hi guys,
I've move over to Tumblr.
I'll still post here once in awhile but come follow me on Tumblr at
http://breatheducky.tumblr.com/
Thursday, March 17, 2016
Sunday, November 29, 2015
6 Months
Yesterday was Mebsie's 6 Month Anniversary of her Double Lung Transplant! I'm so very proud of her! She has spent roughly 5 of the past 6 months in the hospital dealing with complication after complication, yet she still came out on top! I am so honored to call her my friend! It's been a long journey, and it's really just beginning, but I know she can beat anything!
2 days after transplant
2 days ago
Tuesday, November 3, 2015
California
Hi everyone.
I just wanted to do a short update. Please forgive any typos that may appear in this blog, I don't usually blog from my phone.
Anyway, I'm currently in California! It's my last night. :(
I flew out for my friend's wedding, which I was actually in! I have known this friend for over 9 years, via the Internet. But this was the first time I met her in person! She's absolutely fabulous and I had a great time with her. I wish that I could stay longer, but unfortunately she needs to be admitted to the hospital, and I'm not feeling so well either.
Her wedding was on Halloween! It was lovely and she looked beautiful. Later that night I took her and Randy (her husband) out to eat. We went in costume, of course.
That's really the whole blog, but I felt it was important enough that it had to be posted. Now have some pictures.
I just wanted to do a short update. Please forgive any typos that may appear in this blog, I don't usually blog from my phone.
Anyway, I'm currently in California! It's my last night. :(
I flew out for my friend's wedding, which I was actually in! I have known this friend for over 9 years, via the Internet. But this was the first time I met her in person! She's absolutely fabulous and I had a great time with her. I wish that I could stay longer, but unfortunately she needs to be admitted to the hospital, and I'm not feeling so well either.
Her wedding was on Halloween! It was lovely and she looked beautiful. Later that night I took her and Randy (her husband) out to eat. We went in costume, of course.
That's really the whole blog, but I felt it was important enough that it had to be posted. Now have some pictures.
Thursday, October 15, 2015
Spine clinic, Mebsie update & a puppy!
Hello blog readers,
I suppose it's time for a little update.
First, an update on Mebsie.
Mebsie, as you know, got her double lung transplant on May 28th, 2015. As many of you know she has not had an easy recovery. She has pretty much been in the hospital since transplant. (with the exception of MAYBE 2 weeks). Her complications range from complete kidney failure to pneumonia to seizures. I stayed with her in the hospital in Philly for 3 months. May 29th - Aug 29th. Then I finally had to come home and take care of my own appointments. It's really hard being away from her, especially when she's unwell. We text everyday and talk on the phone occasionally, I also am in frequent contact with the charge nurse and a social worker at the hospital. But it's not the same as being there. I'm going down for a visit tomorrow, but unfortunately it's only a one night visit because I have a new addition to my family...he's furry, and adorable, and goes by the name of Jaxon Wilson!
This brings me to my next topic, puppy!
Jaxon is 14 weeks old. He's a mini goldendoodle and he's desperately attached to his mommy! (me) He cries when I so much as leave the room. He's very sweet and playful. And he's also my future service dog! (for PTSD, social anxiety & syncope detection)
First I saw a pain management doctor (after waiting 2 months for an appointment) to try to get to the bottom of what was causing it, unfortunately this doctor did nothing for me. He wrote me 2 new prescriptions and sent me on my way. He didn't even fully examine me. He just handed me the papers and told me to come back in 2 months. Also, it should be noted that one of the medications he prescribed, I cannot even take! It's a muscle relaxer that should NEVER been taken in combination with my cardiac medications as it causes drastic drops in blood pressure, heart rate and of course, fainting. Cool, huh?
And before you jump to his defense, YES, he had my medication list in front of him. I didn't get much relief from the other medication he gave me either, so I decided to rethink things. My plan? Acupuncture. I did some research and found a local clinic near my house that does an array of neck, back & joint care. I contacted them and got an appointment 3 days later. My first visit was of course acupuncture. As well as a set of Xrays and a full evaluation. (for free!) Well when the results came in I was a bit shocked. I have a host of back problems. Scoliosis, complete with uneven hips. Compressed discs, pinched nerves, and I've also had whiplash, probably multiple times. So we began a 36 session program of massage, acupuncture, chiropractic adjustments, decompression & physical therapy. All of which is covered under my insurance, up to a point. For example, insurance only pays for 24 physical therapy & chiropractic sessions and the doctor was very confident that I needed the full 36, so what did he do? He waved the fees for the remaining sessions! All $3000!!
Anyway, I'm about 16 sessions into my program and have noticed some improvements. I'm really going to keep at my home stretches. I would love to be able to knock some of the meds off my list!
Okay, well, that's all for today. I'll leave you with some pictures of my spine.
I suppose it's time for a little update.
First, an update on Mebsie.
Mebsie, as you know, got her double lung transplant on May 28th, 2015. As many of you know she has not had an easy recovery. She has pretty much been in the hospital since transplant. (with the exception of MAYBE 2 weeks). Her complications range from complete kidney failure to pneumonia to seizures. I stayed with her in the hospital in Philly for 3 months. May 29th - Aug 29th. Then I finally had to come home and take care of my own appointments. It's really hard being away from her, especially when she's unwell. We text everyday and talk on the phone occasionally, I also am in frequent contact with the charge nurse and a social worker at the hospital. But it's not the same as being there. I'm going down for a visit tomorrow, but unfortunately it's only a one night visit because I have a new addition to my family...he's furry, and adorable, and goes by the name of Jaxon Wilson!
This brings me to my next topic, puppy!
Jaxon is 14 weeks old. He's a mini goldendoodle and he's desperately attached to his mommy! (me) He cries when I so much as leave the room. He's very sweet and playful. And he's also my future service dog! (for PTSD, social anxiety & syncope detection)
And finally, spine clinic.
As some of you know, I have been suffering with severe back pain for about 7-8 years. I have been taking pain medications for it but never really having the underlying issues treated, or even examined for that matter. I finally decided I couldn't take it anymore and I wanted to do something more.First I saw a pain management doctor (after waiting 2 months for an appointment) to try to get to the bottom of what was causing it, unfortunately this doctor did nothing for me. He wrote me 2 new prescriptions and sent me on my way. He didn't even fully examine me. He just handed me the papers and told me to come back in 2 months. Also, it should be noted that one of the medications he prescribed, I cannot even take! It's a muscle relaxer that should NEVER been taken in combination with my cardiac medications as it causes drastic drops in blood pressure, heart rate and of course, fainting. Cool, huh?
And before you jump to his defense, YES, he had my medication list in front of him. I didn't get much relief from the other medication he gave me either, so I decided to rethink things. My plan? Acupuncture. I did some research and found a local clinic near my house that does an array of neck, back & joint care. I contacted them and got an appointment 3 days later. My first visit was of course acupuncture. As well as a set of Xrays and a full evaluation. (for free!) Well when the results came in I was a bit shocked. I have a host of back problems. Scoliosis, complete with uneven hips. Compressed discs, pinched nerves, and I've also had whiplash, probably multiple times. So we began a 36 session program of massage, acupuncture, chiropractic adjustments, decompression & physical therapy. All of which is covered under my insurance, up to a point. For example, insurance only pays for 24 physical therapy & chiropractic sessions and the doctor was very confident that I needed the full 36, so what did he do? He waved the fees for the remaining sessions! All $3000!!
