What % are you at now?

This is Metallic’s breakdown:

0% is death

5% is dependence on hospital staff in the ICU and requires the patient be on machines to survive, including IV feeding, fluids etc, potential surgery and comprehensive testing. Loss of consciousness is a hallmark as a direct result of the infection. Fevers of excess may be present, but the condition is acute and dangerous.

10% Patient is still conscious but incapable of meeting minimal care, suffering is unbearable and medication intervention for pain, and other care is needed. The patient may have difficulty communicating by voice. At 10% function the patient does not require ICU care, but is hospitalized and usually requires IV care and monitoring to ensure basic needs are met to help them avoid sliding further down to 5% or death.

15%: Patient can perform one or a few minimal tasks, including lifting a cup to sip, eating small bites of sauce or broth. A monitor should be available to encourage or help if needed, since crippling fatigue or other neurological symptoms may impair them from “easily” accomplishing these minimal feats. Pain intervention is necessary, and hospitalization to monitor progress.

20%: Patient must be hospitalized, as food and fluid intake are too low for the patient to survive long without immediate medical intervention. Patient is conscientious of their inability, alert and concerned, but none the less, knows they must be hospitalized. Cognitive deficits and confusion, anxiety and pain are present. Patient will likely need a wheelchair

25%” Symptoms are intolerable without medication intervention, however while it may be debilitating the patient can generally eat minimal solid or mixed foods and drink a couple cups of water per day, they are not self sufficient and require a home supporter to cook, help them ambulate, and cloth them and bath them. A cane or walker — or using the walls/railings to stay upright are needed. Patient may not be able to get up to take their meds alone, or be able to organize them. Monitoring is needed by a support person.

30%: Symptoms are tolerable but unpleasant. Patient can eat and drink enough to sustain self, fundamental survival is not threatened at this point. Emotional and physical symptoms are not viewed as separate. If suicidal feelings grow more intense, the percentage of function can significantly decline with that symptom alone. 30% is marked by declines in psychiatric care, including deeper depressions, burnout, exhaustion and other psychological conflicts that result from being between the world of entirely crippled, vs functional. 35% is also marked by frustration. A limbo of sorts. Surviving but not thriving. Suffering is tolerable, yet complacency and isolation require visits from family, friends or other supports within the home or via some other source, i.e. phone, internet etc.

35% Individual can generally eat a few meals per day, and meet the normal values of 64oz, and get at least 3-4 hours of “tolerable” sleep. They can walk, talk, and move around alone without a walker within a limited space. Usually homebound except on occasions when they must push to meet serious obligations such as seeing a doctor. The patient can do some exercise, anywhere from 15-60 mins of mild to moderate activity, depending on the individual activity chosen.

40%: No longer homebound. Fundamental survival is not threatened, social activity increases, cognitive skills are reasonable enough for others to assume you are in top health. Physically, appearance improves, pain decreases, and exercise can include walking outside, or even light short distance jogging, but the individuals tolerance for activity must be built to achieve it.

45%: Individual can endure social outings like concerts, even part time work, if they are stable at 45%, but the work must be flexible. The individual may start taking a class, or even carry on a new relationship. Normalization of cultural lifestyle begins to return, such as reading, going to movies, and mood and behavior are reasonably stablized.

50%: At this point, you’re able to function like the average person who is having an “off” day. The average person can work full time on an off day, and so could a Lyme patient who stayed consistently at 50% function. They won’t be the best worker, but they won’t be the worst and they’ll be able to tolerate it without feeling they’re killing themselves.

55-75% are marked by subtle changes in improvements in abilities. As neurological changes and pain decrease, biological chemistry is restored, so sleep is long term, deep, restful, and the ability to perform mathematics, visual activity, sports, and full time schooling with also working part time — are all accessible. There is less need to be hyper vigilant about “planning.” Plans can be made knowing that deep deviations won’t be likely.

75% and higher are marked by typical lifestyle of the average individual. Most healthy human beings without infection live day to day between 95 and 75% depending on environmental activity, social relationships, meeting goals and engaging oneself in purposeful and meaningful living.

