Wednesday, November 3, 2010
Hi everyone! Miss you and love you all! Been crazy busy, kids are good, hubby and I are good too!
Can I ask a favor... Can you vote for my picture to win in a contest? Here is the link... I am picture #2, the cat reading a Kindle, with the book 'Grave Witch', which is AWESOME! Thanks!
Can I ask a favor... Can you vote for my picture to win in a contest? Here is the link... I am picture #2, the cat reading a Kindle, with the book 'Grave Witch', which is AWESOME! Thanks!
Saturday, May 29, 2010
Wow, so much has gone on in the last month, and yet, so much has not happened all at the same time. Strange that. Very strange.
Bringing you up to speed... The biggest news by far is that my boys had their Eagle Scout Court of Honor... picture above. They have about 10 plaques and 30 plus letters each from local, state, and national organizations, current and former presidents, vp's, senators, governors etc. It was a really moving ceremony (altho 95 degrees in the school gym) and afterward we had a nice party back at the house!
The Eagle Scout ceremony was the at the end of a string of consecutive weekends of camping and the HUGE spaghetti dinner fund raiser that the Scouts do and my Hubby chairs. And, the Monday right after I went away!
Mom and I went to Atlantic City for her work. This was my 4th May conference with my mom. It was nice. We enjoyed ourselves and I came home with $100 more than I left with! Always a plus! We had nice dinners and fun playing poker machines and lots of slots.
Unfortunately, my health didn't cooperate fully during any of this and by the time I arrived home I was a mess.
Full lupus flare, with the whole peripheral neuropathy thing going on. That is pins/needles/numbness and pain. It was down my entire right side. From the tip of my head to my toes. I have spent the last week tossing and turning, and resting.
I have been experimenting with my meds and with self medicating with a little wine/beer/or liquor to help me sleep. Normally, I wouldn't do this, but I am waiting to get into the new rheumatologist in July. Ack.
This weekend, Memorial Weekend (kudos and thank you to all in the service, past and present) we have nothing much to do. Tomorrow, the boys are heading in to NYC to see the Fleet Week ships and then we have a family BBQ to go to.
Coming soon we have a combination Scout trip and family trip to the Inner Harbor, Baltimore. My dad is coming too (mom and my bil Uncle K will be home) and we are trying to get to a game at Camden Yards on Friday night, Saturday is Fort McHenry, then Hubby and the kids are sleeping on the USS Constellation with the troop. The ship was a former slave ship before being commandeered for the Navy and becoming a war ship in the Civil War and after. Then, Sunday we want to go to the National Aquarium. It is awesome. We visited in 2001 and the kids barely remember it.
As you can imagine, having the Lupus acting up is not going to mesh with the Baltimore weekend plans.
Enter the PREDNISONE. Yes folks, this will be my third round of the dreaded stuff since the holidays. It's a love hate relationship... it works, but the long term side effects are not good. Even in the short term a taper makes you a little nuts, but I need to do it. I need to be in better shape to push my body for the trip.
Things have been hard. Very hard. Lots of tears, lots of frustration. Lots of pain and not enough meds to cope.
It is hard realizing that I am probably not going to be able to do all the things I thought I would do. I want to travel, see the US and Europe, Alaska, Australia. Probably not going to happen. I want to see my grandchildren and do awesome stuff with them... I can barely do stuff with my kids, so that is probably not going to happen. I thought I would go back to school someday for fun... probably not going to happen.
I often feel I am not enough. Not good enough at being a mom, at being a wife, at being a daughter. Lots of little comments and jibes from family seemed to be repeatedly driving that point home. Why isn't this done? Why can't you? Why are you too tired? Why? Why? Why?
They know why. I know why. It sucks for everyone dealing with this chronic illness/disease/pain.
It's been hard.
Yesterday, I was having a particularly bad day and my dad handed me a box. He said it was a Mother's Day gift he bought me but it was on backorder and just arrived. It is a gold heart with rose and a ruby. On the back it says, 'My little girl yesterday, my friend today, my daughter forever'.
Needless to say I was overwhelmed. Lots of tears.
Maybe, life isn't that bad. Maybe the fact that I am blessed with the love of my parents and Hubby and kids is enough. It is has always been enough for me, but...