Anyway, I'm about 16 sessions into my program and have noticed some improvements. I'm really going to keep at my home stretches. I would love to be able to knock some of the meds off my list!
Okay, well, that's all for today. I'll leave you with some pictures of my spine.
Thursday, June 4, 2015
10 years, NEW LUNGS, Stress, and TONS of LOVE!
This post may be a little scattered because, well, my mind is. I've been meaning to post a blog for awhile now and tonight I felt extra inspired to do so. So, where to start.
10 years:
March 27th, 2015. My 26th birthday. 10 years since I lost my very first friend to Cystic Fibrosis. 10 years that I've been working to raise awareness and money. She is the reason I am, who I am. For my 10th year doing the GreatStrides walk for Cystic Fibrosis I raised roughly $1200!
NEW LUNGS:
Now for the big news! As many of you know, my best friend, "Mebsie" received her double lung transplant. On 5/28/15 (surgery went into the wee hours of the next day) It was exactly one week ago (minus 1hr) that she was wheeled into the OR. It has been a CRAZY emotional ride, and it's just the beginning. Mebsie has made tremendous progress, and I couldn't be more proud of her. She hasn't even had these lungs for a full week and she's already been sitting, standing and walking. She's already had 2 chest tubes removed. She's got color in her cheeks and power behind her voice. She is still very sleepy and in quite a bit of pain, she's still unable to eat, she's still feeling pretty miserable; but this time, it's not because of Cystic Fibrosis, but because she's healing. And soon, she'll be doing things she never could before. Soon, she'll be living the life she deserves. I'm honored to be her friend.
Mebsie will have a massive amount of bills that go along with this new life, if you wish to donate, Click Here! And don't forget to sign the guest book!
Stress:
In about 12hrs it will be one week since I "moved in" to the hospital to be with her. One week of sleeping (or not sleeping) on uncomfortable pull out chairs, one week of extremely overpriced ($10-20 per meal) and mostly unhealthy food, one week of not being able to properly elevate my swollen feet, one week of stress, anxiety and crazy nerves, one week of a single small shower shared by ALL caregivers, and one week of unrelenting back pain. Now don't get me wrong, I wouldn't change it for the world. I'd do it all over again in a heartbeat. My desire to be here for my best friend trumps all these minor inconveniences.
Tons of Love:
Due to the everything listed in the "stress" section, I did finally have a slight breakdown yesterday, and reached out to my friends (and a caregivers support group) for support. But in the hours following I was met with an unexpected outpouring of love that literally brought me to tears. I had friends send me money, to help me pay for food. I have a friend bringing me some extra clothes tomorrow. I had a perfect stranger, bring me Dunkin Donuts coffee and munchkins this morning. She had been following my updates on Mebsie in the transplant support group and was here visiting her husband, so she brought me breakfast. I had another friend pay for my dinner and have it delivered to the hospital. (it was delicious btw) I have 2 other friends assembling care packages. Another one bringing home cooked food. And yet another offering me a bed for a few nights. I have never in my life felt more loved and appreciated. I honestly couldn't (and still can't) comprehend it. So thank you all, from the bottom of my heart.
10 years:
March 27th, 2015. My 26th birthday. 10 years since I lost my very first friend to Cystic Fibrosis. 10 years that I've been working to raise awareness and money. She is the reason I am, who I am. For my 10th year doing the GreatStrides walk for Cystic Fibrosis I raised roughly $1200!
NEW LUNGS:
Now for the big news! As many of you know, my best friend, "Mebsie" received her double lung transplant. On 5/28/15 (surgery went into the wee hours of the next day) It was exactly one week ago (minus 1hr) that she was wheeled into the OR. It has been a CRAZY emotional ride, and it's just the beginning. Mebsie has made tremendous progress, and I couldn't be more proud of her. She hasn't even had these lungs for a full week and she's already been sitting, standing and walking. She's already had 2 chest tubes removed. She's got color in her cheeks and power behind her voice. She is still very sleepy and in quite a bit of pain, she's still unable to eat, she's still feeling pretty miserable; but this time, it's not because of Cystic Fibrosis, but because she's healing. And soon, she'll be doing things she never could before. Soon, she'll be living the life she deserves. I'm honored to be her friend.
Mebsie will have a massive amount of bills that go along with this new life, if you wish to donate, Click Here! And don't forget to sign the guest book!
Stress:
In about 12hrs it will be one week since I "moved in" to the hospital to be with her. One week of sleeping (or not sleeping) on uncomfortable pull out chairs, one week of extremely overpriced ($10-20 per meal) and mostly unhealthy food, one week of not being able to properly elevate my swollen feet, one week of stress, anxiety and crazy nerves, one week of a single small shower shared by ALL caregivers, and one week of unrelenting back pain. Now don't get me wrong, I wouldn't change it for the world. I'd do it all over again in a heartbeat. My desire to be here for my best friend trumps all these minor inconveniences.
Tons of Love:
Due to the everything listed in the "stress" section, I did finally have a slight breakdown yesterday, and reached out to my friends (and a caregivers support group) for support. But in the hours following I was met with an unexpected outpouring of love that literally brought me to tears. I had friends send me money, to help me pay for food. I have a friend bringing me some extra clothes tomorrow. I had a perfect stranger, bring me Dunkin Donuts coffee and munchkins this morning. She had been following my updates on Mebsie in the transplant support group and was here visiting her husband, so she brought me breakfast. I had another friend pay for my dinner and have it delivered to the hospital. (it was delicious btw) I have 2 other friends assembling care packages. Another one bringing home cooked food. And yet another offering me a bed for a few nights. I have never in my life felt more loved and appreciated. I honestly couldn't (and still can't) comprehend it. So thank you all, from the bottom of my heart.
CF walk day. (5/17/15)
2.5 days post op. (6/1/15)
Friday, September 12, 2014
Be Bigger Than Yourself! (and an update)
So, it has been a long, LONG time since I did a blog.
A ton has happened, most of which I'm not really going to get into because it's old news.
Short version: got referred to another hospital for my cardiac issues, found new heart problems, started new meds, increased those meds twice, if I increase again I'll be on the max dosage and then will be looking at surgery because my problems will continue to increase over time. I am officially on disability after over a year of fighting for it. I want to move out but realistically can't afford it, not if I want to stay in NJ (which I do). I stopped my mood stablizers due to side effects. Without them I seem to have zero motivation for anything and it's starting to bum me out. I haven't been able to travel due to my dog's health. He is 14+ years old and his health seems to go downhill if I leave. My last trip was in July, I went to the Transplant Games of America in Texas with a good friend. It was a great experience but my dog didn't handle it well. So I'm stuck home until I'm forced to go to Florida in November. (or until he dies *sadness*)
Now for the fun stuff!:
I am now an official intern for the More Than Just Me Foundation!