100% is ideal, which is reached occasionally by everyone — it is usually something we carefully prepare for, with discipline, such as getting deep sleep, preparing in advance for testing or physical activity like sports, or other use of skill sets. The average person is not disciplined and highly goal oriented in a fashion that requires feeling 100%, thus most people don’t eat perfectly, don’t sleep as much as would be optimal, and certainly they don’t exercise as often as would be encouraged. Those who do these things, would see 100% function more often than the average.

At my lowest point, I was about a 12.5% and at my highest since diagnosis 36.5%. This scale has really forced me to put a number to my journey as far as healing. When I say the changes have been small, they truly have been minor and spaced very far out. I’ve had a lot of 2 steps forward 10 back. The gall bladder is now out (12-2-09 was the surgery) and I had my 1 week post-op this Wednesday. I’m still very swollen and the incisions seem to be healing at the expected pace. The ones on my sternum and in my belly button seem to have the longest way to go as opposed to the two on my side that look really good. I am still very sore, car rides even for a short amount of time leave me achy for days. Getting up and down still takes considerably more effort because my abdominal muscles are heavily effected. The liver biopsy turned out fine, we did have to clean out the bile duct because I had cholesterol deposits which look like mushrooms that were in the duct as well as the gall bladder itself. These do not show up on ultrasounds or HIDA scans. My gall bladder was actually pulled inside itself which was interesting to hear and definitely gives a cause to the amount of pain I was in. There was no option, it HAD to come out, the procedure was not in any way an option since my gall bladder was no longer able to function properly and was just adding more bile into my already sensitive digestive system. I am trying to take it slow and allow myself to heal but I do hope to be back on some abx before Christmas if not before the end of the year. I hope that some issues will start to resolve in the next 2 months or so and I’ll get to see some improvement, I have the feeling that gall bladder could have been causing a lot of other symptoms as well. I’ll do my best to keep you posted as things progress.

AFP<3

I’m thankful that I was able to see Amanda Palmer in concert tonight. It was a positive reminder of so many things that have always brought me out of the dark parts of my life. I got to spend the evening with the wife. I got to get a free ticket for a friend that needed company. I got to look at stage lights and geek out over fresnels, par-can’s, and gel choices. I got to see the glow of the blue backstage light, and think of all the times I’ve seen that glow cover my body and the comfort I have in that dark, confusing world that is backstage. I got to watch an amazing concert, awesome music and everything in between the songs was hilarious and entertaining.

I’m in a ton of pain to night, but it was worth it, and I’m lucky I could go at all.

Happy 6th Anniversary. I had an amazing time and I look forward to January when we go see another show.

currently on my WriteBoard

sometimes i need to remind myself to take that deep breath, even if it hurts more than i could ever imagine. allowing myself to feel that pain and remembering that no matter how much it hurts, feeling is part of being alive and to try to get by without doing so, is cheating myself out of life.

abandonment

i apologize for the abandonment of you, my friend. things have been mostly the same, with a bit more chaos mixed in and relatively stable health until the chaos comes along. i’ve busied myself as much as possible and took breaks as much as possible as well. i have very little to show for my progress as of lately, just a longer to-do list than usual.

let’s try to catch up on what you may have missed (my last post went up on Sept. 19, so a bit more than a month):

-judged a marching band show. froze to death. ate some ok food. and got paid for it. all in all, not bad.
-found out i am malnourished (have a phone consult with the wizard on monday about all things health)
-went too long without getting a hair cut
-continued on my regimen of becoming a total recluse.
-continued to make videos, though sporadically, more often then i’ve been able to post here.
-helped design 3ish sets of costumes
-came up with 2 show concepts, one of which we have been ironing out details as it will be used this winter
-made an effort to try to skype with friends, or get friends who are far away to get web cams so we can skype to help me start to be forced to have conversations with real people face to face again.
-started maybe 5 new medications, 3 being antibiotics
-still an IV patient
-’designed’ a website for the wife: Jakki Kalo Design
-introduced the wife to twitter
-and spent a lot of time in bed, some time in the bath, and wished i’d spent more time with friends, in the hot tub, and outside on warm days (especially now that it’s colder)

as of now i:

-went to PCP today, day 5 of having some fuNk that is now identified as the flu that became bronchitis. on a new med. for that and have to use the stupid inahler.
-will spend halloween with my mom while the wife is at a band contest
-will judge another band contest next saturday
-want to rest as much as possible so this fuNk goes away.

i hope all is well, i’ll do my best to stop in now and again and update. i’m kicking myself for not doing this sooner.

