Long Time Gone...

Happy Halloween!   

Happy Thanksgiving! 

Merry Christmas!! 

It's been awhile.. Sorry I've been so bad at a keeping up.  A lot has been going on, and I mean ALOT.  History Boy has going up and down and my health is in a spiral so things have just not been going our way for a long time.  I haven't feel up to writing or knowing what to say or how to put a positive spin on it.. Especially after my last blog post.

History Boy was diagnosed with epilepsy back in April.  Getting a handle on that was not easy or fun in any way, but we did and he was fine until school started back up again.

Problem #1:  History Boy is underweight.  So much so now that it is affecting his height.  We had to lower his ADHD meds, which HB is not happy about because he thinks it affects his focus, which it does. BUT we HAVE to catch up his weight.  He is like 14% for weight now.  If a strong wind blows he will fall over.

Problem #2:  History Boy DOES NOT handle stress well. Aspergers or not.  Stress triggers seizures.  Guess how much fun we had in beginning months of school. Oh by the way, school was not much help, as least not nurse, she does not seem to know what an absent seizure is, so when History Boy tells her somethings is wrong she doesn't believe him and he doesn't want to go to school because he isn't feeling well and isn't getting the help he needs. Its a vicious cycle/circle.  I haven't written my nasty letter yet, but I am thinking of it.  I don't want to cut him off from his only avenue of help in school, you know.  Maybe I need to take a BIG pamphlet in to her on absent seizures. (actually I could write several MORE problems involving her but I will stop here)

Problems #3: History Boy has a teacher he does not get along with, a yeller.  History Boy does not handle being yelled at.  He freaks out.  Shrinks inside himself.  Will not respond.  If a teacher hopes to get History Boy to respond with these tactics the picked the wrong kid.  He had 3 seizures in a week because he was afraid to go to this class and be yelled at.  Ok, he wasn't being yelled at all the time, but History Boy just couldn't handle him yelling.  Explaining that sometimes teachers are going to yell didn't work.  My biggest threat to him is "HB, do you want me to start yelling at you?" He usually toes the line.

Problem#3:  I was hospitalized in October for what they believed was a TIA or stroke.  Turns out my body just doesn't like me.  It might be my lupus that did this.  We don't know for sure.  It happened six years ago, for those of you who might remember me being hospitalized with similar symptoms, again possibly my lupus hacking my brain and causing stroke like symptoms.  FUN times.  Although six years ago the recovery was faster.  This time my body is not being as helpful.  6 weeks later I am better, but not BETTER.  I still can't walk on my own without use of walker or leaning on someone or speak clearly without a stutter.  It sucks. 

Problem #4:  The joys of being me.  I have been out so rarely.  I have gone to doctor appts.  I have gone to the store a coupe of times. I went to History Boy's parent teacher conference.  Somewhere in those travels, I picked up mono.  EVER BETTER right?  I had this pain in my left side for about 2 -3 weeks.  I thought maybe I was getting pleurisy which I can get this time of year with my Lupus and I put off going to the doctor.  I dealt with it, until I got a sinus infection to go with it that gave ne such a back headache along with the migraine I already had, I couldn't take it.  So I do have a sinus infection but the tenderness of my spleen leads them to believe I have mono.  Oh JOY, I needed something else to be wrong in time for the holidays.  I am glad I got all my shopping done. (No I really did)  Mostly online.

If you know how to solve my problems, let me know.  I am taking ideas.  LOL

Overwhelmed....

I know this blog is supposed to be about me Overcoming being Overwhelmed but right now, I don't know how to do that,  I am overwhelmed, lost. Going through my days with a smile pasted on my face because that is what I am supposed to do, what I HAVE to do.  History Boy worries himself sick if I am sick and not able to help him with his homework.  Angus thinks I need rest but thinks I should get out more.

I am drowning and I don't know what to do.  Let's teak this med, or this one.  My health sucks but did I have to pass on my sucky genes to my son.  He is only 12 and has so much more to handle than I did.  At least I was 15 when I was diagnosed with Lupus.  At least his doctors seeem rght on top of everything.  If one more of my doc say, let's try this for  months and see what happens.

I am already in pain, I already ache and don't sleep well and they wonder why I might be depressed,  I never wanted to be this sick.  I always wanted to be able to take care of myself.  It sucks that I can't all the time.  This was never supposed to be me.  SO why am I stuck here?  Fightint my own battles while watching my son fight ones just as tough if not harder.

