Great News (for a change!)--Gotta Read It!

Pancreatitis
#1

Hi, everyone…

Well, while I’m still going through the opiate withdrawal and I think made it worse by trying to go too fast… I’ve only had three pancreatic flares which is the most awesome thing in the world… well, almost. But after over two years of not a minute break from the pain and being so sick and always back in the hospital… well, almost anything feels amazing (except withdrawal, which is as horrible as CP when it goes on 24 hours a day and you just want to scream!).

The good news is (for those who have seen my site), I’ve been back in the gym one day a week and with my new leg braces have made it to leg pressing 400 lbs in sets! It’s freaking me out-- and my upper body strength is coming way back, too… something I was told as an athlete with CP would take the years I was in the hospitals to come back. Ha ha on them! So now I’m using my braces and walking (on a knee that has no ligaments and is bone on bone, etc.) more than wheeling… but it feels so incredible after being a wheelchair user mostly since about 1995. Pain is nothing now!

So, for the even better news: Yes, it even gets better… as of tomorrow, Valentine’s Day, Dave and I are getting engaged. And in case you guys didn’t make the connection, he’s “Dave217” in our group-- he mostly keeps up on stuff and you guys have helped him to be so understanding of this disease. It’s really helped us both. You all have been friends and family and we wanted to let you all know. We’re very excited-- and we met in the middle of this disease and hospital stays… We’re just very dedicated to each other and very in love!

And, for those of you who have been asking: my website is back up and rearranged-- I’ve combined the www.lisabard.com with the www.empowerment-unlimited.com-- but you should get to the www.lisabard.com either way. Go directly if it doesn’t redirect you. I’ve got three blogs running and more than half the site is dedicated to us CP-ers and others affected by this disease (and others). Please let me know what you think and if you’d like to order from the “free store” I’d be happy to keep the orders going out! The feedback has been great and I just love when I can help someone else through anything I do. I guess it’s what I’m about in many ways.

Well, for now, please… I hope you’re all getting a few days of relief or more and know that you’re always in my thoughts and I’m not going anywhere. Just trying to get through the rest of the withdrawal… and hoping it’s not a temporary thing with the break from the constant CP! Staying positive as always-- I’m convinced it helps!

Much love and hugs always–

Lisa (and Dave!)

#2

WOW and WOW,I am so excited for you and Dave-Congratulations are in ORDER!!! and Congrats to you for getting so much better, and being able to exercise and walk and everything, gee i am soooooooo excited for you two that I can’t even type-LOL No I didn’t catch it, Dave217 WOW probably chatted with him and didn’t even know it-LOL Ok hon it is so late but I had to respond to YOU and Dave!!!

CONGRATULATIONS, and I am sending you BIG BIG HUGS and LOVE…

Your Friend
Barb :slight_smile:
ps: Be sure to put a pic. of your ring on for all of us to see :slight_smile: TTYL

#3

Dear Lisa,

CONGRATULATIONS!!! To the both of you! I hadn’t made the connection either (Dave217). What wonderful news all around you have today!! I am so happy for you. I am glad you are feeling better. So have you guys set a date? I second the posting of the ring picture!

As for the flares, do they seem to have lessened in intensity? I pray the withdraw symptoms go away soon. I had posted last week an update that I had been feeling pretty good for several weeks then proceeded to have a crashing weekend, I am feeling better now though as long as I eat low fat.

Well thank you for all the happy news. It is so good to hear you are doing so well.

Take care and keep it up!

Keri

#4

Lisa and David,

My heartfelt congratulations to the two of you. I know that you two will do well together and that life offers so much that we need to accept it more each day rather than push it away. It is good to see
you grab for life and love and, of course, there are never losers in such a gratifying claim. Hugs and kisses to you both.

