Comments on my immune system, the last 6 weeks or so+, catching up & other mouth drainage!

Hey guys! I'm back to life!

I have been thinking of so many, many of you; especially those of ya'll that live in MS, LA, FL & TX coasts (i.e., in the wake of the recent Hurricanes) and have sent good thoughts your way!

Some short comments to my above Blog title. It has taken me over a week just to get this to save and publish on Blogger, so please forgive some of the off day info! I find this is the best way to get back into the blog world right now! I hope the jumping back and forth and novel-length will not send my readers wanting to pull their hair out:

• I have just been put on self-injectable Embrel (IP injection for ya'll seasoned medical readers/once a week).
• Had to wait to start Embrel after a 3 week period where I had to have 3 of 3 wisdom teeth removed (#4 never was)
• Nearing the end of above mentioned 3 week period; I busted my a$ getting my house ready for Joey's 6-year BDay party (which would also mean, Happy Belated BDays to Luke E. and Zoe W.!!!) As a side: I will never feel quite as close to any females as I did when we all went through pregnancy together (the aforementioned children's Moms). We were all pregnant and serving on the MSMS Board at the same time. I was having my first, Alice her 2nd, and Cindy her 3rd. How we got through those days - I don't know - but every year around Joey's BDay, I always think of Cindy and Alice! Our children's birth orders did not turn out the way we expected, huh?!
• Then, the night of my son's BDay party (which was on the day after the 15th), my 3 God-children, part of a family of 5, came to stay that night! It was a great time! Man is it always nice to be able to sit with someone in trust and share joys, ideas, issues, sadness, happiness, love, and even criticism (mainly, I ask for the criticism due to the 3 years I went through a period where my long term memory went to hell. It was from the near multi-system failure I went through somewhat after my hysterectomy -which caused a full-on ablation operation on every major organ the surgeons could see in my abdomen while open bec/ of my ovarian cyst/ball and endometriosis that came back with a vengeance after Joey was born, etc. etc - long story.)
• I really had begun to miss my old self after so long I was certain to be unlike my old me ever again. I had mourned the lost of that person; feared that part of me would never return. After working my mind out like a jarhead, I am pleased to feeling closer to my old self; even looking more like my old self - just more wrinkles and an excess of 15-ish prednisone pounds brought on this summer. :) Real friends can bring about the best feelings in the world!
• Parenting goofs, joys, and woes are fun to share with other parents that share the parent to parent equality when complaints and advice go back and forth. Of course, I can't always hear well and may have to ask for repeat info; but with patient friends - it is always a welcome. Especially from this particular parent that has a 14 & 3/4 yr. old girl, 8 yr-old boy with autism, and 7-year old boy. She is an angel to me and is one of my oldest true friends next to my precious MSMS friends. Even though she grew up around all girls as the big half-sister; all while being in a family full of women, she welcomes the "boy" advice - which is less than what she is able to offer over-all! :) Still, it's nice to be part of the conversation. I guess once I begin to bring up a new idea, she is quick to realize where I am going with my "what ifs"! ha ha She, like many, makes me feel like a major slacker. She home schools. She's (finally) found her male soul-mate and is engaged! Her life is NOW getting somewhere after losing everything to "Katrina". She's my hero in many ways.
• Why she claims I am her Hero, I honestly don't know. To be honest, she is probably the only person that was 'there' with me after I had to leave MSMS. She has watched how ugly things could get for me and was not run off by any of it. She's just a true friend. Her kids feel like extensions of me. They are my blessed God-children and any time or resources I can give them feel like a privilege for me. This past visit, I was excited to finally give the ol' Saturn (that still looks & runs like a top!) for my God-daughter to have eventually as her vehicle this December as a permit driver! It was almost sad to see the Saturn go, but when the time came; it felt good to do! I had some good times and visited some great people/friends in that Saturn. I only hope it is filled with even better memories for 'Aunt Lolly's' family.
• After talking about my parenting struggles with Lolly, I felt better as she could see descriptive woes I feel regarding times Joey is not motivated on school days that are the "repeat" unit information and having to work tirelessly on some-type of life lesson that ties to a book from the school library at his reading level as "a part-time home schooled" project, mainly since our public schools have no early programs for children younger than 3^rd or 4^th grade, is so time consuming for me – as well as tiring at times. It made my heart feel better and my nothing-more-than-a parent with simply an outside perspective trying to offer another point of view out of love helped me a lot. I am proud of Joey's full 1.9-2.9 reading level (to the end of 2nd grade; while only just starting the 1st). At first his teacher wanted to try putting him in a 2nd grade class just for reading. My response was, "UGH - NO"! ha ha I have concerns for him staying up to speed (which really means slightly ahead due to age) with his maturity for the 1st grade. He has caught up to date, but at his young age, certainly no ahead child - but I guess really well for a boy that is an offspring of mine! ;)
• After a weekend of me joking about the differences between boys and girls and how that carries into adulthood (while we all swam in my bar-tended alcohol! woo hoo) made for a barrel of laughs I needed to have!
