[lynn09]

Dear PC Family,

I know that some of you know about and understand my situation; but it has become apparent to me that many of you do not, and I think it might be helpful for me to provide you with some background info - not just for my sake, but the sake of others here at PC who are in similarly restrictive circumstances. I personally know of quite a few people here at PC who are in nearly the exact circumstances as myself , so I am posting this for all of them, as well.

In addition to having chronic pain from neurological damage to my spinal cord and sciatic nerves from a malformed vertebra in my lower spine (congenital defect), and neurological damage to my left shoulder, arm, and hand from being abused as a child, plus hyper-flexibility and degenerative arthritis in just about every joint in my body from deteriorated cartilage due to neglect in my childhood, plus asthma, and fibromyalgia, not to mention depression and PTSD, I also have an immune-system disorder (hyperactive) which makes me hypersensitive and/or allergic to many chemical and environmental substances, including antibiotics, anti-viral meds, pain meds, psych meds, anesthetics, adhesives, soaps, detergents, cosmetics, hair dye, fabric and carpet dyes, synthetic fabrics, fragrances, various foods, paint, cement and drywall dust, sawdust, dust and skin mites, mold, etc., and even heat and light - any light - incandescent, fluorescent, and sunlight, even light from my TV and computer monitor. I have had allergies and sensitivities my entire life, but they have gradually increased in severity over the past almost 60 years, and my allergic reactions have escalated in severity and frequency during that time, especially since the early-1990s, since which time I have experienced numerous life-threatening allergic reactions (Stevens-Johnson Syndrome).

I cannot take 40-60mg of Prednisone a day; by now my bones would have dissolved and my organs would have failed. So, my doctors in Michigan established a regimen of high doses of Benadryl and Ranitidine to mimic the immune system-suppressing effects of Prednisone without the side effects. This is the same regimen used by oncologists with their patients receiving certain chemotherapies. I currently take 400-500mg of Benadryl (Level 1 antihistamine) and 300mg of Ranitidine (Level 2 antihistamine for internal hives) a day to suppress my immune system. This works pretty well as long as I keep my apartment at 65F and very dimly lit. However, this dosage is NOT sufficient to control my symptoms in the event of prolonged exposure to heat and/or light, or significant exposure to any of a myriad of chemical and environmental substances, or during periods of intense emotional stress.

I am basically in allergic reaction all of the time - 24/7 - and have been for the past 20+ years. My doctors in Michigan who have witnessed and treated my most severe reactions told me that I should not even be alive - should not have survived ANY of my major allergic reactions, and I d*** near didn't, especially when my last medical and disability insurance carriers through my employer denied me access to medical care because they didn't want to have to pay benefits. But, I learned as much as I possibly could from my allergists/immunologists over the years so I could "manage" my condition and still work full-time and support myself until they identified the specific "damage" to my IS and how to treat/control it, and I have managed to treat myself when access to medical care has been denied to me - like for the past 8 years thanks to the unauthorized and unwarranted interference in my medical care by my abusive "family" members for the sake of money and to protect themselves from being exposed as the abusers they are and always have been.

EVERY exposure costs me. Leaving my apartment for any reason exposes me to sunlight and heat; even at night, I react if the temp is above 65F. Every exposure to fluorescent lights in the grocery store, drugstore, post office, and other public buildings costs me. Turning on the lights to read, cook, clean, whatever, costs me. Watching TV and working on the computer costs me ("sunburns" my eyes, face, throat, hands, and arms). Most of the lights in my house are 4, 7.5, and 15 watts - and I even have dimmers on them. Even dusting, sweeping, vacuuming, doing laundry costs me because the physical activity raises my body temp and the meds in my system are NOT sufficient to counteract the reaction. Even emotional stress costs me, taxing my immune system and making it even more hypersensitive.

In a full-blown reaction, my symptoms are: severe and generalized swelling, migraines, mini-strokes, mini-seizures, blurred vision, tremors, tinnitus, loss of equilibrium, loss of coordination, inability to articulate, severe mental fog, disorientation, and depression, blister rashes head to toe inside and out, even inside my urethra, skin tears and peels from scalp, back of neck, face, inside eyes, nose, and mouth, from ears, back of upper arms, back of thighs, shins, ankles, feet, mouth and tongue sores, swollen and bleeding gums and loosened teeth, hives in lungs, esophagus, stomach, and rest of digestive track, internal bleeding, nausea, diarrhea, fluid draining from ears, fever, chills, and screaming pain in every cell of my body, and all of my lymph glands have been constantly swollen and painful for over a year now.