... even more importantly, maybe I am enough for them. Maybe just maybe.
Hope this finds you well...
Tuesday, April 27, 2010
A very important list for those with Rheumatoid Arthritis, and/or Lupus, and/or Fibromyalgia. (aww hell, for any of the auto-immune arthritic diseases)
How not to Cripple Yourself
1. Do not scrub your bathroom tub tile walls until your hands can no longer hold the brush, and your back appears to be stuck in the bent position for the bottom half.
2. Do not do wash in the middle of the night after a long day.
3. Do not do a lot of writing and errands the next day, forgetting that sometimes the swelling and pain takes a while to set in.
4. DO try to hide the fact that you are crying in frustration and pain for hours and hours.
5. DO take pain killers before you get to that point.
6. DO text/talk with someone who understands and asks the right questions and doesn't say dumb things like 'It will be ok.' (Uncle K, thank you)
7. DO hope/pray/light candles etc that you will get an appointment soon with a new rheumatologist since you really don't like the one you have now.
8. DO go for the yummy! ;-)
9. DO play silly computer or iphones games to distract yourself.
10. DO remember that it won't be ok, but it will get better than right now.
Thursday, March 11, 2010
I have so much to be thankful for, so many blessings.
However, today, I am in pain, tired and weepy.
I hate that.
So, I got up, took my morning meds, got dressed, ate some food and took a vicodin (which I hate to do), drank 2 coffees, drank an orange juice, checked emails, and crackbook, er Facebook, I mean, and now, I am here.
Weepy because I am so blessed. Weepy because I really wish I could ENJOY my blessings more.
Today lupus/rheumatoid arthritis is kicking my ass.
1. Coffee. Thank you, Juan Valdez. Green Mountain. Keurig.
2. My kids. My life. My heart. My reason.
3. My parents. Dad's 70th Birthday was yesterday. We had a surprise dinner for him on Saturday night, just adults, with my cousin Karol and my sister/bff Kathy. He is their surrogate dad in many ways and they wouldn't miss it for the world. It was nice. Last night was dinner out with the kids and Uncle K, who couldn't make it on Saturday due to work. :-)
4. Reading. Oh how I love to read! AND, I am so blessed that my kids ALL have the reading bug too! YAY!
5. Tonight, Fuzzy will have his Eagle Scout Board of Review... and he should be elected as one with no problem! The big public ceremony will be in May and he and Hammer will have that together!!! I am so proud!
6. Libby. She is snuggled on the floor right next to me as I type. If I get up, she follows, and then reclines near me, wherever I may go. Nothing like a dog for loyalty!
7. The cats! Oh the fun they are having with mylar balloons from dad's birthday floating about! They are so funny!
8. American Idol. I enjoy watching it each season. By extension, I am grateful for music. It is just such a wonderful gift and part of life. It can help lift you up, pump you up, express love, hate, frustration or fun!
9. Piano. I love listening to Pumpkin play piano! She is so gifted... and doesn't get it! LOL
10. My friends. Thank you, your support means the world to me. Truly.
Wednesday, March 10, 2010
Tuesday, March 9, 2010
Fuzzy finished his Eagle Scout project this weekend. Phew!
Stay tuned tomorrow for a Wordless Wednesday picture that will highlight his efforts!
Warning: Mommy braggin' below! LOL
Fuzzy collected items over a two week period at 3 locations Mon - Fri and 2 locations on Saturdays. (two schools, and police station)
In addition to 2 huge boxes of items, also collected was over $420.
Who is to receive this windfall?
American soldiers in Iraq and Afghanistan.
Regardless of your personal feelings about the political reasons/situations that resulted in our deployment of these soldiers - they are there. At the whim of our government, putting themselves on the line every day. They deserve our support, and if we can give them a little comfort - that too.
The Letter from Home Program at lettersfromhome.org will be the liason between Fuzzy and the soldiers.
I am very proud of my boy.