• School started for Joey, first by a staggered entry day where I was contacted by the teacher immediately that evening. I'm thinking, what did my overly type-A child do?!!! I'll get to that in a minute... (At home, we have to keep things SO laid back so he will stop and breathe!)
• Since working with Joey on how to be a "good citizen" crusade this summer; I thought, "Surely on the fake day of school he did not regress..."! Only to find just the opposite! At the end of Joey's K year, they took the top 25 of 235 students and did an AR test. Joey tested almost through the 2nd grade. Talk of him skipping 1st grade reading was brought up only for me to veto the idea due to his young age and immaturity concerns. It turned out, during the first fake day of 1st grade, he read through both reading textbooks and the teacher wanted to suggest some alternatives.
• Right now, I want to be sure he knows what a subject, predicate; noun, pronoun, verb, and other proper punctuation/sentence choices are before he goes into 2nd grade, JUST for the X number of time for reading and homework assignments. That way, I am sure he isn't being sent out of the classroom without knowing key reading information. He's already got it and it's after a week of school. However, this teacher is really big on the Boys Town Social Skills. Her whole class must learn each and every one of the skills the first semester with her, whether they are "Boy" or "Girl". A side note, I LOVE this website and recommend it to anyone trying to find straight forward, logical ways to teach your boys how to socialize with more decency!
• Trying to socialize a boy can be difficult; as many do not miss subtle changes in their environment alone, yet tolerate too many B.S. stories for too long without losing trust in who ever is trying to paint the rosy-picture of bi-passed answers to their questions. Most boys are what-you-see-is-what-you-get and expect more of a return explanation after they’ve reached a certain age. I cannot think of any major lie I’ve given to Joey once the veil lifted; only try to give him the best age-appropriate answer for the question(s) and try not to help him figure out enough to ask another one! My biggest lesson: Keep it short. If I try to explain things in too much detail, I just lose his interest and his patience with me for the homework period! When I need him to do something, I’ve learned the command prompt should be a motherly tone, but much quicker of similar responses to Gene’s questions/comments. If it is snack time and then homework is to be done, with another task after that, I must say very simply, “Snack, homework! You’ll be homework busy until 4pm. Four is if no goofing or complaining happen, then you should be done”. Any major diversions, I have to quickly let him know how much more of his afternoon time is slipping by. “Play time may have to wait until after dinner”. It is amazing how this simple communication can help him in his newly formed self-management skills we help police him for. By getting beyond straight to the point, he becomes more agreeable with1 - 6 pages of homework and at least 1 book (sometimes 2) to read! Now, when I was in 1^st grade, I do not even remember homework!
• Naturally, now with the "no child left behind act" & it’s effect on our came about; even just the above-average school kid, according all major genres of education, report how these students, getting proportionally worse with increased aptitude, show they are not even motivated to want to do anything for themselves. They have had their ‘work’ handed to them, their parents unaware I do not want someone with his gift to be a lazy or unmotivated when he becomes an adult, but at the same time, he MUST know how to fit into society - it is one of the many reason's this child is in public school.
• It was hard after taking cupcakes to his class for his BDay only to see his model student behavior and also his disinterest in participating in things he already knows, but only doing what he has to for the A grade.
• Last year, he graduated with straight 100's. He loved it. Now, I am noticing less interest in certain types of homework and have finally been able to recruit Dad into this area to help. Thank God! Gene has always wanted to know everything as close to detail as possible when it comes to Joey's day and school-work. Now, he is more involved and he is a great at the things I could use his line of thinking on. He has also taken on a variety of things in the house to show Joey that men can do housework, too, especially when Mom needs a little help! :) We've weathered 17+ years now, and I am never short of examples why we belong together and why he is my soul-mate. Aww....I love my boys, especially my Man!
• Naturally, nothing is always a bed of rose petals! Take marriage for example: Marriage is like planting a garden sometimes...it needs weeding, watering, proper light, soil (i.e., conditions) and before it ever gets going it has to be planted! After the growth, there is the reaping and the period where the vines die off to be pulled and the electric fence to be taken down. Once this happens, one may find ant hills occasionally take growth. Those years need more treatments. The years they don't take up after reaping, you merrily move into winter and snuggle up. I'm enjoying snuggling up and have more years than not. It was hard after coming here for Gene's family and hard for him to see that many weren't the parental/family units he thought he had. It was such a blow to each of us differently.
• Now after also struggling for almost the same amount of time that we have been back here, I have finally been put on (after going through a long on and off of other many things for 'potential SLE or RA') Embrel for RA and have finally seen enough of a difference that I want to STAY here, now, finally.

