Sunday 1/8/2017 ~ Life Changes

     We are all aware that LIFE CHANGES, we all know this on a cognitive level right?  Sure we do, but the repetitiousness of the daily grind makes us forget that life changes ~ because there is just as much that repeats and seems to put us on Auto pilot.  When the BIG things roll around THAT is why people take stock and take notice.  When someone in your circle passes away, or has a baby, moves away, has a horrible accident, divorce, marriage, unexpected death and yes of course chronic illness or conditions.

     This post is inspired from a post in a Gastroparesis support group I’m in, I’d never quote exactly but the GIST was she was sad.  She used to have a career that she loved, friends, luncheon dates, spa dates …. and it’s of course “all gone” because of GP.  Her sadness touches me in my heart because I GET IT ~ I honestly do ~ lost EVERYTHING literally lost everything ~ yet here I am and I’m ok.  

     I have bad days, sometimes weeks and yes even sometimes months.  Some days are worse than others, and I definitely have more bad days than I wish BUT I’m here.  I have learned SO MUCH through this process of becoming ill like this.  I’ve learned that I need to make a CHOICE to make the best of it and be grateful (that dang perspective thing again).  I’ve learned to stay in bed and listen to my body when it screams at me.  I’ve learned to not feel guilty for that.  I’ve learned to make the most out of the good days.  I’ve learned patience and appreciation and compassion in ways my previous self never could have dreamed.  I’ve learned forgiveness ~ next month will make 5 years since I had the surgery that did this to me.  There are people I worked with and knew socially for 20 years ~ whom I haven’t heard a word from in these 5 years.  I’m ok with that because maybe you never did care and I guess I’d rather know that ~ and honestly I’m in no way the person you knew for all those years.  Last month I culled exactly 100 people off my “friends list” ~ only one re-requested me ~ and that means it was a healthy thinning. ❤

     I learned to navigate my new life ~ my new circumstances ~ and to appreciate every moment along the way.  I’m grateful for the amazing handful of really good friends that I’m blessed with ~ and appreciate every single person in my life.  Every time I read a post like that woman’s my heart breaks for them ~ because I KNOW that sense of devastation isolation and that whole feeling of “why am I still here?!”  …. and I wish ai could personally reach out to every one of them and talk to them and explain that it CAN get better and encourage them to redesign their mind to embrace their “new life” ~ find the pluses and make their condition no longer their focus.  It’s SO HARD to do but it IS possible ~ I’m proof ~ so hopefully someday some one person might see this particular blog and need to hear this at that moment.  If it’s you I’m so glad you’re here ~ reach out ~ send me a message I’ll speak with anyone who’s struggling ~ GP or anything else doesn’t matter!  Just know it CAN be better than it is today ❤
Side notes ~ I found out this week that I was chosen to be on one of the committees for the Your Weight Matters 2017 National Convention in NOLA ~ #veryexcited

I also found out this week my surgery on my left leg will be a week from next Thursday ~ 1/19 #notsoexciting 😂😂😂. 

I SWEAR that my 2018 resolution is going to be NO SURGERIES! 😉

Thursday 9/15/16 ~ Health Notes

     So there’s not a great deal new going on but the updates are:

Stomach ~ some days good some days bad ~ still waiting to hear if the government is going to approve me to try the new medicine ~ not likely to find out until the end of October.💊

Defecation Dyssnergia ~ Biofeedback is completed, and it did make a difference ~ I urge anyone who suffers in this area to try it if offered and to give it a chance.  I was skeptical and then shocked at what I learned.  I’ve started Pelvic Floor physical therapy twice a week to help as well, and it is making a difference.  Neither of these things is the most pleasant experience ~ BUT ~ worth it.  Considering my average bowel movement was twice/month, and ONLY possible via the force of vomiting for the last two years ~ 3-4 times/week with only one episode of vomiting in the last 3 months ~ victory in my book!👍🏻

The Vasodepressor Response is what it is ~ I try to get more salt and I’m real careful when I stand up ~ and as soon as I get dizzy I sit down 😂😂😂

Most recently ~ after I had the Sepisi in July (while still on the Antibiotics) I got a blood clot and infection in my leg.  That led to a visit with the vascular surgeon, an in depth vein scan and alas I’m waiting on the insurance company to come back with the approval for surgery.  There’s a few problems going on in the legs ~ this particular surgery will be to remove the vein in my thigh that is holding the clots and infection.  So that surgery is step one, we will see what rectifying that does to help the other issues (if anything) and then go from there.  