Why? Well because the MTJMe foundation developed something called the Saltwater Challenge. (inspired by the Ice bucket challenge) and yours truly not only participated in it but also recruited the marketing team at the global medical supply company BD to participate as well. Okay, I can't take all the credit, my mom works at BD. Anyway, roughly $600 was raised. My mom also applied for company gift matching, and it was approved. So all in all around $1100-1200 was raised. I was contacted by the founder of MTJMe with the opportunity to become an intern for them, and of course, I jumped right on that! We all know I bleed CF awareness. MTJMe focuses on raising awareness for multiple causes including helping the homeless and Cystic Fibrosis. I'm super proud to be a part of the awesomeness that is MTJMe!
Things to check out!:
My Saltwater Challenge video!
The BD Marketing Team doing the challenge!
A ton has happened, most of which I'm not really going to get into because it's old news.
Short version: got referred to another hospital for my cardiac issues, found new heart problems, started new meds, increased those meds twice, if I increase again I'll be on the max dosage and then will be looking at surgery because my problems will continue to increase over time. I am officially on disability after over a year of fighting for it. I want to move out but realistically can't afford it, not if I want to stay in NJ (which I do). I stopped my mood stablizers due to side effects. Without them I seem to have zero motivation for anything and it's starting to bum me out. I haven't been able to travel due to my dog's health. He is 14+ years old and his health seems to go downhill if I leave. My last trip was in July, I went to the Transplant Games of America in Texas with a good friend. It was a great experience but my dog didn't handle it well. So I'm stuck home until I'm forced to go to Florida in November. (or until he dies *sadness*)
Now for the fun stuff!:
I am now an official intern for the More Than Just Me Foundation!
Why? Well because the MTJMe foundation developed something called the Saltwater Challenge. (inspired by the Ice bucket challenge) and yours truly not only participated in it but also recruited the marketing team at the global medical supply company BD to participate as well. Okay, I can't take all the credit, my mom works at BD. Anyway, roughly $600 was raised. My mom also applied for company gift matching, and it was approved. So all in all around $1100-1200 was raised. I was contacted by the founder of MTJMe with the opportunity to become an intern for them, and of course, I jumped right on that! We all know I bleed CF awareness. MTJMe focuses on raising awareness for multiple causes including helping the homeless and Cystic Fibrosis. I'm super proud to be a part of the awesomeness that is MTJMe!
Things to check out!:
My Saltwater Challenge video!
The BD Marketing Team doing the challenge!
Saturday, October 26, 2013
Chronic Fever
So yeah, it's been awhile.
I'll make this short.
I've had a low grade fever ranging from 99.9-101.7 for the past 2 month.
I've seen about 5 doctors.
I've had blood draw after blood draw, 9 blood cultures, and a full cardiac work-up.
Nothing.
I have had miscellaneous symptoms but nothing is constant.
Dizziness, palpitations, random weight loss, chills, sweats, nausea, vomiting/diarrhea, fatigue..ect.
I've been put on 3 different antibiotics, all of which were stopped because there was no change, so it's best not to stay on them.
The one thing I do know is that I'm not contagious, and I'm not dying.
So yeah. The end.
I'll make this short.
I've had a low grade fever ranging from 99.9-101.7 for the past 2 month.
I've seen about 5 doctors.
I've had blood draw after blood draw, 9 blood cultures, and a full cardiac work-up.
Nothing.
I have had miscellaneous symptoms but nothing is constant.
Dizziness, palpitations, random weight loss, chills, sweats, nausea, vomiting/diarrhea, fatigue..ect.
I've been put on 3 different antibiotics, all of which were stopped because there was no change, so it's best not to stay on them.
The one thing I do know is that I'm not contagious, and I'm not dying.
So yeah. The end.
Tuesday, May 28, 2013
Sarah needs YOUR help!
"I'm not going for easy, I'm just going for possible"
- Janet Murnaghan. (Sarah's mother)
This beautiful, brave little girl is Sarah Murnaghan. Diagnosed with Cystic Fibrosis at one year old, Sarah, now at only 10 years old, is dying. She is in desperate need of a double lung transplant or she will die within weeks. Sarah has been listed for over 18 months, as pediatric lungs are very few and far between. The only thing standing in her way is a UNOS rule (United Network for Organ Sharing). This rule states that while Sarah can be listed for adult lungs she may only receive them if all other adults/adolescents (over the age of 12) in the area turn them down, regardless of how sick they are.
Sarah's parents and supporters are fighting to have that rule changed. They are not looking to take lungs from people who are sicker than Sarah, they just want to give Sarah, and other children, a fair shot at survival. If Sarah were just 2 years older, she would, most likely, have gotten her life saving transplant by now.
Sarah's story has been taken up by many news channels, here is just one of the interviews.
Another news story
Ways you can help:
Sign the petition!
SHARE her story!
Facebook, twitter, word of mouth, they all help. The more people we reach, the better the chance that we get this rule changed!
and of course,
Register to become an Organ Donor, today!
Click here to learn more about Cystic Fibrosis!
Wednesday, March 13, 2013
it's been awhile..
I suppose it has been awhile since I last posted. I'm not really sure what to post, things haven't been good.
Going through a lot of physical and emotional struggles. I've been doing physical therapy for my back, this should be the last week of that actually. Mentally I'm not really sure if I can fully put into words at this time. But to sum it up, I've been feeling like a total and complete let down to my family. I feel like they drew the short straw, got the raw end of the deal, that type of thing.
yeah, I'm done for now. just wanted to post something.
Going through a lot of physical and emotional struggles. I've been doing physical therapy for my back, this should be the last week of that actually. Mentally I'm not really sure if I can fully put into words at this time. But to sum it up, I've been feeling like a total and complete let down to my family. I feel like they drew the short straw, got the raw end of the deal, that type of thing.
yeah, I'm done for now. just wanted to post something.
Thursday, December 13, 2012
Momma Duck
just a quick
recap of what has been going on with my mom. in no particular order. (and
grammatically incorrect lol.)
I also have no idea why the hell it keeps posting with the white background thing. GRRR
I also have no idea why the hell it keeps posting with the white background thing. GRRR
Mom had been sick for 7 weeks with pneumonia. she ended up in the hospital.
they still
don't know what she has. they do know it's NOT contagious. they sent samples of
everything to a few different places (CDC..ect)
but she saw 3 different pulmos and they all had the same
reaction..."wow" and my mom was like "is that a good wow or a
bad wow?" obviously it was a bad wow.
her sats had
been stable and then one day they randomly went to the low 80s on 2L of o2. so
they did a bronch and sucked out over 3 cups of mucus. when I met with her
pulmo (the one she ended up staying with) I asked about different
diseases/conditions and tests and results. he actually said the words
"you know too much" after he left my mom goes "okay..what did
you say and what did he say?" he actually said the words "you know
too much".
once she was
"stable" her docs decided it was safer to send her home to be in my
"fully capable hands" than to have her stay there and risk
contracting another infection. if she gets sick again in the next few months it
could end really bad. I had to order her a HEPA filter mask for if she leaves
the house (for dr appointments and such, also for when the construction starts
on my house (from hurricane sandy)) she's not allowed to go Xmas or grocery
shopping, or anywhere with big crowds without her HEPA mask. and I went over
the house with the pledge & antibacterial wipes. she's always had a
pretty non existent immune system (respiratory wise). and no one really knows
why since her blood cell count is fine. years ago her doc told her she had
Chronic Bronchitis (a type of COPD) but her new pulmo said that was unlikely
since she never smoked. although when he did the bronch he said it did have the
appearance of COPD. (you can now see why my health is so stubborn lol)
anyway, the
doc said it will be a few months before she even starts to get back to normal.
