Thursday, June 30, 2011

Mood- cranky
Health- ugh

Today's blog will be short...

My eyes are puffy and trying to swell shut... a reaction to ground bee (some call them yellow jacket) stings I got when I decided to do a little weeding and prepare to get those saplings in. One tug ended with me in a swarm and crawling away as fast as I could (my forearm crutch was in the middle of the swarm and I was just trying to get away) while they took up a mad stinging pursuit... ugh! Luckily my husband was outside as well and got my crutch and helped me up so I could get away and make sure they were off me so I could get inside. I do not blame the bees... when I pulled the weed it ripped their ground nest open and they were only protecting their home and though I had some reaction (asthma attack and tachycardia and soon after general puffiness and swelling) it was not a severe reaction.

I will write more tomorrow, but right now I need to rest.

Wednesday, June 29, 2011

Mood- better
Health- drained

This morning I went to the Salvation Army to get some assistance and was given some absolutely wonderful information that I am going to pass on to you, because these resources are not commonly known but can ease the stress and financial strain of many.

If you have insurance you have a co-pay, and sometimes those co-pays can be crippling on their own, espcially if you have a chronic condition that necessitates frequent trips to the Doctor or alot of prescription medications.

If you need co-pay assistance you can go to www.copays.com and make contact with them to see if they can help you with your co-pays.

If you are having issues with the insurance company (denials, rejections, etc) you can go to www.patientadvocate.org and request assistance in navigating insurance and getting the most out of it.

If you need help with youe electric bill or rent (cut-off notice or eviction notice) due to finances (unemployed, etc) you can call 211 (in most states) to get connected to different energy share programs and rent assistance.

There is help out there, they will not take care of everything, but they will give you breathing room and just knowing that there are people and organizations out there that will help you navigate the financial aspects of chronic illness.

It is exhausting and it is humbling to admit that you need help and to reach out, but it is worth it.

On the personal front, the copays.org will not help me since I do not have insurance, but it is such a great resource that I had to pass it on. Today was very exhausting, my energy was low to begin with then to have to get up and leave the house and go to the Salvation Army and explain to them why we are in the situation we are was emotionally draining so by the time I got home I was limp as a noodle and negative two spoons in energy, but I am so glad I did it.

This is one thing that I want to pass on... one suggestion... if you find out about a program or service, even if it cannot help you... pass that information on to others it might help! You could be taking the strain off of someone else and they might know about something that would not or could not help them but can help you.

Sharing is caring and this world needs more of both!

(Sorry for any typos, spell checker does not want to turn on tonight, I will edit it through checker tomorrow to fix any errors)

Tuesday, June 28, 2011

Mood- hectic and stressed
Health- bad due to stress

Today has definitely been a challenge and getting the energy and will up to blog is a major victory... life is just not supposed to be this hard.

We are going to the Salvation Army tomorrow to try to get help for our suffocating bills then the local Food Banks on Friday and my husband needed to get a copy of his unemployment determination letter for the Salvation Army to prove our income level... and he found out that though his unemployment would not 'end' until the end of August the last check will come the last week of July. He can apply for an extension in September... but that means that even though we have no money, bills are all way behind and we are drowning we will have even less money soon... yet the bills will keep rolling in.

This is all very stressful and though I am trying hard to hold on I think it would be better if I allowed myself to lose it because the stress is going to kill me. My heart rate is all over the place... bounding then gone then weak then strong, erratic and just all over the place. The batteries died in my blood pressure monitor, so I have no clue what my BP is, but if the ringing in my ears and thunderclap headaches are any indication it is being extremely labile... zooming up and down just as much as my heart rate. My pulse/oxometer shows me my pulse and the strength of it... but not the pressure... but as long as it keeps beating I am good!

I am NOT the only one going through this situation... many friends of mine are in the same boat... not only must we worry about bills, keeping a roof over our heads, food for our families but we must also worry about our health because we have no insurance and cannot afford to go to the Hospital.

Looking at unemployment in the face is bad enough... but add to this an incurable chronic illness and you have a recipe for disaster... then add to the mix the knowledge that if our spouses do get employment we will be uninsurable until January 2014 when the Affordable Care Act will force Insurance companies to offer us coverage.

When I hear people use the term "Obamacare" and scream to have it repealed I take it personally... because while it will not affect them at all it can be the difference between life and death to me and millions like me... they are not attacking a healthcare bill... they are attacking my only chance to get quality healthcare! They are saying that they do not want to have to wait a few extra days to see their Doctor (yes, I have been told this to my face) just so some 'drain on society' can see their Doctor! In other words... my life is not as important as a few days inconvenience. How could I not take that personally? How can the millions in my position not take that personally?

States are cutting Medicare and Medicaid, removing services to balance their budgets, so those on disability and unable to work are also being left out in the cold with less and less availability to get the care they need...