• Now, to curl up and watch Project Runway...

I have missed you all and look forward to speaking/emailing back with you all again!

I hate I have been off the blog grid, so to speak, but am making attempts to improve.

Yours, Suz

In Starkville for week

Hey guys! Not reachable by email this week: Will be at our Starkville house doing finishing touches for next rentors. If you need anything, please feel free to text my cell number or call it. It is the one that ends in 9970!
Happy Fourth of July!
Prayers needed for recent Crohn's flare trouble and severity.
You guys are always in my thoughts! Give us a call if you are planning anything near Starkville over the next week! We were thinking of trying to make it to Geyser Falls Wed. Time for gut to heal a little more will tell.
Joey will hopefully be getting to ride his bike on MSU campus this week and is SOO looking forward to it!
Must get on the road!
-S

Joey's spring school picture:

Destined Mother for a Boy

I'm pretty sure I would not make a great Mom for a girl. I was never really like most girls and really am not into the whole "girl thing" so to speak. Therefore, I think that is why God placed so many men in my life. I can understand a boy from the time they are small to the time they are grown and then some. I was closest to my father. My closest friends growing up were boys. My closest adult friends, however, has finally shifted towards females, though I find I prefer to be friends with their spouse at minimum, or I am not comfortable. Maybe it is because I am now a Mother of a boy and I KNOW without a doubt, how they think. I grew up with a brother VERY close in age. I grew up with Gene after I "left" home for college. I could go on. Then, there is the plight of Motherhood itself. A treasure and yet, some other strange things mixed in. Sometimes it mixes my brain up and nothing comes out of my mouth right. Sometimes it heals every wound and I can feel like Yoda himself. Strange job, this one is. Simply reading this blog should demonstrate what I mean:

Muddle-Mother Power Activate! (it's sort of like a Superpower, but winds up sucking the life out of you, instead, on those hair-ripping days! It is all relative and proportional, of course!). he he

I often think I have a name for a new blog - Mother Muddles or maybe, Muddle Mothers - By day, fighting germs, the school systems, pathogens, teaching life skills, and many, many more things/ by night, making attempts a frequent as possible to keep your man happy and your family in harmony!

There are nights before the lights go down, you slip off your robe to show your spouse your recent "night-gown" you've been waiting for the right night to pull out off it's hanger....and you gently slip into your side of the bed - it's OH So warm and inviting to be in bed and off your feet, your brain begins to slow from thinking beyond the multitude of those that want your 24/7 attention....you look over at the love of your life...you both exchange those bedtime-eyes (you know, the exchange that has been replaced by what was used to give each other the bedroom-eyes, on the nightly basis?)...and you reach to turn off the light after you've kissed your man before he gets one last look at you in your classier version of the sleep cloths you'd normally wear. The lights go out. Both of you hug up to one another...you kiss one another...then, "goodnight Baby" barely makes it out of both of your mouths before you each fall deeply asleep (that is, until the next day, where our early morning riser child will bring on new “I must get out all my toys and anything else up for grabs” fiasco occurs.) Thank God my boy is sweet to his Mother and is getting rather independent about putting his things back up!