All of these symptoms are just barely held at bay by my current dosage of antihistamines. I have had to gradually increase the dosage over the past 10 years, but I try to keep the dosage as low as possible so that I don't build up a resistance to the meds. At some point I will not be able to increase the dosage any further because it will become toxic, at which point I'm screwed. My Michigan doctors tried every antihistamine there is, but Benadryl is the only one that doesn't reach toxic levels until extremely high doses. As for the heat and light sensitivity, there is only one treatment - avoidance. Any significantly prolonged exposure to heat and/or light causes those symptoms to "break through" - even if I'm late taking a dose, the symptoms begin to manifest. I can only tolerate a limited amount of heat/light exposure each day. If I am exposed to the computer monitor too much, then I can't clean, or do laundry, or go to the store; if I clean too much, then I can't be on the computer; if I go out to the store and to run necessary errands, then I don't get to do much else for a couple of days until the symptoms subside.

After being completely isolated and ostracized for the past 8 years and denied access to appropriate medical treatment thanks to my "family," the insurance companies, and my Texas healthcare providers, and having even LESS help here in Texas than if I had stayed in Michigan, I was wearing thin. I had to give up my car a year or so ago because I could not afford to repair it - and I certainly cannot afford to buy a new one on SSD. Since my disability does not specifically prohibit me from driving and I am under the age of 65, I am not eligible to use Handitran. I do not qualify for food stamps, or assistance with housing, utilities, co-pays, or any other financial or other assistance of any kind. I was never able to have children, so I am completely alone here, except for my cat. If I am ill, there is no one to take up the slack - no one to cook or clean or grocery shop or run errands or take care of my cat or me or anything else - nothing gets done unless I do it. I am so grateful to have found PC and so many wonderful, caring people when I did. You all have helped me so much, inspired me, given me strength, courage, and determination that I was running so low on.

I honestly try my very best to give as much time and support at PC as I possibly can. But, please understand, if I have to spend time on the computer dealing with my own legal and medical situations, and other personal business, then I can't spend much time at PC. And, as some of you know, I have recently been having recurring bouts of the flu and Shingles to deal with, as well. Everything is a trade-off for me. If I spend time reading and responding to threads, then I can't spend time dropping off VMs, or working on my stuff. If I spend time dropping off VMs, then I can't spend time reading and responding to threads. Some days all I can do is respond to one or maybe two threads, or just say a couple of hellos because I am too ill to do more than that, and I still have housework to do. Add to this that I now have cataracts which are making reading difficult and slow. Since I am allergic to antibiotics, I can't have surgery for the cataracts - so who knows how much longer I will even have my sight?

Each time I respond to anyone's thread, I read their profile and research other threads they have started - even if I am already familiar with the person - to make certain that my input is as relevant as possible to that individual and their situation. This takes time. I do try my best to keep up with everyone. Updates to every single forum and thread I subscribe to, as well as any PMs and PC e-mails I receive come in to my personal e-mail account on my computer, so that at a relatively quick glance I can keep track of what's going on without having to be logged in to PC; but, of course, I only know about new threads by the daily Forum update reports, or if I'm logged in. Sometimes I want so much to respond to someone's post, but I can't because my reaction is breaking through and I have to get away from the monitor because I can't afford to be sicker than I am already.

I can only offer my heartfelt apologies to those who may feel that I have abandoned them or haven't paid enough attention to them. I can only hope that they understand that it is NOT because I don't care or don't appreciate them, and it is NOT because I think badly of them and have rejected them. It is because I can only do what I can when I can - just like every other PC member. If anyone truly values my specific attention or input all that much, then please do not hesitate to send me a PM or an e-mail - they all come directly into my personal e-mail account on my computer. Several of my PC friends PM and e-mail me frequently. I have never denied anyone appropriate access to me and, to my knowledge, I have yet to fail to respond to anyone's direct communication to me. Further, I do not share with others anyone's confidential communications with me - others know about you only what YOU tell them yourself.

