUT FEELING LIKE MY STOMACH WAS LURCHING AND TRYING TO JUMP OUT OF MY BODY.  I’m convinced that the writers/producers of the movie “Alien” had had digestive problems of some sort because THAT IS WHAT IT FELT LIKE…I couldn’t eat a half piece of toast without feeling like my organs were trying to jump free from my torso.  SOOOO, after being on those HORRIBLE digestive antibiotics for what I’m now finding out was way too long, I found myself in the ER.  I had asked my original Gastroenterologist at the time if I should go and he told me NO.  Well, it’s a good thing I listen to my own body because I called Corey and asked him to come home from work and drive me to the ER.  I couldn’t take it anymore.  It was the day of the huge storm Sandy on the east coast.  I think my timeline is off here but oh well.  Anyway, I remember that because there was a TV in the ER Exam Room I was placed in and I got to be entertained and mortified at the same time (I’m a weather geek but I do have a heart) while I felt so horrible.  They did bunches of tests and gave me some drugs, said they didn’t see a lot but sent me on my way.  I did feel a bit better but I needed more than that.  I found a way to be referred to a second opinion gastroenterologist (was a bit roundabout because my group of doctors pretty much all know each other and are all kinda in it to help each other and I knew I wouldn’t get very far asking my Primary because he’d still stick with what the original Gastroenterologist doctor had said to do and that would’ve gotten me in more trouble) and was able to see this new second opinion specialist almost immediately.  What’s great about going to the ER is that all kinds of tests were done and having been an experienced veteran of the ER experience I was somehow with it enough to ask for all files and records of what had been done so that all of my doctors could get these answers.  So glad I did that.  I brought all the records and results to this second specialist and after a few questions (the right questions I guess) I was able to get a fresh perspective about what might be going on with me.  He is now my current Gastroenterologist.  I won’t go back to the old one.  The old one helped me so much for two years.  I need this new guy.  He’s very calm and calming, he knows exactly how to handle a crazy planning person like me, he keeps me much more present and in the moment, he is very clear about what he knows and with his help I was able to be diagnosed with IBS or Irritable Bowel Syndrome.  I’m still currently on a treatment to help get rid of the flare but if you ask me it’s been long enough.  That’s just my head.  Honestly, how cool that this is a medication that I don’t have to be on FOREVER and that my diagnosis wasn’t too hard this time.  He said EVERYTHING I’ve told him of my symptoms and feelings is sooooo common for IBS that he has no doubt.  WHAT???  I have something that was easy to diagnose.  It’s never happened that way before.  Almost felt like something wasn’t right.  With this new doctor’s help I have been feeling much better since.  The flare is not cured just yet and may never be where I want it but with his help, he has GREATLY CHANGED THE QUALITY OF MY LIFE.  I had NO IDEA how much my body was really suffering from this issue flaring up like it was.  NONE.  SO YAY ABOUT THAT.

SO AT SOME POINT THAT FIRST WEEK AFTER THANKSGIVING, a crazy switch went on in my head and I started feeling what I call HOLIDAY AFFECTIVE DISORDER.  Some call it SEASONAL AFFECTIVE DISORDER but I use Holiday instead because I start to really feel different and like the decorations have to be up, the gifts have to be bought, I need to bake, will I feel OK to do any special event and the list goes on and on and on.

SO AS MY HEAD STARTED ITS HOLIDAY CRAZINESS, the next thing I know, I FEEL AS IF THE FLOOR AND THE WORLD ARE BEING PULLED OUT FROM UNDER ME…Why you ask?  Well, the Private Long Term Disability Company that I was also getting assistance from, had been doing a two year review of my health and my case.  They bothered all of my doctors yet again with requests for records, files and very vague evaluations.  Oh and I had to fill out my own assessment form too.  My two years is actually not even up until January 29th, 2013 so isn’t that interesting.  BUT on November 21st, 2012 they decided that they would terminate my coverage and not tell me right away.  BECAUSE OF THIS LONG TERM DISABILITY COVERAGE that I had been paying for at my Old Employer for over ten years while I was still actually working, I was able to be covered by THE AWESOME HEALTHCARE PLAN of my Old Employer up to five years as long as this Disability Company said I was Disabled.  NOW THIS WAS NO SURPRISE that they terminated my Disability Coverage.  I had been warned from the beginning by the first Claim Manager I dealt with in that Company that at the two year mark it would be really hard to get coverage.  But see here’s the thing, I ONLY FOUND OUT because I got something really weird in the mail about how much they were paying me in November (it was much less) and no explanation for it.  So ME BEING ME, I called the Claim Manager to inquire about it.  THIS WAS THE LAST WEEK OF NOVEMBER 2012.  She got a bit tense and quiet and said that oh no, the mail must’ve been delayed for some reason and the two items sent in the wrong order or something but that my coverage had been terminated as of NOVEMBER 21ST.  That was the day before Thanksgiving.  I did my best to keep my cool with her on the phone and made sure she explained the Appeal Process but she really didn’t want to do that and then I got off the phone. 

