Thursday, November 10, 2011

Mood- same
Health- same


Life- same

Wednesday, November 9, 2011

Today I went to get my new brace (finally approved) and came home... that is about it.

Tuesday, November 8, 2011

Not even bothering with mood and health because it is a broken record

**saved as draft and forgot to post**

Monday, November 7, 2011

Mood- ditto
Health-again


Back to bed... infection is back 

Sunday, November 6, 2011

Mood- down
Health- still down

Awake long enough to go back to bed... infection is coming back I think.

Saturday, November 5, 2011

Mood- down
Health- still down

Well, I have developed Ludwig's Angina (had that when I went to the ER as well) but it seems to be responding to the horrible Flagyl (at 1000 mg a day of the nasty concoction I would hope so) but after a week of having my face aching and swollen and my neck looking like an over-inflated inner-tube I will be happy to have my face back some day.

Things might be better if I could have gotten the other antibiotic as well, but there is no way I could have swung $100 for 14 pills right now, so I am just going to have to improve as I am and hope that the nuclear dosage of Flagyl will be enough.

Back to bed...  

Friday, November 4, 2011

Mood- still down

Health- still down

Going to go lay back down

Thursday, November 3, 2011

Mood- down
Health- down

Can't even lower my chin today, my neck is so swollen and can only afford one of the antibiotics that they prescribed (500 mg flagyl 2x a day) and it seems to be making what tiny appetite I had completely disappear... what a great thing to have happen when I already struggle to get food in.

Going back to the ER is just not going to happen because it would be a repeat of the first time when they did nothing... not even a blood test to check my blood levels.

As far as the Hospital thinks uninsured means unimportant. 

Wednesday, November 2, 2011

Mood- down

Health- bad

Tried going to the ER or treatment for my infected jaw because the swelling involves the entire left side of my jaw all the way down my neck to my collarbone, is red and scalding hot to the touch.

I have no insurance... so they pushed at my jaw, gave me two antibiotic pills and sent me home.  No blood test to make sure it is not septic... not a dang thing.

Back in bed.

Tuesday, November 1, 2011

Mood- down

Health- pain

My jaw is abscessed again and since there is nothing I can do about it the agony is intense.

Going back to bed.

Monday, October 31, 2011

Mood- bad

Health-bad

Bad day back to bed

Sunday, October 30, 2011

Mood- still down

Health- broken record that never ends

Same life different day... same bed, and going back to it again.

Saturday, October 29, 2011

Mood- still down

Health- still the same

The past month has been a completely lost one for me, spent in a daze and a haze and can only hope that next month some of my energy returns or at least I adjust and can try to claw back to my life.

Friday, October 28, 2011

Mood- down
Health- down as a result

Having a relationship that is in a very bad place at the moment is making my health take a dip downward taking away all of the progress I have been slowly gaining to get back on some sort of even keel... sighs.  Can't think straight so going back to bed.

Thursday, October 27, 2011

Mood- done
Health- same

Finding out that ones husband has been hiding letters from the IRS from you since April when you can barely think enough to breathe can take the last gasp of breath from you... especially when you find out that had anything been done in April the problem would have been resolved but because the letters were read then ignored you have a huge bill in your name you knew nothing about and the only response you get is "I read the letters and forgot".  

This is the life I am fighting for???

Wednesday, October 26, 2011

Mood- down
Health- down

Seems like a broken record...

Tuesday, October 25, 2011

Mood- down
Health- same


I don't know why I am even bothering to post every day when nothing ever changes

Monday, October 24, 2011

Mood- depressed
Health- still rotten

Invisible illnesses are so cruel... I was starting to get a life, albeit an online one, but my health has decided to even take that from me.

I cannot concentrate to follow the posts of my friends on FaceBook... and my isolation is growing by the day.

Sunday, October 23, 2011

Mood- asleep

Health- asleep

Still there

Saturday, October 22, 1022

Mood- asleep

Health- dormant

Still sleeping my life away it seems...

Friday, October 21, 2011

Mood- asleep
Health- exhausted


A little better than yesterday, but still exhausted... but any improvement is an improvement.

Thursday, October 20, 2011

Mood- drained
Health- still drained

Just not getting a handle on things... sighs... is just so tired.