=[
so yeah,
that's what's going on with momma duck.
P.S. funny
story.
my mom wanted
a mask attachment for her neb so she can read while she does treatments. so my
dad, trying to be helpful, went to the pharmacy and got one. my mom comes into
my room later and goes "dad got me a mask for the neb but I can't seem to
figure out how to get it on" I go upstairs and look at it. Silly daddy got
a Pari mask which doesn't fit on regular nebs. my mom turns to my dad and goes "I
appreciate the effort hun, but leave the lung stuff to the kid"
I love my
family
Friday, October 26, 2012
My Fighting Zebra
My Fighting Zebra, Melissa, is finally at rest.
Melissa went into hospice in early March, and was not expected to last more than a few days.
but true to form, she managed to make it for another 7 months.
It is hard to explain the feelings I have right now. Of course it is heartbreaking to lose someone like her, but at the same time, I know she was ready to be free of pain. In a way, I was ready too.
After watching her suffer in pain and struggle to breathe for so long, peace became the blessing. We had talked about it many times, knowing there was no amount of medicine that could even take the edge off and that there was no chance of improvement, we began accept and even welcome the "end".
Melissa was a true inspiration to anyone that knew her. Despite her illness she always managed to smile and laugh; And those around her couldn't help but do the same. Her joy was contagious and she brought out the best in people. Melissa's love for her family and friends was second to none, her loyalty and generosity unmatched. She had a heart of pure gold. Not a day will go by without me remembering her. I have only known her for about 3 years but in that time our bond became one of the strongest I've ever had.
Zebra & Ducky.
Best Friends Forever.
Breathe Easy my Fighting Zebra,
may you finally have the peace you deserve.
March 12th, 1983 - October 24th, 2012
Saturday, September 8, 2012
Delightful Dying with Daniella
yeah, it started with D puking. IN MY CAR!!! (well first there was the driving in insane rain, but I'm used to that)
...well...she puked in a bag, which of course had a hole in it. so needless to say as soon as I pulled over....I puked. (due to my newly unimproved gag refles) so yeah, there was a rite aid across the street. we went in and got some resolve, some paper towels & lysol. after we sprayed down my car we then walked into this crazy/cheap/trashy clothing store because D puked all over herself. so she was forced to wear pants that said "sexy girl" down the leg. I LOLd.
but yeah, then we had to ask someone for directions to the hiking place (the GPS wouldn't find it) so I found this guy who seemed confident he knew where it was, of course he was wrong. I finally pulled over once we had nearly gotten back to the highway. I used the GPS in my phone and found it. we finally got there, checked in and wandered off to the trail. when I stopped for lunch D just munched on some bread crusts for fear of puking again. then randomly she felt fine. which was awesome.
we followed the trail like good little hikers, it was full of super steep paths. we got to this one point and bam, we lost the trail. I decided to wander down to the waterfall to take pix and then we could just head back in the direction we came. and I noticed a random tree with blue on it (we were on the blue trail) so I looked around and finally found some other trees with blue. we start following them and come to marker number 15, which is supposedly the end of the trail but it's like....in the middle of the woods. so we're like WTF. I kept following the blue and found marker number 14. and I was like...ARE YOU SERIOUS. so somehow we wandered off the trail, and landed on the other side of it, which still ended in the middle of the woods. so we followed the trail (I guess backwards) and since it was backwards it was allllll up the steep hills. we finally came to the place where we lost the trail. and I'm like "how did we miss this, the trail is clearly marked" well when we got to the top of the hill and looked down the trail we just climbed....guess what, they marked the wrong side of the trees. therefore standing at the top of the hill, you would have no idea that that was the trail (there are other unmarked trails all over so it's hard to tell where you're supposed to go without the markers) so yeah, we decided to just go back up through to the beginning of the trail (ALL the uphill) which still leaves me with the question "WHY THE HELL DID THE TRAIL END IN THE MIDDLE OF THE WOODS"
and yeah, WE WERE DYINGGGGGGGGGG. I also managed to sweat through 3 shirts, my pants & the straps of the backpack I had on. Heat and humidity are not my friends.
So we get back to the main building, I checked us out, and as I'm getting into the car, the sky opens up into a massive thunderstorm. freakin POURING. but whatever, we get back onto the highway. and guess what, suddenly the world forgot what rain is. D & I were joking that everyone was like "what is this mysterious liquid falling from the sky? how do we act? what do we do?" point being, we passed a plethora of accidents. (one of which JUST happened, like right in front of us, and another one was just a single car that spun out and destroyed itself, the driver had already been taken away in the ambulance by the time we got to it) and yeah. there were just idiots everywhere. seriously, people forgot how to drive.
so of course as we're driving home D's grandma calls saying they have dinner reservations at 5:30....our ETA is 5:50. so we're like freaking out. hahaha. they got the reservations changed to 6 something but she still had to be home by 6. well yeah, we got back to my house at 6:03. then D had to drive to her house, and change, by 6:15. I mean she lives around the corner, but still lol.
Also, my gas light decided to come on and I was like AHHHHHHHH. but that is a problem for another day. THE END
Sunday, August 26, 2012
Rape
This is a serious post that I felt the need to post because I'm pretty fed up with people these days.
Rape.
Rape is NOT a joke. under any circumstances. I don't care if you think you're being funny, I don't even care if you're quoting someone or something else. If you feel the need to bring it up, do so with 1 or 2 people who you know very well. Rape should never be brought up in a social setting, a room full of people, some of whom you don't know. You have no idea who could be in that room. You don't know if someone in that room was raped. Recently or in the past, rape scars you for life. Anyone who has gone through this horrific experience, knows all too well that their life was changed forever. And to hear someone, whether it be a stranger or a friend, "joke" about rape. It hurts. A lot. It can trigger flash backs, fits of rage and overwhelming emotions.
For those of you who don't know, I was raped July 5th, 2005. I was 16. I knew the person, I was dating him. I never pressed chargers. I didn't even tell anyone for years. I regret not going to the police now, and I would advice others in the situation to do so. It will be hard at first, and that is what I was afraid of. But in the end, it will be worth it. Especially if you go to the police right after it happened. The more evidence the better. It will result in the man being put in jail and marked as a sexual predator for life. Which can help keep it from happening to someone else.
Conclusion:
If you are someone who feels the need to joke about rape, or speak lightly of it, learn to think before you open your mouth. You may not be trying to be hurtful or offensive but I assure you, you are! Honestly, it is not something that should ever be joked about regardless of where you are. But if you're stupid enough to do so, you're probably not bright enough to even realize how ignorant & heartless you sound.
If you have been raped....I urge you to seek help, even if you choose not to go to the police, talk to someone about it, family, a friend, a therapist. Don't wait, it just makes it harder.
Rape.
