Some good days, A lot more bad days based on the addition of bad moments vs. the good ones

Dearest friends:
I was so grateful to run across the attached web site's material tonight after going through one of "those" few days:
It happens pretty regularly - only the symptoms or problem changes - this time - one day, a migraine, that night, no sleep of any worth to my body, the next day, fatigue and "brain fog"...Yes, Mother's of children face this problem - many will force themselves to bathe, put on make-up, and carry on with their day. But what about those of us - the ones of us that cannot always bathe without help on "those days from being too stiff or in too much pain - what do people like me do? Well, to be honest, I have the "bath in a sanitary pack". They come like baby wipes, travel size or in a bigger box. They contain some awful crap in them that dries out the skin; yet is effective in getting off any dirt and is really a great compromise for a bath when I can't take one. Typically, I have to use these about 2 days out of 7, and sometimes 1 day of 7, I just don't feel well enough to bathe. It does suck, but it is less embarrassing than my almost 6 year old see his Dad having to "take care of me".
Frankly, we explain things differently right now for Joey so he isn't horrified to find out his Mom is not somehow close to normal. I need my son to have a concept of what normal is for him to form those healthy brain cells, so if he should ever (God help him, I hope he never does to the extent some of us have) see hell; he has normal brain chemistry in his mind to recover.
In the meantime, like any parent, we are teaching him to cope with the real world that he has, as an almost 6 year old.
My closest analogy to being chronically ill is like having a newborn baby that doesn't ever grow up: It requires constant attention, causes me to feel sleep-deprived, some days I don't bathe or wash my hair, although my yearn to feel normal over-rides this feeling more often than not and I delve into what usually is a 1 hour bath, It just takes that long - kind of like bathing your newborn. If you can apply that logic to just about anything a person with a newborn does, you've got my life. So, I keep up with a 38 yr old, a 6 year old, a newborn, and on the days I get to - myself. I miss myself. I don't get to have enough time with myself.

Because there seems to be little understanding as to when I might be seen on a good day or bad day, I found the following a good start for those lacking in the common courtesy arts for the Chronically Ill:
Here is a great explanation from another blog about us "Chronically Ill" folks:

"Invisible Disabilities?" What Does That Mean?

"A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults)" (Disabilities Affect One-Fifth of All Americans). Just because a person has a disability, does not mean they are "disabled." Many living with physical or mental challenges are still able to be active in their hobbies, work and be active in sports. On the other hand, some struggle just to get through their day at work and some cannot work at all.

According to the Americans with Disabilities Act of 1990 (ADA) an individual with a disability is a person who: Has a physical (or mental) impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment (Disability Discrimination). To read A List of Limitations on Major Life Activities Click Here.

Often when we think of the term, "disability," we assume it only refers to people using a wheelchair or walker. On the contrary, the 1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker (Americans with Disabilities 94-95). In other words, 74% of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assisted equipment.

The term Invisible Disabilities refers a person's symptoms such as extreme fatigue, dizziness, pain, weakness, cognitive impairments, etc. that are sometimes or always debilitating. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc. and are not always obvious to the onlooker.

A person can have an Invisible Disability whether or not they have a "visible" impairment or use an assistive device like a wheelchair, walker, cane, etc. For example, whether or not a person utilizes an assisitive device, if they are debilitated by such symptoms as extreme pain, fatigue, cognitive dysfunctions and dizziness, they have invisible disabilities.

References: Disabilities Affect One-Fifth of All Americans, 1997 www.census.gov/prod/3/97pubs/cenbr975.pdf

Disability Discrimination www.eeoc.gov/types/ada.html

Americans with Disabilities www.census.gov/apsd/www/statbrief/sb94_1.pdf

I'm hoping this information (and venting that I needed to do) will clear up any questions for those that wonder why some of us can "look just fine", even "better than ever", and can still be worse than you'd ever know.

Love (and feeling Loss)
me

Another Con in Newborn Vaccinations: (including toddlers, young children, etc.)

Another study showing the ineffectiveness of vaccinations, summarized by HealthDay; April 4th:

Study suggests reducing food intake may impair immune system.

