Topic : Living with Chronic Pain

Quote From: dyingtooyoung

Did my own sleep lab test last night too (odd coincidence that there are 2 of us doing them at the same time!) 

Saw the pulmonologist today and he said I don't have sleep apnea, I show the very earliest signs of a possible slight case arriving but none now.  Which is good.  I protested all along that i didn't think I had sleep apnea, so it's kinda nice to be right, I admit to that too : )   Anyway, it's good news.  I only have to sleep with oxygen, not with the CPAP AND oxygen.   I desaturated a bunch.  Guess I was down at 80% pretty frequently.  Not a shock.  When we did my home test last year, where you just where the O2 sat monitor on your finger - I desaturated something like 242 times or maybe even 342 times - it was a crazy high number. Worked out to once ever 18 seconds or something.  No wonder I'd been so tired!

 

Bad news, my oxygen use is no longer "when you feel you need it" it's "wear your oxygen all the time."  I preferred the control of the first but oh well.  Oh, and he referred to "my pulmonary hypertension."  Hmm,thought you said I didn't have that?  But, ya know, I just didn't want to know so I chalked it up to a misspeak - figured he meant to say "your pulmonary embolism."  I just couldn't start that conversation, just literally could not do it.  V was hyper-annoyed at this flagrant display of poor health management.  But it's not his health being managed and, heaven forbid he ever get this ill, well, he'll understand why sometimes, you just gotta let things go and hope for the best : )

 

GOOD NEWS!!!! - I'm cleared to travel!  As long as I have oxygen with me at all times I can travel go on our cruise!  And I should have my new oxygen machine tomorrow or early next week at the latest.  Looking forward to it!  This means I can go to my college roommates wedding and I am thrilled about that.  I've missed 3 close friends' weddings since I became ill, all totally unavoidable but it's depressing to miss such big days.

 

Ok, that's it.  I hope everyone here is holding in and hanging on. 

 

Be well,

Karin

Quote From: kweiler

A test showed some inflammation and erosion inside my esophagus, where it empties into the stomach.   I also sleep with my head and chest up about at  30* angle to reduce backwash.

 

The sphincter at my stomach doesn't close all the way.  The intense pain at my breast bone had been with me for many years.  I now am free of esophagus pain, unless I try to skip skip this medication for more than 2 days.  It took a few weeks to heal. It comes back full force (pain!!!) when I have attempted to stop taking the Prevacid.   It really works.  When I can, I take only one a day.  Just to help avoid any side effects.  This is the most helpful medication I've ever used.  Ask your doctor to put a scope down your throat to take pictures of what is happening there. (a couple sprays of the topical anesthetic is enough to help you cooperate.

 

Be well in body and spirit,

grandma Kathy

 

 

Quote From: comer1

I hope this message finds everyone well and as pain free as possible- I will write more in detail another time- I'm getting ready to head out of town to the in-laws' family reunion. Not too thrilled about that.  It's a 4 hour drive and I feel just way too tired to go.  I am hoping that getting out of the house for something other than work, the doctor and the grocery store may help my mood!! :)

anyway, just saying hi - I haven't posted in awhile and didn't want to lose my spot on the board!
Everyone, please take care of yourselves - I'm thinking about and praying for you all-

All the best

Debbie

Quote From: dyingtooyoung

Do you want to be here for support, for suggestions of what people think might help, for the general all around love and support we provide each other or to just vent your tension in a posting forum?  That should actually be the question.  We might be repetitive.  There's a lot of us and we each, individually, have our own concerns.  Sometimes a person gets the same advice from 5 different people but that's because 5 different people have cared enough to take the time to read your post, consider what you are saying, think through what might be helpful and then put themselves out there enough to answer.  Repetitive or not that deserves some appreciation; we don't always have to agree with each other but snapping back will get you no where.  But maybe you don't want suggestions or friendship or offers of help.  Maybe you just want to vent and not be part of this back-and-forth we have going.  That's perfectly okay.  You can do that.  Just say so in your post, that you aren't looking for replies.  We'll leave you alone and you can post in peace.  But if you want the friendship and ideas then this is ridiculous.  Your responses are curt to the point of rudeness and all you want to do is shoot down everything anyone suggests.  Things are often suggested that people already know or have tried but we respond nicely and are grateful people are thinking of us.  The snarky replies that imply that the group just annoys you or that your pain is somehow more important than ours aren't helpful.

