Birthday bloggin'

We're up in NH for my birthday. Not as good a trip as we've had in the past. Thought I'd compromise and book a house near the beach, 'cause even though we'd done our Jersey shore thing, Tim can't get
enough of the beach. BIG mistake. NH has 18 miles of coastline. I grabbed a house right near the most popular beach resort. This place is MOBBED and we can't get parking anywhere. Luckily, we can walk to some stuff from the house. But, there are TOO MANY PEOPLE here. Here's another thing, I rented a pretty nice place, as rentals go. All renovated.Very clean.
Half of a duplex. We get here last Sat, and there is NO  A/C. Now, being a Jersey girl, we don't even
think to ask, 'cause we attribute the "NO A/C" thing to only 3rd world countries and maybe Santa's house. Are ya kidding me here? Looking around, most of the homes do not have any a/c. Now, we do
have ocean breezes, and it generally cools a bit at night, but it has been a rough few nights and I am hot flashing away, to boot. No ceiling fans in the bedrooms, just the living room and dining room.
NOT fun! And we brought the pooch, so it's not like we can even bail and go to a hotel. JEEZ! Oh well, they can't all be great vacations. This year, it seems to be the pattern. I don't have a clue what to do today for my birthday. I WANT to go buy a sports car, but I am resisting the urge. I've felt a need,
lately, to get back to the ME I used to be, not this old, boring, overwhelmed woman I've become. Tim got me(read I got myself but he was there)this laptop for my birthday so no more being out of the loop when I'm away.Not sure if that's a good thing but since there's not much to do and I am up at 4 or 5 am, while everyone else around here sleeps forevah, it's passing the time. So that's the news from
Hampton Beach, NH. Well, time to find something to do. I'm so tired from 4 months of insomnia, I could just lay around and sleep!

Lazy days of summer

Well, summer is scooting by, as it always does. My daughter's social life is much more active, as she is old enough to go "downtown" with friends by herself. It's costing me a fortune. Living just a block from the main "Avenue" her friends come here, then go there, eat lunch, get Starbuck frappachinos,
and generally just spend money like it grows on trees. I do nothing but run a taxi service to friends' houses, the mall, and hand over 20 dollar bills these days. My kid is turning into a young woman, right before our eyes. Scary,
astounding, and miraculous all at the same time. So many people have commented to us about how pretty she is and how much "trouble" we are going to be in with her that Tim said the other day,
"damnit, why couldn't we have had a boy." He wouldn't trade her for nuttin', but it is frightening.
I saw her for the first time (for more than a glimpse) in a bikini the other day and the only thought that came to mind was, "oh crap."
Anyway, as for Tim and I. He is very busy, as always. Just dog-tired from working so hard. Wishes
he could step back more but finding help is tough. We just hired a kid, the boyfriend of a girl who lives down the block. Nice kid. We were so impressed with how he started out. Now, the kid has days when his brain does not show up and he's useless. First excuse was "I kinda have ADD." Now, he tells our other employee, "I kinda have depression." Ya know, if it's a medical thing, we'll try to work
with him, but too many times, you find out these kids are popping prescription pills. He recently told us his brother just kicked a habit of them, and that sent the red flags up about him. The bottom line is,
he is a danger to himself and Tim and Alan if he is that spaced out around power tools and such. I hope it works out, but I'm not holding my breath.
As for me, I am struggling with insomnia. Started before Easter and I just don't know what's going
on. I sleep a few hours and then I'm up. I am so exhausted I have to be careful about driving and feel
like heck most of the time. Thinking it's just hormones but really debilitating at this point. My brain
has been fried for so long and it's hard to accomplish much around here like this. I am still working with my docs on BP meds. Switched to a different type due to side effects. This one is working well but then started making me feel really bad. We dropped the diuretic part of it, and now I'm hoping I can stay on it. It is aggravating my asthma, so I'm back to inhaling steroids, but I have to be on something, so we sleuth away until we find the magic pill. I just booked a week in New Hampshire. Grabbed a vacation rental duplex a block from the beach in Hampton Beach. We can bring the dog.
Looking forward to it. LOVE NH. Liv was just offered a job coaching cheerleading for little girls. It is going to be a CRAZY fall as she is consumed with her own cheerleading practices for high school cheerleading and then these practices for her job, then 2 football games to cheer/coach at every weekend. We will be running like crazy from mid August to the end of Nov. But, this kid needs to learn responsibility and I think this is a good opportunity for that. Anyway, that's the latest. Oh and MM, carfilzomib was approved!!!! SO glad about that. Now, scientists, please get to that one that is going to CURE everyone with MM. Please, we are losing such wonderful people to this damned disease. WE NEED THE CURE!

