Mysterious illness partially revealed

First - thank you to everyone who has sent cards, emails, texts and Facebook messages. Knowing I had lots of people praying for me and just being aware of how hard of a time I was having made such a difference.  Your thoughts and prayers and even the smallest effort to acknowledge someone's challenge make a huge difference. 

I have herpes simplex 1 - the virus that causes cold sores on the face - in my lungs. Had we not fought to get a bronchoscope done at the hospital they never would have figured this out. The doctors would have continued to allude to it being psychiatric.

It is rare but not unheard of for herpes to make it to the lungs. They think it gets there via the bloodstream but are not sure.  Symptoms of the lung infection are not well documented so I am going to document mine:

Raw, burning sensation in lungs. Painful to take breaths. Pain at level 5 to level 7. Fluctuating energy levels- very weak when pain is at its highest. Pain/energy intensity comes in waves. At some point as the pain increases and the energy wanes there is what feels like an energy explosion - very painful, then it starts easing. This happens 6 to 8 times a day. In addition I have a very sore throat and periodic sinus inflammation and mucous production. I also have hot flashes and a fluctuating very low grade temp. It often feels like my heart is palpitating when the pain is high. Yesterday I started having the new symptom of burning in my stomach.  My appetite is poor and I have lost 15 lbs in a month. I crave fresh fruit and orange juice. I only sleep in two hour blocks. That has been consistent since the onset of the lung pain. Sleep two hours - wake up for an hour - back to sleep for two hours, etc.

I am being treated with an antiviral and two kinds of antibiotic (Doxycycline and Augmentin).  The doctor believes that there is a low grade bacterial infection running alongside the herpes virus.  He is not sure of the cause of the bacterial infection - but is validating that there very well could have been some sort of environmental trigger. I am also doing a steroid inhaler (Advair) 2 puffs twice a day. I also take a pain med when the pain is peaking.

All the environmental toxin screens that were run came back negative. No leptosporosis, no aspergillus, no mycoplasma, no valley fever, no hantavirus, etc.

Herpes simplex in the lungs has been linked to triggering pulmonary fibrosis. This is a progressive lung disease that causes the lung tissue to become hardened. Treatment is symptomatic, there is no cure and it is fatal. My mom had pulmonary fibrosis and there is a familial link to it as well. At this time I show no evidence of fibrosis but do have some tissue degradation at the bottom of my lungs. This tissue degradation has been present for at least 5 years.

I am still very ill. The doctor says that he thinks it will take several weeks still for me to get through this. I have been sick since 2/23/12. It is now 3/31/12.  He wants me to take it easy but get out and walk whenever possible so that I am using my lungs. He took me off supplemental oxygen because my bloodwork indicated that my oxygen saturation and blood gases were within normal range. I am very glad to be off the oxygen.

I will continue to post my progress. Today when I woke up two RV neighbors had gone. The 2011-12 Snowbird season is ending. I am sad to see them go and will miss my newfound friends. Since I was the one who re-published the Park directory this year I have all their out of town contact information so maybe for once I won't lose track of them. I think I need to start a spreadsheet and enter the contact information for these people we meet along the way. I am always glad when they are on Facebook because then I can keep track of them on a day to day basis.

One thing we wanted to do this winter and didn't get to was to provide some training classes for Facebook and basic computing. With our own health challenges it never seemed to work out. Walt has struggled all winter with severe pain from his neck and shoulder surgeries. It has been a challenge for him to keep up at work so extra stuff like a Facebook class never happened.  He was able to help several people on a one on one basis. We both think it is a priority to help Senior Citizens use their computers and internet in a safe way so we are always looking for opportunities to help people do that.

Copyright 2012 - Chardale Irvine.  You may not publish or reprint this article without permission of Chardale Irvine.  Thank you.

Hospitalists - My birth as a racist at the age of 51

A week ago this topic would not have even caught my attention.  I might have had a minor poor opinion of Hospitalists but I couldn't have carried on more than about a one minute and 32 second conversation about it.