University of Chicago researchers found that reduced food intake or even, reducing the amount of feed to a similar mammalian [immunological model -deer mice] system, impaired the immune system's response. The findings were published in the May/June issue of Physiological and Biochemical Zoology. Furthermore, "decreasing the amount of food the mice ate by 30 percent significantly decreased the number of B cells in their systems." The same authors stated, "previous studies have also found that vaccines that provoke B cells to protect the body long-term, such as the vaccine for measles, are less effective among the malnourished."

What is the take home message? Babies are born and have to become accustomed to mouth feeding. Some take to it quickly, others are slower to start. Either way, it takes some infants months to become prepared for the introduction of solid foods, much less become accustomed to a regular feeding schedule shortly after birth. However, before you leave the hospital with your newborn in hand, unless you otherwise state; your baby will be vaccinated with, at minimum, 3 vaccines! Knowing this information alone, are we all really comfortable letting someone that knows nothing about our family history, child's birth weight, or feeding habits, make such a vital decision for us because of State and Federal mandates? When Joey was born, my answer was "No". When asked, my answer is still, "no". Unfortunately, our children must be vaccinated in order to attend daycare facilities, public schools, and even private pre-school/daycare facilities so that the facilities do not risk the loss of their license by 'aiding and abetting' in a form of "child-abuse"(!) (as defined by many agencies that regulate these practices, including the AMA)! How, as concerned parents, do we get around such strict measures? Finally, after all the hell I've been through, I finally am getting the message. I need to share these lessons. For now, I will start with this one: One, be prepared to cut you or your partner's man hours. 2) Do not employ anyone in their toddler years that is a "licensed daycare giver", etc. 3) Get informed. Find out what vaccines are for what 'diseases' and whether they are from live attenuated virus or LAV particles. If no, is it a DNA vaccine or RNA vaccine? I have found over the 15+ years of being in the research and clinical lab fields, that DNA vaccines (that are not mixed with other vaccines) are pretty safe, and would be the only vaccine I agreed Joey could get before we left the hospital on the 3rd day after he took his first breath without me or in the safety of my womb. 4) If you want to see how your baby is going to respond to a vaccination, go with the anti-DNA HBV vaccine series first. It has been proven to be recognized by the immune-system in the same way the immune system would recognize the virus itself, however, the live attenuated viral particles/LAV are not part of the vaccine make-up. 5) Most importantly, when it comes to beginning vaccinations of your infant/toddler/child, establish early-on "one vaccine at a time"(not one vaccine-type at a time, but literally, one vaccine for one disease at a time). No trained/long-standing pediatric nurse or pediatrician will allow your child to be vaccinated again for 21-28 days minimum. Considering the hustle and bustle of Pediatric Clinics, it is wise to have the 'worst' of the vaccines (the combination vaccines or "com vac's", as they are often called) to be planned ahead of time and given during the summer months, when cold and flu season is well over. Also, find a time when no one that has/has had immediate contact with your child is, or has been, sick for 72 hours prior to the day your child gets his/her first "com vac"or start of his/her vaccine series. Once you are able to see (& document) how your child does with other vaccines (including your 1st Hep B), and after you have an established eating and sleep schedule, feel free to allow for the 2nd Hep B with a "com vac" or a different vaccine to be started/given - IF your child has already tolerated (a) previous vaccine(s) or their first set that can be combined. 6) It is best to vaccinate, if possible, during a time when your child will be in your care the most over the 21-28 day period mentioned so YOU can be the one to document any fever, illness symptoms, behavior changes, etc. Once you see how your child responds to EACH vaccine or vaccine group (some come in groups regardless), do not allow ANYONE to talk you into skipping ANY timebefore the "booster shot" is due! If anything, think back to your own childhood, when booster shots were given at age 12 years and ask yourself, "Why does my child need 5 DTaP/DT/Td vaccines, 4 Prevnar, 4 Hib, 2 MMR, 4 Hep B (actually, that one, if scheduled correctly, can be done by the time your child starts Kindergarten if you go on the basis that your child's immune system is in decent shape for that one), 4-5 Polio, and possibly 1-2 Hep A (depending on state regs.) vaccines before he/she is 5 years old??!"!!

