Lupus Still Sucks...

We all know Lupus sucks but it's really sucks when you realize that I am back at my pre-pandemic health, which means I pick up EVERYTHING. During the pandemic, I found that I could be "healthy" if I didn't have contact with people. I didn't come down with any contagious bugs for 2 years. I did get sick with pancreatitis and a sinus infection from my allergies but that is expected,  sort of... but that's another story... 

Historically,  I am sick a lot, as most people with Lupus are but it is *always* worse in the fall/winter. I used to fight to stay healthy for as long as I could because I found that if I got sick before Halloween,  I wouldn't be healthy again until April. I can't pick up a bug too early in the fall season otherwise my immune system doesn't have it in it to fight off any of the tougher bugs that come around once winter is in full swing. If I can "hold out" and not get sick until after Thanksgiving. I generally will be healthier that winter season... However,  this year, I am sick and have been sick since Halloween.  🤧 

I will say it may be kinda my fault I got sick since I haven't been as careful and wearing a mask in public, like I planned... but I've been relatively healthy (for someone with Lupus,  Fibro and EBV) so I thought I'd be ok. I went out to see a play on Friday before Halloween, and then we saw Rocky Horror on Saturday that same weekend. We had a lot of fun but a few days later, we (me, angus and historyboy) all came down with stomach bugs, which they got over much quicker. Angus threw up once and was better 2 days later. HistoryBoy only had the intestinal end of it and again was better in 2 days...

For me, that stomach bug triggered pancreatitis. Two weeks later, I was feeling a little better. I hadn't been out since I had gotten sick so I went with Angus to take HistoryBoy to eye doc and then we grabbed Starbucks on the way home. I managed to pick up a URI (upper respiratory infection) in that short trip which I had for a week before the guys picked it up from *me* AND they were only sick for a few days. The URI for me triggered pluerisy. 

Realize, at this point,  I am not completely over the pancreatitis, I'm still on a modified diet and have to be careful of what I eat but I'm getting better. The pluerisy was awful. I haven't had it in about 10 years.  Now I have to try to differentiate between yhe pain in my side from pancreatitis and the pain from pluerisy, as my doc wants updates on how in feeling. Then, as I was getting better from all of this, I've got the stupid URI back. 😭 The guys having gotten over the URI fairly quickly, shared those stupid germs back with me, and I am down with it again, stuffy head, headache, post nasal drip, stuffy ears and ear pain. It will probably be another week before it is gone. #LupusSucks 

I will close by saying that winter is the worst with Lupus, for me. Sadly I was at my healthiest during the pandemic when I had no contact with anyone. I didn't pick up any bugs. It was wonderful to an extent. I have never known being healthy like that since I was 15... I will say what we all know #LupusSucks

Thanks for listening 

Leave a comment or send me a message 

Trying to Get Healthy...

So I've been sick for quite a few weeks now... I didn't go to doc originally until it was day 5 or day 6 of being sick because I knew if it was a virus they wouldn't do anything other than what I could do for myself...

I had ear pain by time I went so I knew it wasnt just a virus anymore. URI and ear infection. Yay me. Given 5 days of abx. They  didn't work well enough so I end up sicker and back at doc now with URI still running rampant and infection in my other ear and an awful cough... 

Given stronger abx and steroids (medrol dose pack) this time. I didn't notice any impact first day. I was hoping steroids would jump start my energy a little, day 2 still not feeling it, day 3 I wake up with a little energy, enough that I load dishwasher and start it, start a load of laundry AND change sheets on my bed to get rid of germs. Then I ran out of steam and crashed... Day 4 I woke up tired. I can feel that the daily dose of steroids is decreasing as the energy level isn't what it was but since I was feeling a little better, hubby decided to take me out to lunch since I haven't been out of the house (except for Doc appts and pharmacy pickups) and he's is going on travel for 3 weeks, so he wanted a date day. I enjoyed our lunch (PS: Nan Xiang Xiao Long Bao in Cherry Hill, NJ is AWESOME, I highly recommend it) but I was so wiped when I got home that I couldn't sleep, my body was so achy, I couldn't get comfortable and as it was too early to take my nighttime meds so I have just rested in bed until now when I can take my meds and get the rest my body so desperately needs right now. 🙏🙏 for a restful, restorative sleep... 