Now, after the week from hell in two hospitals, things are different.  The "hell" in the hospital was not caused by being sick.  Being sick in the hospital sucked and was painful and uncomfortable and scary. The "hell" came from dealing with the doctors who work as hospitalists in hospitalist groups.

As some of you may have picked up I became ill on 2/23.  A month later I am still sick.  But not acutely sick.  Not the sick that if you don't help me I won't be able to take another breath sick but the "hey dudes, something is really wrong with me, its not going away and I don't know how many more times I can go back and forth to the doctor and ER trying to figure it out" sick.

That was strike one:  You are not supposed to be in the hospital unless you are really sick with something that they can diagnose.  The hospital doesn't get paid for you being there by the day.  They get paid by the diagnosis and the more complex the diagnosis the more they get paid.

So I wasn't very sick but was taking up the bed that someone with a really "valuable" sickness could be lying in.  Or three or four more people as they rushed them through the bed.

So I have what appears to be some very basic viral or bacterial pulmonary issue.  Even if they can confirm an actual cause and make the diagnosis it isn't going to get them paid much money. 

What I needed, wanted and expected was that lab tests would be run and that I would be released to go home and get better with the help of the specialist(s) who work in the area of my illness generator.

What I got was a complete wall of stone, abusive, abrasive, caustic, demeaning and punishing behavior by most of the doctors involved. I was baffled as to what I was fighting against, what the resistance was that I kept running into, but I was determined to get them to do what I knew needed to be done.  So sick as I was I fought.  And I fought.  And I changed hospitals. And I fought some more.

Three of the four doctors I fought with were from India.  One was American. They were all men. The one doctor who finally helped was another American, a man and not even an Infectious Disease doctor.  But he was the one who ordered the Environmental Toxin screenings, who did the bronchoscopy to acquire the sample to do them with, approved a shower that I had been denied for three days and ordered a second dose of Diflucan to treat the yeast infection I had acquired from taking the antibiotics, which had been denied. He then recused himself from my case.

I was released with no diagnosis.  Lab reports are pending. I am still sick.  I do not know what the cause is. I do not know if I am getting better or if I should plan on getting worse first.  They are generically treating me for a bacterial infection that is biphasic but they are guessing.

I walked out of the second hospital with the label "Racist" stuck to the back of my shirt. I asked for the chaplain to come to visit me and they came back to tell me that he was Hispanic and wondered if that would be okay. I used the term "culturally similar" in requesting advocacy. It doesn't matter that I have good friends from Dallas who are from India. It doesn't matter that I've always worked really hard to relate to people who are different from me. After war was waged, Walt and I against three Indian hospitalists (and one American who works for the Indian Hospitalist group), battles were lost, souls were sold, but the battle was won. I got the tests.  I got them in a mostly timely manner.

I don't know if I'm kinda sick or on the way to being really, really sick.  A neighbor I know died last week of something that was similar to what I have. So I'm scared.  And I feel like crap. And I'm a racist. And I'm one tough, damned woman and no man from ANY country is going to walk into my hospital room and tell me I am having a panic attack when I am really sick and not expect to have to deal with me about it.  Hospitalists, or men or Indians or martians -  be forewarned.  And when I'm lying in that bed, as long as I am able to speak and think, I will demand a dialogue.  No - you are not going to unilaterally decide how to care for me.  You make me part of the team or you will have a fight on your hands.

I have attached a link to an article that describes how the "Hospitalist" model made its way into American hospitals.  As I suspected it had nothing to do with providing quality patient care. As I suspected it is all about making money.  What I didn't suspect was that Medicare restructuring was the impetus that drove the change. And so I walk away armed with yet more information about how Medicare, as administered by Congress (both Republican and Democrat) - not the Federal Government - drives the whole, crazy thing we call Medicine in this country. We don't need Medicare Reform.  We need to stop letting our legislature dictate how to practice medicine. They are not doctors. They are not acting on the best interests of the patient. No national healthcare reform is going to be successful until we remove Medicare/Congress as the governing force behind all things medical.