Wednesday, October 19, 2011

Mood- tired
Health- tired of it all

Once again slept all day after dealing with my unethical cell phone service this morning anc about to go back to bed... the only bright spot is being able to turn my head more easily without screaming today.

Tuesday, October 18. 2011

Mood- pissed

Health- rough

Well, thanks to my useless cell phone company I missed my first blog post ever and have failed to keep my commitment to do a daily blog on time!

N-Telos decided to take my air card off my cell plan... without telling me... and put it on it's own account... without telling me.... and disconnected it for non-payment!!!

Got that fixed... (at an expense I cannot afford) and getting yesterday's blog in today... sighs.

I do not feel good enough to deal with this...

Monday, October 17, 2011

Mood- tired
Health- tired


Seems like it is my month to sleep

Sunday, October 16, 2011

Mood- down
Health- down

Still has zero energy and ability to concentrate... probably going to have to give in and go the the ER soon because this just can't go on.

For now it is back to bed.

Saturday, October 15, 2011

Mood- cranky
Health- still bad

Still cannot kick this headache and stiff neck, and not the glands in my neck hurt like the devil as well... going back to sleep.

Friday, October 14, 2011

Mood- asleep
Health- hovering

I just cannot get out of this slump... all I want to do is sleep and everything else just takes too much energy.

Thursday, October 13, 2011

Mood- down and slightly scared
Health- nosedive

I was 'fine' when I woke up today (fine as in, feeling tired and weak and drained and sick but nothing 'new') and after feeding Loki and settling back in bed I was suddenly hit with instantly one of the worst stiff necks of my life.  

One second moving with ease and the next unable to even raise my hand without screaming from the pain in my neck... sigh.

It was not that I moved a strange way when it hit... I was sitting still... it is not from sleeping in a strange position because I was fine until that moment.

It was all I could do to pull out my laptop tonight and do an entry, every move of my fingers is a stab of pain in my neck.

This is the 'joy' of living with an invisible illness... because even though I am considering a trip to the ER because these are some scary symptoms I have a greater fear that I will simply be told it is all in my head or associated with my condition and sent home.

Wednesday, October 12, 2011

Mood- blah
Health- blah

There in only one reason that I logged on, once again... and that is to keep my commitment to make an entry daily.

My health is just not improving at all... and I am going back to bed.

Tuesday, October 11. 2011

Mood- asleep
Health- asleep


Yet another day sleeping... hopes to get energy back one day.

Monday, October 10, 2011

Mood- asleep

Health- snoring

Has done nothing but sleep today... thinks I will continue the trend...

Sunday, October 9, 2011

Mood- down down down
Health- gutter

My stomach has gone on complete strike... tried to drink some coffee (usually helps a little to perk it up a little) and is sitting here with coffee in my throat... I can actually feel it sitting there hot and acidic and I am afraid to even bend over because I know it will pour back into my mouth.

I hate this disease!

Add to this that my period has decided not to show up... no, I am not pregnant... but my ovarian cyst has been extremely painful for about 6 weeks now and it takes so little to cause very sharp pains in that area.  Something as simple as a deep breath will make me yelp in pain.  I am wondering if it has had another growth spurt and is adding to the emptying delay...

Who knows... because I have no access to a Dr to have anything checked out.

Going to an ER would be a complete waste of time... they would make sure I am not going to drop dead on the property and release me telling me to follow up with a Dr, which I can't do.

What I would not give to be knocked out for just a day or two and let my body rest...

Saturday, October 8, 2011

Mood- down
Health- down as well

I am getting so tired of being sick and tired all the time... sighs.

I rarely have the energy these days to even think of something to type about on this blog let alone remember it to actually type it out.

Friday, October 7, 2011

Mood- stagnant
Health- stagnant

The broken record of my life goes on... pain, sick, tired, brain fog and confusion abound.

Thursday, October 6, 2011

Mood- drifting
Health- ????

Still no energy for thinking... stomach a royal mess, fevers all the time, abdomen distended and painful...

Hopes to have more to write soon.

Wednesday, October 5, 2011

Mood- down
Health- down as well

Well, another day another short boring blog post about being in bed all day... a whole year of this is going to be very boring.

Tuesday, October 4, 2011

Mood- snarly
Health- gross

Well, I found out why they could not tell me at VCU when my EGD (upper endoscope) and small bowel follow through were scheduled and that would be because the dang things were scheduled for September 6 and no one ever bothered to tell me so I missed them!!!