The Day After Super Bowl 2023

#LupusSucks we know that, but today I feel it. I didn't do anything extreme yesterday. We ended up staying home because hubby is sick but I stayed up "late" not in my bed to watch #SuperBowl2023. If I am up "late," I am usually in my bed watching the tv or reading there so my body is screaming at me that I shouldn't get out of bed today. I didn't even want to get out of bed to use bathroom (I did), but I haven't made it to kitchen yet to get something to eat and my body wants that too... 

Not to be left out, my Fibro and Reynauds is joining in. My ribcage doesn't even want to be touching the bed that my body so desperately wants to stay laying down in and my hands cannot get warm. I am going to be wearing gloves today I think... a hot bath may help but right now that would take too much energy to accomplish... could be my EBV adding to this fun mix as well. It's going to a a fun day... 

I have no "spoons" to even begin today, let alone get through it. I know I haven't had much in reserves at all lately but this is the worst it has been in a while. Sadly, I can't even turn the TV on right now as I do not see the remote and do not have the energy to look for it. I am trying to get some energy to be able to get something to eat in a little but it may take longer than I think...

As I said #LupusSucks but #FibroSucks #ReynaudsSucks and #EBVSucks too. 

#LifeWithLupus 

#LupusAwareness

 #NotAllDisabilitiesAreVisible

Pushing Myself

I've mentioned before how I try not to push myself too much because there are real life consequences to my health when I do but...

Yesterday, I did some straightening, and a little exercise and wiped myself out. I crashed and fell asleep but I was woken up several times, once by phone, once by our dogs to be let outside so my nap wasn't as long or as restful as I needed it to be, especially given as we had plans for the evening. 

When I got up from my nap, my headache was only marginally better, but it was enough better that I thought I would be okay... That is probably a lie... I could feel I was pushing myself BUT HistoryBoy was performing and I wasn't going to miss it. (I haven't mentioned his performing on the blog before but I'll write a post about it later to update you). HistoryBoy can tell I am not 100% and told me I could stay home and Angus would take care of everything, but the only performances I've missed is when I've been on the hospital and I don't want to miss this one.  

Well, maybe I should have, but it's too late now to go back and change. So what happened? On my way to the event, I got car sick. NOTE: It's was only a 10 minute car ride, but I was so nauseous when I got there, I had to get out of the car and breathe fresh air hoping I wouldn't actually throw up. I got a water to drink, and sat down and started to feel a little better but as time went on, that headache tightened like a screw on my head, and my neck muscles kept getting tighter and tighter, until I knew it wasn't a regular headache anymore but a migraine. I lasted through HistoryBoy's performance but I had to leave after, which I felt bad about but couldn't help. I needed to lay down and I was really hoping not to get sick. 

We went home and I went right to bed. HistoryBoy got me my migraine meds, a glass of water and an ice pack. I just closed my eyes, hoping the pain and nausea would subside. It got a little better, enough that I felt could enough to get up and use bathroom and then decided to take a bath and get ready for bed. Well bath felt amazing at first. My still muscles started to relax and I was simply resting with my eyes closed when I felt my stomach lurch. I'm looking around the bathroom, and I knew I didn't have energy or time to jump out so I grabbed waste basket and called for Angus... 

After my stomach calmed, Angus helped me into pajamas and back into bed and as I lay here now, just 10 or so hours later, my body still feels wiped out. My head, while not quite a headache, has that after migraine feeling which means I can't push myself an inch today or I will be very ill, and my ears are ringing, which happens to me with/after a migraine. 

Was it worth it? Would I do it again? Yes, I got to see HistoryBoy perform, which makes me happy and so proud, but I'm done in now probably for several days while my body catches up. #LupusSucks 

What Is Normal?

Someone asked me recently what is my normal? ... and in trying to figure it out, I realized that over 2/3 of my life at this point has been living with Lupus. 