I hope and pray that those reading this are not in that situation... and hope that you never get in this situation, because I would not wish this on my worst enemy. You have no clue just how lucky you are if you have good health... none at all.

Monday, June 27, 2011

Mood- vacant
Health- drained

Well, it is one week until July 4th... and you know what that means... cook-outs with hamburgers, hotdogs, chicken, ribs, steak, salads, corn on the cob, watermelon and all the other goodies enjoyed on Summer Holidays.

For those with Gastroparesis and other Digestive Tract Paralysis conditions it means something else entirely... it means isolation and depression.

While we love being with friends and family, being at gatherings that are centered around food often is torture. We smell the smells of the grill and watch others eat the foods we would give anything to be able to eat again. While others are complaining jokingly about getting sauce or watermelon juice on their shirts we are either quietly apart or sitting there with a grin plastered to our faces as we sip at a drink and act like it is not bothering us.

I could ask friends and family to do a "DTP" (Digestive Tract Paralysis) friendly gathering, where the choices are limited to smoothies and easily digestible foods (nothing raw, nothing with skin, no fiber, no fat... basically everything can be cut with a fork) it would be unfair to them... but when is it fair for us?

I doubt seriously that people would pass up a BBQ elsewhere just to sip smoothies and eat softened often bland foods with me, so I will try to find something that I can eat at gatherings... and often pay majorly for trying to "'fit in".

Holidays are often this way... we love our families and want to be part of the action... but holidays almost always revolve around food of some sort so we know going in that it will be hard on us emotionally to attend but it would be even harder to stay home knowing that your friends and family are together and you are missing it.

Add to this that many gatherings are 'pot luck' so you make a dish you love but can't eat and take it with you to watch others eat it.

A compromise would be great... if at a BBQ there were all the traditional foods and maybe a 'make your own smoothie station' with different fruits, yogurts, milks (regular, skim, almond, etc) instant coffee, chocolate and ice were available so guests could make smoothies. I have a feeling that a lot of people there would love to make a smoothie on a hot day to sip and you never know if one of your guests has a condition (like Gastroparesis) where having such a thing would take the sting out of the day and make them feel involved and included.

On the home front, it was a major struggle to get the 'oomph' up to pull out the old laptop today... this social experiment is harder than I thought but as long as people are willing to be bored out of their skulls reading this blog I will keep writing it. :~)

Oh, the Awareness video is done and can be seen at http://www.youtube.com/watch?v=pmQwvJ2EkHo

(Sapling-gate is still ongoing, those little tree hostages are keeping the faith and hopefully one day soon they will be liberated to the soil)

Sunday, June 26, 2011

Mood- weird
Health- tired

Well, the past 24 hours have been a blurring mix of editing an Awareness Video, asking friends to look for typos then redoing it and posting it to YouTube, then more typos being found, so re-editing and re-posting... repeat until it becomes surreal then do it a few more times, lol.

I think that I have it error free now and will be re-posting it again to YouTube (will post the link tomorrow).

A lesson to the wise... do not try to do a video with a lot of captions when exhausted or in a brain fog! (Then again, I live in that state so chances are that this will happen again and again)

I have been dealing with weirdness, what I kindly call "weirdpennyitis" the past few days and it is hard to explain exactly what I am feeling.

My heart is bounding (pounding and racing then slowing) all the time now and my muscles are in full twitch/spasm mode... either I can feel individual muscle groups moving and jumping or it seems like my whole body is and there is an earthquake going on. I know this is from magnesium deficiency, but I have only 1 Pediasure left and since that is my only source of magnesium it will only be getting worse.

I am freezing cold and hot at the same time and my whole body feels slightly numb and tingly but it is how my head feels that is the true "weirdpennyitis"... for the past three days my head has felt... well... big. It feels numb (the entire head) but when I touch my skin I can feel it so I know it is not numb. Add to this that my legs tremble and give out every time I try to do any walking and I know that malnutrition is starting to really affect me.

What can I do about this?

Well, if I had the gas I would drive the 90 miles to the only ER I have coverage at (through their health care for the indigent) or I could call tomorrow to see the doctor there in the clinic only to be told that at my weight (I am one of the 'lucky' ones that gained a lot of weight due to Gastroparesis so even though I have dropped a lot of weight that Doctor, who only knows the word Gastroparesis from medical school and believes that it only happens to Diabetics) that there is nothing wrong with me and will refuse to do blood work to check. So... I will do nothing but try my hardest to find a way to get magnesium, potassium, protein and electrolytes into me.

So... this is two weeks into my little social experiment and despite being exhausted I have managed to post every single day. This is a major victory for me!

On the sapling front, they did not make it into the ground today... but the yard was cut and I have been told that they will get in tomorrow (where have we heard this before?)