This Thursday will be his board of review, and barring any unforseen difficulty, Fuzzy will become an Eagle Scout at that time, soon to join Hammer in the formal presentation at the Court of Honor in May. :-)
Fuzzy has had a very rough month too, after just getting over an ear infection in January and injuring his leg/knee with an almost break and tearing the ligments, last week he was sidelined by a bad cold that went straight to bad bronchitis and asthma flare up.
This week he is completing the final Eagle Scout Project details, making up school work, arranging to make up NJ State school testing, and serving our township in Youth Month! The students who volunteer are assigned two counterparts in the municipal government. One is a township employee, the other is a member of the Mayor and Council. Very cool opportunity. Fuzzy and Pumpkin are both participating this year!
Tonight is a meeting of the Planning Board and Fuzzy will be attending.
My youngest son and middle child is maturing into a fine young man.
I will tell myself that over and over as he gives me that teenaged rolled eyes face and says 'I knowwwww' everytime I try to remind him of something.
Thursday, March 4, 2010
How did I do three entries last week and miss Thankful Thursday?
A good question, for which, I have no answer. :::hanging head:::
But, I'm baaaaaaaack!
1. Coffee. Oh yes... yum.
2. Asthma meds. For Fuzzy. Very thankful indeed, because my son would not be able to breathe and might be one of thousands of children each year who die in asthma related deaths, usually because they are not being treated for it. (just one shameful aspect of our stupid healthcare system)
3. My husband. I have been going through a particularly difficult time of late for a variety of reasons that I am not going to recount here and now. Suffice it to say that much of it is relating to coping (or not) with chronic illness/pain. ALSO, suffice it to say that I have been, at times, difficult to deal with. I know, I know, hard to believe (:::snicker:::) but true. Hubby has been WONDERFUL and patient.
Except for the one lapse where a smart ass comment sent me careening out of the house in the truck, in my jammies, to McD's, but I won't hold that against him. Or mention it again. I don't think. :::shrug:::
4. Uncle K. He won't read this as he is computer deficient, but one of my kids will probably tell him, THANK YOU for being a good friend.
5. My parents, as always, for all their help.
6. My kids. The reason I put up their picture yesterday for my Wordless Wednesday post is because they are MY LIFE. MY HEART.
7. Our quirky humor and family life.
OMG, you have to hear this... too funny. So, Pumpkin Muffin was being told this joke that had to do all this math. She got each and every answer right and quickly, then at the end she had to 'QUICK, name a vegetable!'
Her answer: Banana!
Yep, that's my Distiguished Honor Student! Just brings a tear to your eye... as you realize our future is doomed!!! LOL
8. My friend Donna, a childhood friend, that I have reconnected with on Facebook! After many email conversations, we are getting together for coffee tomorrow! YAY! :-)
9. Books. This week I have read, Kalayna Price 'Twice Dead', Jane Austen 'Sense and Sensibility', Stephen Coonts 'The Disciple' and I am reading Mark Henry 'Battle of the Network Zombies' (for free on kindle this month!). The latter has had me laughing out loud so hard, I had tears rolling from my eyes! (A warning though, the book has graphic language, violence and sex - all done hilariously, but it wouldn't be everyone's cup of tea!)
10. American Idol! Not sure who is my absolute fave yet, but I am enjoying it!
Okay... time to go! Pumpkin Muffin will be walking in the door any second and will demand all my attention to discuss her day prior to starting homework!
Wednesday, March 3, 2010
Wednesday, February 24, 2010
Tuesday, February 23, 2010
Pumpkin can be a force of nature.
Sometimes she just does not understand why the world will not bend to her will.
Today, it is her honors pre-algebra that is giving her fits. It isn't that she can't understand or learn what is required; she just doesn't think that she needs this particular knowledge at all or the way her teacher wants her to learn it and she wants the math curriculum to be changed.
Pumpkin also is angry that she has her period again. She yelled earlier 'Who's stupid design idea was it that we get this thing for YEARS before we need it and for YEARS after we need it?'
As a peri-menopausal woman of 44, I agree wholeheartedly, but that isn't where I was going with this post. LOL
Although tempted to just shake my head at Pumpkin's stubborness and blow it off, maybe, just maybe, her stubborn unacceptance of these and many other inconveniences/occurences in her life will serve her well.
Maybe far better than my own quiet, calm, acceptance that was part of my personality growing up.