That isn't a complaint; it is just a statement of fact. I was 15 when I was diagnosed with Lupus. I'm 46 now. I don't really remember what it was like to not have Lupus, and that's not saying I don't remember my childhood. I do, but I don't remember the feeling of being healthy. I did well managing my lupus for a lot of years, I had more ups than downs until about 20 years ago. And while I wouldn't trade my son for anything, I've never been as healthy since as I was before I had him. I sort of think of it as the sands of an hourglass. You don't notice the loss of a few grains of sand over a short period of time, but the cumulative effect when I look back is very noticeable. 

I'm not sure what my normal is anymore. If I figure it out, I'll let you know.

PS: This is my first post on about 5 years. I'm sorry for disappearing but life... and my health has been very up and down so the blog slipped into the background.  I will be posting more often going forward,  hopefully.  

Life Gets In The Way...

Someone recently asked me why I haven't been writing more often or regularly like I used to.  I love writing (I know strange for my Math brain but I also love to draw and paint so chalk it up to my left-handedness LOL) I told them I just had had so much going on that there were not enough hours in the day to get it all done so something had to give. The person understood and said to me "Life Happens". 

That's exactly true.  This past two year has been a series of ups and downs and it always seems like I am playing catch-up.  Either I've been sick or History Boy has.  Somewhere in the midst of that, we also moved.  We searched for it, packed up our old one, and unpacked the new one. It took forever (I think I still have boxes!  Actually I know I do!) I could only look at houses on days I felt ok, and I couldn't do a lot in a trip, 2 houses maybe... So that made the process longer. Angus was still working 2 hours away and commuting back and forth, so we had to work his schedule into that too.  It meant the packing fell to me and my mom who helped me tremendously.  I would never have gotten as much done as I did without her.  I can't carry boxes, or pick up anything that weighs anything at all.  She lifted and carried and whatever she couldn't had to wait to Angus or my brother.



In the past two years, I was hospitalized, unable to talk or walk. Nope not a stroke, just my lupus having fun with me. History Boy was diagnosed with Epilepsy, and each time it seemed to be under control, he grew, and outgrew the dose of his medication and had seizures again. Have a mentioned he has grown almost 6 inches since November last year? He's taller than me now, and happy about it. LOL.

Each time I had something to say and wanted to blog about it, i was either too sick, too tired, or both.  It got pushed aside because I had to concentrate on me, and what my body needed to get healthy and having History Boy sick didn't help.  Can you really rest when your child is sick?

Also, in the past year, History Boy had surgery on his sinuses.  We decided enough was enough and he had just been sick too often for too long and we needed to do something about it. He had one sinus infection since the surgery, and a virus after that, but he hasn't been consistently sick like he has been for the past few years with infection after infection...

I don't know how some others do it, how they keep up, blog everyday and keep life on track, handle a child like History boy and keep him on track as well. How do they do it?  How do you do it?  I feel I am always behind an 8 ball, always trying to catch up.  Life feels like it is passing me by and I don't have the time or energy to keep up.

Laundry builds up, dishes build up, cleaning builds up. I push myself to try to get through as much as I can and find that I am overwhelmed.  Where do I start?  Someone said to me to do a load a day and it won't back up.  Easy enough to say, but when some days I can't even carry the basket of clothes into the laundry room because I hurt so bad, and it feels so heavy.  I know it isn't, I know it is my arms and back that are objecting.  Another said I should work out more, being in shape would help.  Very true, exercise does help me, but I can't overdo on that because I will end up more sore than I am and unable to do what I already do. Swimming and aqua therapy are the only exercise I am truly able to do and that is because I can work out a little and walk in the pool track without straining and feeling the weight on my body.

Please I am not trying to complain, or bitch at the ones who are offering advice, who are truly trying to help. I'm just telling you how life is, why I'm not here as much as I'd like and I hope you understand.

(PS: I am trying to write more, hence my Blog REBOOT!)

Reason Why I Feel Rotten...