Rape is NOT a joke. under any circumstances. I don't care if you think you're being funny, I don't even care if you're quoting someone or something else. If you feel the need to bring it up, do so with 1 or 2 people who you know very well. Rape should never be brought up in a social setting, a room full of people, some of whom you don't know. You have no idea who could be in that room. You don't know if someone in that room was raped. Recently or in the past, rape scars you for life. Anyone who has gone through this horrific experience, knows all too well that their life was changed forever. And to hear someone, whether it be a stranger or a friend, "joke" about rape. It hurts. A lot. It can trigger flash backs, fits of rage and overwhelming emotions.
For those of you who don't know, I was raped July 5th, 2005. I was 16. I knew the person, I was dating him. I never pressed chargers. I didn't even tell anyone for years. I regret not going to the police now, and I would advice others in the situation to do so. It will be hard at first, and that is what I was afraid of. But in the end, it will be worth it. Especially if you go to the police right after it happened. The more evidence the better. It will result in the man being put in jail and marked as a sexual predator for life. Which can help keep it from happening to someone else.
Conclusion:
If you are someone who feels the need to joke about rape, or speak lightly of it, learn to think before you open your mouth. You may not be trying to be hurtful or offensive but I assure you, you are! Honestly, it is not something that should ever be joked about regardless of where you are. But if you're stupid enough to do so, you're probably not bright enough to even realize how ignorant & heartless you sound.
If you have been raped....I urge you to seek help, even if you choose not to go to the police, talk to someone about it, family, a friend, a therapist. Don't wait, it just makes it harder.
Friday, August 17, 2012
Happy 23rd Birthday Cindles
The memories we made will last forever.
Days and nights spent together.
Thick and thin we stood strong.
Through happiness and laughs, through struggles and tears.
Our friendship rose above it all.
The sound of your voice, the feel of your hugs,
your light that always shown through.
I'd give anything to have that back, to see your face once more.
But I'll keep you always in my heart, until we meet again.
Happy 23rd Birthday my Beautiful CF Warrior.
♥
Days and nights spent together.
Thick and thin we stood strong.
Through happiness and laughs, through struggles and tears.
Our friendship rose above it all.
The sound of your voice, the feel of your hugs,
your light that always shown through.
I'd give anything to have that back, to see your face once more.
But I'll keep you always in my heart, until we meet again.
Happy 23rd Birthday my Beautiful CF Warrior.
♥
I miss you. so so so so so so so much.
it still hurts like it was yesterday.
you mean the world to me
♥
Breathe Easy angel
Breathe Easy angel
Tuesday, July 31, 2012
FINALLY! ANSWERS! (and more)
Cardiac:
So yeah, had a pacemaker check, electrophysiologist & cardiologist today.
next 2 pacemaker checks are oct 30th & january...4th? lol I forget.
also, epic, EPIC news.
for 7 years I've had a "mystery" heart issue that doctors couldnt quite figure out that has kept me from exerting much energy. my mom & I had begun to accept that this was as good as it was going to get. but guess what. THEY FINALLY FOUND IT!
along with the Afib which we already knew I had, the also found PVC (Premature ventricular contraction) (also know as Premature Ventricular Complex or Premature Ventricular Beat)
and to make things better. It can most likely be treated!
I start medication tomorrow, at a small dose 4xs a day. With a follow up appointment September 5th. If I'm responding well to the meds they will increase the dose until I get stabilized.
I was so excited. I cried. I can't believe they finally found it!
it was such great timing too, since I brought my cardiologist a present today, and today, she deserved it 100 times over! I freakin love her <3
Cardiac love:
Also on a side note, one of my best friends, Ann, who I have known for 7-8yrs is finally coming up from Virginia to visit. She is a heart patient as well, my #1 CHD sister! I'm going to be a brides maid in her wedding and this is the first time we're meeting in person. its true love right here.
Anxiety:
I didn't really get any good news as far as anxiety. It has been really bad lately but I can only take low dose Ativan. Unfortunately due to all my heart issues, I can't take anything else. not happy about that, but ya win some ya lose some I guess...
(GIRLS ONLY)
I also got the clear from the cardiologist to take birth control, as long as its estrogen only. Gyno is hoping this will ease my back pain. which would be totally awesome. She did find some other abnormalities, so I'll see her again in a month. *Fingers Crossed*
So yeah, had a pacemaker check, electrophysiologist & cardiologist today.
next 2 pacemaker checks are oct 30th & january...4th? lol I forget.
also, epic, EPIC news.
for 7 years I've had a "mystery" heart issue that doctors couldnt quite figure out that has kept me from exerting much energy. my mom & I had begun to accept that this was as good as it was going to get. but guess what. THEY FINALLY FOUND IT!
along with the Afib which we already knew I had, the also found PVC (Premature ventricular contraction) (also know as Premature Ventricular Complex or Premature Ventricular Beat)
and to make things better. It can most likely be treated!
I start medication tomorrow, at a small dose 4xs a day. With a follow up appointment September 5th. If I'm responding well to the meds they will increase the dose until I get stabilized.
I was so excited. I cried. I can't believe they finally found it!
it was such great timing too, since I brought my cardiologist a present today, and today, she deserved it 100 times over! I freakin love her <3
Cardiac love:
Also on a side note, one of my best friends, Ann, who I have known for 7-8yrs is finally coming up from Virginia to visit. She is a heart patient as well, my #1 CHD sister! I'm going to be a brides maid in her wedding and this is the first time we're meeting in person. its true love right here.
Anxiety:
I didn't really get any good news as far as anxiety. It has been really bad lately but I can only take low dose Ativan. Unfortunately due to all my heart issues, I can't take anything else. not happy about that, but ya win some ya lose some I guess...
(GIRLS ONLY)
I also got the clear from the cardiologist to take birth control, as long as its estrogen only. Gyno is hoping this will ease my back pain. which would be totally awesome. She did find some other abnormalities, so I'll see her again in a month. *Fingers Crossed*
Tuesday, July 17, 2012
Health. Stress. Chaos.
WARNING THIS BLOG IS SUPER LONG.
I wasn't really sure where to mention this but basically the entire remainder of the month of July is all doctor appointments. *le sigh*
As many of you know, I got my new pacemaker last week. that in itself was a fiasco. but I'm not going to post the whole thing here, its on my caringbridge anyway.
So yeah, I've been dealing with a ton of stress lately.
Trying to get all this disability/legal crap taken care of & being broke all the time doesn't help.
But this is basically what's going on on the health front:
I had a bit of a traumatic event happen this past week that I really have only talked with my mom about. Every time I so much think about it I start crying.