This is just another "mistake" that has happened at VCU concerning things (past mistakes- them canceling an appointment and never telling me meaning a 180 mile round trip for nothing, them losing my only copy of my gastric emptying scan after promising to return it to me for over three months and never even loading it to the system as they said they would, putting a medication on my medical file that I have never taken that could have had serious repercussions if I ever passed out in their presence with my heart condition, rescheduling appointments and never bothering to call me to tell me <so I would have made another 180 mile round trip for no reason> and the new one, scheduling some important tests and despite my repeated calls NEVER TELLING ME when they were until A MONTH AFTER they were to be done!!!!!) which all means that even thought I desperately need medical treatment and the only option I have available to me due to my lack of insurance is VCU Health Systems I have two choices.

Stop going there and get no treatment at all...

Try to keep going and wait until one of their mistakes finally KILLS me...

An isolated mistake I can understand... but considering that they have actually made more mistakes <scheduling, notifications, medicine reporting errors, etc) than I have actually been there is more than just unacceptable! 

Monday, October 3, 2011

Mood- drained
Health- drained


Still not having much luck with energy or health... in a serious slump.

Sorry this is so boring lately, but I hope to pull out of this soon and have something better to write at that time.

For now it is back to laying down.

Sunday, October 2, 2011

Mood- zombie
Health- living dead

Still zero energy and the pain in my abdomen is just getting more and more bothersome and centering on the sides of my abdomen in the middle and lower abdomen and I have noticed that I am increasingly distended (bloated).

Since there is really nothing going on there is nothing to type about other than the same old same old... not an exciting life to share when it is spent in bed.

I can say that getting up to go to the restroom has become more exciting because no trip is made without at least one fall and I often do not even know I am falling until I am halfway down and there is nothing I can do to try to stop it.

Saturday, October1, 2011

Mood- sleeping
Health- zombie


A short blog today... I am just too tired to do much more than that.

Been doing nothing but sleeping off and on today, sleeping when the pain lets me and staring at the tv when it doesn't.

Hopefully tomorrow will be a more exciting day.

Friday, September 30, 2011

Mood- quasi-vacant
Health- quasi-living

Today I tried again (forever the optimist) to call VCU and see if I could find out what was going on when it comes to the two tests that were supposed to be scheduled... the first call ended after I was on hold for about 20 minutes and it hung up on me and the second call ended with me giving my name and number for a 'call back'.  They have never called back before and I doubt seriously that they will call back now.

On Monday I will be calling in one last time, and if I do not get any answers I will tell them to cancel my follow-up appointment because it would be useless to go for a follow-up on tests that are never done!

The care and concern for human life (other than their own) is shocking in it's lack.  

I also have not gotten a call or e-mail response to my plea to the Doctor at UVA... and this leaves me in the un-enviable position of having no possibility for care at all.

Yes... in America if you do not have Insurance then you become sub-human and as such you do not deserve medical care.

The SPCA will arrest you if you neglect an animal and do not get them the medical care you need yet there is no Govt entity that makes sure that human beings who need care are not neglected and left to suffer.

(Yes, a rant... I am in pain and grumpy)

On the bright side I had the mold for my new ankle brace made today (thank goodness this is a Workman's Compensation issue) and hopefully with the new brace (which I get in about 2 weeks) my ankle will stay in joint for a change.  I decided to go against getting a solid black one and picked a pattern with small boats and nautical items on a blue background.  It many not go with everything I wear, but I needed a bit of whimsy after today.

Thursday, September 29, 2011

Mood- iffy
Health- iffy

Super tired today... just keeps having v-tach attacks one after the other and I noticed that my blood oxygen levels seem to be dropping... not to a dangerous level (my normal is 99% which is great but today I have been around 95% which is abnormal for me) but still another sign that my health is trending south.  It does seem to happen when my heart is acting up that my blood pressure and blood oxygen start to go bonkers and this seems to be the case.

I have had percentages in the 80% range before, but I really do not want to go there again.

Add to this the rebound pain in my abdomen and I am wondering if a trip to the ER is in my future... not that I would actually go there (I am stubborn) but it might be a good idea to start thinking about it.

No call back from the Dr's office at VCU (I know, I am soooooo shocked) so ever going back there seems to be officially off the board now.