I FREAKED OUT!

Well, of course I did.  First, I find out the hard way that I don’t have their coverage.  Then I KNOW THIS MEANS I’M LOSING REALLY AWESOME AND GREAT HEALTHCARE COVERAGE.  So, I called the Director of Benefits at my Old Employer and told her the situation.  I called her on NOVEMBER 28TH.  She told me she was very upset for me and for her department because this Disability Company had put US ALL in a bind.  WHY YOU ASK?  Well, ignoring the obvious reasons of this all sucked, it meant that my HEALTHCARE COVERAGE WITH MY OLD EMPLOYER WOULD HAVE TO BE TERMINATED BY THE END OF THE MONTH.  Yes, you understand.  NOVEMBER 30TH would be my last day of COVERAGE…

WHAT?!  NOW WHAT?!  FREAKAGE GALORE!  The Director of Benefits apologized to me for this situation, I told her how the Disability Company had handled it and told her some more personal things about what I was going through and she was appalled and said that she’d have to really look at their contract with this Company because there is something very wrong with the whole process…

YES, YES THERE IS…

AND YES I’M GOING TO APPEAL…when I can get myself together.

YOU SEE, here’s the thing.  This is how I know I’m being watched over by something–call it the Universe if you like.  Because Social Security had pulled their business with me together FINALLY, they had decided they would retro-cover me back to December 2010.  After two years of coverage, then I’d be eligible and automatically enrolled in MEDICARE.  So I had already received this stuff from Medicare, was having pride issues of being on Medicare at only 35 and having a hard time accepting it but during this state of panic about healthcare coverage that I can’t afford to live without due to my MULTIPLE SCLEROSIS AND LUPUS (hello, I CAN’T WORK EVEN IF I WANT TO RIGHT NOW–THEY DIDN’T JUST GET CURES AND GO AWAY), I managed to pull out the paperwork and see that I had MEDICARE COVERAGE AS OF DECEMBER 1ST for Parts A and B.  I could choose about Parts C and D.  What’s C?  I’m confused about that one and it’s not important.  What’s D?  Oh well, then funny you should ask.  That’s Prescription Coverage that I can opt into in Medicare if I decide to.

OK.  WELL THEN THAT WOULD’VE BEEN FINE AND DANDY WITH NOTICE…However, I had no notice.  Sure it was so miraculous to put it lightly that my OLD EMPLOYER HEALTHCARE COVERAGE ENDED ON NOVEMBER 30TH AND MY MEDICARE COVERAGE STARTED ON DECEMBER 1ST (no kidding there) but I had just had a conversation with the Director of Benefits at my Old Employer two weeks before (neither of us knowing my Disability Coverage would be terminated) and she told me not to worry about the Prescription Coverage Part D Part of Medicare because I could still get that coverage with the Old Employer Healthcare Coverage and all would be fine and dandy and so much cheaper and less dramatic…

BUT THEN I HAD NO HEALTHCARE COVERAGE BUT MEDICARE…

MORE FREAKAGE…I honestly could not even do ANYTHING about it all for at least a week.  I was COMPLETELY DEFLATED and at the end of my rope.  Well, sure there was rope but it was a very very thin thread and I refused to even pull at it or even grab hold.  I HAD HAD IT!