So I know why I have been feeling so crappy, it turns out I have pleurisy. If you don't know what that is, it's inflammation of the lining of the lungs. It's painful and draining. It hurts to breathe but it's not a good idea to shallow breathe because that can cause aeroli can collapse leading to bigger problems. I kinda figured this was what it was on Sunday when all I wanted to do was lie down but it hurt to do even that, so I took meds to knock myself out..

I've been lucky, this is the first time in 4 years I've had it. I used to get it every winter, starting in Winter 96. I remember because it was Christmas time and I worked at Macy's at the time. Then I had bronchitis as well. Oh my god, it was awful. Imagine having to cough all the time, and having your chest burn everytime you do, ah fun times.  At least this time, no bronchitis. Cure, wait it out, and take steroids to reduce inflammation. It's not contagious in itself but if a virus caused it, that could be contagious. So I am in bed, resting, eating if I feel up to it, and drinking lots of fluids. I am also taking Aleve, which has seemed to help more than ibuprofen for the pain.

I've made it this far through the winter, and this is my first knock-down, drag-out sickness. That's pretty good for me. I mean I've had sinus infections and sore throats but I was still semi-functional. Right now, I think I am at zero function. So off to bed I go. 

Until tomorrow...

Day 3, 4 & 5 ~ AF Diet

My body is still adjusting to these food changes and while I didn't think it would be THAT big a deal, my body says it's a HUGE deal.  My stomach is not the only this bugging me now but my intestines have joined the party... Does/Has anyone else have/had these problems when changing their diets to Gluten Free? If I MAKE something I am going to put the recipe on here if you want to try it too!

Day 3:  (Friday, January 3, 2014)

Breakfast:  I decided to try the Apple Cinnamon Chex, which I really liked, but I used Almond Milk with them and I was not crazy about the combination. Live and learn...

Lunch:  I decided I needed to start making some foods.  I LOVE tomato soup and there are none I could find in ShopRite that were Gluten Free.  I found one can of vegetarian vegetable that was gluten free but it seemed EVERY other type had some form of Gluten in it... SO I made Gluten Free Tomato Soup.  The recipe was easy!  It was a little bland so I ended up using double the amount of Italian Seasoning added some garlic too.  Angus loved it and he doesn't like Tomato Soup.  So score one for me!

For a lunch dessert I made Apple Fritters.  I changed the recipe to make it Gluten Free.  I used all-purpose gluten free flour and rice milk.  Since I hadn't liked the Almond Milk with my breakfast I used rice. I figured it would be light enough not to change the flavor too much. History Boy and Angus LOVED them.  History Boy kept wanting more.  Score two for me!  Yay!

Dinner:  Ok, Friday is out order out night, usually.  Apparently no delivery places have a gluten free pizza, LOL.  So the guys decided to order chinese, and since I couldn't think of anything that would be gluten free from there I made myself some more Beans and Franks and I had a small cup of Oikos Greek Vanilla Yogurt as well.

Day 4: (Saturday, January 4, 2014)

Breakfast: So I stuck with Apple Chex, but I used rice milk instead.  I only used enough to wet the cereal, not fill the bowl like I usually do with cow's milk, since I wasn't sure I would love it yet.  I really did like it.  The milk was ok, I don't care for it on its own, but it was good with the cereal and didn't overpower like the Almond Milk had the day before.  I got History Boy to eat them as well, although he ate them dry.  He still doesn't eat cereal with milk on it.  I don't know if that's a taste or texture thing for him but whatever.

Lunch: History Boy bowls on Saturday afternoons.  Since breakfast was kinda late, I ate an apple before we left figuring I'd get something else later.  There is nothing Gluten Free there and Angus went and picked up KFC for himself and History Boy.  Um, it smelled sooo good.  But I didn't eat any.  I started to get a headache so I bought a Coke and went to vending machine and bought some cashews.  I figured it would be enough protein to hold me until I got him and could get something.

Dinner: I made grilled chicken breast for dinner, with mixed brown rice and spinach.

Day 5: (Sunday, January 5, 2014)

Breakfast: I had the Apple Cinnamon Chex again.  If it works, why not? I picked up some gluten-free pancake mix to try so one day this coming week, I am going to try them.