Unfortunately, there has also not been a response from UVA as well... and this leaves me not only with no options left but no place to look for new options.

Oh well, such is life...

Wednesday, September 28, 2011

Mood- ????
Health- broken record

Took a chance and e-mailed a Doctor at UVA hoping that they might be willing to help me in a last ditch effort to get medical treatment.  (Yes, there is still fight in the old girl yet!)

It is amazing how, when someone is at their lowest (and believe me, yesterday was about as low as I go) something or a series of things will happen that will give a glimmer of light in the darkness...

When I dragged myself online I found a response to yesterday's blog and was able to connect someone (who is a new part of my Gastroparesis Online Family now) to probably the best online support group I know of and there is absolutely nothing in the world that can add light to my life than helping someone else.  

Then I checked my e-mails (to see if the Doctor responded) and though he had not I had a very nice surprise in the form of a  inquiry from a Researcher and Global Medical Analyst who had found my website and requested more information (links to where I got my facts and figures) which I was happy to supply.  This reminded me that even though we do not see it happening right in front of us all the time there IS research going on and people are looking more into this incurable disease.

My personal health is no better... as I am sitting here I am struggling with the meal I ate three hours ago as it tries to creep back up my throat.  I did not want to eat at all but my magnesium is so low that the muscle tremors are almost like convulsions lately and I decided to risk some ground goat meat (lowest fat meat available and high in protein, iron and magnesium) but it is sitting like sharp rocks in my stomach and though I cannot vomit seems to be trying to crawl back up my throat instead of into my small intestine.  I have been really pushing the fluids as well lately and that is not helping matters at all, but my urine output almost stopped completely and it is either push push push and suffer the consequences or avoid the added pain and distension and risk organ failure.

Also had a couple of fun runs of ventricular tachycardia today... popped my pulse oxometer on my finger to watch the show as I waited for them to end and get my breath back... pulse looking like a bunch of toothpicks lined up unevenly across the graph in the 240 range and oxygen dropping swiftly... but after about 30 seconds or so it would go flat then be a bounding pulse and irregular before leveling back out and my oxygen would go back up.

Some might be wondering why I do not call an ambulance when that happens... and the truth is that it would be over by the time the 911 operator got to the point of asking the nature of the emergency and I can't actually speak while it is going on anyway.  There is nothing that can be done after the episode ends... and if it does not end, well... no help could get here in time to make a difference.  I can't even call out in the house for help when it happens so I simply have learned to keep my pulse oxometer handy and keep a record of how often it happens, how long it lasts, the numbers and any residual effects.  I have had a minor heart attack in the past and have mild heart failure (LHV, where the left ventricle of my heart has thickened walls that do not pump effectively) and the truth is that panicking about it will not do any good so I just go with the flow and when it is done resume whatever I was doing.

So, anyway... today is a mixed bag but I will take the good with the bad and be grateful for the good.

Tuesday, September 27, 2011

Mood- spiraling the drain
Health- somewhere near the u-bend


Days like today make it harder than hard to keep on fighting.

This morning I called the Gastroenterology clinic at VCU once more to try to find out why I have not heard anything about the tests that were supposed to be scheduled... and EGD and a small bowel follow-through to try to discover why I cannot drink fluids.

The first call went to a voice mail which I have left numerous messages on in the past in the vain hope tat a person might call back.  Then I called back and pressed O bypassing the menu completely to speak with a real live person.

It seems there was no record of all the calls I have made trying to find out when these tests were supposed to be done.  I reminded them that since I was to see the GI again on the 21st of October that these tests could not wait forever, since the reason I was going back was so we could go over the results.  I was then informed that the Dr had my appointment date moved to December!  I am glad that I found this out, because no one bothered to call me and tell me that they had moved the appointment and I would have showed up only to discover that the 180 mile round trip was useless because they would not have seen me.

I put in yet another request to find out when my tests were to be scheduled (there is nothing in the system even saying the tests were ordered) and to find out the results of my blood tests.

This is NOT the first issue I have had with the VCU Health System...