I know I can't give up, but I need to cry.  I am just can't take much more. I really can't.

I hope you all understand this blabbering blob

Love, Teena

It's Going to be OK...

I will jump right in... Some of you know about this and have been more in the loop than others but the past month or so has been very stressful and hectic but HistoryBoy is doing better. He started new medication. It has only been 3 days but he seems to be doing well. The official diagnosis is Generalized Epilepsy. I will know more about that when we go back to the neurologist this coming Thursday. A tutor is going to be coming out from his school to work with him to get him caught up. I think he is probably a week or so behind in work at this point. I have been keeping his up to a point, but only so much has come home.

I will give you a recap...

If you didn't know, this all started just over a month ago. HistoryBoy passed out at school. The school had called me to say he wasn't feeling well and I asked him to try to make it past lunch. They called me back a little later and asked to come and pick him up and said that he had passed out. I took him home and checked him out myself, he seemed okay, he said he hadn't been feeling well so we went home, but he woke up the next morning with and awful headache so I took him to the ER just to be safe. They checked him out, did a CAT scan and found nothing wrong, other than a bump on his head from where he had hit his head on the floor when he passed out. That was a Thursday and Friday.

He is off the Weekend. He goes back to school on Monday and seems fine. Tuesday I get a call that HistoryBoy has passed out again. I was picking him up early for an Dr. appt that day anyway. When I pick him up, he has a black eye forming and a lump on the back of his head. We go to the doc, his psychiatrist. She checks him out. She recommends he gets an EKG, EEG, follows up with Neuro and his pediatrician who we were going to she the next day. I call the ped the next morning. He tells up, go to the ER again. This time the ER are MUCH more thorough. They do blood work, another CAT scan, and an EKG. Fortunately everything there come back good, except that he has a concussion and should not be in school for about a week just to be safe, but follow up with pediatrician and neurologist. (YAY more dr appt)

We go to Ped. turns out along with this concussion HistoryBoy has, he also has 2 horrible ear infections. He probably couldn't feel them because of the headache from the first bump on the head and now with the headache he has now, it would be tough to distinguish though the pain. So toss some antibiotics into the mix and go to the neuro now. Neuro checks him out, does EEG and sleep study and recommends seeing a cardiologist, in there they also tweek his meds and add LOTS of fluids to his diets and some salt to retain fluid and raise his blood pressure. His EKG from the cardiologist was clean, thankfully. :-) The EEG showed that he is having seizures. They recommended a medication that has almost no side effect or interactions with other medications which is perfect for HistoryBoy considering the meds he is already on. We have started the medication. So far so good. I will keep you updated once I know anything more. The sleep study (test) we won't get the results for another week or so. I am hoping they will have them when we go on Thurs but I do not know.

Thank you all for you thoughts and prayers. We appreciate it.

USA Network & Royal Pains, Thank You!

Some of you might be thinking reading this title that I am going to be talking about meeting Mark Feuerstein like I did in in An Amazing Happening (blog on 1/19/12). However, I really wanted to thank then for taking the time to cast a character with Lupus and not make a joke out of it as another medical show I will leave unnamed, where every other patient might have lupus but ultimately doesn't.

For those of you who don't know Royal Pains at all. First of all it is a great show and you are missing out, but that is besides the point. Royal Pains is the story of Dr. Hank Lawson "a young E.R. doctor who, after being wrongly blamed for a patient's death, moves to the Hamptons and becomes the reluctant "doctor for hire" to the rich and famous. When the attractive administrator of the local hospital asks him to treat the town's less fortunate, he finds himself walking the line between doing well for himself and doing good for others." (taken from IMDb)

Tom Cavanagh was seen before on Royal Pains as golfer Jack O'Malley who has Dupuytren's Contrature. Now Jack (Tom Cavanagh) is back and he is back on his game now that Hank helped fix him up. He is just getting a check up from Hank but when his blood work came a little off. Hank runs some more tests. It turns out Jack has been more tired and achy than usual but has been attributing it (incorrectly) to being more active than he was before. It turns out he also has rash on his neck. These symptoms combines with his blood work tell Dr. Hank that Jck has Lupus.