There are also a few anniversaries of friends passing. which happens often. as well as it being Cindy's birthday a month from today. My anxiety level has been through the roof, I'm constantly shaking & sweating.
now moving on.
like I said, I had my surgery last week (1 week ago tomorrow). I had my heart set on this new pacemaker taking care of all my problems and making me feel almost "normal" again. I know that was a stupid way to think about it, because realistically I know that A-fib & my pacemaker stuff aren't really related.
so yeah, I got the new pacemaker. and the next day was great, I went up the stairs twice in a row...just for fun. and because I could. unfortunately that was short lived and I'm back to not being able to much at all. During the last few weeks with the old pacemaker, the pacemaker was on "safe mode" (safe mode is explained in my previous blog). so for the most part I was pretty stationary. In a wheelchair, dropped off by buildings so I wouldn't have to walk, even a shower chair. What I'm getting at is a didn't really exert myself enough to cause many episodes of A-fib. That's a good thing, right? NO. it's not. during that time I was on a 30 day heart monitor to monitor the frequency of my A-fib episodes, but due to the fact that I wasn't triggering many, I obviously didn't get many recorded. Thus having it during that time was somewhat pointless. I'll probably end up needing to do it again. not that it matters. but I would have liked to have at least part of my summer to enjoy and not worry about trying not to kill myself.
so yeah back to the whole "thinking the pacemaker would fix everything" part of this. I did. and it was stupid of me. because while my heart rate can actually keep up with me if I do something like go up the stairs (meaning I can put forth bursts of energy when needed) but overall, I still have no energy. extended walking still exhausts me. and I'm just tired all the time. (what's worse is, having insomnia, I cant sleep at night. ever.)
so I see both the electrophysiologist (pacemaker doctor) & my cardiologist on the 31st for some follow ups. and also to find out if I need another heart monitor or if she got enough info from the last one. I'm hoping she did because I would now like to find out what my treatment options are. I know there are some medications. most of which I need to be off mood stabilizers in order to take (which sucks, but its the lesser of the 2 evils I guess). I will also need to be admitted to start these meds because they need to watch how my body, with all its issues, will react to the new meds. Then we need to HOPE that medication will help, because in some cases, it doesn't. I'm not sure I'm ready for some of the alternative treatments. At least not yet.
So I'm just really hoping meds will fix it. because if not, I'm facing either painful treatment or living with it. neither choice will be very easy for me.
Now. moving on.
While I usually don't consider a dentist appointment to be a very big deal, due to my current stress level and the fact that the dental situation I'm in now could have been prevented if my former dentist knew what the fuck he was doing. all in all I have 8 cavities. and they can't use the usual numbing medications on me due to my heart problems. so yeah. it is incredibly, incredibly unpleasant. I had 5 of them filled today, which was....ugh. the poor woman felt so bad because she knew she was hurting me. (which obviously wasn't her fault).
I also saw the Oral Surgeon today. He did some xrays and told me that I certainly need my wisdom teeth taken out, to which I replied "I could have told you that". anyway, the bottom ones are impacted. top ones are not, however they're growing sideways because they cant fit in my mouth.
here is the funny part. his original plan was to do the removal with just a numbing medication. after explaining all that to my mom he turns to me and goes "assuming that's okay with you?" and I was like "uhhh. NO! not at all!" so he now needs clearance from my cardiologist to put me under (which won't be a problem) so that part is taken care of. I just found it humorous that he thought I was going to be okay with that.
Finally, as most of you know. I suffer from ABSURD amounts of back pain. almost constantly. if you're a doctor and are currently thinking of the question that always comes next: "Where would you say you're at on a scale of 1-10 with 1 being the lowest?" my answer would be "somewhere between 6-9" because while it is always there, I'm not always in tears over it. on average I'd say 7ish. but it gets worse at night (part of the reason I don't sleep)
NOW IF YOU ARE A MALE, DO NOT READ THE NEXT PARAGRAPH....
you have been warned!
I will tell you when its safe to read again.
I'm going to see a Gyn for the first time ever on thursday, as I'm about 85% sure my back pain is related to my girly parts. there a few reasons why. I've had this problem for years but as I've gotten older, its gotten worse. by like....A FUCK TON. lol. It gets even worse for the weeks or so before I get my period. Then it seems to stop during the 3 days that I'm bleeding most heavily. Then it comes back full force the last day of my period and continues on all month, increasing again before my next period. and the cycle continues.
My moms is thinking I have a tilted uterus or there is a swelling problem. I'm not really sure because I really don't know anything about Gynecology. like I said, I've never been to one. I do know, that I've never been able to insert a tampon properly. I have used them for the past....4-5 years or so. but I've never been able to bend, sit, or move too much while wearing one. I just recently (like 2 months ago) figured out how to get it in so it doesn't hurt, and that works maybe 70% of the time.
My concern is that she will tell me it's something that she can't do anything about. I will honestly lose it. because I can't take it anymore. You may think I'm exaggerating but anyone who has spent extended periods of time with me can tell you how much pain I'm in.
MALES, IT IS NOW SAFE TO READ AGAIN....
Again, you may think I'm exaggerating but anyone who has spent extended periods of time with me can tell you how much pain I'm in.
There are a few things I am able to do to lessen the pain, but none of it lasts very long.
heating pads work if the pain isn't absurd. stretching helps for about 20mins or so, then the pain comes back. walking helps while I'm doing it. but once I stop the pain comes back. sleeping on hard, flat surfaces help for a day or so but after that, it doesn't matter where I lay down. I will sill be in pain. Massage helps but again, it lasts for maybe a day at best. And in case you forgot, I'm broke and can't afford to keep getting massages.
Tylenol & Advil don't do jack shit. I have a prescription muscle relaxer which doesn't do much at all. and I have a prescription for oxycodone. which does work. but I really don't want to be relying on that. I take less than I'm supposed to because I'm afraid of getting addicted to it. and my doctor is reluctant to give it to me, for the same reason.
So in the event that this new doctor I'm going to see tells me she can't do anything, I'm going to try acupuncture, which I'm wanted to try for a long time. and if that doesn't work I'll go see a pain management specialist. and lets hope that works.
because if not, then I'm out of ideas and out of hope.
I wasn't really sure where to mention this but basically the entire remainder of the month of July is all doctor appointments. *le sigh*
As many of you know, I got my new pacemaker last week. that in itself was a fiasco. but I'm not going to post the whole thing here, its on my caringbridge anyway.
So yeah, I've been dealing with a ton of stress lately.
Trying to get all this disability/legal crap taken care of & being broke all the time doesn't help.
But this is basically what's going on on the health front:
I had a bit of a traumatic event happen this past week that I really have only talked with my mom about. Every time I so much think about it I start crying.
There are also a few anniversaries of friends passing. which happens often. as well as it being Cindy's birthday a month from today. My anxiety level has been through the roof, I'm constantly shaking & sweating.
now moving on.
like I said, I had my surgery last week (1 week ago tomorrow). I had my heart set on this new pacemaker taking care of all my problems and making me feel almost "normal" again. I know that was a stupid way to think about it, because realistically I know that A-fib & my pacemaker stuff aren't really related.
so yeah, I got the new pacemaker. and the next day was great, I went up the stairs twice in a row...just for fun. and because I could. unfortunately that was short lived and I'm back to not being able to much at all. During the last few weeks with the old pacemaker, the pacemaker was on "safe mode" (safe mode is explained in my previous blog). so for the most part I was pretty stationary. In a wheelchair, dropped off by buildings so I wouldn't have to walk, even a shower chair. What I'm getting at is a didn't really exert myself enough to cause many episodes of A-fib. That's a good thing, right? NO. it's not. during that time I was on a 30 day heart monitor to monitor the frequency of my A-fib episodes, but due to the fact that I wasn't triggering many, I obviously didn't get many recorded. Thus having it during that time was somewhat pointless. I'll probably end up needing to do it again. not that it matters. but I would have liked to have at least part of my summer to enjoy and not worry about trying not to kill myself.
so yeah back to the whole "thinking the pacemaker would fix everything" part of this. I did. and it was stupid of me. because while my heart rate can actually keep up with me if I do something like go up the stairs (meaning I can put forth bursts of energy when needed) but overall, I still have no energy. extended walking still exhausts me. and I'm just tired all the time. (what's worse is, having insomnia, I cant sleep at night. ever.)
so I see both the electrophysiologist (pacemaker doctor) & my cardiologist on the 31st for some follow ups. and also to find out if I need another heart monitor or if she got enough info from the last one. I'm hoping she did because I would now like to find out what my treatment options are. I know there are some medications. most of which I need to be off mood stabilizers in order to take (which sucks, but its the lesser of the 2 evils I guess). I will also need to be admitted to start these meds because they need to watch how my body, with all its issues, will react to the new meds. Then we need to HOPE that medication will help, because in some cases, it doesn't. I'm not sure I'm ready for some of the alternative treatments. At least not yet.