As for me, since I got out of hospital on my birthday, Jan. 26, I have done far better than I ever could have hoped. I have been able to keep on eating regularly (a very difficult task for me, to say the least), and keeping my fluid levels up and staying as hydrated as possible (even more difficult than eating!). Furthermore, I have also monitored most religiously my blood sugar levels and keeping that medication going. I don’t know how many of you are diabetic, but it is a disease
with many ups and downs and wrought with frustration in trying to keep it in order. I am happy that I jumped over one of those hurdles after I got out of hospital and doing rather well on that point. Next, my pain levels are now under great management such that I have not had to take any breakthrough medications. I still have the pain there as it slowly simmers; however, my pain management is now successful.

There are two other areas that I have had no real improvement in. One is my physical ability to do much of anything before having to get myself to bed or sitting up until the exhaustion and shaking subside. the improvement here is that I do not just lie in bed all day. Now, I do sit up in the living room a bit every day or, if not there, then here in my bedroom. I love the light in the living room and it seems that I am surrounded by life and the turning of the seasons and such. The second area is my vertigo. There is absolutely no improvement there and, as it was brought about by brain damage through extended use of gentamycin, it is not expected to change at all.

In a way, I really feel lucky and I also fear that, at any moment, my good fortune may be taken away. I look at March 10-16 as the days of determination. I have usually been ill for 2 weeks and then out of the hospital for 5-6 weeks and than back in again or having a massive attack of pain and suffering. If I make it through those dates without a mishap, I feel that I shall improve a bit more and more as time goes along. I also feel guilty. After being ill for so long, my message to
those who are now suffering may become diluted. I do not know nor am I sure if one gains the validity of one’s opinion or suggestions only through the continued suffering from this illness and that such validity will then be lost as I will not be experiencing it all in the “now” but in the “past.” I certainly do not want to be identified by my illness(es), yet I have lived this way for so long that I feel like I will have to use my energy for as much good as I can do and to work for a cause that would be good for a far greater majority of people here in the US. I will certainly remain here in CarePlace helping people with their pancreatitis and such. I shall also now have the
energy and a greater capability to “stay on the job” so to speak and to use my intellect and concentration to finally create the pamphlets and brochures that we as pancreatitis sufferers should have to show to our doctors and to share further with other pancreatitis sufferers as
they come into this place. I would definitely need some help on the various brochures that would be on the following subjects:

diagnostic procedures
medical procedures used (operations and such)
diet
support groups and family support issues
depression
pain management
how to “prepare” for your doctor visits and taking notes during visits

I think that this should cover most of it and, I am sure, you can come up with a few more.

So, I shall definitely be about and “active” in new ways that I feel will support more people in the long rn and fewer in the short run. It will be good!

I love all of you so much. You will never know the number of times that I wanted to throw in the towel and end my life. I have lived through the worst of pain and depression and, all in all, I never
ended my life after all. I dare you, though, to deny that you NEVER thought of your life ending so that you could escape this suffering. I know of one person who did end his/her life. I miss that person a lot and I respect the choice that person made. I respect that person. As I am not a person of faith, I make no claim that things got “better” and that the person found a home in the sky with angels or whatever. The life was terminated and that is all. I will not broach the issue of
suicide in ANY of the brochures that I will work on. I shall leave that to the individual and will not provide the springboard for them to leave this life. I am a VERY strong person and I know that some very weak people can make the wrong choice on this issue.

Take care and, if you think of any other “general” topics that should be addressed, please suggest them as best as you can.

Love to all of you,

Anyse

#5

Congratulations to you and Dave and best wishes for a long, happy life together. God has a divine plan for all and this is definitely yours.

Love, hugs, and prayers for continued painless days

Teresa

#6

Congratulations and Happy Valentine’s Day, Lisa and Dave. May you have many years of happiness. You both deserve it. Way to go with the exercise routine, Lisa! Keep up the good work. Best wishes, Ellen

#7

Congratulation to a beautiful couple. Walt and I have been together thirty two years today. This must be our lucky day. Another thing we have in common. I am so thrilled for you both.
Hugs and Happy valentine’s day
Sammi

#8

What a joyous occasion ~ Valentine's Day Sweethearts ~ Best wishes Cager and Congrats to the groom for his good catch!!