     So my 2016 goal was no anesthesia ~ this will be my fourth time in 2016 😝…this will make the third surgery plus one Endo ~ so yeah the goal for 2017 is no surgeries 😂😂😂!  So that’s the story…nothing real exciting and I’m kind of grateful for that …. And as always for those who read and share!  Thanks much for stopping by, til next time 🤗

Tuesday 9/13/2016 ~ Just as Simple…

     You often hear that whatever it is your goal it’s “just as simple” as…XYZ.  Want to lose weight? Eat less, exercise more.  Want to quit smoking?  Stop.  Want to tone up?  Stop avoiding the gym.  Have a chronic condition?  Get more rest, exercise more, take vitamins, drink herbal tea, the list is endless.  I’ve talked to people who have gastroparesis who have heard some of the CRAZIEST things in the terms of advice from unqualified non professionals.

     I can’t speak to other chronic conditions (because I don’t have them), but I can tell you that with GP it’s “just as simple as” figuring out what works best for YOU.  I can tell you that because there is no gold standard miracle cure, AND I can tell you that it’s not all that simple.  It’s a life altering condition, that takes a GREAT deal of acceptance and adjustment.  

     So what’s my point?  My point is that whether you are trying to lose weight, give up drugs/alcohol/smoking, tone up, be a better person, navigate life after WLS or just live healthier …. It’s NOT “just that simple”!  If it WERE would we not all be icons of health and perfection?  If it was all “oh so easy” wouldn’t everyone sign up?!?!?  The reality is that it’s a lot of work, whatever it is ~ it’s work ~ and some days will be easier than others but very little is “easy”.

     My thought for the day is to be good to yourself.  No matter what your struggle, no matter what your path…CUT YOURSELF SOME SLACK!  Don’t compare your journey to others, don’t berate yourself for the days you feel inadequate in your journey, forgive yourself your transgressions, accept where you are on your path and embrace it, and treat yourself the same way you would treat your friend/mother/brother/sister/child.  Everything is a process, every obstacle is a sub-process inside this bigger journey called LIFE!  Each little piece is just a small cog in the wheel, and you will get much farther in your quest for happiness, contentment and success if you embrace the journey and love yourself because the reality is it’s NOT “just that simple” for ANY OF US.  No matter what you see from the outside looking in ~ everyone has highs and lows and everyone has mountains on their journey ~ enjoy the ride! ❤️

     Thanks for reading as always ~ if you enjoy the blogs please feel free to share on FB (WLJ2H&B) or Twitter (PaulaJac23).

First Biofeedback Session – Sun 6/19/16

Biofeedback – the use of electronic monitoring of a normally automatic bodily function in order to train someone to acquire voluntary control of that function.  In my case better known as “potty training” lol.

I’m a little apprehensive about blogging about this topic as well – it’s kind of a “non-talked about” topic – BUT – I think it’s IMPORTANT for these things to be talked about.  That was the entire premise and motivation when I started my blog – my own frustration with how little information I could find on my issues!  So here I am – if pooping isn’t your thing – STOP READING NOW – though I will do my best to present this in a less than disgusting light – it’s still a touchy area!

So a couple months ago I was “finallyyyyyyy” diagnosed with  Dyssynergia Defecation, basically my pooper doesn’t function properly.  Yesterday I found out more specifically that I have 4 unique issues:

1.  The muscles in the bowel area used to moved stool down don’t have the strength they should – (think of the strength in your hand trying to open a jar – if the muscle just isn’t there – it’s not happening).
2. There is a defect in the communication between my brain and my rectum, when having a bowel movement that muscle should open/relax to allow stool to eascape – and mine closes up rather than opens.
3. The other defect is that when my brain says “push” what my body is doing is pushing – but in the wrong direction and lastly…
4. Sensation is an important part of the digestive system – including the bowel, and my level of “sensation” is almost non-existent.  Meaning part of the testing is to see WHEN you feel a slight urge to go, when you feel like oh I gotta go, when you feel like OH LORD where’s the potty.  Mine is about 1/4 of what it should be – meaning if a normal person feel…slight urge at 20 and OH LORD at 80, I feel a slight urge at 80 and the OH LORD for me is off the charts.