I guess only time will tell, and I am in no rush to find out. There is plenty of time for reflection on it all years from now when she is an adult and I am in a rocking chair, maybe with a few grandkids nearby.
And, I am enjoying the show too much to wish it away too quickly.
Sunday, February 21, 2010
Tempus fugit. Time flies. Youth is wasted on the young.
All so true.
But, you don't really get it until you are of a certain age.
I remember my mom telling me all the time when I was a kid and a teen, that each year that passes gets faster and faster. I thought that was the most ridiculous statement I ever heard! A year is a year! Period. 365 days.
Somewhere in my mid-thirties I started to get it. Now, I know it is true.
So, what to do? How do live life to its fullest, to the utmost of your ability when you are saddled with chronic illness that impedes it?
How do you do it when the mind and heart is willing but the flesh is too weak, too painful, too impaired?
How do you not become endlessly frustrated? Like the Greek legend of Sisyphus, pushing the gigantic rock up the hill and having it fall back down on you crushing you for all eternity OVER and OVER again?
Oh. Were you expecting me to have some wise and wonderful answer to give? Some glib answer, or pollyanna-ish retort saying 'don't worry, be happy'?
Because if you were expecting that of me, hoping to read that today, you are in the wrong place.
Nope. I don't know how not to be frustrated because I am. I am frustrated. I am mad. I AM Sisyphus. I have good days, but know they will only be followed by bad eventually. I have bad days, knowing that the good will come too.
It is a roller coaster as chronic disease always is and I am always either on the hill ticking up to a high or crashing down to a new low.
It is very similar to dealing with death/grief and the stages of it. Anger, denial, bargaining, and acceptance, over and over and over.
There are days I want to scream, wail and keen, 'MAKE IT STOP, LET ME OFF'. Like now. Like today.
I wish that it could be different. I keep hoping for the next great drug to try that may be a magic wand, but truly, no magic wand will ever exist. At least not in my lifetime. The drugs will work and then they won't. There is always hope though, and I do cling to that. I have to do so. The alternative is less pleasant.
I see how easy it would be to spiral into a deep and lasting depression. I really do. The darkness is always there. Just nipping at the heels of the light.
I am in email loop with a group of women some of whom have been dealing with this disease for close to 30 years. Most of them are in the 60's, some in their 50's and one in her 70's, but they all have the same frustrations and maybe some more wisdom. We share each and every day about our lives, and our disease, and our coping or lack there of, and we know that no one else really 'get it' except each other. We cling to that. We have to because we need each other.
I haven't shared with my Loopies (our name for ourselves) my latest crash on the coaster. I don't know why. They will read this blog post and they will know it happened and maybe I'll be ready to talk about it soon.
I am not ready now. I want to get off the coaster.
I want the life that I thought I would have by now. I want the years to slow down because I will never be able to fit in all the things I want to do before I die. I want to take care of my parents, physically and monetarily and emotionally, instead of them taking care of me.
I want the ride to stop.
But it won't. Sigh.
Here's to hoping that soon I start to hear that ticking sound. You know the one I mean? The ticking sound that the roller coaster makes as it starts to pull your car to the top again.
Thursday, February 18, 2010
1. I am thankful to be back on my blog!
2. Thankful that Fuzzy seems to have not broken his leg/knee in his injury yesterday, even if we are cautiously treating it as such.
3. Coffee. Coffee, coffee, coffee.
4. Thankful that my recent head cold/ear infection seems to have resolved itself quickly and on its own.
5. Thankful that at Pumpkin's 13th birthday party hotel sleepover I was able to get 4 hours of sleep. The girls got 2. lol And, very thankful that we got a reduced room rate and the adjoining room free, including breakfast.
6. Thankful that both my parents are alive and relatively healthy, and able to give me help and support with the house and the kids. I don't know how I would ever manage without them.
7. Thankful that both my parents are also my friends. We have fun together and enjoy being together as a family and even just going out as two couples. I am very blessed.
8. Thankful for all the silly things between my hubby and myself that make me laugh. It is so true that just laughing together or with the kids can be full of healing/soothing energy and it helps me cope.