I strongly suggest you read this article if for no other reason than to prepare yourself for the agenda that the hospitalist and hospital have when you hit that bed.  Your social consciousness will come after you've experienced it.

http://knol.google.com/k/the-hospitalist-model-of-care#


Copyright 2012 - Chardale Irvine.  You may not publish or reprint this article without permission of Chardale Irvine.  Thank you.

Zero player team says Represent!

Ha funny. Just hours after I closed that last post zero players showed up at the end of the day and I ended up in the hospital. I have been struggling with some sort of shape shifting upper and lower respiratory illness since 2/23. I was traveling when it started but it started not even two days after I left home. I ended up having to delay my flight home because I was too congested to fly. I went to Urgent Care in Colorado and got some steroids and antibiotics. Within an hour of starting the meds I felt better. It took a few days for all the mucous to clear and I was able to fly home on 3/13. I came home and finished the meds the next day, felt good for a day then started having sinus pressure, headache and blurry vision. I was producing no mucous but had extremely swollen sinus passages. Friday night 3/17 the headache pain level made it up to a 9 and I could draw no sir through my sinuses because of the swelling. I went to the ER in Sanford where they prescribed a nasal steroid and new antibiotic. I went home and it took most of Saturday to get feeling better. Sunday, the18th came and I felt great. I went swimming at about 4 pm where I did water aerobics for an hour. I did not get my face or head in the water. Went to dinner at about 6 pm. After a perfectly normal and relaxed meal I suddenly felt a crash of raw pain in my lungs. It felt like the inside of my lungs were on fire, it was painful to take a deep breath, my heart was palpitating and I had such extreme fatigue I could barely walk. Hoping that this was a simple flare and trying to avoid another several hours waiting in the ER we drove an hour away to the closest open Urgent Care in Winter Springs. There I had a normal chest X-ray, a normal EKG and no improvement following a breathing treatment. My oxygen saturation was a bit low and fluctuating. The doctor could not make a diagnosis so directed me to go to the ER. I checked into the Sanford ER at about 9 pm. After another normal X-ray and another high intensity breathing treatment my saturation was still low and fluctuating. My symptoms remained the same and my blood gas test came back with a low oxygen value. The ER admitted me about 1:30 am Monday morning. I was told when I left the ER that a Pulmonary consult had been ordered.

Copyright 2012 - Chardale Irvine.  You may not publish or reprint this article without permission of Chardale Irvine.  Thank you.

Forfeit: Playing With Less Than a Full Team

Thus far, in my posts, I have written about fun and interesting events that have and are happening in this nomadic lifestyle we live. I have had a break from really having to deal with the intensity and profound difficulty that I have living life with disabilities. On one hand, that I am disabled and have the disability benefits that I have, makes it possible for us to be doing what we are doing. On the other hand it creates daily, life altering challenges.

I have good health insurance.  I have a small, but dependable income every month. I am able to work if I feel well enough to do it. These are benefits that help us immensely and basically set the framework for Walt to be able to be a consultant.

The reason I have these benefits is that I have disabling illnesses. The Fibromyalgia and CFIDS (Chronic Fatigue/Immune Dysfunction Syndrome) bring intense pain and fatigue into my life that is usually attached to no cause in particular. The immune system dysfunction simply means that my body will typically overreact or underreact to illnesses.  I have an auto-immune platelet disorder that has caused two hemmorages in the past. I have hypoxemia - a pulmonary condition where my lungs don't saturate with oxygen properly at alitudes over 4800 ft. I have an irregular heartbeat and Type II Diabetes. I have Bipolar I disorder and PTSD. I have Tardive Dyskenesia, a permanent syndrome of involuntary movement caused by the drugs taken to treat mental illnesses. And I have the condition that originally was the basis for my Disability: Degenerative Disc Disease in my lower back and arthritis.