Lunch: I ate some plain chicken breast and I had a small cup of the greek yogurt again.

Dinner: Angus is out of town, beans and franks for me again. LOL  That seems to be my stand by.  It's about 500-800 calories depending on exactly how much I eat of it.  Toss in a small salad and I am good to go.

Snacks: I had two apple today. There were huge ones too, so they satisfied my cravings.

I am getting the hang of it.  Label reading. Double checking.  I do not notice a huge difference in myself yet.  Maybe I will notice more as time goes on.

Not a Snow Day... But it Should've Been!

I hate the cold.  I don't function well in the cold.  I ache and my hands throb.  I have been wearing gloves indoors the past two days.  It's awful.  It isn't even that the heat isn't working, it is.  It's just that my body is not working properly, as per usual. 

Today (Friday, Jan 10) is especially rough as there is freezing rain today.  I got a call at 730 that the buses were running late because of the icy conditions.  History Boy is out of school sick until Monday but I still got the call.  The school called again around 8:40 saying that all buses had gotten to school safely (finally! School starts at 8.)  

I didn't realize just how bad it was until I had to run out to my car and almost fell out the front door.  I slipped, in winter boots, on the front step and almost went flying down them.  I then moved to the grass since it seems the better option than the sidewalk but I still had to cross the driveway to my car.  I slipped my wait carefully across to get what I needed to out of the car and carefully made my way back in.  I put salt out.  Well I actually stood at the front door and threw it out the door, I wasn't brave enough to attempt to walk out there again. 

Then I get a call from the Emergency Response System asking me to stay indoors and off the road because of the dangerous conditions.  Um, didn't the buses just take all those kids to school in these conditions! If I am not supposed to drive, I certainly don't think a school bus should be!  Also, in addition to the Emergency Response Call, the sirens from the local fire house have been going off every 1/2 hour or so. There must be alot of accidents or whatnot going on for it to be happening that frequently. 

Sigh, ok I am done my rant.  

Not Procrastinating...

I'm not procrastinating, really I'm not. I mean, I meant to post a blog Monday but HistoryBoy was sick and I had a migraine. 

But what about Tuesday you ask. HistoryBoy was home sick and I was trying to pretend that this ugh feeling was only my allergies. 

So Wednesday comes around and I take us to the doctors... Turns out HistoryBoy has a throat infection but his sinuses look ok, because he's Ben flushing them with saline rinse. Me on the other hand... I had a sore throat and laryngitis or at least that is what I went to the Dr. for. Turns out I had your infection sinus infection as well as laryngitis and pharyngitis. Good times in our household. 

In addition, HistoryBoy is getting bloodwork done to find out what is going on with his immune system. He has been sick so much... They have already done the " normal" ones like mono, lymes, Epstein-Barr... Now we do the hope and pray it's not, like Lupus, and Juvenile Arthritis and other auto-immune. 

I swear I wasn't procrastinating in writing this, I've just been saying a lot of prayers, trying to figure out my next step, not entirely sure of what to say. HistoryBoy has enough against him already... We need answers, not another crappy diagnosis. Aren't ADHD, Asperger's, Epilepsy, asthma and all his allergies enough?

Hopefully Not...

Some of you know that HistoryBoy has been sick since just after school started.  It sucks.  His immune system is not fighting back the way it should. He is in and out of school.  Doc says it a virus, then another virus so no antibiotics to help his body fight back.  Now he is on one because he has been down and out so long.  

Doc is going to run tests, blood-work and such. Testing for Mono and such, but also for auto-immune like Lupus.  I am praying that it isn't the case.  He is 2 years younger than me when I was diagnosed and I can't help feel overwhelmed by the idea.  He is too young to have to worry about something like this.  I was too but I was more mature and had better social skills (I think lol) than he does.  

He loses so much ground being at home with just me, socially, I mean, I think.   I can be his mom, that's all. I can talk to him the same way I always do, but I know him and can intercept and dodge the information that is HistoryBoy's mind.  I've been navigating these waters for a few years now, lol. I can try to teach him how to interact with his peers but I can't be 13 and actually interact with him. 