So the positive takeaways for me here are – OH WOW there IS a problem – that someone actually IDENTIFIED – only took 4 years – but alas here we are.  The even more positive is that there is a way to potentially HELP these issues and that is with the biofeedback.  I was CAUTIOUSLY optimistic about the ability of this to help me, but after my first appointment on Friday I’m now simply optimistic period!  I learned SO MUCH in my hour and a half with that technician, so much that just blew my mind.

It’s not an overnight cure – basically she showed me where things were going wrong, and taught me some techniques to help correct them.  Now I have to practice those for the next month -and then go back for session #2 to see how I’m progressing.  My point in sharing this blog is IF you have issues in this area – educate yourself and find someone who deals with this.  Although it’s a yucky subject, and the test and stuff is not “pleasant” it’s also not painful or awful AND omg to have HOPE about anything medically is a like a huge gift to me personally.  My suggestion is read up, educate yourself, and keep going until you find a medical provider who LISTENS and who is active is trying to get to the bottom of the problem.  I’ve LITERALLY been telling doctors for four years that I didn’t have an urge to poop and rarely pooped etc., and was met with a constant array of prescriptions and shoulder shrugs….so my message is DON’T GIVE UP – it’s pretty unlikely that you are crazy and though I understand my situation is unique as they all are – this is an area to think about / explore at least.  It’s one little “cog” in the digestive wheel – but it’s an important one and if my sharing my pooping issues gives just ONE person a little hope about their situation then it’s well worth any embarrassment.

I always like to add when talking about medical stuff – I am NOT in any way a medical professional.  My blog is about my personal experience and ANYTHING you do/try etc. needs to be done with your medical professionals  –  just offering this up as food for thought – don’t despair – KEEP ON KEEPING ON!  Hey, thanks for stopping by – as always! ❤

 

Saturday 6/4/16 ~ Regrouping

So I guess that’s part of life – the comeback right?  Oh those come back’s can be a bitch – but you gotta have faith (in yourself – I’m not delving into religion here), and holllddddd on for one more day.  Yes I’m singing now “I know that there is pain, but you hold on for one more day…..”.  That’s today’s moral I guess – please please don’t give up – whoever you are – whatever your struggle is.

I’m fortunate that this “regroup” for me was like two days – and quite frankly I shake my head at my own self.  Nothings changed, not a single thing has changed in the last 48 hours except my mental outlook.  No miracle medical cures, no lottery won, no jet setting around the world happening, literally not a damn thing has changed.  Same life, same issues – better attitude I guess.  Now in my defense (as if we need to defend ourselves)…I wasn’t trying to be sad or bitter or angry – I literally could not help the way I was feeling.  I’m glad I was able to walk myself through it – I literally was taking it a moment at at time, and gave myself the same self-talk that I would have given someone else if they approached me sharing that they felt the way I was feeling.

I’m fortunate that I’ve never had a drug or alcohol addiction – lucky me – but those addictions have impacted my life from others, and I swear I LOVEEEEE the Serenity Prayer.  I almost hate to say that because I in no way want to take away from what that prayer means to the addict, or the special hell they have lived with.  I respect that fully but that prayer just works for me on SO many levels.  I’m not overtly religious, I don’t practice any religion, and as a rule I don’t participate in religious debates etc.  I feel to each his own – and I realize the “prayer” is in fact ‘religious’ just by the very nature that it’s called a prayer and mentions “God”.

I don’t care who you god is, or if it’s just faith you have in yourself, in the sun, I could care less if you replace the word god with Cabbage Patch Doll if that is what moves you…throw a minion on your dashboard and praise the insect ruler I really don’t care – but listen to the rest of it…if you are struggling today – if you feel like what’s this life about, if you feel helpless and overwhelmed just THINK through those words and sometimes it’s a MINUTE at a time (at least for me) but please if you are in any way impacted today but feeling “off”…..