Saturday, June 25, 2011

Mood- frantic
Health- moody

I almost did not get on in time to do today's post... so many fires on the burner and so little me... whew...

Think that just because I am bed bound I am not busy with a million and one projects, think again.

Like many in my shoes, I have a lot of things going on at once... I have an online store that I place Awareness and other items on where the proceeds go to WWW.G-PACT.ORG, at www.zazzle.com/syralia that I am always making designs and sayings for, another new store that I am hoping will bring in a little cash to pay for things like toilet paper and hopefully pay some medical bills for myself at www.zazzle.com/bumperstickerstore a website for Gastroparesis Awareness that I run to help raise awareness at www.gastroparesis-awareness.com and am working on a book with other Gastroparesis and Digestive Tract Paralysis conditions for G-PACT to help raise Awareness. (Though I do all I can to help G-PACT I am not an official member or volunteer... you don't have to sign on as an official volunteer to help!)

The President of G-PACT is herself a 5 organ transplant survivor, Gastroparesis and Chronic Intestinal Pseudo-Obstruction patient and has her hands on many more kettles than I do... I often wonder how in the world she does it all!

Today has just been a blur, because I have been working on a video to place on YouTube to help raise awareness and completely lost track of time and was just informed that I have not had anything to eat or drink today... ooops!

I am dead tired... exhausted... but so many ideas are swimming through my head and thanks to the memory issues from malnutrition I know that if i do not act on them I will forget all about them, so act I do... and I pay for it with a smile!

On the sapling front... they are still sans ground, maybe that will change tomorrow?

Friday, June 24, 2011

Mood- bored
Health- same

Today I had a lot of trouble coming up with a blog idea... I mean.. come on, just how many exciting things happen to someone who is all but bed bound and never leaves the house? I doubt anyone would be interested in the fact that I fluffed my pillows or hear about my three hour search for the remote control for the TV (it was under the pillow, should have flipped it earlier!)

The truth for many suffering from Invisible Illness is being house bound if not bed bound. Energy is in short supply so getting 'out and about' is often dreamed of but rarely realized which only adds to the isolation... which feeds the depression... which makes the person not want to get up.

It is a cruel cycle... one part feeding another part over and over, but to break the cycle first you have to feel better physically, and for someone with an incurable chronic invisible illness this is not a possibility.

Many do strive hard to get out and about, depleting already depleted energy stores in order to have human contact, pushing themselves to the point that their bodies often break down and they end up sicker than before.

I, personally, push myself about 6 times a year by going to visit my family out of state and other than that I might get out of the house once in between trips to go to the store (which is to me like going to an amusement park with others). I see going to the store as excitement... I see other faces... I hear voices and see the outside world. It takes a lot of planning and energy to get ready for the store... and by the time I am ready I am exhausted.

At the store I use either my own wheelchair or the store's automated carts (though these are not always available) but even with that it is exhausting; though I will push through it just to have the experience. By the time I get home I am often close to tears... the pain can be overpowering, the nausea devastating and it can take me days to recover... but it is always worth it.

After a trip to visit my family (where I push myself to new levels, trying hard to get all I can out of the visits) I am usually not just bed bound but exhausted beyond recognition. My stores of energy are completely tapped and my body always makes me pay with chest pains, spasms so hard it feels like a seizure and often infections attacking my depleted body.

Yet... I will hear people say things like "you are the healthiest looking sick person I have ever seen" or "you are losing weight, good for you!". Yeah... it might be good that I am losing weight, but not how I am losing it and the fact that the loss will continue long after it is a 'good thing'. I am glad that you think I look good, but that is the cover... and I wish you would instead read the book.

On the sapling front, they are still holding on and I have been told that they will go in the ground this weekend... we will see.

Thursday, June 23, 2011

Mood- energized
Health- de-energized

There is a surge in the Gastroparesis/Digestive Tract Paralysis Conditions patients brainstorming for ways to raise Awareness! Patients are coming up with so many ideas to get the word out and struggling so hard to get people to listen...

A stranger who stumbles across this blog might think "I thought the patients were all really sick and did not have the energy to do things like that" or "I will care about it when it happens to me, but it can't be that bad".

Yes... the vast majority of the people who are striving to raise Awareness are patients... this is the case in most condition Awareness activities. Yes... they are very ill, struggling to make it through daily tasks and yet they still work hard at trying to get the world to care.

You do not want this to happen to you... believe me, it is not something that you want to suffer with. Imagine never being able to eat your favorite foods again... never enjoying a fresh salad, fresh fruit, a burger... no going out to eat and scanning the menu trying to make your mind up. Instead you will hope that you can get plain mashed potatoes as a stand alone side. You will battle to find a Doctor that knows enough about it to treat you at all (and be frustrated to tears by those who know nothing about it) and watch your friends melt away as they either grow tired of your missing activities or believe that you are faking.