Happy summer y'all.

Vacation?

Well, I'm still here. Just got back from Cape May today, and had some computer issues before I left, hence the lack of posts. I am recovered from the ablation, physically at least. It's been a tricky few weeks in other ways. I had a couple of weird, fainty episodes, and am hoping that doesn't become a habit. I went back on BP meds while on vacation. For some reason, my BP was really high and it could not wait until my next doctor appt. where I hoped to get a more tolerable med, since I've had a few reactions to this one. This 4th of July week in Cape May is always something we look forward to. We go with my parents. This past week came with some wrinkles, though. Reality follows you where ever you go.
My mom's memory is getting worse. It's always sad to see as things slip further from her but I had a very painful interaction with her, the first night we were there. It seems that she forgot that Tim isn't cured, and still has MM. She burst into tears and it was like seeing a child cry. She had to go into her hotel room to collect herself before Olivia saw her(thank goodness she was engrossed in her IPOD and had the earplugs in.) My dad and Tim were just pulling into the parking lot with dinner from a take-out place. She collected herself but her eyes were bloodshot through dinner and she could barely look at Tim the whole time. VERY upsetting and not a scene I will probably ever see erased from my memory. Then, the next morning, before Tim and my dad hit the golf course, Tim told me that his PN in his feet seems to have returned the last few weeks. He said he's had numbness and that "fallen asleep" feeling for awhile now. I intend to look up those Dana Farber supplements  and get him on them. What else can I do? SO, the 6-day trip started off with a whole lot of sad. I did my best to recover and make the best of it but my mom is shrinking her world. She did not make it to the beach even once. She is afraid of having an asthma attack. I had no idea that last year's trip was going to be the end of an era for us with this vacation. Things change. Nothing to be done but roll with it. I have learned to "let go" more and this is what I attribute my better handling of stress these days to. Even with my ablation, I thought, if it's God's plan to take me outta this world, not a lot I can do about it.

Life is not easy and getting old definitely ain't for sissies. I feel awful for my mom. This was her worst nightmare. But, we just have to deal with it the best we can. Some days, it gets really hard to find those silver linings and blessings. Too much tough stuff going down these days. I feel like I am forever picking myself up, dusting myself off, and trudging on. But, I will. Got too much to do to get all bogged down in it. Here's hoping the rest of the summer has some good times in store. I sure could use some.

Cardiac ablation

Tomorrow morning, I check in for a cardiac ablation. I'm amazed at how differently I handle stress these days. In years past, I would not be able to concentrate and I'd be a nervous wreck leading up to something. Now, I put off the worry until that day, and I guess I have too much to do to sit around obsessing. I am hoping that the process is not too bad. One doc said they'd put me out, the one doing it tomorrow said I'd be awake for most/all of it. I think I like the PUT ME OUT version better but, he's the boss. I'm looking forward to having this in my rearview mirror. I am really hoping that it works and takes care of this problem, once and for all. This black out and fainting stuff ruined my life for MANY years, and though you can't "cry over spilt milk" or change anything, the more I hear how common this is, the more aggravated I get that it was not diagnosed so long ago, when I first sought answers. I just spoke to my neighbor, who is giving Liv a lift to school in the morning and her son has had similar problems and is starting to have some of the same tests I had years ago. I told her, "I'd get him to an electrophysiologist." Wish someone had told me that all those years ago. So, wish me luck!