Invisible Illnes Week

1. The illness I live with is: chronic Lyme disease also called neuroborreliosis, which is caused by a bacteria called Borrelia burgdorferi or Bb. The bacteria is a Gram negative spirochetal bacteria, this structure allows the spirochete to move efficiently in corkscrew fashion through viscous media, such as connective tissue. It has a similar genetic makeup to T. pallidum, the agent in found in syphilis. Bb are microaerophillic and slow-growing—the primary reason for the long delays when diagnosing Lyme disease. This bacteriological infection comes primarily as a result of a tick bite but Lyme spirochetes have also been found in semen and breast milk, however transmission of the spirochete by these routes is not known to occur. Congenital transmission of Lyme disease can occur from an infected mother to fetus through the placenta during pregnancy.
Early symptoms may include fever, headache, fatigue, depression, and a characteristic circular skin rash called erythema migrans. Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early. Late, delayed, or inadequate treatment can lead to the more serious symptoms, which can be disabling and difficult to treat. Occasionally, symptoms such as arthritis persist after the infection has been eliminated by antibiotics, prompting suggestions that Borrelia causes autoimmunity.
Ticks that transmit B. burgdorferi to humans can also carry and transmit several other parasites such as bartonella, babesia, ehrilicha, and other co-infections.
Lyme Disease is an invisible illness, you can’t always outwardly see the symptoms.

(http://en.wikipedia.org/wiki/Lyme_disease)

2. I was diagnosed with it in the year: 2007

Excerpts from Jakki’s Photographic Documentary: Undiagnosed

3. But I had symptoms since: 2000, I was misdiagnosed even though I had a rash and a high (104-105) degree fever, flu like symptoms and joint pain. I suffered with joint pain for years that later required surgical correction, insomnia, and depression were just some of the symptoms I had while in high school. The condition worsened in 2005 and more symptoms appeared and I continued to be tested until I had a CD-57 test and it came back a 3. I finally found a Lyme Literate doctor in my area who know that meant that I was dangerously ill.

( Explaining CD-57 Testing: Chronic Lyme infections are known to suppress the immune system. The Lyme spirochete can affect all major cell types of the immune system, but it most clearly can impact a specific subset of the natural killer cells. This is called the CD-57 subset, and is part of the immune system which fights cancer. (Indeed the specialists who have been studying this correlation fear that chronic Lyme may undermine the body’s cancer fighting ability.)

Just as in HIV infection, which suppresses T-cell counts, Lyme suppresses Natural killer cell count such as CD57. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active the infection is, in Lyme disease we can use the CD-57 count to indicate how active the Lyme infection is. When Lyme is active, the CD-57 count is low.

According to Dr. Burrascano and Dr. Stricker(two well known lyme literate doctors), low CD57 occurs in chronic Lyme or when the disease has been active for over 1 year. Often referred to as the Stricker/Burrascano panel, the count reflects the degree of infection.

* 0 – 60 indicates severe illness
* 60 – 100 the range for most chronic Lyme disease
* 100 – 200 may show improvement, still requires treatment
* >200 is normal and safe to stop treatment without relapse

see the link: http://www.lymediseaseresource.com/Diagnosis.html)

4. The biggest adjustment I’ve had to make is: knowing that the life I had planned is not the life that I can lead. Having to step back from all my plans, idea, and my art. Having to deal with the feeling of totally losing myself to this illness, of being swallowed whole by it. The mental part has always been a struggle for me.

5. Many people assume:I try to give people the benefit of the doubt most of the time but I’ve heard some of these in the past: That Lyme disease is no big deal, that it’s curable-it’s not I will always have Lyme Disease and my treatment will be ongoing for the rest of my life in some form on another. I hope that I can go into remission and will eventually have few renaming symptoms and that I hopefully won’t relapse. That I have the same aches and pains as everybody, I’m just whining about it or I can’t handle it. I’m faking I’m not really sick, I’m making it up, and I want attention. I don’t. I simply want understanding.