SO WHAT DID I DO YOU ASK?!  Well, I found myself suddenly making a hair appointment at a new salon that deals with curly hair (had been coloring my own hair purple for eight months at that time and hadn’t had it cut for eight months either and it needed to be taken care of badly), getting two new hair cuts (the first one didn’t fit me at all and well, I hadn’t had the coloring done just yet–only the consultation–so when I came in for the coloring appointment I had a big heart to heart with my stylist/artist about what I really needed to do with my hair for me at that time and she listened, understood and together we collaborated to cut my hair a lot shorter and get the purple I really wanted.), one of which (the final) will apparently be featured in their salon book because this Junior Stylist/Artist was being watched by the Senior Stylist/Artist and LOVED what we came up with and NEEDED TO GET A PICTURE RIGHT AWAY OF IT TO SHOW OFF TO EVERYONE AT THE SALON AND THEIR CLIENTS.  This guy also told me I was a true artist and it was so much more me.  Going through that whole experience is what I think I needed to find some of me at some point.  At least for the holidays.  I needed more oomph and acceptance of me because I felt so scared and defeated.

THEN: I GOT A CRASH COURSE IN MEDICARE–while still infuriated and hurt and disappointed and panicking about coverage.  Calls were made, notes were taken, website was looked at, advice was asked, and then an hour and a half on the phone with a company that may have handled the Prescription Coverage (the lady was so nice and patient) due to my long list of medications and BECAUSE my MS Medication is such a huge dramatic and EXPENSIVE pain in my butt and always has been in my over 10 years of diagnosis (10 years was December 2nd, 2002…so that was going through my mind too) and I’ve always had to jump through hoops to get it even with a PPO…Meanwhile, Corey was going through Open Enrollment for Benefits with his Company and he kept asking me if I wanted to be on his Plan and from what I could see, it looked and seemed to me like it would be more expensive but I guess I didn’t understand what I was looking at because at the last minute before he completed enrollment, he called me from his work and we went over every detail of the coverage if I was part of his plan and we ended up signing me up with his HEALTHCARE PLAN TOO!  SOOOO, AS OF TODAY, JANUARY 8TH, 2013 I still DON’T NEED MEDICARE PRESCRIPTION PLAN PART D yet….PHEW! 

OH AND I’M COVERED BY TWO DIFFERENT PLANS RIGHT NOW: COREY’S HEALTHCARE PLAN AND MEDICARE.  Can’t have asked for better coverage at this point.

BUT BOY WAS THE PROCESS ALL HELL.

OH AND SOMEWHERE IN THERE I started getting an upper respiratory/sinus infection and had to hurry to the doctor and be thrown on antibiotics to try to kill it right away because they don’t want to take any chances with me and my diseases and immune sensitivities so that was NO FUN.  But it made the infection go away and I’m grateful about that.

MEANWHILE, we celebrate Christmas and so Christmas was happening…Oh yeah.  That too.  I was doing pretty well at this point.  My body was handling everything very well.  I’D LIKE TO PUT A SHOUTOUT TO MY BODY AND THANK IT FOR ALL I PUT IT THROUGH FOR OVER A MONTH!  It let me do a lot of holiday things.  I even competed in a Cookie Swap Party and won 1ST PLACE with my special “Nahleen’s Special Snowball Snack Cookies” and was so touched and surprised to have won.  I’ve been making those since I was ten I think, so like twenty-five years…Crazy.  I feel old…But so cool to win.  I don’t think I’ve ever won first place for anything.  And you know what, it was a really nice Christmas.  I missed my loved ones back east big time this year but Corey, Cleo and I pulled off a pretty darn good one.  And things were starting to fall into place…

HOWEVER, THERE’S STILL SO MUCH TO DO with all this Healthcare Change stuff.  Gotta find out how to get my MS Medication (might I add that the Company who handles my MS Medication and the woman assigned to work with me to get it are absolutely WONDERFUL and I swear that woman is an Angel sent to help me–so sweet, so helpful, funny, knows more about my benefits than I do and so on) the right way although they’ve been sending it to me for no charge temporarily while it gets worked out–AMAZING!  I still need to change all my doctors over and let them know about my insurance situation.  I still need to change all my medications over to the new Prescription Plan.  It’s all new.  It’s all Change. 

CHANGE.

THEN NEW YEAR’S CAME AND HAPPY NEW YEAR 2013!  WE MADE IT! I had a great time with a friend watching Corey on Stage after he had been up for a bazillion hours because it was a One Day Play.  The writers had worked on it overnight, the actors and director showed up in the morning and they had to perform a play twice that night at 8pm and 10pm.  It was a crazy, funny play that left us all wondering what really just happened but it was great to take in the New Year with a laugh.  A friend of mine came with me and it was nice not to go alone too. 

MY BODY HUNG ON UNTIL JANUARY 2ND, 2013 and then CRASHED.