It is a hot topic, yet excellent question, for those of you concerned about this issue. This one issue can cause the questions regarding it lead to heated debates between scholars, state mandate's, doctors, parents, and researchers, and usually, the children getting the "shots" themselves! I've heard about parents guilted into accepting responsibility for their infants to get their vaccines "on time; while they won't remember them" as a way to get cooperation from 'combative' or 'over-protective' parents. Logically, if someone needs to scare you into making a decision; you definitely want to check into what and when each vaccine is required by your state, as well as, what it is for and more importantly, how far you can possibly stretch out those last (or in some cases, last couple of) "booster" shots? (This information should be public knowledge in each state and easily found via the Internet.)
Consider this: the meaning of a "booster shot" is to re-familiarize the immune system of its ability to eradicate the disease in question with the original B cell(s) that are storing the originally-formed antibodies (which can take time, some vaccines state 21-28 days before "symptoms of the vaccine dissipate!). Upon final vaccination, that B cell/antibody forms it's final 'back-up copy', so to speak, in order for it to be recalled later in life. (The earlier vaccines were established for childhood exposures, but for some reason, 'not all children' were getting the proper response required by the vaccine. Therefore, the vaccination rate started earlier and the amounts given have gone up.)
It seems the longer between (at least) the final "booster shots" and the initial, immune-accepting vaccine(s), the better for the maturing immune system (using A + B = C thinking). With the above in mind, you can answer this question: if your 'established' infant/toddler/child just got their first series of vaccinations 2 months ago, do you really think the immune system (needing 21 years to reach maturity), is going to FORGET it has gotten a vaccine recently? If Immuno-toxicologists/Immunologist were speaking (or if asked myself), the given answer is "No", and always will be.

Yours,
XXOO
Suzanne

SOAP-BOX ALERT!

This is sensitive material for mature audiences only. If you do not have any strong opinions for a better political, economic, social-economic, or general improvement in "mass ethics"; then do not read any further. I recommend one of the pages to the left to read instead.

If you are bold enough to continue, keep in mind this is what I wanted to write on the petition sponsered by the Care 2 Action Network (also on the left) for "making high-quality, voluntary pre-kindergarten available to all American children":

You've been warned! Reading any further is at your own discretion and therefore if you have a problem with it, please remember I kinda, well, "told you so"! :)

Ignorance has cost us the lives of some of our most precious resources.

Children are our #1 resource; the only renewable 'energy' we have, and yet, their future is more unstable than my great-grandparent's future was back when they all huddled in one school house room, if they were lucky enough to have a local school!

At present, many cities’ kids are not even safe to GO to school. Some are killed just for BEING at school. While pre-K for all children will help every young mind get the right start towards what is important and vital for them to have a better future than the one looking at our current graduates, it is only the beginning solution to our problems.

Take the following: for example, if $1 from EVERY convoluted government- funded program would allow all children to have pre-K; literally leaving "no child left behind", then the advanced material started earlier because it is repeated over and over for the "NCLB Act" might literally happen, without an “Act” to prevent children from being “left behind” in school academics.

Consider then, what another $2 ought to allow: better pay for teachers, for instance. After all, these are the people that serve as "other parents" of our children during the school week days, yet they have no authority as “parental figures” and now thanks to “NCLB Act”, no TIME because of ridiculous bureaucratic paperwork in order for them to provide any kid the one-on-one attention, encouragement, or discipline needed to teach them at such a young age!

Then, JUST IMAGINE what $3 from such a mass of programs could create for cities like Chicago, with gang issues, that could have something like early-aged after school programs for just their age group - programs sponsored by schools, parents, and their communities that could help these young children to learn to bond with people instead of fighting the very authority that wishes they could protect them, but must instead wait until they visibly SEE a “real problem” on school premises before being able to refer these children to the over-burdened social worker system already dealing with the grown version of the younger problems that, we as parents, can identify by the time our children start their second semester of their Kindergarten year!!!

Then, just MAYBE, $4 would allow youth to stay in a safe and secure environment; while they learn, bond, and grow under authority that is PAID ENOUGH, so that only the best of people are wanting to teach and help raise our country’s children; caring extra for the ones that need early intervention. Is it possible then, that parents would allow the schools to pull these children as early as Kindergarten; to teach them about bonding, friendship, how to ask for their needs to be met in a non-threatening, honest way through an anti-bully and/or friendship “program” - so that they learn how to feel good about themselves way before the allure of a gang crosses their mind!