6.The hardest part about mornings are: exhaustion usually because I have been up all night being unable to sleep. If I’m first waking up, the first thing I do is try to discern the time. Then the thoughts flood it, I find that it’s no longer thinking of what am I going to tackle today, it’s having to do a scan of my body and asking myself, ok, can I even get up to go to the bathroom or will that have to wait an hour? Or do I need to call for help now? What pills do I need to take to make the possible? At some point during all that the pain level smacks me in the face.

7. My favorite medical TV show is: Mystery Diagnosis, they always seem to get an answer and go on with life.

Two important things: PICC line for infusing medication and my Computer for allowing me save the world from my bed.

8. A gadget I couldn’t live without is: My Computer. It’s my world and so are the people that are a part of my online life, they are my world and I am so thankful for them.

9. The hardest part about nights are: the insomnia and the lonely feeling that comes with it, that I am the only person in the world struggling to sleep, struggling with pain, having to take another pill. The darkness creeps in and so does the loneliness and that sometimes seems impossible to escape my own thoughts and the pain that crawls under my skin.

Pills.

10. Each day I take: as many of my pills as I can. Sadly, vomiting/nausea makes it hard to drink to take pill or to keep them down. I don’t even want to think about the number because I really struggle with pills. I also do IV’s once a day sometimes as much as three times a day. I never thought I’d be on Mmorphine for pain unless I was in Hospice. But that’s the truth I am on it and some days it’s all I can do just to lay still in bed and wait for the pills to provide some relief from the mind numbing pain.

11. Regarding alternative treatments: I think they are equally as important as ‘western medicine’ and am always looking to learn more.

12. If I had to choose between an invisible illness or visible I would choose: I’d fear it being visible with the reactions I’ve had from it being invisible. I also know how much support I would get when I had a visible injury that was short lived because that’s what most people are comfortable dealing with. I don’t think either is easy if it’s chronic.

13. Regarding working and career: on hold. My dreams live in my closet with my IV fluids and medications. I hope one day I can dust them off and start making some headway again but I need many things to improve physically and mostly mentally. I struggle to think and to stay focused. I know that will be another journey entirely because it seems that being ill has forced me underground, once I reach ground level and I hope I do, then will talk about work and career.

14. People would be surprised to know: how much I struggle and how much help I really do need. It’s not exaggerated in any way when I tell you how I’m feeling. People say that we’re all so brave, well, I’m not brave. I’m not amazing. I need help to the bathroom some days. I’ve had to have food fed to me. Nothing about that is brave, it’s simple: I’m doing what anybody else would do, to fight with everything I have to keep control of my body and mind. Some days I do better than others.

Excerpts from Jakki’s Photographic Documentary: Undiagnosed

15. The hardest thing to accept about my new reality has been: the Losses. Friends. Life. Driving. School. Theater. Colorguard. Physical Abilities. Memory Loss. Not being able to control my own body. Everyday there’s a new reminder of something in my life that is not there anymore. It’s hard to accept these losses because most of the time there’s not some easy fix or replacement. Most of the things I’ve lost are gone and some day’s that’s impossible to accept.

16. Something I never thought I could do with my illness that I did was: Everything, really. I taught while I was sick. I marched when I was spending most of my time in a wheelchair, my arms and legs were numb from neuropathy. I could feel to point my own feet. I had to rely on my muscle memory to do things and sometimes even that failed. I performed with in 10 hours of being release from the ER. There were times when I honestly believed I could not make it through those 6 minute shows. I was able to fight for those things because it was about something bigger than me. I never thought I’d get out of that wheelchair. I believed I would not see my 21st birthday, I believed whatever I had was going to kill me. I fought for myself when I knew the doctors had no idea what was going on, and I kept searching. I never thought I’d find an answer.

17. The commercials about my illness: there are no commercials to warm people of the dangers of this illness, sadly. I am thankful for the awareness that Under Our Skin has brought to movie theaters across the globe but it is just one small step in the right direction. (http://www.underourskin.com)

From the Into the Light Gala, Charlotte premier of Under Our Skin.

18. Something I really miss doing since I was diagnosed is: being able to trust my body and mind. Driving. Working in the theater. Performing. Spinning. Taking a bath without help. Being able to read. Spontaneity. Being reliable. Making new friends. Being myself. Trying anything. Being fearless.