1. The GYN I saw there to have my large septated cyst removed not only refused to operate because I am a poor surgical risk but she also stole my only CD copy of my abdominal CT's and Gastric Emptying Scan.  I told her it was my only copy and she asked if she could borrow it to have it copied to my files swearing she would return  it to me.  She never did and soon after left VCU to move to California.
2. The same GYN put in my medical records that I self injected progesterone into my hip every evening!  I have NEVER done this, and having that in my records could have had fatal consequences because I have a heart condition and had I had a cardiac issue and they checked my files they would have treated me as if I did... which could have been FATAL!
3. Same GYN insisted I get a hormonal IUD even though I had a life threatening PID (Pelvic Inflammatory Disease) with rupture in the past and when I checked the manufacturer I found out that since I had a PID I should NEVER get another IUD... the GYN said it would be fine.  The hormones in the IUD were also contradicted by many of my health conditions "nothing to worry about" she said.... I refused.
4. Same GYN then decided that the birth control shot was the way to go... even though the same medical conditions were contradicted by the manufacturer.  I refused.  (The IUD and shot would do NOTHING for the septated cyst that kept leaking and I still have no clue why she was insisting on them and not treating the cyst!!!!)
5. I had a surgical consult to discuss having my hernia repaired at the same time the cyst was to be removed... before seeing the GYN.  Without telling me that appointment was canceled and I drove all the way there to be told that I would not be seen.  A completely wasted trip.
6. The Gastroenterologist told me to EAT FRUIT to try to battle my chronic dehydration!  Knowing that I have Gastroparesis he told me this... after telling me that Gastroparesis was not something that was treated at all except with Domperidone which is not available in the US.  Fruit is a MAJOR no-no for those with Gastroparesis due to the high fiber content.
7. When discussing the fact that I could not drink the Barium oral contrast because of the artificial sweetener used (all Barium oral has artificial sweetener) he called to the radiology department and confirmed that I was telling the truth then asked what could be used instead.  It was decided that I would (now get this) drink IV contrast dye to get the study done... even though I am allergic to all IV contrast!  He said it was not an issue and since it would not be injected into my vein it would be fine????   Funny, last time I checked if you are allergic then you are allergic, but I desperately need the small bowel follow-through and was willing to take the risk as long as a crash cart was handy.

After all of these MAJOR issues with VCU I have decided not to ever return there... it is just not safe and I cannot trust them, which is sad since that is a teaching Hospital and this is the kind of crap that goes on there it does not give me much hope for the future of medicine.

My only other option for Healthcare is UVA... which is 4 hours away and would be even harder to get to because of the cost of gas on my husband's unemployment.  I know that they have the same indigent care program as VCU and I am going to try to see if I can be accepted but I do not know if it is really worth the fight anymore.

My health is declining... the pain in my abdomen is getting worse and worse with sharp stabbing pains... the nausea is unrelenting and I wish I could vomit and would give anything to have that ability back... the distension to my abdomen feels like I am being torn in two, the skin burns so bad... the ringing in my ears is keeping me awake all the time... the dehydration has my flanks aching hard like nonstop punches... I can't think half the time and am having debilitating mood swings and snapping at everything and anything because I just cannot follow what is being said and it is so frustrating.  My heart just keeps going into v-tach stealing my breath and when I try to sleep the quivering of my muscles shake the bed jarring me awake...

Yes, I know... I will bounce back and fight my way through this... but right now I have a wounded spirit and have given up.  I am so tired... I just do not have any fight left right now.  

It just should not be this hard to get treatment for a known condition or known conditions... it should not be impossible to see Doctors you trust because you lost your insurance and became no more to them than human garbage... to be told "come back if you ever have insurance again".  

I do not deserve this...

Monday, September 26, 2011

Mood- down
Health- gutter

I am pretty sure that if I were to be visiting a Doctor today they would instantly decide that my mood (depressed) was the sole cause of my Gastroparesis (as they are wont to do).

Here is how it goes...

They (the Doctors) will come in and do a quick exam or not then ask you about your symptoms and possibly discuss tests... then the gleam enters their eye and they ask the question that will make everything your fault no matter how you answer-

"How are you doing emotionally?  Are you depressed?"

This is a loaded question because there is no answer that will not have them turning it on you and making the fact that you are sick your fault.

If you answer correctly with-

"Yes, I am depressed... I have an incurable illness that makes my life a living hell" then your Gastroparesis is caused by you because it is a 'known fact' (though I have yet to find a single study that proves this in medical archives) that depression causes delayed gastric emptying and hence it is all in your head and what you really need is mental help from a Psychiatrist and not a Gastroenterologist. 