My point being just this: if you are going to make assumptions about your fellow PC Family members, then give them the benefit of the doubt; assume that everyone here has difficult physical and/or mental health issues they are struggling with, and that they are each doing the very best they possibly can considering their particular circumstances. As for me, if the best I can do is not good enough for some among you, by all means then, break friendship with me and put me on your ignore list.

Sincerely, Lynn09

[Zen888]

Lynn

You are so supportive and understanding to so many people on PC. You are an inspiration to everyone to aspire to be so giving towards others despite our personal circumstances.

I value the time and energy you put into responding to my posts and other communications.

((((((((((((((((Lynn)))))))))))))))))))))))

Sincerely,

Zen888

[Yoda]

Oh, wow, Lynn, I had no idea you were so sick. I read your posts with interest and you are always so well composed in text that your personal life challenges are not apparent.

I am frustrated by my exacerbation of asthma because my body can't do what my mind wants to. Chronic health problems suck.

I hope that medical science can find a better alternative for your illnesses.

[Ratanddragon]

Lynn, we've never communicated that I know of. I've read a lot of your posts, however, and find them to be well thought out. Personally, I appreciate that in a co-poster. Be good to you and joke 'em if they can't take a ****!

[ThePainNeverDies]

Lynn, I'm another person who didn't realise you were so sick. Reading this made me feel so sad for you... People can be so cruel and I cannot believe what your "family" have done to make you suffer even more

You're a lovely person and your replies are always appreciated, most definately by me. You put yourself arcross so well and your support is so very valued here.

I hope that things can someday improve for you. You really do NOT deserve any of this pain and suffering. You're a very strong person to keep pushing on and you're such an inspiration

take good care of yourself

[pegasus]

[quote=lynn09;1198490]
My point being just this: if you are going to make assumptions about your fellow PC Family members, then give them the benefit of the doubt; assume that everyone here has difficult physical and/or mental health issues they are struggling with, and that they are each doing the very best they possibly can considering their particular circumstances. As for me, if the best I can do is not good enough for some among you, by all means then, break friendship with me and put me on your ignore list.

Sincerely, Lynn09 [/quote]

Gosh Lynn, I'm sorry that you felt that you had to write this. Maybe a PM to the actual person concerned would have been a better way of going about this.

We all deserve support. Hugs ((((((((((( Lynn ))))))))))))))

[lonegael]

(((((Lynn)))))) Oh, how the arm of evil is long. I am so sorry. I had realized thatyou had AI problems and that going out was hard for you. When you hadn't been around for a while, I was more worried that you were ill. I had no idea it was that extreme.

As far as I am concerned, it is fine to take a break from PC. IRL has it's demands also, and I know I can't take all the time to answer everyone I would like to. Part of trying to stay healthy is maintaining a balance. I know I have to be brutal with myself to do that. In your case, dear, if you are fighting for your life, you can be excused from answering every thing I say, that's for sure. Rest easy in tht, Warrior woman Lynn. You have my heartfelt admiration. HUgs.

[Berries]

I also am sorry you felt you had to write this.

I knew of your many, many physical ailments from another post you wrote a while back. I have always admired you for your dedication to yourself and others here at PC, despite your illnesses, injuries, and circumstances. You are truly an inspiration.

By all means, take care of yourself first and foremost. I would never try to deny you of that. I can't imagine who would.

Take Care, dear one.

Keep doing the best you can.In another thread I had talked about Atlas carrying the weight of the world on his shoulders. That sure sounds like you here. I pray that god will lessen the load you have to burden. You are a very nice person and deserve a lot better. Have faith

Sincerely,

Sardean

[lynn09]

Originally Posted by pegasus

[quote=lynn09;1198490]
My point being just this: if you are going to make assumptions about your fellow PC Family members, then give them the benefit of the doubt; assume that everyone here has difficult physical and/or mental health issues they are struggling with, and that they are each doing the very best they possibly can considering their particular circumstances. As for me, if the best I can do is not good enough for some among you, by all means then, break friendship with me and put me on your ignore list.