19. It was really hard to have to give up: The person that I was before, the hopes and dreams of that person. That person died somewhere a long this journey, I hope I can someday begin the journey back to myself. Some of those dreams may have to be altered but I know they are not impossible.

20. A new hobby I have taken up since my diagnosis is: reaching out and becoming friends with people through online communities. books on tape. writing. and drawing for fun.

21. If I could have one day of feeling normal again I would: I’d have no idea what to do with myself. I’d go for a long drive, have 3 amazing meals enjoying each bite, go outside, spend an hour spinning, drive some more, share the day with the people who have cared for me while I was sick. And I’d dance, my god would I dance.

Outside the Doctor’s Office

22. My illness has taught me: something I thought I already knew. But I know now more than ever I understand how to live in the moment. I can close my eyes an savor a time/place/feeling like it is a fine wine that I hope to never forget. I’ve learned how to press pause on my reality for any reason that I see fit. Common things can be gifts, every second can be grand, and each moment of weakness can be another chance to find a bit more strength.

23. Want to know a secret? I’m not strong. I used to think that being strong would protect me from something, that if I was a brick wall nothing could hurt me. Getting sick tore down the wall. I have not always handled this illness and the symptoms that I have well. I have not always been happy go lucky, I have had limbic rage, depression, anxiety, and PTSD. I still suffer mostly from the depression. When I’m with people now, I’m in character, the one where when you ask if I’m ok, I say ‘fine’. I wear a mask to keep people from having to see how vulnerable and scared I really am about this illness and to protect them from the truth. I try to lower that mask for people who have taken the time to slow down with me and really want to know that truth. I no longer fear people seeing me at my weakest.

24. But I love it when people: listen. Offer hope. Let me be myself, so that I don’t have to be in character around them. Come lay in bed with me, talk to the dogs, eat something-even if I can’t. watch movies with me. Talk to me online. Check in on me. Can sit in silence and just enjoy spending time together, not having to make plans. Who notice when I need them to just make a decision for me because I can’t think through the situation. People who are perceptive and advocate for me when I can’t. I love it when people care and make it known, even in the most simple ways.

25. My favourite motto, scripture, quote that gets me through tough times is:

Sometimes you wake up. Sometimes the fall kills you. And sometimes, when you fall, you fly.
-Neil Gaiman

It’s so hard to forget pain, but it’s even harder to remember sweetness. We have no scar to show for happiness. We learn so little from peace.
-Chuck Palahniuk

Nothing’s lost forever. In this world, there’s a kind of painful progress. Longing for what we’ve left behind, and dreaming ahead. At least I think that’s so.- Tony Kushner

Currently listening to: Fix You by Coldplay, music has played a important role in my survival and I could not begin to list all the music that has kept me going.

26. When someone is diagnosed I’d like to tell them: find an amazing doctor who you trust with your life, who believes you and do your research. Know what is going on with this illness in politics, in medicine, and most importantly how it has chosen to attack your body. Recognize that everybody has a different case but we all have similar struggles, it’s ok to reach out when you need help and to hibernate when you can do nothing but lay in bed and sleep. It’s hard, but that’s a given, because you are fighting for your life and should treat your treatment and protocol as such-a life saver. DETOX! Find a way to get rid of those toxins, that’s your key to being able to more forward with treatment. Don’t forget to heal your mind and your spirit, because they will get damaged a long the way, do not leave this part for last. Some days will be the worst of your life and you will have to remember that you are fighting for just that-your life. So you need to keep a strong focus on what and who is most important to your life and draw them closer than ever and throw yourself into their love when you feel like you’re falling and let them catch you and pick you up. Eat what you can, when you can. Play when you can, laugh when you can, get outside when you can, and when you can’t find somebody who is willing to stand beside you and share the silence and sickness with you.

The Wizard, as we call him and who happens to amazing Doctor. He spent over 20 years as prominent HIV/AIDS doctor is now treating Lyme Disease patients despite it being an uphill battle. He’s is in the business saving my life.