Think it is not a 'big issue'? Here are some numbers for you for comparison-

• 
  
  It is estimated that one out of every 110 children are Autistic


• 
  
  12.2 percent (12.2 out of 100 women) in America will develop Breast Cancer


• 
  
  Approximately 250,000 to 350,000 people in America have MS

Yet... up to 4% of the US population (or one in every 25 people) is affected by Gastroparesis! (http://www.medscape.com/viewarticle/563730) That puts the number at around 13 million Americans with Gastroparesis!

Jaw drop yet?

Awareness is just not out there... people know about Autism... they know about Breast Cancer... they know about Multiple Sclerosis but unless you have been diagnosed with it (or a friend or family member has) chances are your reaction to the word is "Gastro-pa-what-sis?" (I am not in any way, shape or form, downplaying the devastating affects of these conditions... I am just using them as examples of how the percentage of those affected and Awareness at large do not always go hand in hand.)

You have a greater chance of having Gastroparesis than being born with green eyes (1-2%).

On the home front-

The pain is still there... stabs of acid dipped knives in my abdomen that like to mix in with the constant squeezing ache that is a daily companion.

I am still falling behind in my liquid intake... 12 ounces total for yesterday and my body is telling me that it is not happy with headaches and reduced urine output (plus my kidneys adding their jabs to remind me that they want more green tea, please). Today I am at about 5 ounces... how I wish I could just sit in a tub of green tea and absorb it through my skin so my balky stomach would not have to try to squeeze it in.

Those saplings are real fighters... still green and thriving despite being in buckets of water... they will go into some major shock when they hit the dry drought soil and I will have to make sure they get watered constantly until they get used to being in the dry South.

My little dog (Loki, my long haired Chihuahua, Service Dog and fellow Gastroparesis sufferer) is doing better with the introduction of a tablespoon of Ensure twice a day in his diet. He was having a very hard shed (undercoat matting), his coat was dulling and he developed 'trembles', all indicators of malnutrition, but after a week of Ensure the trembles are gone, the matting has stopped and his coat blowing out well and it is shining like copper.

My 'trembles' on the other hand are making life a challenge... between that and the sudden muscle jerks (warning, if I hold it, it may fly across the room) I am having a hard time typing or writing (thank goodness for spell check) and sleeping has become a martial arts event (and not in a good way... sheesh, what a dirty mind!)

Tomorrow is another day... and I am hoping for a better one.

Wednesday, June 22, 2011

Mood- down yet up
Health- challenged

It has been a very rough week in my Gastroparesis world... so many of my friends, people near and dear to my heart are having a very rough time right now.

One is facing unrelenting rib pain, a possible fracture (?) from reduced bone density from malnutrition and the multiple medications she must take... One is having her stomach removed tomorrow in an attempt to be able to get nutrition into her poor body... One is in the hospital on oxygen struggling so hard... One's husband lost his job and they are about to lose their insurance (something I know about all too well) and this is only a sampling... so many I love battling an Invisible Illness that more should know about because it is not rare at all... more people have this than other conditions out there that have much better awareness.

You would think that with this going on they would be focusing inward, thinking only of themselves... but no... they are reaching out and offering support and comfort to others and putting others first.

These are the People of Invisible Illness... these are the sufferers of Gastroparesis and every single day they inspire me in so many ways.

Teens with Gastroparesis are making Awareness videos and posting them on YouTube (http://www.youtube.com/watch?v=I7kt3CFTDm4&feature=uploademail http://www.youtube.com/watch?v=a1w0V-hMIuk&feature=share http://www.youtube.com/watch?v=aCrfgcyO2NE&feature=share are just a few of them) Take a minute to watch them and you will see what bravery is.

On the "home front", I am struggling with the pain and the battle to get my fluids in. I try to get at least 600ml in every day (just over 20 ounces) but in the past 24 hours I have only gotten 9 ounces in... not good since I am always mildly dehydrated and can't risk tipping that teeter totter beyond that because I can't go to the ER (the only one I can go to is over 90 miles away and I do not have the gas money) for fluids and once it reaches the moderate dehydration stage (which I am getting close to) it is much harder to get the fluids I need in.

The pain is bad... and every once in a while there is a stab that comes out of nowhere that I cry out from, making my Service Dog (who, by weird chance, also has Gastroparesis) Loki race in circles growling trying to find whatever it is that is making his Mom yelp. Laughing hurts, but I can't help but laugh when he wants to take on Gastroparesis for all of us!

On the Sapling front... they are still green and alive... my husband has been keeping them watered and adding mild fertilizer and I hope that they get in the ground by the weekend.

Tuesday, June 21, 2011

Mood- ambivalent

Health- blargh (I wonder why I keep this thing since it is kinda unchanging, lol)

Today I discovered a major plus for keeping this daily blog... I actually know lately what day of the week it is!