“God (Allah, Minion, Troll insert your faith here) grant me the serenity to accept the things I can NOT change, the courage to change the things I CAN and the wisdom to know the difference.”  Sometimes the ONLY thing you CAN change is YOURSELF – for me that was the case this week…I can’t change any of things that had me feeling off center – so I “regrouped” and changed me – it took a minute but I did it and you can too…don’t give up whatever your struggle you are so much more than the pain or the sadness or the guilt or regret that you might feel in one moment – cut yourself some slack, take a breath, have a cry, phone a friend…you’ll be amazed at what you can accomplish with a change of mental venue!  Much love – see you next time – thanks for dropping by!

Friday 6/3/16 ~ Hi-Light Reels are B.S.

Wanting to be inspired is one thing, wanting to inspire is quite another.  Lately I feel very lost in the quagmire of life.  Nothing wrong really but nothing really right either!  I hate these times, the in between times ~ never knowing what comes next a high or low.  Somehow it’s always one of the two ~ the in betweens never last.  I had a thought earlier about how you ONLY see the highs or lows of anyone’s life ~ you don’t see the in betweens.

You kind of see the hi-light reels and miss the big picture.  You see the runner cross the finish line but never the 1000 mornings he/she struggles to get out of bed.  You see the person winning the lotto but never the 10000 tickets he bought in the ten years before that.  You see the girl who lost 200 pounds modeling her new duds but you’ll never see the 40 days and nights she struggled wanting cheesecake.  I don’t know why we do that to ourselves, why do we watch other people’s hi light reels and get ourselves all in a twist, when intellectually we know that’s in fact not even close to the whole story?

I suppose I’m having this zen like moment of postulation because I’m at an in between time ~ hopefully I’ll get over myself soon.  It’s funny there’s really nothing wrong, I got an answer from the neurologist that I didn’t like ~ it’s not deadly or life threatening but I wasn’t thrilled.  The hysterectomy went well and idk I’ve CERTAINLY felt worse physically.  Go figure it’s like things slow down and I have to much time to think…sometimes thinking is dangerous and I wish I could shut my brain off.

Intellectually I know what “my problem” is, I know where I’m at and I know the things I need to do to regroup – that part is easy peasy, emotionally it’s a challenge though.  It’s funny, (funny as in ironic) ~ I thought that my stomach situation was the “big change” in my life, and god knows it was/is – but then the other day when the neurologist told me what my problem is it was like a whole new blow, and a whole new low.  Basically I was there to find out why do I get so dizzy and pass out etc., and I believe I mentioned in an earlier blog that the tilt table test was positive and I was really excited about that.  I was excited because it was my understanding that if this WAS the problem she could give me a pill to raise my BP and I’d be on my way.  The reality is a bit different.  I tested positive for Vasopressor Response – without use of nitrates and she went on to explain that there are 4 types of this condition my situation being one of the two worst, and that she CANNOT in fact help me.  Instead – due to the huge increase in my BP drop (40 points plus in under a minute) that I’d have to go to a cardiologist, and that ultimately if my heart rate starts to fluctuate more that I might need a pace maker as well.  In the meantime she basically told me to get used to it, she said things like I “need to slow down”, need to learn to live a slower paced life, no heavy exercise, have to be careful of heat and not do anything anymore that “might” initiate an episode.  REALLY REALLY, live a slower freaking life are you kidding me?!  In 2011 the speed of my life was 250 mph, the last four years it’s slowed to snails pace, and I’m lucky if I can do 40 in a passing zone and now she’s telling me to slow down more?  Just urgh – seriously I’m 45 years old and I’m supposed to live like I’m 90 – how depressing is that.

Yeah yeah I know I’m the first one to preach perspective, and trust me when I tell you that I’ve been doing a HUGE amount of self talk these past few days trying to remind myself of this.  I do KNOW it in my head, but my heart is really struggling right now.  I’m not going to die, I’m not in a wheelchair – I’m not a MILLION things that I could be and there are SO MANY MANY people out there so much worse off than me and I get that – and I respect it.  To be 100% honest though it doesn’t make it a whole lot easier right this minute, because once again (after this adjusting I’ve done) I’m faced with a reminder of the prospect that “this is it” for life.  There is those moments of wtf am I here – what’s the point – all of that and it’s a terrible roller coaster to be one – I hate it.  So I’m working, I’m working at getting over the hump and readjusting my vibe to be “ok with it being what it is”, what a freaking struggle though.