9. That Fuzzy will be doing his Eagle Scout project soon over two weekends, and he and Hammer will be able to have their Court of Honor together in May! YAY!
10. Thankful for friends that in person and online make my life better. The support, love and consideration helps me cope. Coping can sometimes mean whining, complaining, being cranky and sad. Sometimes it means laughing, sharing and hugging. It's great to have pals to share the good and the bad.
11. Thankful for Facebook. Mindless games help me cope with pain and stress. Reconnecting and staying connected with old friends and new so easily is just a wonderful blessing. We are so lucky for technology that aids us in this way. Yes, you have to wary and set your security settings well and all, but it is worth the time and effort!
12. Thankful that Libby is moving better with her arthritis now that we are giving her buffered aspirin twice a day. :-) Thankful that she and the cats give us so much joy.
Well, that is it for today...
Wednesday, January 27, 2010
I have my own version of Fantasy Island.
I am on a gorgeous tropical island. There is no Tatoo, just me screaming to the heavens, 'Da pain, Da pain!'
With that, a shirtless Wolverine (Hugh Jackman, for the uninitiated in comic based movies) arrives at my side, waves his beefcake arms and...
The pain disappears, I return to my pre-diseases self (lose near about 80 lbs and some wrinkles), turn to my Hubby and kids laughing, and we head to the beach to the live happily ever after.
Yeah. NOT LIKELY TO HAPPEN.
So, instead, I realize today that yes, after suffering with this nightmare flare for the last week and a half (although it has been building longer) I will give in and go for the prednisone taper.
I hate taking the vicodin but I have been and you know its bad when doubling up ain't cutting it. That was always the benchmark that my original rheumy recommended.
For those who don't like TMI, avert your eyes now, for the brave, stay for a glimpse more.
It has been so bad that I have been avoiding washing my hair. Today, I suffered thru it the first time since Sunday. It was awful. Elbows screaming while shampooing and rinsing and conditioning. Feet hurting from the tension of clinging to my balance.
Thank heavens I am blond and sparse in the hair department. No leg shaving happening this week either. I could go for about 3 weeks before anyone would ever notice. BUT, I know.
Usually nothing stops me from shaving the 15 stubbly hairs under my arm, because Hubby HATES hair. It's a thing with him. Actually gags when they show the girls on Survivor with underarm hair. I laugh at him. Anyhow, I always, always, always do that shave - unless it is in the midst of the flare from hell.
Yep. No shaving the pits today. Bending the elbows more than I had to do for the hair? No way. Holding that small handle in my sore hands? Nah uh. Not gonna happen.
Yep. Time to surrender.
Thankfully, I have the prednisone in the house. Will probably do 60-40-30-20-10 -5mgs. I won't sleep the first night because of the jitters. Second night, I may get some winks of sleep but it will be fitful and full of nightmares. By 24 hours in I will become voraciously hungry. And, thirsty which means lots of potty trips. Ugh.
BUT, but about day 3 I will start to realize... wow, my joints are not as sore and I am able to move better and with less pain.
New rheumy thinks this is more Lupus and Fibro than RA. Old rheumy thought more RA, maybe lupus, probably Fibro too.
I think it all SUCKS.
Thank heavens for the COFFEE.
Friday, January 15, 2010
I have round 3 of the 'Head Cold of Doom'. That was for you, Hammer. LOL
Apparently, the germs morphed when Hammer got it and he was able pass it back to me so by Tuesday I was a blubbering, nose blowing, sneezing coughing mess. Still same today...
I am hopeful that tomorrow will be better. Please. Really. Let it be better. I try to be good. Really really good.
1. Coffee. 'Nuff said.
2. Puffs. Yeah. My nose is that red.
4. Vaseline. It soothes the above nose.
5. Chapstick. Lips chapped too.
6. My new pj's from Land's End. Best Christmas present ever when you are repeatedly sick and wearing them nonstop. All day. And, night. Yeah, it's been like that.
7. My dad. He bought me my favorite donut yesterday from Dunkin' Donuts. He is the best. Truly. :-)
8. My dad again. On another errand after dinner he bought me my favorite potato chips. He rocks. And, he obviously feels sorry about the pathetic sneezing, nose blowing, hacking mess of a human I have been stuck as for the last 7 weeks on and off. Thanks, Daddy.