If you do not want to be told it is all in your head so you outright lie with-

"No, I am managing fine" then they assume that you are enjoying the attention you are getting for being 'ill' and are probably faking, and you need mental help from a Psychiatrist and not a Gastroenterologist.

If you try to sidestep with-

"I am no better and no worse than anyone else going through what I am" they then push you to give a more straight answer because obviously you are depressed or stressed which makes it all in your head or you are handling things fine which means that you are faking and need mental help.

Don't even try to turn the question on them with-

"How would you feel in my position" because they would assure you that if they were in your position they would be living an active life full of world travel and bringing peace to regions that have never known peace while gnawing on volcanic rock for nutrition and drinking ambrosia.

I would love to see them try to pull the same reasoning with anyone else who has a form of nerve damage!

Will they tell people who are paralyzed from the waist down that all they have to do is talk to a Psychiatrist and they would not only walk again but would run marathons?

Will they tell people with MS and ALS that their depression over having the conditions has actually caused the conditions and they need to get over it to be cured?

I cannot think of another condition where the victims are blamed so much by the Doctors for having it except for alcoholics and liver disease, smokers for lung cancer and the morbidly obese for diabetes!

We DID not do this to ourselves... we did not do dangerous activities to get this condition... there is no warning label on a virus that reads "Warning- catching this might cause you to never be able to eat another meal in your life without pain and nausea and could cause you to starve to death", no campaigns on TV or groups of outraged citizens banding together to stop the wanton destruction of nerve conductivity!

We are the VICTIMS yet we are treated like we have brought it on ourselves!

We are given 'the look' when we decline foods that we love because we know it would make us sick by friends and family...

We are blamed by Doctors, being told that because we have the condition and are depressed at the major impacts it has on our lives we are in fact causing the very condition that caused us to get depressed! 

There is a huge amount of stress and guilt placed on US because WE are being difficult... we refuse to simply fade away without a whimper... we refuse to eat things that make us sick just to avoid hurting the feelings of others... we refuse to suffer in silence all the time.

Yes, I am depressed!

Three days ago I was speaking to my husband about how much I loved and missed chocolate but could not have it anymore because it caused my GERD to act up severely and I would wake in the middle of the night choking on the contents of my stomach.  I cannot vomit (I lost the ability to do that no matter how much I wish I could at times) but food can still crawl up my throat if I bend over or lay down.

Today he had to run an errand and decided to stop at a dollar store and get me a 'treat', to be nice and because I have been so down lately.  He brought me a huge bag of all kinds of goodies... Hershey Bars, Milky Way Bars, chocolate snack cakes... then was offended and defensive when I was hurt by it.  He then lectured me that I never said I could not have chocolate and insisted that when I said it, it was for that day only and he was only trying to be nice.

So, I am the bad guy and get the guilt trip because he did not listen to what I was saying (he still insists I am wrong) and in the house are chocolate temptations that I would nibble on in a heartbeat but can't because I do not want to choke in my sleep.... but oh, how I want some.  I think what he did was cruel... he thinks that I am being unreasonable and not understanding HIS feelings.

Why the heck would someone be depressed?

Just because you cannot eat food?  Just because you cannot drink enough fluids to keep your kidneys functioning?  Just because you are in constant high levels of pain and can't even take a baby aspirin for it?  Just because you open up and talk about your losses and someone brings you and presents you with just what you crave the most and you can't touch it?

I need an attitude adjustment...

Sunday, September 25, 2011

Mood- dream state
Health- asleep

Just what kind of post does one make when they have been doing nothing but sleeping?

My friendships (all online since any friends that I had before the internet have faded away long ago) are suffering because I just do not have the energy to interact and think, it is often all I can do to post to vote for my entry in the Reader's Digest contest on facebook to try to raise Awareness of Gastroparesis by having my story published in the magazine and try to follow their posts.

I often feel lately like I have let them down majorly because I am not able to give them the support that I used to, mainly because the moment I start to post a comment to what they say my mind goes blank and all I can do it post a hug... if I remember to hit the enter before I leave that page.

I want more than anything to be able to interact and help out where I can but I just can't seem to do it lately... actually not so lately, because this has been an increasing issue over the past months.

It has gotten so bad that I will fall asleep (often with my hands on the laptop) then wake and see that it is dark and be in a panic because I do not know what day it is and if I remembered to do my daily blog post so I have to check my cell phone to see what day it is then check my blog to see when the last post was made.