27. Something that has surprised me about living with an illness is: How people really fight to keep their blinder’s on and not see how sick you are. How our society deals with those who are ill. I’ve been surprised how those who were the closest turned away first, those who had experience cancer saw my illness and walked out the door because cancer and lyme disease have nothing in common. (please take a look the the symptoms of both and the side effects of both cancer and lyme disease treatment and you’ll find yourself surprised at the answer) How little doctors know about this illness but how few admit that fact. How under diagnosed it is. How one bottle of doxycycline in that summer of 2000 would have saved my life from ever becoming what it is today. It could have prevented the pain, the blindness in my left eye and diminished vision in my right, the seizures, the gut issues, the spinal and brain infection, and the havoc that is being wreaked on my joints, organs, and tissues and the many other symptoms that my brain will not allow me to remember at this time. How when the insurance that my family has paid for did so little, they paid for one month of treatment on IV antibiotics and I’ve been on IV antibiotics 12+ months now. How my family found a way to pay for the bills out of pocket. One bottle of doxycycline, maybe $20 spent in 2000 could have stopped my family from being $70K in debt and I still have 2 years of treatment left on Oral antibiotics with no promise of remission. The $70k doesn’t include the money we spent searching 3 years for a diagnosis, seeing specialist after specialist and running every test possible. I’m surprised that there’s not more knowledge when this illness is more prevalent than HIV/AIDS, West Nile Virus, and Avian Flu combined in the US. (http://underourskin.com/blog/?p=337) This year in the US according to the CDC from 2006-2008 the number of lyme cases in the US increased by 77%. Imagine if cases of cancer rose 77% this year, don’t you think it would become a higher priority for research. I’m surprised how little people know about this illness and how quickly it is capable of disabling those who are infected. It’s been said it will be the next tsunami and we’re a good 15 years behind in research. It blows my mind.

28. The nicest thing someone did for me when I wasn’t feeling well was: Meredith sent me some amazing cards and some pictures that Gabe drew, Beth sent me a hat from Hawaii, Elizabeth sends me at least one postcard every two weeks from her Postcard Project and they now have their own scrapbook. My Mom got involved even when she didn’t understand why I was having so many issues. It took her time to come to understand what was going on but she learned and researched, she went to doctor’s appointments and asked questions, she fought for me when she thought people weren’t listening and believed me when I felt we needed to keep searching. She advocated for me. My grandparents never doubted me and have been there every step of the way. My grandmother took care of me that summer in 2000, as a retired nurse her gut told her it was Rocky Mtn. Spotted fever and she never forgot that, it was key information that lead me to Lyme disease in my research. My grandparents made it possible for me to be able to have treatment, and I am forever grateful. I knew they believed in me before, but now, I’m an investment. I have a small group of friends who have been my world and who have kept me alive. Some stop by my house and drop of pixie dust when I feel like I can fly anymore. Some who have made me some great mix CD’s to listen to while infusing to keep my spirits up. I was surrounded by a great group of students that are now much more like a very dysfunctional but loving family, each year it seems that one or two more gets adopted, they come and go but they all have a piece of my heart. In the beginning, I thought I was teaching them, but they taught me some of the most amazing things I know. I’m thankful to them beyond words and I won’t forget them, I promise.
And then there’s Jakki, she’s seen more and done more than somebody with no interest in the medical profession should have seen. Talk about a behind the scenes tour. She’s been so many things to me, but most of all she’s my hope and I can never say thank you enough for that. She’s seen me at my absolute worst, through 5 surgeries, millions of pills, thousands of types of sickness, terrible waiting room magazines and bad tv, the countless doctors appointments, always having to put parts of her life on hold at last minute, watched far too many seizures and post-ictal periods, she’s watched me lose my memory and not know who she was, stood by and helped me regain it several times. She’s ran IV bag after IV bag, learn to draw fluid up from a vile, mastered sterile gloving, changed picc line dressing each week, remembered way too many medication names, meanings, types, and my reactions to them. She’ll do just about anything to entertain me or make me laugh when the it felt like the walls were caving in and I was speaking in Hebrew, then that book came falling through the floor. She thankfully, snapped me back to reality. Seen me have more medical tests than I remember, sleepy studies, EEG, EKG, MRI’s, CAT scans, Lumbar punctures, xrays, HIDA scans, and even the ones where you have to drink the really awful stuff ahead of time, she coached me through drinking that liquid chalk. She’s made me cakes on my birthday’s celebrating my survival of another year, but it’s hard to dismiss her part in my survival, so each of those cakes have been also a celebration of her. She’s done too much but always thinks it’s not enough. I think she embodies fortitude and I love her for that. She’s kept me alive, much longer than we both ever imagined possible and I consider that a miracle.