Let’s face the hard facts: the generation(s) ahead of these hypothetical kids, graduates today, were not allowed any MORAL direction in school because anything that resembled respect, discipline, ethics, or teaching of our oldest world historical book that suggests a "higher power" or conscience or any such lessons were banned from our schools YEARS ago!!!

Then, just MAYBE, THESE hypothetical pre-K, cared for, and encouraged children, as adults would have a divorce rate that would go down. Maybe then, their kids would not have to turn away from their young peer group they barely learned to bond with early on because somewhere in their early lives they were watched after patiently, shown love, encouragement, and individual attention...get where I am going with this???

These national problems will take a while to fix, time could measure into generations – but the earlier the start, the earlier we will all begin to see that, for instance, that “John’s behavior” reported to Mom and/or Dad in pre-K would allow these kids the chance to have “identified early intervention” before “John” needs to turn to a gang for moral support; and would instead get the extra help and encouragement, etc. etc. that he needs to thrive.

If our society is ditching their children where they can “make ends” (as mentioned by one parent on the petition comments section), then let’s come up with an “end” for parents that is realistic, so that our children’s children will never have to be asked at school orientation when handed their yearly dress-code and conduct handbook to: ‘not bring weapons to school property’, ‘pass through metal detectors to check for devices deemed unsafe in an educational setting”, etc., as part of their Elementary School Orientation!

Didn’t the 70’s teach us anything? Are we so all ignorant that we have forgotten the demons that bring about these problems? If we are not there for our children, our family, our friends, or our neighbors; before you know it; we will all be without any morals, fighting one another in the street for some ‘thing’ worth less than the trouble we all went to obtain said thing.

If our country is moving in this direction with a G-force so strong the world is about to shift on it’s axis (or maybe that is what global warming was “really” started by!), then do alert me so that I may need to leave my boxes in the attic and never fully move in anywhere in case we need to make a quick get-away?!

Oh, I hate the soap-box! But, I had to let these feelings out! Honestly, they began before I sat in front of the computer; manifested in my despair to my immune system’s lack of response to every-day “germs” after trying to treat a rash obtained from a ‘clean’ pair of the ‘patient’ goggles I used at the dentist during a cleaning and an enamel repair. It snowballed from there as you can see.

I feel better; however, I fear I have created a monster in the process! Well, I guess I will either a) have NO friends left after this post or b) will be accused of more bizarre behavior and be tolerated by even fewer people. I’m not sure why it is we are not more honest about the things that we see as our greatest fears in raising kids in today’s society. While I am all for the positive thinking, mantras, and most importantly of all, setting the example I want to see from my child (which takes admission on my part of my wrong-examples or help from friends that are willing to be honest with me of their view-points, because family of this type does not exist for us); I also wish that the society where the one child/children in the community left without a Dad or decent parents were “taken in” for lack of a better word, by a neighbor or classmate’s family/Dad and therefore didn’t get “lost” – is just a thing of the past. If I can’t even count on my own immediate-extended family to be there when I need them, then really, I am only doing as well as the latest information I can get my hands on!

More than anything, I need my body to produce a consistent amount of immunity, so I can have the years that I really want to have with my husband and my son. There is so much left to say and so much left to do. Maybe now should be the time I ask for mass, prayer list prayers, for a turn in my failing health. My family that I have, no matter how small, really needs ME. If I cannot give them the Mother figure they need here, Joey and Gene will lose out in the long run if I should rapidly decline while we are here anytime in the current. This fear I have is generated by very real, daily struggles that I could not begin to explain, so I am making a plea for prayers. I need all you can request and ask for. I need my body to get in a more “acceptable, consistent quality” that Joey and Gene can count on – at the times they need me the most during each day. That’s all I’ll ask for that. The other, is to pray I live long enough to share how my story could very well be anyone’s story – and how I got out of the dysfunction and began to travel down my own road; slinging a blade to every grass too tall for me to walk over, stopping to build bridges where water was too steep for me to wade through, until finally, I made it out of the woods and can clearly see what I still wish many others I used to walk beside or even behind could see.