Sincerely, Lynn09

Originally Posted by pegasus

[Gosh Lynn, I'm sorry that you felt that you had to write this. Maybe a PM to the actual person concerned would have been a better way of going about this.

We all deserve support. Hugs ((((((((((( Lynn ))))))))))))))

Thanks, Pegasus, and I do understand your point of view - I did send a PM, but it was ignored.

And "Thank You" everyone for your kind and supportive words. But, please do not misunderstand - this is not about me and my situation - I'm addressing an attitude. There are so many people here at PC who inspire me daily and, although I know their stories, it is not my place to reveal the details of what they are struggling with; so, my description of my situation is just ONEexample of what so many others here deal with daily - yet they do their very best to support and help others and none of them need to be made to feel inadequate. Just want a few folks to get a little more realistic perspective on things.

[lynn P.]

Dearest Lynn09,
I also take the time to read the 'about me' on people's profiles to understand them better. my heart aches that you have so many physical problems and you've endured so much physically and mentallly. I have always admired your posts and appreciated the support you give to everyone here. Thank you for taking the time to explain yourself - I feel a little sorry though, that you felt the need to do so, perhaps due to a negative experience.

I know the feeling of having a person get offended and break a friendship over something that could have been solved so easily. It doesn't feel good to be ignored when you write a PM.

You're a special and strong woman and I have great admiration for you. Please in the future, only give what you're capable of and don't feel you need to apologize. Take care of youself Lynn. You're great in my books friend

[Naturefreak]

Lynn
I also was not aware you had so much going on with your health.
I am glad you are my friend and I hope I never said anything to upset you. We all need time for ourselves and I appreciate all you do for me and everyone else here at PC. Many hugs to you and take care

[Fuzzybear]

(((((((((((((((( lynn09 )))))))))))))))))

[justfloating]

((((((((((lynn)))))))))))


I'm sorry you felt the need to write this but having read it I want you to know that you're my hero. I can't imagine carrying as much as you do! It's a real inspiration to me. If you can carry on despite so many serious ailments, then I'm going to do my best to carry on too.

[lynn P.]

Originally Posted by justfloating

((((((((((lynn)))))))))))


I'm sorry you felt the need to write this but having read it I want you to know that you're my hero. I can't imagine carrying as much as you do! It's a real inspiration to me. If you can carry on despite so many serious ailments, then I'm going to do my best to carry on too.

I completely agree with you ((((Justfloating)))

And Your Pain.
Sharing is a Good Thing.
It allows release
of our
trapped
emotions

[lynn09]

Thanks for all of your responses - you are all so sweet - (((((Everyone))))) But, please let me clarify - my feelings are not hurt, no one has offended me, I do not feel ignored, neglected, or unappreciated in any way - you guys are the best - honestly. I receive more than enough support and inspiration from so many here at PC. However, a recent incident simply highlighted a particular attitude among some that I wanted to address.

I am not at liberty to share with anyone the serious issues that I know certain other PC members are experiencing that sometimes limit their level of activity on PC just as mine limit me at times; therefore, I could only share my personal situation as an example in order to demonstrate a point. In all truth and honesty, I do NOT consider my situation to be all that unique, especially among those who are around my age. As they say, "If you're going to be old, you can't be a wimp."

I wanted to give some folks a different perspective on things; instead of assuming the worst about other PC members' characters and motives, give them the benefit of the doubt and do not place unrealistic expectations on your fellow PC Family members because you never know what another person is dealing with in private, and everyone is doing the best they can within their personal limitations.

Does this help clarify?

[lynn P.]

I understood you from the beginning my friend but thanks for clarifying Lynn

[lonegael]

Good point, well taken, Lynn! Thanks!

[turquoisesea]

Lynn, thank you for this post. I was not fully aware of your sickness, I knew some but not all.

I try not to judge, but this post is a good reminder of that . I don't always look up the person's posts, I keep up to date on the ones that are in the same forum area, but it might be a good idea for me to start. I can see how much time that would take...

I wish there was something I could say that would make your situation easier. I am wishing you the very best, I have to go for now and my brain is'nt working so well because I have the flu *is losing focus* but I want you to know I care, and have read, and thank you

and lots of hugs from me