We need a break around here. We need to be healthy and feel good, hopefully at the same time. It would be nice for a change. 

Her Diamonds by Rob Thomas

Her Diamonds by Rob Thomas is a beautiful song he wrote to his wife who suffers from an autoimmune disease like Lupus.  (I had heard it was Lupus but who knows) If you've never heard this song, you need to listen to the words, and watch the video. Lately it speaks so strongly to how I feel.  Waking up with my body screaming, knowing I can't give in but wanting to so badly.

"Oh what the hell she says
I just can't win for losing
And she lays back down"

I can't say how many times I have felt this way.  I have been trying to handle this and not let it get to me or even let on how bad I feel, maybe that is why this song keeps making me cry almost every time I hear it lately.  

You may not believe me but my body thinks it is about 60 years old, while I am in reality 37.  I just want to feel better.  No, I don't want another medication that will maybe help.  I am on so many medications, that I feel like a pharmacy. Some of my friends call me and ask me about this or that medication because they know that I know a lot about various meds between myself and HistoryBoy.  

There is nothing I can really do to prevent my body from wreaking havoc on itself.  Most of the time, I just deal with it, get used to it and move on... but I lately wish it didn't always hurt so bad.  



There is a great article that talks more about it.

Sometimes Staying Positive is Tough

As I mentioned previously, our trips to Florida was all about getting healthy and feeling better. And I do feel better. At least I think I was. I was breathing better, asthma-wise and allergy wise. My medications were continuing to help my migraines get better. Ironically, it has NEVER been as hot in sunny Florida as our Jersey summer was here nor as humid.  My achiness is ALWAYS milder as well. So all of *that* is positive. Yet as soon as I come back... I get sick.  Jersey germs suck.  This year I was to the doctor 3 times and have had to have blood work done twice before Fall even started...

My body fights me.  I wake up achy, and I say to myself I am used to it.  I have been dealing with this since I was 15.  I can handle, right? I know it doesn't really get better, as in, I will never be 100% healthy again, or anything like that.  I will be taking my medications for the rest of my life just to make myself feel a little better.  Meds for headaches, for body aches and more recently for depression.  Like I said I am used to it but its hard.  I would like to wake up one morning and be able to say I slept well and I feel good, even if it is only for a little bit...

I am not complaining, at least not in any major way.  It's just hard to stay positive when you feel cruddy all the time. AND it is not something I want to pass on to HistoryBoy, who is also sick a lot more than a little boy should be.  I want him to stay positive.  I don't want to hear him say, 'why am I sick again?" or 'my immune systems sucks like yours mom.'  

I have to change my outlook, bring back my sunnier self.  I have to figure out how to stay positive, how to wake up and even if I feel like a train wreck, pretend, put my happy face forward so he sees it. Maybe if I pretend enough. I'll believe it.

Needing A Nap

Summers are my "GetHealthy" time.  We go to Florida to rest and I try to to just that... Get healthy.

Especially on my "Get Healthy" trips, I am making sure I stick to my naps. If I verge from the norm, how will I get healthy? HistoryBoy is used to it, mostly. Although instead of his just using his books or the computer to amuse himself, he has his grandmom and grandpop. Two years ago, my brother and his wife and their son are here also, so he is in happy, mostly. He gets along great with my nephew, Happy, who was only 2 1/2 at the time.  HistoryBoy loves showing his planes off, or his cars, or books and Happy is only to willing to go wherever HistoryBoy leads.

I need those naps, which sucks.  If I avoid them or miss because I doing something else, I crash and burn.  My body just pretty much shuts down on me. I can only push too far and I could be sitting there next to you holding a conversation and simply fall asleep.  

My problem is how will I ever function like a normal person again if I keep giving into my body and not pushing, or is this simply my new normal and I have to adjust and not expect more?  

I keep hoping once day I will just wake up and I will feel good. As I get older I know that it isn't going to happen simply because I am getting older, more quirks and problems arise as you get older.  No, I am not old but I feel like I am sometimes.  