So I'm just really hoping meds will fix it. because if not, I'm facing either painful treatment or living with it. neither choice will be very easy for me.
Now. moving on.
While I usually don't consider a dentist appointment to be a very big deal, due to my current stress level and the fact that the dental situation I'm in now could have been prevented if my former dentist knew what the fuck he was doing. all in all I have 8 cavities. and they can't use the usual numbing medications on me due to my heart problems. so yeah. it is incredibly, incredibly unpleasant. I had 5 of them filled today, which was....ugh. the poor woman felt so bad because she knew she was hurting me. (which obviously wasn't her fault).
I also saw the Oral Surgeon today. He did some xrays and told me that I certainly need my wisdom teeth taken out, to which I replied "I could have told you that". anyway, the bottom ones are impacted. top ones are not, however they're growing sideways because they cant fit in my mouth.
here is the funny part. his original plan was to do the removal with just a numbing medication. after explaining all that to my mom he turns to me and goes "assuming that's okay with you?" and I was like "uhhh. NO! not at all!" so he now needs clearance from my cardiologist to put me under (which won't be a problem) so that part is taken care of. I just found it humorous that he thought I was going to be okay with that.
Finally, as most of you know. I suffer from ABSURD amounts of back pain. almost constantly. if you're a doctor and are currently thinking of the question that always comes next: "Where would you say you're at on a scale of 1-10 with 1 being the lowest?" my answer would be "somewhere between 6-9" because while it is always there, I'm not always in tears over it. on average I'd say 7ish. but it gets worse at night (part of the reason I don't sleep)
NOW IF YOU ARE A MALE, DO NOT READ THE NEXT PARAGRAPH....
you have been warned!
I will tell you when its safe to read again.
I'm going to see a Gyn for the first time ever on thursday, as I'm about 85% sure my back pain is related to my girly parts. there a few reasons why. I've had this problem for years but as I've gotten older, its gotten worse. by like....A FUCK TON. lol. It gets even worse for the weeks or so before I get my period. Then it seems to stop during the 3 days that I'm bleeding most heavily. Then it comes back full force the last day of my period and continues on all month, increasing again before my next period. and the cycle continues.
My moms is thinking I have a tilted uterus or there is a swelling problem. I'm not really sure because I really don't know anything about Gynecology. like I said, I've never been to one. I do know, that I've never been able to insert a tampon properly. I have used them for the past....4-5 years or so. but I've never been able to bend, sit, or move too much while wearing one. I just recently (like 2 months ago) figured out how to get it in so it doesn't hurt, and that works maybe 70% of the time.
My concern is that she will tell me it's something that she can't do anything about. I will honestly lose it. because I can't take it anymore. You may think I'm exaggerating but anyone who has spent extended periods of time with me can tell you how much pain I'm in.
MALES, IT IS NOW SAFE TO READ AGAIN....
Again, you may think I'm exaggerating but anyone who has spent extended periods of time with me can tell you how much pain I'm in.
There are a few things I am able to do to lessen the pain, but none of it lasts very long.
heating pads work if the pain isn't absurd. stretching helps for about 20mins or so, then the pain comes back. walking helps while I'm doing it. but once I stop the pain comes back. sleeping on hard, flat surfaces help for a day or so but after that, it doesn't matter where I lay down. I will sill be in pain. Massage helps but again, it lasts for maybe a day at best. And in case you forgot, I'm broke and can't afford to keep getting massages.
Tylenol & Advil don't do jack shit. I have a prescription muscle relaxer which doesn't do much at all. and I have a prescription for oxycodone. which does work. but I really don't want to be relying on that. I take less than I'm supposed to because I'm afraid of getting addicted to it. and my doctor is reluctant to give it to me, for the same reason.
So in the event that this new doctor I'm going to see tells me she can't do anything, I'm going to try acupuncture, which I'm wanted to try for a long time. and if that doesn't work I'll go see a pain management specialist. and lets hope that works.
because if not, then I'm out of ideas and out of hope.
Friday, June 22, 2012
more pacemaker drama & vacation
So as you all know, my pacemaker is dying, and I've been fighting with the docs/insurance companies to get it changed.
the insurance companies like to wait until the last min (when the pacer goes into safe mode)
well I had a pacemaker check scheduled for June 19th. and my genius ass missed the appt. so I called them later that day to reschedule. we ended up rescheduling for yesterday. and (as I suspected) they decided to tell me its time for surgery, the battery needs to be replaced. well of course they tell me that then. because I was scheduled to leave for FL this morning.
anyway, these are my posts from yesterday:
"I KNEW this was going to happen!!!!!!!!!
the but NO! they wouldn't listen to me!
pacemaker people said I need the battery replaced!
and of course I leave for FL tomorrow morning. or at least I'm supposed to!
UGGGGGH! they're gonna call me back in a few mins to let me know if I can still go!"
&
"UPDATE:
I officially CAN go to FL, however,
no matter what I do (in her words) "you could run a marathon and your heart rate wont get over 65"
the insurance companies like to wait until the last min (when the pacer goes into safe mode)
well I had a pacemaker check scheduled for June 19th. and my genius ass missed the appt. so I called them later that day to reschedule. we ended up rescheduling for yesterday. and (as I suspected) they decided to tell me its time for surgery, the battery needs to be replaced. well of course they tell me that then. because I was scheduled to leave for FL this morning.
anyway, these are my posts from yesterday:
"I KNEW this was going to happen!!!!!!!!!
the but NO! they wouldn't listen to me!
pacemaker people said I need the battery replaced!
and of course I leave for FL tomorrow morning. or at least I'm supposed to!
UGGGGGH! they're gonna call me back in a few mins to let me know if I can still go!"
&
"UPDATE:
I officially CAN go to FL, however,
no matter what I do (in her words) "you could run a marathon and your heart rate wont get over 65"
so basically I'm not allowed to do ANYTHING remotely strenuous. wheelchair in airport. no beach walking. no kayaking, no swimming. nothing =\ which kinda sucks. but at least I can go!"
Recap: battery is in safe mode, meaning HR wont get over 65, and it is only pacing the ventricles (usually mine paces the atria as well)
I can't really do anything physical
my appointment with my electrophysiologist is scheduled for the 17th. and he'll probably schedule the surgery for the next day. I also still have my heart monitor on 24hrs a day for 2 more weeks due to the A-fib.
but I'm here in FL now. so I'm a happy duck!