This might seems like a strange comment, but you have to realize that I am pretty much bed bound and never really anything to break up my timeline... no working so no weekends to look forward to and as a result I would often wonder what the date was... or the day of the week.

I do not always watch TV, so I cannot tell the date by the shows that are on... I do not get the paper so I do not get the weekly reminder of the Sunday Comics and coupons. I would lose entire days, thinking it was a Monday when it was a Tuesday then being very upset that I had lost an entire day in my life and no clue where it went.

Time moves differently for those with a Chronic Illness... no longer are there days of the week with weekends as comforting bookends... there is "at the Dr today" and "went to the ER yesterday"... there is calling in refills before you run out and counting pills not days. Some days drag on forever when the pain or nausea eats at you slowing the hands of the clock and other days pass without notice because you are in such a fog from the physical aspects and the emotional aspects that they blend together and you don't know if you did something that day or the day before.

As alien as the schedule of life of a person with a Chronic Illness sounds to you... your 'normal' timeline is alien to us and sounds fascinating and exotic. To actually have a schedule that you can follow every single day??? Getting up at the same time at least five days a week??? Making plans and never doubting that you can do those things??? It sounds like a fantasy, some fairy tale told in a far away land where kissing a frog will bring a prince with a 3 bedroom house in the suburbs, two cars, 2.3 children (I always wanted to see the 0.3 child) and a dog... where neighbors dropped by for impromptu cook-out, the men went to work in suits and the women cleaned the house in dresses with full make-up and hair styled.

Oh, I should mention that those little saplings are holding on to hope... maybe they will get into the ground here soon? (I hear Vegas is now taking bets)

Monday, June 20, 2011

Mood- denial

Health- challenging

I waited all day for something to happen worth blogging about... I can't imagine how bored you are reading this. (no Refunds)

The saplings are still alive an awaiting planting...

The financial aspects of living like this are soul stealing to say the least... picture needing something and knowing that you do not have the money, have no way to get the money and no matter how bad you need it you will have to find a way to do without. I am a female... so you can guess what I need and have no way of getting... TMI times infinity, I know, but I promised life and the challenges and you are getting them.

I am working up the gumption to call the FoodBank to find out if they can help, but they might have trouble understanding why an adult would need nothing but baby food, pediasure and mashed potatoes. I was very lucky last month with coupons and managed to stock the house well with foods for my husband for almost nothing, but the foods and items I need are rarely on sale that a coupon will make enough of a difference with.

Think it is cheap to have a condition that makes eating a challenge? Think again...

Pediasure (that nutritional drink for children) costs on average $11.99 for a six pack, each one gives 240 calories and I should be drinking 2 a day to get the vitamins and minerals I need It can't afford to buy them every 3 days so I instead only drink one when my muscles are quivering and spasming so bad from magnesium deficiency that it feels like an Earthquake to try to stretch them. (Ensure is cheaper by about $3 but I do not tolerate it) Baby food jars might be cheap, but when grocery shopping I do have to buy the foods my husband needs and those little jars feel like a luxury item that we really can't afford, so I try to find things that we both can eat. I cannot eat beef... chicken and turkey often make me very ill, so we have to get venison (I get that when I visit my Parents in PA because it is only $6.29 a pound there), buffalo (10.99 a pound) and ground goat (which comes from a local butcher at 7.99 a pound but you have to buy at least 10 pounds and order it in advance since goat is not always available). What I would not give to eat corn... sighs.

So many who are suffering from Invisible Illness are disabled... they struggle to make it day to day, worry about paying the simplest bills and can only dream of the concept of a vacation or a night at the movies.

Yeah, I know, life is tough all over... people everywhere are suffering and my whining seems to be a bit overboard.

The thing is, I am opening my life to the world so that people can see the impact of having an Invisible Illness... so people can understand better the struggle of those who, through no fault of their own, are not asking to be taken care of but instead asking to be understood and perhaps a way to take care of themselves.

I have Gastroparesis... but it will never have me. I am a person suffering, not a disease... and I am not alone by a long shot!

Sunday, June 19, 2011

Mood- vacant

Health- drained

Today has been a mammoth struggle... all I want to do is lay back down and sleep.

It might be the infection, it might be the malnutrition... I have no clue, all I know is that getting the laptop out today to keep up with my pledge to blog every day is the only reason I pulled it out. I made a pledge to myself to do it and I am going to do it.

I have been informed that the saplings are still green, so there is hope that one day they will dig their roots into Virginia soil and grow... I just hope they can hold on until I am able to get to it.

There is a wonderful bit of writing called "The Spoon Theory" ( http://ww.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ ) which explains so very well what it is like to live with a chronic illness. Today I woke with 1 spoon and used it pulling out the laptop.