After going over his blood work, Dr. Hank talks to Jack about it. He doesn't gloss over it. He tells hiim it is serious and there is no cure. They do go on in the episode to talk about how his life is not limited, he just needs to be aware and get regular check-ups. He can still be himself live a full life and have Lupus. At the end of the episode we find out that Jack's Lupus is more progressed than they believe and it has started attacking his kidneys.

Thank you USA Network. Thank you Royal Pains. I hope you do not just take the easy way out and gloss over the symptoms and make it more simple than it is. I am looking forward to seeing how you handle this, I truly am. Royal Pains is one of my favorite shows and as after having Lupus myself for over 20 years, and even though I have been luckier than a lot of others, it is great to see you tackling the issue of our "hidden" illness.

Royal Pains airs on USA Network at 10 pm. I highly recommend it!

http://www.usanetwork.com/series/royalpains/

How Well Does Your TiVo Know You??

How many of you get to watch your favorite TV show exactly when it is on? I know I don't always get to. I feel cruddy a lot of the time, so I head to bed early, some nights. So my hubby got me a TiVo which I *LOVE*. It is awesome. If you don't know what I TiVo is, it allows me to record my shows and watch them the next day or day after when I am awake and feeling better.

Now the TiVo has a feature called Suggestions which I turned on to see what it suggests for me and I have come to the conclusion that it does NOT know me at all. Now I love watching TV. But my TiVo doesn't seem tgo realize that my current shows on my TiVo are what I like.

The shows (and channel) I record currently are Glee (FOX), Bones (FOX), Castle (ABC), New Girl (FOX), Once Upon A Time (ABC), Pan Am (ABC), The Mentalist (CBS), Grimm (NBC), Rizzoli & Isles (TNT), The Finder (FOX), Psych (USA), American Horror Story (FX), Leverage (TNT), Burn Notice (USA), White Collar (USA), Royal Pains (USA), In Plain Sight (USA), Covert Affairs (USA) and Suits (USA). I also used to record The Ghost Whisperer (CBS) and Numb3rs (CBS) until they were cancelled. So I think my TiVo should know me pretty well.

I know my tastes seems to be all over the place. I like to think of myself as eclectic rather than weird, ok? But here is the kicker. These are the shows my TiVo gives me to watch as suggestions.

Dirty Jobs (DSC), now don't get me wrong I like Mike Rowe, he looks good in those Wrangler Jeans, AND he has a GREAT voice but I am not so much into the whole rolling in mud, climbing in a sewer pipe. I am not sure what in my shows gave my TiVo such an idea.

ABC Nightly NEWs (ABC), I have never been a news watcher. It drives Angus nuts. He thinks I need to be more abreast of things. I gets my news as highlights on Facebook and Twitter. I know that is awful. But I have always been that way. I see a headline, I will read an article and then I will read more and so on, but I am not a regular news reader. Angus says maybe the TiVo is trying to tell me something. Keep trying TiVo... I will just keep deleting.

The Martha Stewart Show (or something like that), I am not a Martha fan, never have been. I can't put my finger on why. Something about her just rubs me the wrong way. So why would I record her? What in my shows would suggest that I wanted her to be recorded? I think my TiVo needed it *brain* checked.

Modern Marvels (HIS), I can only guess that the TiVo know I have HistoryBoy as a son and is trying to get him to interact with it. That is my only guess. However, the TiVo is in *my* bedroom so HistoryBoy does not get to use it. Why the TiVo wants more usage I don't know. Doesn't it think my shows are enough for it? I think that is 18 or 19 shows right? The USA shows run in rotation they aren't all on at the same time of year so its not recording them all the time but still... more shows? I really do not need more history in my life. I get daily doses in my life FROM HistoryBoy. Don't worry TiVo you don't have to include these ANYMORE.

Hot In Cleveland (TVLand), this show may be funny, but it really isn't my thing. Don't get me wrong Betty White is great, and I like Valerie Bertinelli but I don't think the show is aimed at my demographic or if it is maybe I am just not getting it. It doesn't strike me. So PLEASE stop suggesting it 16 times a day TiVo. I am tired of wasting my space for it.

Dog Bounty Hunter (A&E), um, I might love me some Janet Evanovich and Stephanie Plum, Bounty Hunter novels but Dog? No. Unconditionally, no. Where did the TiVo even get this idea? To me, he just looks nasty, skeevy. He makes my skin crawl just looking at him. I am sorry if you are into him and his show. Just not my thing...