Yesterday, my pastor, knowing I've always wanted to hear his daughter sing "Amazing Grace" (she has a beautiful voice) had her sing it to me yesterday, during church service. He sang with her and they both played guitars. This was unexpected and I cried through the rest of the service. Such a nice thing to do for me. He said a prayer with me, as I received communion, and I was so touched by all this, I bawled all the way home. I am blessed.

On a not happy note at all, I have not posted about Paula. Words fail me when I try to explain Paula, but most of you already know her and understand that. I cried like a baby when I read that she'd died. Another bright light extinguished by this damn myeloma. 42. I mean really! 42 years old.  I will never be able to wrap my brain around things like this. She was so brave, so darn funny, right up to her last post. She had e-mailed me privately a few weeks ago, asking what I might know about the condition she'd gotten from the MM (she'd seen me comment about it on another blog some time ago) and she apologized for "laying this on me" and was more worried about her beloved Bernard than herself. Really, I just can't seem to find the words to describe how awesome she was and I saw that through a computer screen. I'm sure she was absolutely mind-boggling in person. I so wish this woman was able to stay here. What a huge loss this is, to so many people. We all got ripped off, but of course, she did most of all. My heart goes out to Bernard (and Buddy too.) I wish them God's peace and grace as they move forward from this hard, hard time.

I miss you Paula, and I will NEVER forget you! xx

Tough week

This week, I learned that Sean Tiernan, from the UK, died of MM. It is sobering, scary, and depressing to know how fast things can turn. His brother, Nigel, who was his donor for his allo, told us on his blog that it was pneumonia that was the culprit. From what I understand, pneumonia and kidney failure are the top 2 things that take an MM'ers life. I would think that sepsis is probably up there too. Sean was an MM'er whose disease refused to back down, to whatever they threw at it. I am always just ever so slightly comforted though, when I know someone has had an allo transplant, when chemo was failing them. At least, you know they left no stone unturned in fighting this damn disease. I know a lot of people are against allos, but after meeting people, in person and on the internet, who were saved by them, had long remissions, and in a few cases, were cured, I think they are a useful tool, especially when chemos are failing and options are few. I feel awful for Sean and his family. I know this is a huge loss for those who loved this special, dynamic man. In his last post, he talked about driving his bright yellow car, and how it cheered him up. I intend to wear bright yellow on the day of his service to pay homage to him. I admire his attitude and fighting spirit.