My chronic low grade fever is spiking on and off (probably the infection) yet my hands and feet are like ice and I just cannot get them warm, my abdomen feels like it has been through a dull meat grinder and my heart has been doing some interesting things. I have a fingertip pulse-oxometer that shows your heartbeat and strength... there is nothing like seeing it jump then go flat and everywhere in between. Watching my pulse flat line is always fun... I sit here thinking "I am blinking... I am breathing... I must not be dead yet" then the pounding and jumping around starts again and I take the thing off, shrug and find something more interesting to watch, like the tiny cobweb I can't reach... will it wave to the left or the right with the ceiling fan? High excitement in my life!

Don't think that my life is all doom and gloom... I am involved in a new project along with many in my Gastroparesis community (my family of heart if not blood) that is very exciting and promises to give us a voice that will last for generations to come.

As for right now... my spoon is gone and so is the last of my energy.

Saturday, June 18, 2011

Mood- distant
Health- dismal

Once more those little saplings are left to ponder their fate... I am pretty sure that they are doomed to be brittle twigs.

I awoke this morning with the right side of my face swollen and aching bad... no clue if it is my sinus infection reminding me that it is still there, an infected tooth or maybe the infection from one or the other has gotten into the bone and I am getting to suffer from osteomylitis (infected bone). Not like I have any way of getting it looked at or treated no matter what it is but at least guessing gives me something to do.

If you have read my previous blog entries then you already know that I cannot take even a baby aspirin for the pain and swelling, but ever hopeful I took an Advil... and for my wishful thinking I have increased stomach pain (can we say kill me... kill me now) and (joy of joys) increased bleeding from somewhere in my digestive tract. Note to self... DON'T DO THAT AGAIN!!!

One would think that I feel completely hopeless, but one would be wrong.

Oh, sure, I can feel hopeless from time to time... but nothing that has come along has managed to kill me yet, so I think that my track record is good. Something will give... something has to eventually give... and somehow I will get the treatment I need and will be able to afford it.

Talking about afford... I just figured out my finances for the next four weeks and it will take $40 more than will be coming in from unemployment to simply cover enough bills to keep the roof over our heads, the car from repossession and the lights on. Nothing at all for food or any luxury items like toilet paper and soap.

You might think that mine is an extreme case, but the truth is that many people with chronic illness face financial ruin and homelessness every day. For the ones with Insurance, the co-pays can be staggering and they have to decide if they get the medication they need or food, for those who are disabled and on Medicare and Medicaid the cutbacks often mean that services they used to get are no longer covered and they must find a way to pay our of pocket or do without those treatments, medications and doctors. For those with no form of insurance at all it often means that the closest they get to medical care is the blood pressure machine at the grocery store.

Imagine... you get sick... you did absolutely nothing to cause it... there was nothing at all you could do to prevent it but it happens. You have always been healthy and have had insurance which you paid for every paycheck but barely used. Now you need it... all those thousands you paid will finally come in handy...... or so you think. You discover that what seems like low co-pays ($20 for Primary Care physician, $40 for Specialists, $100 for the ER, $25 for each prescription on the "generics" list, $50 for prescriptions on the "formulary" list and no coverage for many specialized medications that could run into the hundreds per 30 day supply, $3000 personal deduction, $9000 family deduction and the co-pays for labs, x-rays and more) add up very fast until suddenly your savings are gone, you have to cash in your retirement and you wonder in a daze how in the world you are living paycheck to paycheck. Then suddenly your Insurance Company starts denying coverage for tests and procedures or simply drops you.

You now are un-insurable due to a pre-existing condition... and because you were financially responsible and own your car outright (paid it off, glad to no longer have to make car payments) you do not qualify for Disability when you have to stop working due to your health... or if you keep your job by the skin of your teeth you make too much to qualify for Medicaid or Medicare.

Think this cannot happen to you?

I thought the same thing at one time...

Friday, June 17, 2011

Mood- better
Health- not going there

Today started out rough... those poor saplings are still languishing awaiting either the fate of becoming trees or mulch... I feel like I might have committed herbicide!

I was feeling very low... the money issues are pressing down like a lead pillow on my chest and the lack of medical care is really taking a toll... then I picked up the phone and called a friend.

This is a person that I had only spoken to on the phone with once before... and the strange thing is that even during that call it was like we already knew each other and talked for hours. Today was no different... we just talked and talked and as the minutes ticked by it came to me that the darkness was lifting.

She also suffers from Gastroparesis... and we came to the conclusion that the reason we felt so comfortable in talking to each other and felt like we have known each other our whole lives is because we can actually "see" each other! We are not invisible to each other... there are no awkward pauses or tense moments, no scrambling in the dark for a topic.