Another irony that doesn’t escape me is that on June 18th, 2013 I felt much worse than this – to the point where I took an overdose – and so that in itself is a reality check.  Maybe June just isn’t a good month for my karma I don’t know.  I’m grateful that I don’t feel THAT badly but still – I’m ready for this whole in-between hump to be over and to get back to not wanting to cry when the wind blows.  Actually I’m not normally a crier it’s pretty rare, and last night I decided that maybe it would be cathartic and cried myself to sleep.  I’m not sure if it helped, but I faced another day of feeling like this so that’s a positive I suppose.

My point of sharing this little hurdle isn’t for sympathy or even empathy, we all have our crosses in life – this one’s mine and I’ll handle it – BUT – if you are having a bad day, a hard time, struggling…please know you are not defective.  You are normal, and you are stronger than you think you are!  If you are feeling really down and need help to get out of the hole – PLEASE know that also doesn’t make you defective – it’s called life and we all go through it to varying degrees.  You can always reach out for help to the suicide hotline and you might be surprised at just how normal you are!  Well so much for writers block lol, hey thanks for reading and I’ll see you soon!

Tuesday 5/17/2016 ~ Life

Well my blogging regularity has been less than stellar by all means, but I’m trying not to be real hard on myself over it.  ** Note to self ** ~ roll with the punches!

So what’s new and exciting?  Lets see – I had the tilt table test last week (this is with regard to the being dizzy and passing out like crazy).  The test was a success in that I had an “episode” all on my own during the test and my BP dropped 40 points both top and bottom within 60 seconds, I didn’t require the second part of the test where they give you medication.  For me the “good news” is at least it showed what’s wrong, and so when I follow up with the neurologist we will be able to deal with that.  I think that the two years it took for me to get a proper stomach diagnosis made me very weary of having anything going on without an answer, so I’m actually grateful that this test showed something.  Once again – not technically crazy #gome!

Tomorrow I’m having surgery – ha ha – I know right ME, SURGERY no wayyyyy!  Some days I feel like I should have my name on a plaque in an operating room – eeshhh.  Again though I’m kind of glad this is getting done, I’m having a total hysterectomy tomorrow.  The cancer gyn specialist is doing it, and she’s going to try to do it with the robotic arms so that I only have to stay over one night, and it’s much less invasive.  If she runs into trouble with scar tissue or anything then she may have to switch to open – but I won’t know until I wake up anyways so – fingers crossed.

I’ve had so much going on these past couple of months that I’m really thankful that these “two items” are kind of getting checked off the list.  No they are not “over” yet, but in each case we know what’s going on and we have a plan through to a completion and/or management so it’s not like they are going to remain cumbersome mysteries.  I like checking things off lists (no OCD here), so though it’s still a mile to the finish line I’m feeling pretty good about everything.

The stomach and bowels – well they are what they are – in a holding pattern right now because they don’t want to start the biofeedback and the pelvic physical therapy until AFTER the healing is done from the hysterectomy – so a couple more weeks and then we can get THAT show on the road.  Been doing a lot of introspective stuff lately regarding all of this, thinking about “my life” five years ago, and then 2 years ago next month is when I attempted suicide and IDK, overall I think I’m in a pretty good place.  I’m definitely not struggling with depression, and that is a WONDERFUL feeling.  Bad days yeah of course, some days are rougher than others physically (and therefore mentally), but at no point have I felt like this is a waste or that I should give up.  That’s a HUGE hurdle to be over and gosh I’m so glad.  I’m also aware that this could change at any given moment, but right now I’m feeling content/motivated and like there’s a reason for my presence in this world!

Yeah so that’s my story – hopefully once I get through this surgery things will balance out again for a while.  That would be nice, can’t wait to enjoy a little summer!  Surgery – lol, this is literally #23 and I’m going to be 46 this year…I’ve averaged one surgery every 2 years over my lifetime – eeshhhhhhh!  Hoping you all are doing well and I’ll talk to you soon, thanks for your messages and encouragement – ya’ll rock!