 

 

FYI, I was 14 when I started living in chronic pain.  19 when a surgeon performed experimental surgery on my knee, without telling me it was experimental and left me unable to do more than walk short distances.  I know all about losing out on your youth.  I haven't jogged, danced, played in so long I would forget how.  At one point I too lived a normal life like yours.  I was a cheerleader for years, I jogged 7 nights a week, I went to clubs with girlfriends.  In fact, if you went back and read the posts you'd find that most of us got sick in our 20s (or younger). 

 

Anyone who spends time trying to make friends or find support in these groups learns a couple of things - people who come on are often angry and depressed in the beginning.  They think their story is the worst story ever.  Lots of us thought that too at one point, I'm not blaming you nor singling you out - I certainly felt that way at one point too.  I quickly learned otherwise.  We also learn that because we try to focus on other things we try to focus on feeling good about our selves and our lives *around* the pain.  I doubt most of our pain levels ever drop below 7 or so.  Maybe occasionally with extreme meds or hospitalization.  Otherwise level 7-9 pain is par for the course.

 

As for me, I love each and every person on here with a very pure, accepting love - no expectations of anything from anyone and I am often amazed at the well of love and strength I get back - even though I don't expect it.  That is truly a beautiful thing. 

 

So I am sorry you are in pain.  I am always saddened to see new people join the group as you don't search out pain groups unless you are in substantial amounts of pain all the time.  That is sad to me.  Yes your age makes it hard on you, but you aren't the only one and, you just have to keep pushing through.  Pain is pain, whatever your age, gender, height, weight, country of origin - it just is.  And it's a nasty nasty enemy.  Sneaky and cruel.  But you already know that.

 

So we are here for you.  I refrained from posting until today because I kept being hopeful you would take some of the open-ended friendship that was being offered and realize that in a pain group, although each individual is important, pain isn't unique.  What makes you unique is YOU.  So who are you other than your pain?  That's what people have been asking, and suggesting that maybe if you look for *you* under all the pain it might provide you some solace in dealing with this all.  We all know how easy it is to be pain-full instead of just painful.  It's a thin, thin line.

 

I hope you stay.  There is a ton of love and support here.  But please try to take our comments the way they are written - in a supportive, friendly tone.  Perhaps if you read our comments with that in mind they would be more palatable.

 

I hope you are as well as possible today and getting at least a little joy out of the weekend.

Karin

 

PS - As for young - I'm 32, on 24 hr/day oxygen with the knees of a 80 year old and lungs that are termed "emphysemic" from all the blood clots I've had.  Yeah, it does suck being young and sick.  But being bitter won't make any of the above go away.

 

PPS - Have you tried Zantac or Pepcid for your post-gall bladder pain?  I still have some residual pain in the area.  I also developed a nasty case of GERD after my gall bladder came out.  The antacids help a ton.  I take a prescription one now but Prevacid (over the counter) helped a lot for a long time.  Some people find fish oil capsules help too.

Quote From: dyingtooyoung

Lashy,

Oh, love, I'm sorry.  Just when it seems you are being tested to your limit, your limit is raised.  I hope that you have had a good day and that your pain has been kept under control.  I know keeping your pain controlled with this kind of stress much be very difficult.

 

I think the child abandonment avenue might be the safest way to go.  She'll be very, very angry with you, but as you said, she is acting like she doesn't know how to act so maybe that will be a wakeup call.