Knowing that you are not alone and having people that can understand what you face on a daily basis is the most powerful thing in the world. We can try to explain what it is, try to put it in terms that those who do not have our condition can understand, but unless you live it you can never understand it. It is like the difference between memorizing the recipe for a cake and actually making and eating one. You might fully understand everything that is in it, you might know the calories, nutritional values, color and could tell others about it and even teach them the recipe, but until you actually make it and taste it you can never know what cake really is.

That, I realized, is the biggest hurdle to raising Awareness... we are seen as our condition and have lost our humanity. When we talk to others to raise Awareness we talk about the recipe... the components... but it is something that someone who has never been there can make a connection with. People can connect with others who have the same feelings, so maybe we need to show that we also have hopes, dreams, fears and joy... connect as humans and then... maybe... there will be enough there to have others care, and once they care we can share.

This little experiment I am doing with this blog is harder than I thought... having to pull out my laptop every day is hard and I have to fight and force myself to do it because I believe in my heart that it can make a difference...

I can raise my hand and call out into the dark "I am here"... and maybe someone out there will hear me.

Thursday, June 16, 2011

Mood- numb

Health- crapola

Late start on today's entry... day three of not getting those saplings planted, if it does not get done soon it will be too late, but I cannot do it and my husband just keeps putting it off... oh well, it was a good idea.

Once more I am not able to do much at all, if I try to walk the pain is pretty bad so I am in bed most of the time.

On the plus side I managed to get 28 ounces of fluid in yesterday... 8 ounces over my goal... woohoo!!!

On the minus side, the gastric bleeding seems to be picking up a bit... nothing like having straight blood or bright red clots as the only bowel movements... TMI and yuck at the same time, aren't you glad you read this?

Any "normal" person would be dashing to the ER or the Doctor if they had this going on... I went that route... got the colonoscopy that showed nothing... the EGD that showed duodenal ulcers but no bleeds meaning that it is probably somewhere in my small intestine. That and since I do not have insurance I can't afford to go to the ER to be brushed off at a rate of $300 an hour. I did find out (when I requested a CD copy of some CT's last year) that I have multiple diverticulum (which would have had to form in the past two years, post my most recent colonoscopy) that I was never told about, once even an active abscess diverticulitis, which I was not told about. So... I bleed... I have iron deficient anemia (that I can't take anything for) and I wait to see what new joy will enter my life.

The abdominal pain, distention and nausea are constant companions, but since there is nothing I can do about it I barely mention it to anyone anymore... what's the use?

One other condition I have is multiple large complex ovarian cysts on my left ovary... these were discovered before I lost insurance and were to be taken out after jumping through unbelievable hoops to get cleared for surgery because I am a bad surgical risk... then my husband lost his job and we lost our insurance just 2 weeks before the surgery date. These dang things leak (as shown on many CT's) which hurts like hell... often... like 3 weeks out of every 4...

I searched and searched for someplace that could help me and finally found an indigent care program 90 miles away at a University... but when seen there I was told "you are too much of a surgical risk"... so I get to simply LIVE with the added pain these delightful acid leaking bags of joy add to my life. The GYN blames my Gastroparesis for the abdominal pain and the past GI (prior to losing insurance since my appointment to see one through the program is in January 2012, the earliest I could get) blames the cyst... and I am left in pain with every Dr saying "not me!"

Lets just say that today has not been a good day... The things that are wrong with me cannot be seen by the naked eye (other than the dry skin and pale nails) so since I do not look sick I must not be sick, right?

Wednesday, June 15, 2011

Mood: depressed
Health: icky

I never did get a chance to log back on yesterday... Loki (my beloved Chihuahua, Service Dog and fellow Gastroparesis sufferer) had a bad day and needed my full attention. Poor little guy was trembling so bad with muscle spasms that he could not stand... so I gave him some Ensure and Pedialyte to get his minerals, vitamins and electrolytes back up and spent the day with him glued to my lap.

Unlike humans with Gastroparesis, he does not know what is happening... all he knows is that his belly hurts and he is tired and shaking and his whole body aches and he wants me to make it better.

Today he is doing better... I will simply add daily Ensure to his diet and hope that keeps his levels high enough to prevent these attacks.

That is all a person with Gastroparesis can do as well... try to get the nutrition they need into their bodies to prevent all of the symptoms of starvation and malnutrition or at least keep them at bay.

Today I am going to try to play foreman and direct where those saplings will go in the yard, but I just have no motivation... it is almost 2pm and I just have no "oomph".

The Ventricular Tachycardia is bothersome today... those insidious flutters in my chest that steal my breath away and all I can do is wait until they pass... and hope that they do and I don't.

One issue that I have is that I cannot take any medications other than OTC TUMS... I cannot take even a baby aspirin to try to deal with the pain... nothing for my high blood pressure... nothing for the tachycardia or arrhythmia... nothing for the low grade fever that I have had for over a year now. To tell the truth, I get jealous of my friends who also suffer from Gastroparesis that can at least try the few medications available for it. I do not resent them for it... but I do get jealous.