9. Books and computer. You have kept me sane.
10. Nyquil. Cherry. You give me 'sound' sleep for about 4 hours... ahhhh
Okay... so that is the 'sick' themed thankfuls for this week!
I said this on Facebook... whatever I did in my last life must have been awful because I am paying for it now! :-/
I have one serious thankful...
11. Fuzzy's ultrasound was negative for appendicitis and gall stones and all we seem to be dealing with is a little nervous stomach. Which sucks, but it is better than anything requiring surgery.
Friday, January 8, 2010
So,I was all excited that we were going to get snow today... but we didn't. Just an inch of nuisance. Feh. Gimme a real snow storm please!
I am late, but better late than never, and I am always ready to count my blessings!
1. Coffee. Yep. After fighting bronchitis twice this holiday season and having this congestion linger on much too long, coffee is the only way my brain and body seem to be waking up. And, we had that uber cold spell in the 20's and my steaming cup of coffee kept the chill away! :-)
2. Family. I was able to see most of my family and friends over the holidays and I really enjoyed seeing everyone.
3. My parents. My Mom and Dad who spoiled us all at the holidays!
4. Fuzzy's new bowling ball! His first two practice games were a 224, a new high for him, and a 168! Very nice!
5. Farmville! Great for hours of enjoyment while hacking up a lung and wishing you could sleep.
6. Facebook! Recently, I it has been a blast! One evening this week about 6 of my friends from high school and I had a really giggly silly girl conversation and it was so much fun!
7. Books. I highly recommend the new Steve Berry 'The Paris Vendetta'. Awesome! Also the new Jeff Shaara 'No Less Than Victory' his final in the WWII trilogy. Fabulous. On a lighter note also good reads Wendy Roberts 'Dead and Kicking' and Charlaine Harris 'Grave Secret'.
8. Kindle. I love my Kindle. My daddy bought it for me last year and even though there are certain authors I still want in a hardcover book, there are plenty I don't and read on my Kindle which is such a delight for my hands!!! :-)
9. Uncle K. Things are still not completely settled for him, but they are moving forward. Should be all done soon. I am thankful for the time he spends with my kids and being a friend to Hubby and myself.
10. Libby, Susie, Tina and Pumpkin. My dog and 3 cats. They always provide me with comfort, but this holiday season, lots of laughs too. Lots of cat fights over the tree skirts etc... very amusing!
Well, signing off now!
Monday, January 4, 2010
Damn! Hate to start off 2010 with a swear, but it is COLD outside!
Yep, a balmy 22 degrees here in NJ!
I plan on staying in the house with multiple cups of coffee to keep me warm!
Oh... wait before we go any further...
Happy New Year!
There. I feel much better.
Speaking of feeling better... I am, but let me explain. First, Fuzzy was really sick and that got the asthma all going. Of course, I got it and had bronchitis before the holidays and just started to be better at Christmas.
Christmas was great - family, friends, love, laughing, happy kids, food etc.
Then, we went shopping the day after Christmas and this little kid was hacking, coughing, and running her booger ridden hands all over everything. I purelled (I know it isn't a real verb; I don't care) myself and the family.
BUT, two days later, I started my relapse! Just in time for our trip to NYC! ACK! But, I put on my big girl panties and we had a wonderful day! Saw the Radio City Christmas Spectacular (thanks mom and dad), had a great lunch with Kathy, her Hubby, my nephew, J, my mom, dad, Hubby and the kids! We saw the tree at Rockefeller Center and went to St. Patrick's Cathedral. Saw the window decorations on 5th Avenue. A wonderful day.
Came home and allowed the bronchitis to beat me up. I am just turning the corner NOW, and starting to feel better! YAY!
Good thing, because we have a busy week! Fuzzy has 2 bowling matches! He is on the Junior Varsity team as a freshman for his high school!
ANYHOW, that is my quick update for all of you in the blogosphere!!!
I am back. Yes, I mean it. I will update at least once a week, I promise!!! Just so you know I mean it... I swear upon my COFFEE! LOL