Things did not go well for our family this week, either. I had another episode of SVT and Tim rushed me to the ER at 6 in the morning. This one was slower than the last and I used some of the techniques they told me about to try to stop it, and after coughing repeatedly in the truck on the way to the hospital, I broke the arrhythmia. I decided to go to the ER and get hooked up to an EKG monitor just to be sure I was out of the woods and that wound up being a bad decision. My EKG was abnormal and they thought I'd had a heart attack. They gave me aspirin, more BP meds, and asked me questions about pain or vomiting, and I knew where they were going. They were about to rush me, by ambulance, to their main hospital(this hospital is being taken over by the one Tim uses for his MM, but is not fully open yet, just the ER and a few testing labs). Luckily, the doc checked my EKG from their records, from when I wound up in their main ER 6 weeks prior, and saw that my EKG was abnormal then. I think my EKG's have always been abnormal, least that's what I was told, but am unsure if this is a new snafu, or what.
I think I'm gonna have to walk around with EKG strips in my purse 'cause this sets off alarms every time and the docs scare the heck out of me. They then saw something new in my heart on the chest x-ray and decided to do a CT scan, with contrast, to make sure I did not pass a pulmonary embolism into my heart. ARE WE HAVING FUN YET?! I'm thinking, "it was SVT again, just send me home!" When all was said and done, I went home with orders to get back to the electrophysiologist the next day, and a HUGE, ugly bruise at the IV site.
I saw the head of the electrophysiology practice the next morning, nice guy, who said it's time to get going with this ablation procedure. Told me my risk of walking around like this is much higher than the risks of this technique and he does not want me going on vacation before it's done. OKEY DOKE. So we are setting it up for this month. Possibly the 19th. I am a bit more nervous about this SVT business, because this one was sparked off after one of my little skippy heart beats and that happens to me ALL the time. I'm also on a BP med that is supposed to stop arrhythmias, so it's a bit disconcerting that this still happened, despite that. The good thing is, I realize this procedure really is not a choice for me, and I HATE making scary decisions. Also, this doc explained things even further, and told me that if this thing is what he thinks I have (something called a bypass tract),
they will be in a safer area of my heart to fix it and the risk of damaging the good electrical nodes, and needing a pacemaker then, is pretty much non-existant. That's GOOD to know. The hardest part is upsetting my kid. That poor girl has seen way too much, in the way of medical scares, and I had to wake her up, tell her I was going to the ER, and she had to get ready for school in an empty house, and call her friend to see if her mom could give her a lift. I drive this friend home from school everyday,(her mom works) so that's not an issue, but I so wish Liv's life did not have to be so hard.
Last week, she called me into the living room. She was watching "Say yes to the dress," a show about picking out wedding gowns, and the bride-to-be's father has MM, and amyloidosis. He walked her down the aisle, then married them(he is a minister) and then spoke about how glad he was that he was still alive for her wedding. CR**. I told her that having Amyloidosis is pretty bad(though in truth, I know people doing very well with it, it depends which kind you have) and so kinda hinted like THAT was the deadly part. OIY! The older they get, the harder it is to hide things from them.
Anyway, the upside to all this heart stuff, is that I have had fainting spells and heartrate issues since I was about 12. It only took 35 LONG, screwed up years, but I think they finally have it all figured out, and I am hoping it will all be a thing of the past, once this procedure is done. I just have to believe that these scary episodes were God's way of getting me all fixed up.

For now, we are still soldiering on, just sporting a few "war wounds" it seems.