 

Illness is Hectic ~Sun 5/1/16

The last couple of weeks have been absolutely crazy medically speaking – way to much crap going on.  Here’s the updates though:

1.  Yale and the stomach stuff:  I went to Yale on this past Wednesday to see the doctor and get the results of my tests.  The  Anorectal Manometry test showed that I do in fact have Dyssynergic defecation.  So I’m not “happy” to have it BUT I am happy that there is in fact “something wrong” that we can work on.  The very short unmedical explanation of this is that when one attempts to have a bowel movement – the muscles work to EXPEL stool, my muscles instead work in the opposite direction and in essence push it back up through the intestinal tract rather than expel it.  The treatments that we are going to try first are Biofeedback Therapy and Physical Therapy for the pelvic floor.  Honestly I’m not looking forward to either, BUT I’m going to try really hard to make them work because she told me that if those are unsuccessful the next option would be a colostomy bag and yeah, no thanks!  So that will be starting soon and will take 3-6 months to complete to see if the treatment is successful.
2. She also did a small bowel follow through study and the there were just two things of note from that.  First is that my esophagus shows signs of deterioration – even though I don’t have any symptoms on that end, and the doctor doing the test recommends another scope to look at that.  He said it **could be** just deterioration from years of vomiting, BUT what he was seeing could also be polyps so he says a scope is in order.  The only other thing he saw was some adhesions in my bowels that could be causing partial obstructions.  In both cases she said that I can see my regular G.I. doctor to deal with these findings as he is much closer geographically, so she’s sending him the reports and recommendations and I go see him on the 17th to follow up on those parts.  The biofeedback and pelvic floor therapy are very specialized and will be done at Yale.
3. My tube was successfully replaced a couple of weeks ago so that’s one thing off the list and taken care of – YEAH!
4. The female issues are also being dealt with.  I went to the women’s cancer center earlier this week and met with the doctor there.  Anyone local to me who has issues I HIGHLY recommend that place, amazingly through and accommodating and and so very nice, what I though would be a half hour appointment was actually FOUR and a half hours!  End result of THAT is that I’m having a complete hysterectomy on May 18th through the cancer center, and fingers crossed that this completes my dealing with THIS issue.
5. I’m still waiting to hear back from the dermatologist about the biopsies she did on the cysts on my fingers to see whether they indicate an autoimmune condition etc.  Should get those results in the next couple weeks and the fingers are healing.
6. The last thing on the list is the tests that neurologist is doing to determine the cause of the Syncope (light headedness and passing out).  She’s doing a whole battery of tests in the interest of being through – but we’re both leaning towards blood pressure issues where my veins don’t contract properly to return blood to my head & heart regulating blood pressure.  I’m having a Tilt Table test on May 13th at the heart center, so that should really be the test to answer that question.  One of the other things she’s having me do is blood pressure monitoring, this morning we were 78/40 – and that’s not uncommon so my money is really on the blood pressure thing.  The UPSIDE is that she said there is in fact medication to help regulate and correct that so I’m hopeful that this too will become a non-issue in the near future!

Medically life’s been a little challenging so far this year lol, but just hoping these things continue to be dealt with and crossed off the list.  All combined it’s certainly taken it’s toll on how I’ve been feeling overall – so I’m trying really hard to just make it through a day at a time…but boy I’ll be glad when I can get back to just the belly issues lol.  Who would of though I’d be hoping for THAT, ahhhh well life is a funny ride sometimes.  I did a number of links to the specific things that are going on just so that if you have something similar going on or are looking for more information you have an easy place to start.  Thanks for stopping by – here’s hoping a month from now this list will be down to one thing again!  Much love as always!

Saturday 4/23/16 – Medical Crap

Soooooo – medical crap lol lets see one thing at a time:

Tube Change is done – it was a bit painful but seems to be working out ok now – I go back to the surgeon on Monday for the follow up so we shall see how that goes.  At least I got the exact same tube and it fits my Stoma so I’m quite happy with that!