Las Vegas (TNT), Now this is one I can live with. It is in syndication. I used to like it when it was in first run but I didn't get to watch it a lot, so when it records it every once in a while I don't mind. Do you hear than TiVo, STOP recording junk and you can suggest this show more often ok? I won't mind.

These are just of the things my TiVo has given me. I am convinced my TiVo is just trying to irritate me into turning the Suggestions off. LOL. I may give it a little longer. It might give me another blog.

Hope you enjoyed this.

An Amazing Happening

As most of you know, things have not been going so great for HistoryBoy and I.

HistoryBoy is still having issues with school and hates going. I will go more into that again in another bog. He has been on and off sick since Thanksgiving as have I. Actually, my health has been horrid lately. I can't stay healthy for very long. This weather isn't helping. I hate cold weather but the back and forth from warm to cold is actually worse for my health than actual cold weather. UGH! I am still struggling to get on an even keel with good and bad days. I get so frustrated that I don't know what to do or how much more I can handle.

Then I got a sign that things were going to be ok and it cheered me up and took me out of myself for well a day at least.

So here is the amazing event for you.

USA Network (@USA_Network) had a Twitter contest for their TV show Royal Pains (@RoyalPains_USA) and if you Twittered and Re-tweeted #MeetMark you could win the chance to be first in line to meet Mark Feuerstein in NYC at a book signing. Well guess what folks, yours truly was chosen!! ME!!

*I* got to me the handsome, warm, friendly and charming Mark Feuerstein at a book signing of the book "Sick Rich" for the Royal Pains book series at the NBC Exprience Store in NYC yesterday. My wonderful hubby, Angus, as we all know his as here took off from work to be able to drive me because I can't drive myself.

I arrived at the store the event coordinator took pics of me. First with the publicity poster. Then with my hubby in the store. Once Mark arrive at the event, I was escorted to the front of the line where he came over and I was introduced to him as the contest winner and he gave be a big hug! I was in awe. I got to talk to him for a couple of minutes and I fund out he went to Princeton. So not only is he great looking but also smart and from my area! Triple Threat! Watch out Angus! LOL!

He signed a book for me and one for History boy. Mine says Congrats! Love, Mark Feuerstein and HistoryBoy's (who couldn't go because he had school and after-school activities) says To Matt, my #1 & 1/2 fan <3 Mark Feuerstein. HistoryBoy was ABSOLUTELY thrilled! We bought his a t-shirt as well and he wore it to school today.

All in all it was an awesome day. (I should say morning as this took place at 11am) We were back at Angus' parents by 1 and I was taking my nap shortly thereafter... so sad I know. Such is my life as we know it. I wouldn't trade it though. I needed a day like that to remind me that I can still *have* days like that, well maybe not exactly like that all the time, but you know what I mean.

Thank you to: USA Network ( http://www.usanetwork.com/ or @USA_Network) , Royal Pains (http://www.usanetwork.com/series/royalpains/ or @RoyalPains_USA) and Mark Feuerstein for helping me to remember me. I needed that. You will never truly know how much.

PS: Thanks to you too Angus! I love more than I love chocolate!

Check out these cool Twitter links to the pics and a cool video of me from the event!!

1. Royal Pains @RoyalPains_USA

@ChristinaMiles came to score her 1st spot in line to #MeetMark! She's excited to meet Dr. Hank.. yfrog.com/h4xfqvdj

2. Royal Pains @RoyalPains_USA

#MeetMark winner @ChristinaMiles is thrilled! yfrog.com/obqb5tj

3. Royal Pains @RoyalPains_USA

twitvid.com/7YLLX - #RoyalPains superfan & winner @ChristinaMiles was elated to meet Dr. Hank @NBC store. Check out her experience:

Watching My Son Shut Down Pt 2

I am at my wits end. Angus and I do not know what to do. I have asked, joked, pleaded, yelled. Nothing gets through to HistoryBoy. He is pulling further and further away from school. Something is pushing his away. He loves school, or has loved school. I am not saying he will always love to learn but it isn't something that just shuts off like a switch. Something has to make you not want to be there.