Ticker update

I went to an electrophysiologist on the 15th. I have to say, I REALLY liked this guy. Very calm, confident, and he took his time, making sure all my questions were answered. As I watched him speak, I'm thinking, "who does this guy remind me of?" I realized he looks like my brother-in-law. The good brother-in-law. Anyhoo, this is what he said: I have an extra electrical pathway in my heart. He said I've always had this. He said that this condition, and the neuro-cardio syncope, have probably been irritating/triggering each other all along. I was 19 when I started seeing doctors trying to find out why I had tachycardia and fainting spells. I am almost 47 before the whole puzzle is being figured out. My life would have been VERY different if they had put all this together years ago. Anyway, he recommended an ablation. He said that normally, in a person my age, they would just go with meds, but he did not like that my heart rate got up to 256 bpm and said that that can definitely render you unconscious(it almost did) and this is not something you want to happen on a plane or on vacation when not near a hospital. He told me some of the risks. 1% of patients wind up with damage to their normal electrical system and you wind up with a pacemaker for the rest of your life. Well, that would suck. In some people, it doesn't work all the way and they have to do it a second time. But he's confident that this will be a "knock the ball out of the park" procedure for me, and well worth it. It's actually his partner that he recommended do the surgery. He said he does LOTS of them. He said the other condition would probably improve after this ablation, and that, if not, they have medication for it that helps. But the electrical issue would be cured. I think I'm going to do it after our vacation to the shore July 4th week. I'm pretty calm about things now. He didn't seem to agree with my cardiologist that this was as deadly as he'd said it was. A woman from our MM support group meeting, 2 days later, told me that her husband had this done and that it was a piece of cake, and he'd been fine ever since. Another wife has this same condition and she was put on cardizem and it never happened again. This new doc said that the BP meds my cardiologist has put me on would help stop tachycardias, and my cardiologist had told me that. But, it's not as foolproof as going in and cauterizing the bad spot in my ticker. So that is the scoop. I have to try not to get myself riled up, in the interim. I have always noticed that big shots of adrenaline screw my heartbeat up bigtime. But, so much for staying calm, 'cause here is what happened to me today. I went to the post office, a 2 block walk from here. Took my Lacey puppy. It had rained earlier. While outside the post office, I stopped over on the side of the sidewalk(a wide walkway, our town gets a lot of foot traffic) to get all my mail together. I dash into the outside area of the post office and slip them quickly in the slot and dash out, 'cause I have the dog. Well, this guy, I'd say he was in his 30's, walked past us and I never saw him coming. Lacey jumped up to say hello and her paws hit his khakis before I could pull her back fast enough. Now, I ALWAYS make sure my dog can't jump on anyone. Some people come up and welcome it, but that is their choice. I use a VERY short leash for walks in crowds. I don't let her bother anyone. Not everyone wants puppy kisses and such.
I quickly said, "OH I am SO sorry. I did not see you coming," in an extremely apologetic tone. He walked a few steps, saw the damp, dirty footprint, and said in a really nasty tone, "THANKS!"
I threw my arms out and said, "She's a puppy." and he says to me "F*** YOU!" as he is crossing the street. Now I am mad. I said, "If this is the worst thing that happens to you today, then you're pretty lucky!" I walked home just amazed that this just happened. Sometimes, I HATE living in NJ and I have to ask here,
IS THERE ANYONE LIVING IN THIS STATE WHO IS NOT ON BLOOD PRESSURE MEDS?!!!!!!!! I mean, honestly, it was unintentional. I apologized quite heartily. I didn't see the dude coming! I go to take a little stroll to town with my doggie to run an errand and THAT is what you get. Pass me my calcium channel blockers, PUH-LEASE!

THAT'S IT!!!!!!!

Today I went back to my regular cardiologist to have my BP checked. Still too high so he is upping the meds. It's weird 'cause I get some lovely readings, like 120/78, but then still get some bad ones 140/100 or so. Guess what it was in the doc's office? Drum roll please.....180/110. How do ya like them apples?!
Talk about your white coat syndrome. Wonder what it would be at the hot dentist's office? ;o)  But, I digress. Anyway, the nurse took it when I first got in the room, and after the doc came in and spoke to me for a bit, he went to take it himself and I laughed at him. I said, "You can't think this will be lower with you here." He finished and said, "You're right, it wasn't." I can't quite figure this guy out. I know I like him better than some of the other docs in this practice but he has this way of "checking up" if the conversation gets even the least bit friendly or personal. It's so rare to see even a hint of a smile on him. The man needs a little animation. The good news was that I came right out and asked him if this ablation procedure could cure all this irregular beat and rhythm stuff I've had with my heart forever, and stop the blackouts and fainting spells that ruined half of my life. He said that it definitely could. I was
really glad to hear that. What a blessing to not have to think or deal with all that anymore, if that is indeed the case. Well, I'll know more on Tuesday, I suppose. Now, back to my blog title. Today on facebook, a woman from St. Louis posted a saying and it was a SUPER LIGHTBULB MOMENT for me. It said,  I DIDN'T LOSE MY MIND, IT GOT SCARED AND RAN AWAY. That's it folks!!!Lorna, did you hear that? That is what happened. We haven't lost our minds. They just got spooked when the sh** hit the fan and ran off on holiday for awhile. Phew!!! I feel so much better now.

And speaking about things that make your heart go pitter-pat, check out the dude my sis was standing in line with in Disney. She snapped off a few pics, solely by accident, of course! *wink*
And, the tat on his arm says USMC......YA THINK?!!!!
Disney is a magical place!  ;o)