I woke up on January 2nd and my whole body felt inflamed.  It was like it was holding on for me as long as it could and when it felt safe, it let go.  I felt like I was on the verge of an MS Attack, a big Lupus Flare, and every symptom I ever felt ever was happening.  And if it didn’t happen that day it’s been making sure to still show itself today, January 8th.  I’m very fortunate to have a body that gives me lots of warning before it attacks.  If I listen to the warning and rest a lot than usually I can avoid any major action like being PUMPED WITH STEROIDS IN THE HOSPITAL FOR 3 DAYS TO TREAT AN MS ATTACK, or who knows what would happen with the LUPUS and how all that would happen.  I am grateful because not everyone with MS or lupus has that “luxury”…

During this past week I’ve been thinking I’ve wanted to FINALLY write my 150th Blog Post Finally and to get it out but it’s been locked in.  I think I’m pulling a bit into my cocoon to protect myself and because I’ve had enough.  I have to lessen the amount of activity I do and everything has really had to come to a halt or what I consider a STOP and RECOVER.  The RECOVERY to me is taking too long of course and the anger has come back up.  I keep thinking about what I “SHOULD BE” doing or what I “HAVE TO BE” doing and that gets me into trouble.

There’s still so much to handle with the Appeal and cleaning up the healthcare mess, and still having less money and with life, like laundry and grocery shopping and paperwork and managing Cleo’s health, and trying to have a life, and not being able to exercise as much and and and and and—I COULD GO ON FOREVER…

BECAUSE: LIFE IS IN SESSION.  IT IS ALWAYS IN SESSION. 

BUT I WANT TO END ON A POSITIVE NOTE:  DESPITE EVERYTHING THAT HAS BEEN GOING ON, I HAVE TAKEN A WALK FOR OVER 250 DAYS AND I KEEP ON WALKING…

GO ME!  GO ME!  GO ME!

So now it’s time for OPERATION: NURTURE NAHLEEN.

What’s that you ask?  Well it really occurred to me yesterday that I’ve learned to LOVE myself quite a bit BUT I’m not nice about it.  I’m not COMPASSIONATE, NURTURING, GENTLE, UNDERSTANDING, CONSIDERATE OR EVEN RESPECTFUL about it.  I tend to be mean about it.  Sure I’ll do what I need to do for rest and I know this is the body I have and I’m learning to LOVE IT but what about LIKING IT.  IT’S ME.  It’s part of who I am.  If it were someone else going through all of this health stuff all the time I’d tell them to be nice to themselves and take it easy, to be gentle and get some rest.  HECK, even if they have sniffles I’m telling them to take care of themselves and I’m so loving about it.  DO I DO THAT WITH ME?!  NO.

SO NOW I WILL FINALLY STOP WRITING AND GET BACK TO:

OPERATION: NURTURE NAHLEEN

It won’t be easy.  It was much easier yesterday than today.  I’ve wanted to rebel today.  But I’m determined to work on it and I know that with practice it will become easier.  That it’s not about perfection but about progress…

***And I really want to thank all of you who have supported me, talked to me, listened to me, loved me, hugged me, smiled at me, accepted me and been there for me this whole time.  No one should have to go through anything ALONE and I was never ALONE nor did I feel ALONE.  We are all in this together and I really felt ALL OF YOU holding me up and together.

THANK YOU.

 

 

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2nd Opinion Gastroenterologist Turns Into THE Gastroenterologist!

So today I have an appointment with a doctor who used to be my 2nd Opinion Gastroenterologist.  I call him THE Gastroenterologist now because he really has become the doctor to help me the most on my health journey right now when it comes to digestive issues and apparently I REALLY HAVE THEM!

He helped me figure out that I was dealing with Irritable Bowel Syndrome (and probably had been all my life without being aware of it) in November and his treatment and CALMING DEMEANOR have really helped me.  The 1st Gastro doctor was very helpful for me for almost 2 years but he was so stuck on me having a small intestine bacterial infection that that was all he saw.  Soooo, when my digestive system started acting up he’d throw me on antibiotics which I will admit really did help in the beginning.  BUT THEN, I’m pretty sure they were REVVING up my IBS and my intestines were screaming at me!

So glad I listened to some gentle nudges from others close to me because I don’t know where I’d be now.  I asked for a referral from a newer Gynecologist (who may just end up being my new one there too even though I LOVE my current one) and she was able to give me the name of this current Gastro specialist.