As for Yale and the “general stomach stuff”, I’ve now had both tests that the Doctor wanted me to have as far as testing my bowels and I go back to see her this Wednesday so we’ll see what they say.  The guy who did the small bowel follow through the other day did tell me a couple of things of interest.  One is that he was showing me my esophagus and explaining to me that EITHER there are cysts in there OR it’s awfully deteriorated due to the years of vomiting.  Either way he said he was going to recommend to her that I go have another Endo done (this would be what number 17 – eye roll), I guess I’ll see what she says but personally I think if I don’t have trouble swallowing (which I don’t) lets just leave it the hell alone.  He also showed me a part of my bowel that looks like it’s stuck to itself, but actually it’s a whole small section that has a septum right down the middle of it full of scar tissue.  So that could be an issue if the scar tissue is causing a blockage possibly, but they had to look more closely so I’ll see what she says about that too -that would also be “another surgery” and just URGh – and I don’t know the results of the analrectal manometry so I’ll just have to wait til Wednesday!

Lets see – then there’s the “female stuff”.  Having a multitude of female issues going on in there – bottom line is that I was supposed to have a surgery on the 14th of April with my regular gyn guy – which he cancelled.  He cancelled it because when he did the ultrasound on the 8th to check the mass on my ovary it had grown substantially i the 3 weeks since he last looked and so he won’t touch me.  I’m going to the gyn cancer doctor this Thursday – and praying that they will say lets just take it all out – I’m kind so DONE with this whole thing and I’m CERTAINLY never having any more kids – I knew that 20 years ago….so hoping they can just rip it all out and move on, it’s testing my nerves.

Lastly is a kind of a two-fer lol.  My regular doctor sent me to a neurologist with regards to low blood pressure, passing out, light headed etc., seems to be a recurring issue for me that continues to be a problem.  So went to her, she’s doing ten thousand tests which is fine…and I’ll see her to get the results of those in a few weeks.  Bottom line is she “thinks” that whatever “syndrome” it is that causes the veins in your neck to NOT return blood to your head at the proper speed and regulate your blood pressure might be in play here – the tilt table test (of all the 15 different tests I’m having) will likely be the one to make or break this theory.  So that’s that BUT here’s what’s interesting…

I have developed some cysts on two fingers on my right hand, at first no big deal but they really became painful and irksome – so I asked my doctor about them and he didn’t know what they were so he sent me to the dermatologist.  Went there the other day and she ended up cutting one off for biopsy and burning the other off, but she told me that she thinks that it might well be an autoimmune problem, such as POTS caused by my gastric issues.  My body basically just “being done” with all this and attacking itself – hmmmm interesting to me for a couple of reasons.

#1 in my reading that night to educate myself a little it seems that with POTS the whole lightheaded blood pressure thing is quite a factor and

#2 in my experience in Gastroparesis support groups I’ve noticed that like 75% of the people are diagnosed with this and I always just though hmmm wonder what that is – well I must be one of the lucky ones I don’t have it – I just never likened it to ME and what I have going on…

So I’m waiting for them to call me back in another week or so with the results of the biopsy to see what’s going on THERE.

In general I haven’t been doing great – but not horrible either.  I am 100% feeling whatever the combination of things that are going on with my body as far as just feeling weaker and finding it more difficult to “function”.  Trying not to get to caught up in it because I’m by FAR not doing my worst but I’m hoping that I’ll be feeling better soon if we can make some progress with at least some of the things going on…I’m kind of tired of feeling worn out all the time lol, I need to get my groove back!

Ah well – I’ll try to get a little more productive on legit blogs here very soon – love you all – thanks for dropping by!

 

 

Wed. 3/30/16 ~ Please Define Crazy

Today, ok well in all fairness when you read this it will be “one day last week”, I wanted Pizza.  My brain, my body, my psyche, my lips, my taste buds – all conspired against me and good grief I wanted me some pizza.  Now if you follow along with any regularity you know that I have not been having a lot of good belly days, it’s been a struggle lately – and well – eating Pizza would NOT be a good idea.

So the illness wins again right?  You have to appreciate first how the “days” that I have are defined by varying degree, some GREAT days (I can almost eat like a ‘normal person’ and feel ok), some HORRIBLE days (which include vomiting for 12-14-16 hours then sleeping for another 24-36 to recover) and there are a VARIETY of “types of days” in between.  There are foods I know I do better with, there are days I know just don’t eat and you won’t get sick, there are days I feed, and days I eat baby food, and days on end where I just don’t eat at all.  That’s life and I’m kind of okay with that, I don’t LOVE it but I live with it alright these days; it’s part of my new “normal”.