We have a “rule” for Joey for Saturday and Sunday mornings, if you will get up on your own and play for a few minutes while one of us tries to get out of bed, have coffee, and then slam on the couch to be in the room with you until we wake up enough to actually play and do things together – you can get out any toys you want – and the “rule” where you put up what you were playing with before getting the next thing out – is suspended. This works like a charm. These toys then get picked up after the end of the weekend (with the exception of a few in the way)

I’ve learned a lot since the days of growing up around all boys in one town we lived in, as well as growing up with a slightly older brother, in addition to being committed to the same man for ~17 years: all boys are alike – their age has little to do with their basic needs.

The older they get, the more expensive their toys. Once they have one toy, they immediately think of the next thing they want. They need a woman with a big heart to cheer them on and explain how the world is. They need lots of hugs and praise when they do well. They need to KNOW when they have REALLY screwed up so they do not repeat said screw-up, but do not need to be told in a speech or by being yelled at – this upsets the male brain. They do not liked to be yelled at in anger or spoken rudely to, unless you want to expect this same behavior back from them. Let them enjoy playing WHATEVER THEY WANT for a decent amount of time to wind down when they have had it up to their ears with too much work/school. Always make sure a good snack is around. Always be around to give a hug or simply offer consolation/encouragement/kind words/hugs. When they are bored, give them something fun and new to do or take them to do something fun and new or tell them a funny story. Change their routine very little. Dress them nicely, cheer them on, criticize very little. Do not encourage bad behavior; even allow them to know you are “disappointed” in said behavior, but do not nag. My struggle: don’t over talk. Get straight too the point when making one. Ask questions, but do not ask 20 questions. Be specific. Sympathize with their response to the question, no matter what it is to get them to talk more. They are simple creatures that love organization, but not necessarily neatness. They need to know where all their THINGS are and if THINGS are moved, they must be in-serviced on such. Let them know where you stand on almost anything and what you expect from them. Tell them every morning and every night you love them, ‘no matter what’. Try to have a room just for them and their playtime. Respect their space so they will respect yours when you need it. Keep them close by and watch carefully if suddenly things get quiet and you know they aren’t occupied. This means they have either wondered off, fallen asleep, or are about to get into trouble! Give first and then you will get – no matter how long it takes before you see the receiving end!

Uhh (sigh) - another day for Muddling through Motherhood until tomorrow!

Suz!

Just some pictures...

Everybody has been so cool at taking pictures of their places and I realized: "We built this house (and still have some outside things to finish, i.e., driveway, landscaping, etc.) not even 2 years ago"!
SO, I guess I'll attempt to add some pictures....

Picture of the house from part of the front yard, with Purple Martin house in view. Yes, the Saturn is still with us...

House from the front, not a real close-up, but close enough to see the wrap-around porch. There is one one the back that doesn't wrap, just is across the back. The upstairs balcony goes inside to either Joey's room or Gene's office.

House from the side the driveway and parking (that will be extended to the back of the house so we can walk groceries right into the back door that goes into the kitchen. The double window on this side is to the kitchen. Part of the back porch is visible.

Where the garden grows in the summer.


Looking on towards one of the "sides" of the front yard.


Another side yard - the tree ahead is Joey's tree. Has his swings, etc. on it. :)

Looking from the kitchen in to the "Great Room" (as called by the original design). This view kind of captures the part of the room that includes the stairs to the upstairs.

Looking down into the Great Room, which includes bay-window seating for breakfast/informal dining, part of the kitchen that includes the island with bar stools, and the area we sit to watch T.V. The sofas are really one big sectional put in a little different. It has about 4 configurations depending on your living space. It's chocolate brown, not black! I hope it isn't showing black! Let's face it, Gene has all the photography skills in the family...

OK, I'm tired, so this concludes the first part of the tour of the Hellums' house. As you can tell, it is definitely more Farmhouse than anything. Those wood floors are special to us, too. Gene laid every single board by hand and nailed each one. If it weren't for our experience with "fixing up" houses, building a new one would have been more difficult for us.

Miss hearing from ya'll! I'll have to get around to checking blogs someday soon. Haven't had time after doing my own posts! I'm so SLOW!

Turtle

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