Not only did I like the office environment but I was told right away by his Medical Assistant that I was in the right place and that the doctor I was seeing was the expert with IBS and other digestive issues.  She also said I was in good hands and not to be too nervous–when she had noted how elevated my blood pressure was from being nervous in a new doctor’s office.  She said he was very calming.  And then she pointed out that I was in the right place and that the whole team of doctors in that office work together to help their patients get better.  She said if there’s a problem, they’ll figure it out.  I’d never heard a medical professional within the same office have so much faith in who they worked for…

This doctor sure is calming.  Wow.  AND he’s proactive.  He is very much about dealing with the problems of the moment and not thinking too much in the future and he’s gentle and to the point.  The treatment he first prescribed me helped me a lot.  I FELT LIKE A DIFFERENT PERSON–so much better than I had.  He told me that he was sure my MS and lupus would also feel better if we could just get my body to calm down.  Well that was true too!  He also assured me that there were a lot of various different types of treatments and so if this first one didn’t work or last that we could go a different route.

Well a few weeks ago I was hit with a sinus infection and the doctors get really scared when I get any infection because the diseases I have could flare up and I’m very apt to go from something minor to something major like pneumonia in no time so they’re hit with the dilemma of needing to give me antibiotics to kill it right away.  I wondered this would do to my IBS and my IBS treatment.  Well, let’s just say I haven’t been able to get it back to the “better” it was at since then.  It does still seem to be working but I’m flared up a bit again and according to this doctor, it just means it’s not the right treatment for me or balance just yet.

Soooo, we’ll see how it goes.  As much as I’m so tired of going to the doctor, I’m also really tired of having a part of me that feels really crappy.  So it doesn’t bother me too much to go to this doctor and see what we can do about my situation.  It’s nice to have a doctor who wants to try new things at least to get it right and be proactive and NOT have one who was really telling me to JUST DEAL and keep staying on the antibiotics for the supposed small intestine bacterial infection (I’m convinced I did have one at some point but NOT then) for as long as needed.  I also look forward to his calming influence.  I need that a lot these days.

Yet again I learned to listen to my body.  My body tells me when something’s not right.  I know my body better than anyone.  I need to speak up for it when I can.  I also need to take care of it too which means less stress.  I’m working on that but it’s hard with some of the financial and healthcare insecurities I’m dealing with these days but that’s a whole other Blog post or posts for that matter.

It’s nice to get back into this.  I’ve missed it.  Thank you all for joining me and for reading.

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I can LIVE. I can FUNCTION. I can DO.

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

TODAY: I feel sooooooo much better!

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

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

ACTUALLY:

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

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

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

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

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

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

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

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

LOVE TO ALL!!!

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

 

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POSITIVES!

Hello!  Happy Weekend!

Today has been much better than any other day this week!  2 VERY COOL POSITIVES have happened today!

1. I looked at my bank account and was taken aback because there was A LOT of money in there!  It appears that Social Security Disability has FINALLY paid me what they owe me!  I don’t have any written confirmation yet that helps me do the calculations to make sure this is accurate BUT it’s a HUGE step in the right direction!  IT IS ABOUT TIME!  I have waited almost exactly 2 years for them to get it right.  Such a long, arduous and stressful process.

2. I saw a new Gastroenterologist for a 2nd opinion yesterday and it was a really refreshing appointment.  It is so nice to be listened to and to be able to ask all kinds of questions while the doctor PATIENTLY reacts.  I don’t get PATIENCE very often.  Anyway, we THINK we may have some answers about how to help me so I am experimenting with a new treatment and a new theory altogether that should help.  And you know what?  It’s been almost 24 hours since I started it and I’m definitely feeling some RELIEF.  I’m not all better or even close to that, but it was so nice to be able to feel more like MYSELF today and function so much better.  I almost felt like a different person than I have been in quite awhile.  I hope this continues but for now I’m happy with whatever relief I can get when I get it.

Alrighty.  Gonna jump off.  I’ve done way too much today and still need to exercise before having some dinner.  And it’s cool to think that dinner might actually be more than toast.  Thank goodness.  There’s only so much toast a person can eat.  And hey, maybe I’ll even be able to eat my 3rd meal today without having my digestive system freaking out on me the second any food touches it…

SOUNDS GOOD TO ME!!!

Hope y’all have a good weekend!  I’m looking forward to mine!  It’s nice to have some HOPE and actually FEEL it!

 

 

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Rough Week

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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