Friday, May 25, 2012
Cardiac Update
So today I had a cardiologist appointment.
Found out quite a few things,
1. my atrial wire is NOT shot!
2. still cant change pacemaker.
3. I'm having major A-fib.
4. med changes are needed.
5. surgery will be same day :)
So we are setting me up with a heart monitor, and starting a few new meds. one of the meds (anti-arrythmic) I need to be hospitalized for a few days to start so we'll plan that.
another med is baby asprin, which even though its a tiny, tiny dose, I'm still nervous about because as some of you may remember, I had quite a problem with asprin once before.
ambulance, liver failure, kidney failure, lost my hearing, landed myself in ICU for a few days. but I think it will be fine. I'm just nervous.
I will also be starting another medication to maintain an even pulse.
in order to start the first one, I need to come off my mood stablizer. so I started decreasing that today, and will stop it on tuseday. Not sure what they'll put me on in place of that. but I suppose we'll figure something out.
I see my cardiologist & electrophysiologist on the same day, in 6wks. after my 30 day heart monitor. so hopefully by then we'll have figured out what meds I'll be taking.
June is a busy month for me, and I need to be feeling my best. so fingers crossed everything gets fixed! lol
the endddddddd.
Tuesday, May 8, 2012
Pacemaker/Heart Transplant
Ridiculously pissed off! They wont change the damn pacemaker yet! I legit cried in front of them and it triggered an arrhythmia, but nope! They won't change it because it's not in the "safe mode" meaning I won't drop dead due it failing.
but I am beyond upset. My current quality of life is CRAP! I can hardly leave my house anymore. If the simple act of crying causes A-Fib, you can imagine what actual exercise would do. but anyway, they say it has "1-5 months" so I'm stuck like this until PROBABLY August. Which infuriates me. But we are going to speak with my cardiologist to see if she can talk them into doing it, because the main problem right now is the Atrial wire. It's pretty much fried, and I've been having a FUCK ton of A-Fib.
My mom is at the point where she's ready to take me back to New York Presbyterian. I'm honestly gonna start a petition, not just for me, but for anyone with a pacemaker. It's not all about how it looks on paper but how I FEEL! Quality of life! Its absurd! Perhaps in old people they dont notice the lack of energy as much because well...they're old, and things have slowed down for them a bit anyway. But in young people, it makes a HUGE difference!
While my mom was at a conference in New Orleans last week, she met with & had lunch with 2 DOCTORS. not lay people. but DOCTORS. She was telling them about whats going on with my pacemaker. One of the doctors asked her, "why don't they just do a heart transplant?". My mom was pretty much speechless.
(If you are a lay person, and don't understand the reasoning, I shall explain: if I had a pacemaker & ICD and was still not doing well THEN they would resort to transplant. But as of now I don't even have an ICD. And for the most part.(except for when my battery / wire are fried.) I do Okay. (not including lung probs) To do a heart transplant would mean I'd be in for a lifetime of anti-rejection medication, I would never be able to have kids (due to these meds) would probably need another one about every 10 years. Chances are I would be dead by 40. at this rate I can live until 64. (although this is speaking strictly cardiac, and given my lungs & other events that may come into play, 64 is highly unlikely)
anyway, theres the update.
My mom is at the point where she's ready to take me back to New York Presbyterian. I'm honestly gonna start a petition, not just for me, but for anyone with a pacemaker. It's not all about how it looks on paper but how I FEEL! Quality of life! Its absurd! Perhaps in old people they dont notice the lack of energy as much because well...they're old, and things have slowed down for them a bit anyway. But in young people, it makes a HUGE difference!
While my mom was at a conference in New Orleans last week, she met with & had lunch with 2 DOCTORS. not lay people. but DOCTORS. She was telling them about whats going on with my pacemaker. One of the doctors asked her, "why don't they just do a heart transplant?". My mom was pretty much speechless.
(If you are a lay person, and don't understand the reasoning, I shall explain: if I had a pacemaker & ICD and was still not doing well THEN they would resort to transplant. But as of now I don't even have an ICD. And for the most part.(except for when my battery / wire are fried.) I do Okay. (not including lung probs) To do a heart transplant would mean I'd be in for a lifetime of anti-rejection medication, I would never be able to have kids (due to these meds) would probably need another one about every 10 years. Chances are I would be dead by 40. at this rate I can live until 64. (although this is speaking strictly cardiac, and given my lungs & other events that may come into play, 64 is highly unlikely)
anyway, theres the update.
Thursday, May 3, 2012
My Dear Alan
My dearest Alan,
Today (5/3/12) marks 3 weeks that you're gone and I've been struggling with what to write to you.
You were/are by far one of the most amazing people I've ever been lucky enough to call a friend.
I will forever cherish that day we met (in person) May 25th, 2011. (even though Alli couldn't come =(...)
It was less than one year ago, and even though it was raining and my mom felt the need to tour an old church, we still had fun. And of course, who could forget that terrifying ride in the Ferris-wheel, it was bad enough that I'm afraid of heights, plus the rain didn't help. But it was time together and I will never forget that day.
And when I think of you
I will forever think of those skype chats we had for days at a time.
I will forever think of how loyal a friend, how devoted a husband to Alli, and how pure at heart you were.
I will think of all those times you were there for me, no matter what hour. You listened to what I had to say, never once did you judge me. I could tell you things I couldn't tell anyone else and know that it was safe.
I will forever think of the laughs we shared.
I will forever think of you when I hear a P!nk song. (especially "Perfect")
I know that my life, will never be the same.
You left a hole in my heart that will never be repaired. And while I am comforted to know you are finally at peace, it still hurts to know you're gone.
I love you more than you know and I miss you every day.
My Shiny.
My Best Friend.
My Hero.
My Alan. <3
Breathe Easy
June 24th, 1984 - April 12th, 2012
Today (5/3/12) marks 3 weeks that you're gone and I've been struggling with what to write to you.
You were/are by far one of the most amazing people I've ever been lucky enough to call a friend.
I will forever cherish that day we met (in person) May 25th, 2011. (even though Alli couldn't come =(...)
It was less than one year ago, and even though it was raining and my mom felt the need to tour an old church, we still had fun. And of course, who could forget that terrifying ride in the Ferris-wheel, it was bad enough that I'm afraid of heights, plus the rain didn't help. But it was time together and I will never forget that day.
And when I think of you
I will forever think of those skype chats we had for days at a time.
I will forever think of how loyal a friend, how devoted a husband to Alli, and how pure at heart you were.
I will think of all those times you were there for me, no matter what hour. You listened to what I had to say, never once did you judge me. I could tell you things I couldn't tell anyone else and know that it was safe.
I will forever think of the laughs we shared.
I will forever think of you when I hear a P!nk song. (especially "Perfect")
I know that my life, will never be the same.
You left a hole in my heart that will never be repaired. And while I am comforted to know you are finally at peace, it still hurts to know you're gone.
I love you more than you know and I miss you every day.
My Shiny.
My Best Friend.
My Hero.
My Alan. <3
Breathe Easy
June 24th, 1984 - April 12th, 2012
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