This happens daily, if not a couple of times a day and I always seem to be waking from sleep in a panic that I missed something and not being able to remember what I missed.

My cell phone itself rarely needs charging anymore because I just do not get the text messages and phone calls that I used to... mainly because I would not respond for a long time (asleep and missing the texts or calls until it is too late and I do not want to wake anyone then forget that I got one) or because I would see that I missed a call and then forget that I missed a call.

Malnutrition and dehydration from Gastroparesis not only robs you of the energy to do much at all but it also robs you of your friendships as your friends believe that you are pulling away when in fact you still think of them often and try to follow their actions online but just cannot think clearly enough to interact without feeling like you are not understanding what they are saying or you are trying to reply.

If this post makes no sense, I apologize... what I wrote confuses me as well.

Saturday, September 24, 2011

Mood- so-so

Health- not so-so but simply so

Today's post is about a phrase that many with chronic illness often hear-

"You are so strong and upbeat... I don't know how you do it..."

While those saying it mean it as praise and as a positive thing it can actually be seen as a very frustrating thing because in all truth, what choice do we have?

We are 'strong' because we have zero choice in the matter and in truth what people see as being strong is in reality struggling to live and managing to make it one more day.  What is seen by others as strength is in reality us struggling for any little aspect of 'normal', of being just like everyone else.  

It does not take strength to go from Doctor to Doctor and Hospital to Hospital... to endure painful tests and procedures... to get out of bed in the morning...

What it takes is will to live and try to have a 'normal life'... it is not strength that drives us but knowing that if we want to have any life at all we have to fight for it.  The 'simple things' are not so simple for us and people see us struggle so they offer words of praise "you are so strong" but they never think about what real strength is.

Real strength is the person that knows they are weak and even when they give in and give up they still fight for that next breath.

Real strength is holding on to that last thread of hope no matter how hopeless a situation seems.

Real strength is rarely upbeat and chipper... that might be the mask worn when people are looking but in truth real strength is bone tired and aching, it is feeling helpless and worn down by life.  It is crying into your pillow when no one can hear you and staring at the ceiling or walls for long periods of time because you just do not have it in you to do anything or cannot think straight enough to remember what you were going to do in the first place.

As for being 'upbeat'... that is often for others benefit and not our own because pity is the last thing we want or need.

There comes a point in every chronic patient's life where it is hard not to cringe when they hear the words "I am so sorry you are going through that" or "I hope you get better".

First off... please do not feel pity for us or feel sorry for us... you did not cause it to happen to us so you have nothing to feel sorry for and your implied guilt makes us feel guilty that we made you feel that way.

Secondly, saying that you hope that we get better is almost like saying to someone that lost a leg "I hope it grows back".  An incurable condition is just that... incurable... there is no getting better from it.

I know... we know... that these things are only said with the best intentions and are not meant to hurt and I am not trying to lecture anyone for saying them... what I am trying to do is raise understanding so that those awkward moments can be avoided.

With this in mind I am going to post a list of things that can be said and asked (and please do ask, because one thing we want more than anything is understanding and awareness).

• Is there a cure?
• Are there treatments?
• Is it contagious? (this might sound like a strange question to ask, but it is in the back of everyone's mind and asking will open the door to learning more)
• I hope that it calms for you and you are feeling better soon. (this shows that you know that the person will not get completely well but you still hope that they will feel better)
• Where can I find out more about it? (yes yes yes, ask this!!!  we are always willing to share how to learn more)
• Are there many doctors that treat this? (you might be surprised by the answer)

When all else fails, a hug goes a long way because often people are afraid to touch us, afraid it will hurt or somehow they will be contaminated by the touch.

So... in the end just remember... we are 'strong' because we have to be and we are 'upbeat' because we try to hide the real face of that 'strength'.

Friday, September 23, 2011

Mood- tired tired tired
Health- blech

Had my appointment with the ankle/foot doctor today...

The strange thing is that while I have trouble finding a Gastrointestinal doctor that knows about Gastroparesis and treats it I have an Orthopedic Surgeon that knows about it!

After the exam on my defunct ankle she asked me how my Gastroparesis was and I told her hot the Gastroenterologist told me to eat fruit to battle my chronic dehydration and her reply was to roll her eyes and say "you are not going back there are you?"   Keep in mind that the GI doctor in question was in charge of the GI clinic at a Teaching Hospital!