I need my body to cooperate and so far the only way to do that is by letting it have the naps it wants or needs to function.  It sucks, but what else can I do...

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

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/

Things You (And I) Can Do to Relax

We all need to pamper ourselves sometimes. Even in these tough economic times, a little pampering can go a loooong way. Stress sucks, and our bodies already take quite a beating from what we and the world puts them through. These are my recommendations for what you can do to pamper yourself. These work for me when I am feeling down on myself and need a pick-me-up and you don't need Lupus to need a pick-me-up or for these to work, although I think sometimes we need an extra pick-me-up ma little more often. These are easy and not too expensive, because we all need to go lighter on the pocketbook these days too.

#1: The easiest and best way to relax is just to do that. Take a nap. Let the rest of the world wait on you. Your body is telling you to rest, so let it. We all know the "oh I can push myself a little more" but listen to your body and give it the break it needs.

#2: Take a nice long soak. There is nothing better for soothing those achy joints than a nice warm (or hot bath). I love soaking in a hot tub. I feel so loose after. It's like a nice warm hug all over my body. Along with the soak, I recommend either some music to relax you or a good book or both. I have sat and soaked for an hour in a bathtub with a good book.

#3: Curling up with a good book is not limited to the bath tub. Take some alone time and get that book you have been wanting to read (or re-read) and just do it. This is all about you, so take the initiative and go or it.

#4: Get a manicure. Believe me, it will be the best $10-20 you spend in a month. For me, it makes me feel pretty. My nails look all nice and healthy. It costs $10 each time and I go every two weeks, just for a manicure, not fake nails or anything. They just trim my cuticles, and make my nails look pretty.

#5: That movie you have been wanting to see. Go see it! I know it can be hard to plan to go to a movie. I know. Especially since it it hard to know how I am going to feel tomorrow, and I know that at least for me nighttime movies are a no-go. I can't sit in a theater when my body would rather be in bed, but most theaters have afternoon showings. That is my "good" time, as long as I have had my nap already, LOL. Sometimes doing something you enjoy makes your body remember you used to enjoy it too. (And sometimes the movie just stinks and you wish to have that 2 hours of your life back but THAT is a whole other issue! LOL)

#6: Too tired to go out, ok, rent a movie. Curl up in your favorite chair or in your bed, by yourself or with whoever you want to and watch that movie you have been wanting to. Who cares if it's someone else doesn't like it. This time is about you and what you want and need to relax and find yourself. Give yourself the time you need to just enjoy.

#7: I'm not always up to it, but a night out always cheers me up. A nice dinner either with my hubby or just my mom and me makes me feels better. Even when I don't feel well, which is most of the time, there is always stuff to be done, like cleaning and laundry, just mundane life stuff that I struggle to keep up with and a night out every once in a while helps me remember me and balance all that. I am not alone, even if I feel it sometimes.

#8: Buy yourself something silly. Don't go crazy or extravagant but if you see a shirt, hat or purse you like and it makes your happy buy it. I wouldn't recommend this on a daily basis but leave yourself a small budget for fun. Don't feel the need to deprive yourself. You will end up feeling more stressed and stress isn't good for anyone but people with Lupus have to be extra careful. Stress can be a trigger.

So all in all my advice is to live more, laugh more, love more. Just relax. Don't sweat the small stuff. We all have enough big stuff to worry about in our lives.

October is Lupus Awareness Month

Everyone who knows me, I think is aware of the fact that I have Lupus. It's hard to miss, especially when it gets in the way of the events I want to attend with them, or even the movie night we plan to have. At this

point in my life, I have lived longer with Lupus than I have lived without. I know I had a normal happy childhood, if I was a rather predisposed to picking up germs, maybe that was a sign of what was to come, but in terms of my life without Lupus, I really don't remember it.