Today was an in between day, I was not in fact “sick” today, I didn’t vomit and I wasn’t overly nauseated (only 2 Zofran today for my fellow nausea buffs); so overall it by FAR wasn’t a worst day.  It also was not a great day, I was sick last night and I know my body well enough to know that eating today would be a bad decision.  I’m only down 17 pounds over this last 6 weeks of trouble, and though I can’t feed because my tube is still messed up – I CAN hydrate and I’m doing “alright”.  I know though that eating today would be a bad decision…so regardless of the sweet and sultry beckoning of the pizza I so longed for – there was no way I’d be putting any pizza in this body today.  I wanted it though…so what do you do?

Today my choice was to live on the thin line between taking back control of my world, and letting my condition dictate every moment of my life.  Let me say here and now – I do NOT promote anorexia or bulimia or any other condition (self inflicted or otherwise) that will cause unhealthy situations.  It’s important for me to throw that in there because this is the whole point of the blog.  Today I WON – ha ha gastroparesis and screw you.  I got dressed, I drove my happy ass to the pizza joint and I ordered me a slice – extra crispy with pepperoni please.  I stood in line, waited to the side for my order grabbed my slice on my plate in the bag and toddled off to my car – kinda like, well kinda like “a normal person”.  Granted I brought my slice home, where I quite happily chewed it – ENJOYED the flavors like the heavens had just parted and shown me the sun for the first time ever – and I spit.  Yep I chewed and spit.

I DO realize that “crazy” is a fine line, and so are eating disorders.  I do realize that to any “normal” person, the very act of chewing and spitting likely seems unhealthy, but this is how I differentiate my choice from a disease of the mind.  If in fact I was having a GREAT day, and that pizza was seducing me with all the eloquence of a Bruno Mars ballad…I would have in fact swallowed the pizza.  I DO eat when I can, and I will do so with gusto and appreciation.  However I have learned my condition well enough to know when I can’t, and so then you make a choice.  Do you “deny” yourself, do you sit and feel sorry for your woes, or do you take back control.  To me adventures like this are a WIN, because I in essence “got what I wanted”, I got to behave “like a normal” and didn’t sit here doing the oh poor me thing.  I said (in my own mind) screw YOU GP I want that taste, I satisfied my brain, my psyche my taste buds etc. ~ and I got the chance to be “normal” for those moments when I was sitting there with five others all waiting for their “slice(s)”.

It sucks to constantly feel like a part of your life has been stolen from you – for whatever reason.  You don’t REALIZE what an intricate role food plays in our day to day living until you have to learn to live WITHOUT it.  It’s a victory of sorts to still feel some power, to find some resolution where you feel empowered again.  As I said I 100% do NOT encourage or support anyone purging, or otherwise engaging in any activity that will deprive their bodies of nutrition in an effort to meet some twisted standards of what beauty is as dictated by photoshop.  Trust me when I CAN eat I do, and with happiness and passion.  The months that I was doing well at the end of last year I gained 24 pounds from that passion and I was okay with that, which is also why I’m “okay” with the 17 pounds I’ve lost this last six weeks or so while I’ve been having trouble.  I monitor my weight carefully, and I monitor my protein carefully to do my best to ensure that my body gets what it needs to be the best it can be.  I maintain a 30 pound window up/down, where I don’t mind if I gain a little because I know when I’m sick I’ll lose and so forth.  I won’t allow myself to be unhealthy and gain over my limit, but I also strive to never go UNDER it and I work hard even on my worst days to try to make sure I get 60 grams of protein in to support my body.  I’m also a fanatic on hydrating.  So as I stated in my headline…define crazy…if you just told someone “oh she chewed and spit today”, they would likely think I needed SERIOUS help.  Yet when you know the whole story you realize, making that decision and taking that “power” is one of the healthiest decisions I can make for my situation.  Everything is relative and as I often say – PERSPECTIVE is an AMAZING THING….so next time you think someone’s “crazy”, take a minute and ask yourself if you know the whole story.  Maybe they are crazy, some days I’m that TOO – but chewing and spitting for me today was a CRAZY VICTORY over my lousy condition!  Until next time…much love and as always – thanks fo reading!