I am 51 years old and on my good days I feel pretty good for being 51. On my bad days I hope I don't have to keep living until I am 80 or so. I just can't imagine another 25 or 30 years like that.  The illnesses are like being on a physical and emotional roller coaster, exhausting in and of themselves, but together too much to cope with.

There are other metaphorical scenarios that people use or have develped that attempt to describe to others what it is like living with these challenges. I have developed what I call the "Forfeit Rule". based loosely on how a basketball team would function. It transfers from my experience playing basketball in high school and college, and pick up games later on.

Basically it goes like this: For those of you who don't know, a basketball team on the floor has 5 players. A team can still play with as few as 3 players. But if they only have 2, 1 or 0 players they forfeit the game and the other team automatically wins.

In my life, since my back injury, the whole team of 5 players never shows up.  The best that it gets is that 4 players show up. On those rare days I am like a woman possessed. I multi-task and move from task to task at lightening speed because I know that having the 4th player there is the exception and won't last.  I recognize when they are there and try to take full advantage of having access to that.



The average is 2 1/2 to 3 players. In my world you can play a game with 2 1/2 to 3 players. Those days I get dressed and chip away at the day one task at a time. With this number of players I can usually patch together something of a day that is somewhat functional. I do a pretty good job of basic self-care at this level - as far as dressing, showering, eating, but not so good with exercise and cleaning and such. If you ever see me out walking or exercising it means that 3 to 4 players showed up that day.



When only 1 player shows up I call a forfeit. I do not even try to do the day. I eat, rest, take my meds, take the dog out and rest. That is a forfeit day.





There are days when 0 players show up and those are the days I am in the hospital. More frequent than the average person, I would say, but still not my norm by any means.

I know that finding a way to write about how I cope with living with these illnesses is critically important to my own process of healing. I am still not certain that my perspective and experience around my health challenges is interesting or useful to anyone else but I know it is useful to me. It has become important to me that I show up in my world as the true me. I have come to realize that it serves to foster stigma when I keep my experiences to myself. I need to be validated by those important to me and yet I don't give them enough information to adequately do that.

I will continue practicing on those who love me. I hope you will hang with me as I cast about for the perfect balance. I want to share enough to foster understanding and empathy but not cause too much stress or discomfort. I am not on a crusade to teach people about the stigma of any of these illnesses. I am on a crusade to live my life to the absolute fullest within the parameters that I must work within.

Copyright 2012 - Chardale Irvine.  You may not publish or reprint this article without permission of Chardale Irvine.  Thank you.

A Grandma's Mission Too See Her Grandbabies

I am at the end of an amazing journey to the mountains and high plains of America. I have driven over 3300 miles through Colorado, Wyoming, Utah and Kansas on this mission to meet my new grandbabies and see my older ones. My rental car, which I got through Enterprise Car Rental at the Denver International Airport, is a Kia Soul, the hamster car from the commercials on TV. It is a rockin', cool car, handled great on the bad roads and bad weather which Wyoming, Colorado and Kansas threw at me (snow, blowing snow, ice, black ice, ground blizzards, high winds, road closures, accident delays, rain). It has excellent Bluetooth and a kickass stereo.

I saw Shane, aged 10 (son of Adam Mackley) first.  He has been my training grandkid.  He has been spoiled in ways the other ones won't be just because he was the only grandkid for 7 years.  I still didn't see near enough of him but the time we have spent together has been of the high quality kind.  He taught me that hotel swimming pools are a must for visiting grandparents who you don't know very well.  The water quickly washes away any insecurities or discomfort from not knowing each other very well.  Nervous with each other when we entered the pool - old buds by the time we climb out exhausted and hungry. We swam in the hotel pool, made finger puppets to put on shows for his new sister Cadence and made microwave cake in the room microwave. He loves his Ipod and sending and receiving emails. He is doing long division in school right now.