LOVE CONQUERS ALL............

Heart Hugs,

River~ 

#9

Congratulations to you both! I am so happy that things are finally turning around for you Lisa. Your wonderful optimistic attitude about life and everything else gives us so much, so it is really nice to see things finally going your way. I pray that things continue to get better and better!
Hugs, Prayers, and Good Thoughts!
Lindia

#10

Isa Lisa, my baby girl ! Way to go ! You deserve all the happiness life can bring your way, you are both such lucky people, it is always so neat the plan God has for us and how it unfolds, especially at times like we have that we think nothing good could come out of all this madness !

You are a ROCK STAR !!! I am so happy, happy, happy, for you angel girl !

Love you
julie

#11

Lisa (and Dave))-
I have tears of joy and a huge smile going on. I haven’t been on in a while because of classes but something told me to log on and see how everyone has been doing. Your post was at the top of the list and now I know why. I couldn’t click on your announcement fast enough. I’m so thrilled about ALL your wonderful news!!!

I often wonder about ever being able to find love again since being divorced and not even dating since '03. You and Dave have now given me hope. How do I wish you both more than the best?! Just know I do (pun intended)!

Congrat’s also on the way you’ve been feeling, Lisa! I wish I could just get in the habit of working out at home on a regular basis, let alone going to the gym and doing leg presses. Maybe that’s why I haven’t been dating.

You are both an inspiration, but always have been. Keep the great news coming!

LOL & HUGS-
Lawanna

#12

Hi, Everyone–

Dave and I would like to thank you all so much for your posts, congrats, and notes!!! It’s great to know some good news can help, too!

I’m still having occasional pancreatic flares (like the past few days-- Ouch!)-- but it’s still much, much better and no comparison to the 24/7 stuff for the past few years! The withdrawal is still happening daily, but seems to be getting less and most days I’m able to slowly be dropping the doses. I thank you for asking-- and for caring so much and sending your wishes and help.

Dave and I are so happy together and we’ll keep you all posted! We’ll put up pics as when we get them, too! It’s just so great to know it’s a forever thing and that we get each other eternally now!

Thanks again for all your love and support! You’re all great!!!

Love and hugs back to you all,

Lisa
(and Dave, of course!)

#13

HEY LISA

CONGRATULATIONS ON YOUR ENGAGEMENT…THE LORD HAS FOUND A PERFECT MATE FOR YOU…YOUR SOUL MATE…CONGRATS TO DAVE TOO…I AM SO VERY EXCITED FOR YOU…

IM SO GLAD THE PAIN HAS EASED ALITTLE AND YOU ARE UP AND WALKING…GOD BLESS YOU…THE LORD IS SURE GUIDING YOUR LIFE, DAY TO DAY , MINUTE TO MINUTE…THEIR ARE MORE WONDERFUL THINGS THAT WILL HAPPEN IN YOUR LIFE , AND IT IS RIGHT NOW…BABY STEPS MAKE HUGE STEPS…

TAKE CARE
GOD BLESS BOTH OF YOU
TERESA AKA TEWE

#14

Very good news, Lisa!!! Congratulations, but don’t push yourself too quickly. Take things one day at atime. Here’s to hoping for even more recovery!!! :slight_smile:

#15

Ready for this, everyone??

Here it is: The engagement ring pic is up on my profile-- there are a few new pics of me and Dave and our “kids” that were added, too. Now you can see which “Dave” you’ve all been sending your wishes to. A lot of you were asking to see it, so we did the best we could (it’s totally gorgeous and we’re so excited to be sharing life together!)-- and again, we thank you all so very much for your congratulations and wishes. It really means a lot to us.