On the foot front, we are going to try one last style of bracing to keep my ankle in joint while waiting for me to be healthy enough for and get medical clearance for the amputation (something that cannot and will not happen until I can take medication... and without a GI that actually knows more than a foot doctor about Gastroparesis there is no clue how long that will be).

Other health-wise it is pain pain pain and tired tired tired... slept much of the afternoon after I got back from the Doctor's office and just got up a little bit ago and ready to go back to sleep, but doubts my stomach, ankle and the rest of my body will allow that to happen any time soon.  One can hope....

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Remember to go to my entry in the Reader's Digest "Your Life" contest on facebook and vote daily... still in the top 10 but in order to increase chances of winning and having a story about Gastroparesis published in it (making Gastroparesis a household word) it needs to be higher in the standings.

Thursday, September 22, 2011

Mood- hopeful for tomorrow
Health- roller coaster

Tomorrow I go to see my ankle Dr to see what is going on with my heel...

In 1999 my first surgery (the infamous one where my BP went up in the middle of surgery, they treated it and my BP vanished completely leading to a week on a ventilator in CCU with my foot being held together with plastic wrap then another surgery a few weeks later to finish the surgery under spinal anesthesia) they cut off my heel-bone and moved it to the outside about 1/4 to 1/2 an inch and I swear that there is still a sharp ridge or shelf there, but that is not what is going on now.  

To put it plain and simple... my heel hurts.

It hurts to put pressure on the bottom of my heel and with every step I take... and probably has a lot to do with the fact that my heel takes all my weight and I do not and can not push off with my toes with every step... it is more like walking on a peg leg with my heel as the peg.  After over a decade of this happening there is probably some damage happening in the bone itself (heel spurs? micro-fractures? downright crumbling?) and I need to find out what it is before things progress to a point that it is impossible to walk at all anymore.  It is not that I do a lot of walking to begin with (I am lucky to walk 50 yards a day) but I would like the option.

It is going to be a bit of a round robin as I am sure one of the first things they will want to try is cortisone shots, but I can't have those... so they will then want to try that injection for joints that adds a layer of protection to damaged joints but the fluid they use contains eggs, and once again a no go.  

And, of course, pills for pain management are not an option for me... so this is going to be a very frustrating appointment for the Doctor I am sure and I really do not expect to have what is going on 'fixed'... I just need to know what it is and what I can do to prevent further damage.

Once again it is my Gastroparesis sticking it's nose into the business of other body parts and functions that is making treating anything so very difficult and why I am mentioning the ankle and heel issues here.

If I could take pills (they sit undigested in my stomach for so long they literally eat into the stomach lining and duodenum causing ulcers) then I would be in so much better shape health-wise and better equipped to handle every day life.  My blood pressure, thyroid, heart rate issues and more would be treated...

If I could take the liquid medications available (they are all formulated with artificial sweeteners to be diabetic friendly which is a major migraine trigger for me) then I would still have a fighting chance at things...

If I was not so severely allergic to adhesives then I could use the patches available... but in order to use the patches I have to be on high doses of Benadryl, which I can't take as a pill or as the liquid...

See where my frustration and the frustration of my doctors comes in?

My one and only visit to a GI since we lost our insurance I begged and pleaded for a J-tube so I could take medications and get fluids through that but was told I was not thin enough for them to consider that and was 'informed' that pills dissolve in the stomach and would not cause any issues... even though when I could still vomit I would throw up pills (plus a little blood) hours after taking them still in very recognizable form and have EGD proof of the damage.

So... as a result of not being able to take medications I always get the same frustrating thing from doctors when I go see them-

"What do you expect me to do since you can't take anything?" (accompanied by a condescending smile, shrug and palms up)

Guess what... I am NOT a friggin doctor and I expect them to THINK OF A WAY to FIX IT so I CAN take medicine!!!  They are the ones with the fancy degrees on the wall, yet I am the one that has to live this life...

So... anyway... tomorrow I go to see my foot doctor... 

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Reminder to please please please go to my story entry in the Reader's Digest contest on facebook and vote daily.  We desperately need awareness and better treatment options and Doctors need to learn more about this terrible condition so they start treating it properly and those like me can have hope for a better quality of life.