29. I’m involved with Invisible Illness Week because: We need awareness, because I never want to hear that another person has joined this club. Nobody should have to if the right education is in place and being used.

30. The fact that you read this list makes me feel: not disabled, but equal and understood. hopeful that you will do your own research, not for my sake but for yours. listened to, because you at least took the time to come this far, thank you.

I apologize for an spelling/grammatical errors, I do my best and use spell check but it doesn’t catch everything and can’t fix my wandering thoughts or cloudy cognition.

these are the moments that I hope to just disappear so I will no longer be a burden and so the pain can cease.

i feel as if i’m standing out in the darkness and i’m watching my own light fade fast, there’s nothing i can do but standby and watch it dim.

the world caved in again this morning. the memories came flooding back just as i was terrified of. i want to escape. i want to go home. i do not have enough reserve to face this. i have no safe ground or place to run to. all alone, again.

Solitude

In prison everyone gets a hour ‘in the yard’ – they get to see the sky and the sun and talk to people. Even people in high security lockdown get time ‘in the yard’. To not go outside or see outside or talk to anyone is a punishment, it is called Solitary. And even there the prisoner has the guard. “Sometimes all the prisoner has is the guard” says the ex-prisoner in Life. Meaning, humans are so desperate for someone that they will obey to get love or just talking: Stockholm syndrome, animals dying without companionship.

People commit suicide. In concentration camps they used to walk into the wire. They walk into the wire in order to be shot and end it. they did that even though they got to see the sky, and they had an hour, near sunset when they could talk and look forward to maybe meat in the soup, it was, according to a Hungarian who survived, the best part of the day: to see a bird, to talk to friends, to move and jostle in line, to be human. They say that those who survived, who did not walk into the wire were those with hope.

Above, quoted from a friend’s blog. I feel this so often, the intense loneliness. Her words describe it better once you look at the harsh reality that the room feels a lot like a prison and with only one visitor, you’re caregiver. I can only handle so much sunlight, but usually, if inside for the day, the curtains do not open. I live in darkness. I am going back into that place this week as we go to stay at a familiar place. It’s a place I know well but it provides little comfort when compared to my prison at home. It’s a new prison without the comforts of a small fridge with cold food and my wonderful bed. It has cable tv, but that is just a distraction. It has a nice bathroom with a whirlpool tub, but it won’t be home. I’ll have my dogs but not my rabbit. I’ll be left for 12 hours a day, in solitude, in this room but the house may be occupied by a person who is unaware. No reason to check on me like Jakki does, no door bell, nobody to come when I’m scared or seizing. Nobody to grab me a drink or a cool cloth. Solitude. I will see people in the evenings after the light is gone from the sky, only if I am able to make my way downstairs. Food will be provided and I hope I can find alternatives to eat with my damaged stomach, trying to heal itself from two weeks on constant vomiting. My abdominal muscles constantly ache from the tensing that comes from losing the contents of my stomach and my weight only goes up it seems. There should be nothing left of me, but my body with holds the fluid it is given interveniously because it is the only constant nourishment. I can see the fluid in my fingers and around my joints, my stomach muscles remain but are covered with fluid that I must carry. Once I am able to discontinue the IV fluids, I fear my body will lose weight rapidly, as my stomach can only hold a cup of food before feeling like I’ve stuffed myself senseless.

My mind is focused on the solitude but I know there is no real way to prepare for the two weeks that begin in less than 48 hours. I try to absorb all the sun light I can, all the human interaction, and all the care that I am given-I find myself able to be much more verbally thankful. I have things to do this week, try to finish paperwork and projects that have been cast aside. Call medical offices. Try to find a new counselor after seeing somebody for 3 weeks and just getting started, we have to stop as her hours are being cut. Finding somebody new to hand my trust to blindly, to hope they understand the layers that I deal with daily. To tell the story of the last 3 years of my life to another, in hopes they will listen with an open mind and that they can provide me with another perspective to gain understanding. With hopes of healing my insides, which I think are far more damaged than my exterior. Nobody looks close enough at either. I try to prepare my mind, but nothing can prepare you for solitude.

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