From our heart, thanks and love… and remember: Anything is possible!

Lisa and Dave

#16

I wanted to drop in and thank all of you who have sent your congratulations to Dave and me-- and who continue to offer their support through CarePlace, emails, and just being true and real friends.

While I’m here, I thought I’d give a quick personal update: the withdrawal is getting better slowly (it helps to get meds that aren’t defective month after month)-- and other than vomiting in the middle of the night last night and still having intermittent pancreatic flares that seem to have the job of reminding me how terrible the past few years have been-- I’m still feeling better overall, although my underlying pains have come back full force (I think they were just hiding under the 24/7/365 CP pain).

Also, and I sure hate to mention this stuff under a title of "great news (I had only expected to send out my “thanks” to everyone), but I’m set up for a spinal block on Tuesday under anesthesia and then a hysteroscopy on Wednesday under anesthesia (based on the findings, I will likely need either an ablation surgery or a laproscopic surgery to figure it out. I don’t like doing the sedation stuff so often, but that’s how it worked out-- and they need to check behind my uterus for other types of HPV cancer and polyps-- the two best guesses so far of my symptoms-- Ugh!!

And I just finished comprehensive oxymetry testing to see if when I’m having breathing problems my blood oxygen drops, and it went way too low-- down to 86 when I was looking, and no idea how low when I was trying to sleep. It’s not known yet if this is residual from the punctured lung I got at Johns Hopkins while there for an ERCP when two interns messed up… or if it’s coming from a spinal injury dating back to 1988 that I got while in the Air Force.

Either way, it’s all feeling kind of scary right now. It’s like piling a whole ton of stuff on top of the CP and some withdrawal on the top just for fun. I’m staying as positive as possible and hoping that it will all be easy to diagnose and not long-term stuff. We all could use a break at some point, right?

Well, thanks again for all the awesome notes regarding our engagement and getting my 3rd degree black belt awarded. You guys are always SO great to me!!!

Take care, wishes for less pain, and many hugs and love,

Lisa

#17

couple of questions, did your oxygen level fall more distinctly during your sleep or stay about the same as your waking hours? If it dropped more during your sleep, suggest that a sleep study be done to rule out the possibility of having a sleeping disorder. This is so under diagnosed through out the whole world that it can actually lead to a lot of other health problems without the docs even knowing it. Your low oxygen levels could also be due to weaning yourself off of the meds and having withdrawl symptoms. Either way it doesn’t hurt to at least request a consultation with a sleep specialist who could give you more information on it and other ways to deal with it. The test itself is relatively pain less (the most pain is felt in the morning when the tape from all the leads placed on is taken off! (LOL). Some of the symptoms of this disease process could actually lead to: high blood pressure, cardiac problems, stroke, and death. Most people I have performed this test on say that they can think of no better way to die then in your sleep. They really hate it when I point out the unfortunate truth of yes you could die in your sleep, but it’s usually when you fall asleep while driving. I have also had many patients who don’t really feel like they even have a problem and are just there to prove to their spouse that they don’t have a problem, Alot of the time I end up having to tell them that they do have a problem but not to worry that the main treatment can be very simple with very few side effects. The most common side effect from treatment is impressions from the mask (CPAP/BIPAP-continuous positive airway pressure) it helps to hold your airways open while you sleep. For more information for anybody who is curious about this you can find more information about it and the different treatments by clicking on this link
http://www.sleepfoundation.org/site/c.huIXKjM0IxF/b.2417141/k.C60C/Welcome.htm

It will take you to the national sleep foundations website which has an abundance of great information and links to more great sites.
I hope you and everybody will have a pain/symptom free day.
Hugs, Prayers, and Good thoughts,
Lindia

Sorry this is so long, I can really get carried away this topic, I used to perform sleep tests before this has become so out of hand that being on my feet even for short amounts of time can hurt. I just find this field of medicine so fascinating especially how so much of our lives can be effected by this.