I also met Shane's new sister Cadence for the first time.  She was born on Halloween 2011. She wasn't too thrilled with having to deal with the new scary, lady who kept trying to hold her. But I didn't give up and held her even though she cried for her daddy. She is very opinionated even at this early stage but lights up the room when she blesses you with a smile.  She looks just like her dad and has the longest, curliest hair I have ever seen on a baby. I felt very blessed to be able to go the the doctor with her, her dad, her dad's attorney and girlfriend Mary Anne Ellis, Cadence's mom Adrian, her other grandma Shannon, and her Aunt Sherone (my sister). It felt like she had a whole army of people ready to stand behind her on her journey.

Henry is 3 now (son of Kaycee Mackley).  I spent lots of time with him until he was just under a year and then we hit the road in the RV.  I have only been back one other time but he still remembered me.  His mom does a good job of telling him about his grandparents so even though he was a little shy at first he warmed right up. He even snuggled with me the first two nights, a rare treat for a not-so-present grandma. His mom was kind enough to let me sleep on her comfy bed and I brought a blow-up mattress for her to sleep on, which we filled with air from a pump and set up in her living/dining room. Henry was certain I brought it to be his own indoor trampoline and you can see from the video that he made good use of it for that purpose. He loves his new school and is really descriptive when telling you what he did at the end of the day, though you have to listen very closely because he tells it in almost a whisper. He loves Spider Man and Wonder Pets.

Next came Memphis who is 21 months old (son of Matt & Kelsey Mackley). I had seen and held Memphis only briefly at my mom's funeral in September of 2010. He was just about 3 months old at the time. Now I finally was able to spend some time with him and watch him toddle, climb, play, sing, and throw things.  He has quite the arm for such a little tyke.  He is very tall for his age and is the spitting image of his dad except he has blond hair and his dad's hair is brown. He is generally a pretty laid back kid so his parents thought they could handle another and are pregnant again - Kelsey is due in October 2012! Memphis jabbers constantly, most of which I couldn't understand but that didn't stop him from conversing with me. He gives easy and open hugs and is generally pretty comfortable with people.  I definately was not scary to him. He is in constant motion at his age, except when a commercial comes on TV that has music in it - then he becomes mesmerized.

                                                                                                 Ultrasound 8 wk - newest Mackley

Finally, I drove across the endless plains to Junction City, KS to meet Logan aged 21 months (son of Amanda - my stepdaughter and her husband Brandon Falso). I haven't spent much time with Amanda and Brandon since I got married to her dad 9 years ago so I was a little nervous. I was nervous for no reason though. I was welcomed into their home with open arms and even Logan was climbing all over me in about half an hour. He shared all his toys with me and we played with the cars and the balls mostly. He has a little Leapster computer that he just loves. He fell asleep on the chair with his hand still on the keyboard - uh kinda like his Grandpa Walt really. He's a busy kid, constantly on the move and very opinionated. He's a grazer with food because he's just too busy to really stop and eat a meal.  He really gives his mom and dad a run for their money. I got to accompany Amanda and Logan to the hospital for an attempted barium swallow for Logan.  It didn't work because he wasn't too interested in swallowing icky gunk while lying down. It did feel good to be able to be there and support Amanda.

And lastly, to my surprise I met my friend Eric's roommate's cat Louie. I found out that meeting new cats is pretty darned similar to meeting new babies.  You just walk in a room and sit down and pretend like you are ignoring them but be holding their toy or a treat. Within 20 minutes their curiousity will have overwhelmed them and they will be over checking you out. Such was the case with Louie - a big, beautiful 13 lb striped cat, playful as can be. I didn't get a video or picture of Louie so you'll just have to take my word for it.

Copyright 2012 - Chardale Irvine.  You may not publish or reprint this article without the permission of Chardale Irvine.  Thank you.