There is just nothing out there for me... I am severely allergic to the adhesives used in tape and patches so IV medications must be supplemented with mass doses of benedryl and patches for blood pressure and the rest cannot be used. I am allergic to all opiate pain relievers so even on IV I can be given nothing for the pain... artificial sweeteners cause full blown migraines (when I could still throw up that meant projectile vomiting but it still means the steel hitting steel pounding, light and sound sensitivity, vertigo, weakness and going blind for an hour from the ocular migraine that comes with it... the misery is just too much added to the pain I already deal with) and all liquid medications are made with artificial sweetener so it is safe for Diabetics... as are all Barium Solutions used to do many of the tests I need but can't have. Oh, they can go ahead and do the tests without the contrast but they will not be able to see what they need to see so they can't get the answers they need. I am also allergic to all MRI contrast material, adding to the inability to test fully.

There are days that I feel so hopeless, so left out of life.

Today is one of those days.

While brushing my hair I had to stop three times to rest and get my breath back as my heart pounded... I mean... COME ONNNNNN!!!

Tuesday, June 14, 2011

7 am

Mood- snarky with a dash of brain fog
Health- challenging

I have yet to sleep, so I do not even know if I can call it "today" yet or if I am still stuck in yesterday...

Every time I try to lay down to sleep it feels like the room is shaking, an earthquake... but I know that it is just my muscles spasming and quivering from electrolyte and magnesium deficiency. My ears are also ringing louder than usual (remember the sound of the fire alarms in school? Well, that is about the frequency and volume of it) which makes falling asleep a challenge.

The nausea is ever present and volatile, like the gnawing of a trapped animal in my stomach but my supply of TUMS is running low (the only medication I can take) so I will just have to try to ignore it. I would put my pain level at about a 7 (out of 10) so pretty normal for me (you can get used to anything if you have no choice in the matter).

Through the night I managed to drink about 6 ounces of fluid, making my total for yesterday 18 ounces... slightly off my goal of 20 ounces a day so I know I will have to try to get a little extra in today if I can.

I was planning on trying to crawl around the yard and yank out some weeds and direct my husband as he planted a few sapplings we gathered from my parents woods last week today, but in my present condition I do not see that happening :(

I will try to post more later, but right now I need to try to sleep again... 'good sleep schedules' are for the normals... I just feel lucky when I am able to get good quality sleep and can wake feeling refreshed at all.

Introduction

Mood: snarky
Health: blech

Okay, here it goes...

I am starting my little social experiment to see if anyone in the world actually cares about what it is like to live with an Incurable Invisible Illness.

I will make a post every single day of the year for an entire year describing what my day consists of, the challenges I face, my activities and my thoughts.

First, a little background...

I am a 42 year old woman who suffers from many health conditions, the most life altering being Gastroparesis (for more information about Gastroparesis visit http://www.gastroparesis-awareness.com and www.G-PACT.org ) and am disabled. I live with my husband of 13 years who in August of last year lost his job (our only income) and with it our insurance. I am disabled and in a world that had any sense of dignity I would qualify for disability, but since we own a car outright I do not qualify for disability.
After searching for months I was able to find a University Hospital with indigent care where I could go for treatment, however it is 90 miles away and we can't afford to use the ER there due to the cost of gas and the waits to see a doctor can be staggering! (I will not even see a Gastro Doctor through the program until January of next year even though I am suffering from malnutrition.)
My focus will be on my condition, Gastroparesis, since that is the one that most impacts my life and complicates all other health concerns I have.

Imagine being ill, having the tests that PROVE beyond doubt you are ill, but because you do not have a visual manifestation that shows the inner workings of your body and the inner misery you are treated as if you are making it all up. Imagine having to actually educate your physicians about your condition because, even though it is NOT RARE most physicians have never heard about it or if they have it was only in passing during Medical School and what they learned was that it was 'no big deal'.

Imagine trying to find out more about your condition and not being able to find out the most vital thing you want to know... will it kill you???? And when you ask a Dr they tell you "no" but then meeting people online and getting to know them as a close knit community and mourning the losses of those that do pass as a result of either the disease process or even worse, pass away as a result of the major complications from the few treatments available.

Want to know strength, courage and fight? These brave men and women struggle daily to simply get a little nourishment into their bodies... a battle against starvation.

Today is Day 1 of my little experiment... your window into the world of a person suffering from an Invisible Illness.

I do not seek sympathy... I do not seek money... I do not seek notoriety... I seek only one thing. If only one person reads this and learns about the plight of the invisible people, the ones that must don a mask of normalcy simply to survive and from reading this blog realizes just how lucky they are and how precious good health is and perhaps helps to raise Awareness then I will have succeeded in my quest.