Someone asked me to describe Lupus to them. To me, it is like wearing a prickly blanket. This blanket may seem to be just fine. Maybe one or two pricks here and there, totally manageable, then one wrong turn and it shows all of its prickles and you are down and out for the count. Unfortunately, this blanket also masks so many things. It can also mimic so many others. That is what it makes it so difficult to diagnose and so hard to cope with. Often Lupus patients are not dealing with just Lupus. Lupus patients also often have depression, migraines, Sjogren's, Reynaud's and Fibromyalgia. Lucky us. Me, I have only 3 out of 5 of those. Go me!

I am not asking or sympathy. I am asking that awareness and knowledge be spread far and wide so people know about this disease. So that maybe one day there will be a cure, and it will not just be about surviving.

Blogging for a Better Day

I want my life to get easier. I want HistoryBoy's life to get easier. And I know neither one of those things is going to happen soon.

I wake up needing several hours more sleep but HistoryBoy needs to get off to school so I am up to get him up. He is will not get up for me today. I do my best cajoling, tickle, game, blanket pulling. I finally resort to yelling which I know is NOT the way to go because it will NOT work out well. Those of you if you are parent of an Aspie, you know how it can be. Why does he chose today, when I can't handle it to push all my buttons. I know that yelling is NOT going to get the response I need. Unfortunately, I am ready to cry myself because I feel so poorly. I yell for him to get out of bed now I have had enough of his games and he starts banging his head against the wall. I have to just walk away. GREAT start to the morning.

This meltdown he had; I should say that it has been coming on since last night. I noticed he was off but I couldn't put my finger on its source. He was clingy and non-responsive but he can be that way at night when he is tired sometimes so I shooed him of to bed. We read a few chapters of his current book and he fell asleep. And I wake up to HistoryBoy from hell. Is it hormones? Anxiety? Do I need to wake him up earlier? Isn't 6 am early enough? eek!

He finally calmed down. I calmed down. He finally got out of bed and got dressed on his own. THEN decided to take a shower which didn't thrill me but we were late to school already so what was another 15 minutes at this point, right? He then was all dressed, and ready and wanted to sit on my lap and nuzzle me. At this point, I am calm and collected but I am at a complete loss. What is going on? Why is he ok now but was at Defcon 5 just 30 min ago? He is holding onto me and wanting my attention and arms wrapped around him and I am trying to escort him out the door.

He goes into school easily enough, but what about tomorrow? Unfortunately I do not have the energy to try and figure it out now. I need to go back to bed. Like I said in the beginning of this blog... I want my life to get easier. I want HistoryBoy's life to get easier. And I know neither one of those things is going to happen soon...

Saturday Fun Means Sunday Sucks

This past Saturday was a great day for several reasons. We started off the day as usual. HistoryBoy had karate. Then my good friend Kathy came down to visit. We see each other maybe once a year if we are lucky. We went to college together and she currently lives in Connecticut so it is tough to get together often. But it was so great to see her. We has breakfast, early lunch at Popeye's. LOL

We then went our community town fair. It turned out to be a gorgeous day. We didn't expect it to be so warm or so sunny, otherwise I would have had sunscreen and possibly an umbrella. I think I melted. I pushed myself because I wanted to spend time with Kathy and I promised HistoryBoy that he could ride the ride. Ok, so by the time we got through the booths to the rides I was so done in, he got to chose 3 rides but he was good about it. Kathy had to leave to go meet up with her family and I had to went home and CRASHED.

On Sunday, I couldn't even get out of bed. Ok, I got out of bed to go to the bathroom, none o us wanted to deal with THAT. But otherwise, I was in bed. I was so sore, so achy. My head hurt.

It's the same story again and again. I think you have read it before. I have a nice day. Then an sucky day or two or three. How to avoid it is what I want to know? But would I trade the time I spent with my friend? Or the enjoyment of watching my son play with his friends?

I need a little button like a Thanksgiving turkey that says your done, stop now and you will be fine, no repercussions. I can tell when I am getting tired, don't get me wrong, and I know when I am pushing the envelope and stealing tomorrow's spoons, but I know I didn't steal a week's worth of spoons so what gives? I am just feeling a little frustrated. The answers are NO, I wouldn't trade any of these moments, I just have to get my body to keep up.