I was out of ideas... I decided to approach HistoryBoy karate instructor, Yoda, and ask for his intervention. His is all about helping the whole child and if anyone could get through to him, I figured Yoda could. He took HistoryBoy aside before class and they were in his office for quite a while (class started without them). When they came out HistoryBoy was smiling and Yoda nodded at me and HistoryBoy came over to me and hugged me and a story poured out of him. It was not a complete story but I was grateful for the pieces he was able to tell me.

After class, I thanked Yoda for his help. He said HistoryBoy was going to be just fine. When we went home. I talked to HistoryBoy some more to get more details from him. Apparently, he was being bullied in school and on the bus by 1 student in particular. The student called him names and would hit him. This went on every day. I reported it.

The bus was easy. I got witnesses. Thankfully HistoryBoy has friends on the bus.

The classroom is tougher. The teacher doesn't believe the other child is mean to HistoryBoy in the classroom. I do not want to be rude to her and smack her upside her head but if he is verbally and physically abusive in one realm, what is to stop him in another when her back is turned?

HistoryBoy is still dealing with this. He is still not 100% happy going to school. His innocence/ security was stolen. How do you get that back once it is taken? He used to believe school was awesome and great. Now he is afraid of it. I am trying to put the wonder and excitement back into learning for him. I am not letting my AMAZING son slip through the cracks. He is too special for that.

Watching My Son Shut Down

You know something is off. You can tell. You child is telling you by the little tics and tells he has even if he isn't telling you but he won't tell you. THAT is the problem. I can't fix what I don't know.

HistoryBoy doesn't like riding the bus to school. Last year I understood, it was a long bus ride, 40 min to school when the school was basically across the street from me, less than a 5 min drive in my car. This year is maybe a 15 min bus ride and he still fights it. I have let it go most of the time and pick my battles as it were. But it got to the point where he was calling to say he missed the bus and needed me to pick him up.

Then there were the meltdowns, almost daily before school. My child who loved going to school, loves to learn suddenly absolutely refused to get ready to get up and get ready to go to school. He would feign sickness and when that didn't work he was tired. When that didn't work it was an all out screaming, shrieking, head banging meltdown like I haven't seen in years.

I had to walk away. HistoryBoy may only be 4'9" and 70 lbs but I am no longer able to contain him as I did when he was 4 or 5 or 6 and had one of these fits which I think is the last time I really saw one where I would have had to contain it to any extreme. He is stronger than me in this mode. He can hit, kick, bite and I am unfortunately just not physically capable of handling him in that mode. I had to let him wind down. It took approximately 20 minutes I think. My neighbors probably thought I was murdering him.

When he was calm, I told him it was time to go, and he got up to come with me. At this point we are late for school. He dresses and we leave. We get to school and the procedure begins again. Some days it is a mini-meltdown, not a tantrum, but a crying, why am I making him go to school? Don't I want to spend time with him? I am being so mean. Or I get the silent treatment but he will still not get out of the car. It still takes another 20 minutes. He is now at least 20 minutes late for school. This is the pattern for a month or more.

I am at my wits end. I talk to his teachers. I talk to his case worker. No one comes up with anything. I am getting NOTHING out of HISTORYBOY. He is clearly losing his noodle and I am clearly going to lose mine!!

Something had to be done!

Part 2 tomorrow

You Thought I Disappeared

I bet you thought I was gone. Maybe I was. Maybe I agreed with you. I have been sick on and off. HistoryBoy and I received a WALLOP of an illness at Thanksgiving that hung in there for quite a while and we were doing out best imitation of people for few weeks even though we felt like zombies.

I got the suckier end of the stick because I had no voice for most of that time. I couldn't get people to get me things without banging on walls or stamping my feet, or screeching so it sounded like fingernails on a chalkboard. All pleasant sounds, yes? I got HistoryBoy back in school and I was still sick and feeling yucky. Thankfully Christmas shopping was mostly done at Thanksgiving! Go ME!

This is the time of year where my body fights to stay healthy. There are so many germs flying around. I got my flu shot and my pneumonia shot, but there is not shot against a common cold or that nasty stomach bug or this horrid cough that hangs on and on or my laryngitis that only *just* seemed to go away but some mornings my voice still seems scratchy.

Maybe for a first blog back in 2 months I seem whiny, sorry about that. There has been ALOT more going on. I will go more into. I have alot more to say...AS ALWAYS. Sometimes you can't get me to shut up!

Talk to you tomorrow