Could it be that jail would actually provide her with the meds she needs, on a schedule she has to stick to?  I know that jails are supposed to do this.  If you were in California I wouldn't even think of it, the federal government is 1 step away from taking over our penal system because the medical treatments/facilities are so sub-par.  How is it where you are?

 

Then again I can hardly believe that I suggesting that having your daughter arrested is a viable option!  What a terrible spot for you, to even have to consider that question.  But if she is refusing to treat her condition...

 

The only other thought that came to me was that you could call the Dept. of Public Health for where she is in NY.  I imagine they might be able to force her to work out a medication routine, especially if she has one of the new strains of HIV.

 

I think both those ideas probably stink but they were the only two I could come up with. I wish there was more.

 

I worry, if you go to get her will she try to get you arrested for kidnapping/false imprisonment for grabbing her?  I don't know how that works but if she were angry enough...I don't know.  But I worry for you both (well really all 5 of you including your husband and the grand-babies.)  You follow your heart, as a mother I think it's all you can do at this point.  And even if she owns up to nothing else, responsibility wise, your daughter desperately needs to be on a treatment program.  It makes me sad that she is too selfish to see what her not taking meds does to you - the position that puts you in, of knowing what comes next and that she's speeding up the process.  I pray for your success in getting her to take the needed medication (and to wake up, realize she's responding to the diagnosis by running amok and come home and be an adult, but that's a big wish!)

 

Good luck and God bless you all.

Karin

Quote From: huntn4answers

I myself have had very bad days these past two weeks.  I also suffer from fibro and was diagnosed with it since I was 25...I'm going to be 40 soon.  The pills help a wee bit if they don't upset your stomach (that's saying it nicely).  I would love to find something that would actually take this darn pain away without making me stupid where I don't care if i'm in pain or not.  I have good days and bad....mostly when the humidity is high (bad days).  As for my Doctor.....well she is a sweety and is doing her best to make my days easier.  Now if we could actually get the medical profession to agree on what this is then we would find our answers to have more good days then bad.

 

I keep as active as possible even when it hurts so much to move I do it.  And yes crying the whole way through.  I have a life darn it and I will live it!!!  I keep remembering all the good in my life so I can keep the depression away as long as possible.  But let's get real here we can only do that for so long until the pain becomes to much and the depression slips in.  This is what upsets and frustrates me almost as much has finding the right medication, because people think we are ok because we breath and move.  They don't walk in our shoes or go through the pain we do on a Daily Basis and that's to be as normal in our lives as possible.  This illness and yes that's what it is as far as i'm concerned is real.  We need to be able to live our lives to the fullest just like anyone else has a right too.  How about some of the medical professionals actually do something about it instead of treating us like it's all in our heads.

 

Sorry all if it's harsh, but I'm in a great amount of pain today and even the pills that make me stupid aren't working.

Huntin

Quote From: lady_elf

Thank you dear, I'm fine, really.  My wrist is healed, that was minor, and the only thing left from the fall that hurts is the hip joint where I bounced before landing on my back.

Falls happen for me, and will become more and more common as the years go on. This one scared me more because of the twisting and turning I did in the air, and the fact that I was alone and already overly emotional before the fall.

Speaking of recipes (or receipts for those of  you who prefer that spelling), my mother used to make Boterkoek (Boterkook?) and I loved it. I haven't made it in years, I should try to find the recipe back. (I hope I haven't lost it! I know it was like 2 eggs, 2 cups + 2 Tbsp flour, about the same in sugar (not sure?), and like two sticks of butter. I think that was the recipe. Knead it together, bake at about 325  to 350 degrees Farenheit. It's been years so I can't remember the exact measurements.

Blessed be,

Morgan

Quote From: simonecornelia

I wish you my dear Becky,

 

 

A HAPPY BIRTHDAY!!!!!!

 

 

 

Enjoy the day and night(hmm) but I am Dutch but i have never heard about a dutch pie or even a dutch pie, but anyway, i hope you will have a very nice and happy, painfree day.

 

Yours sincerely, simonecornelia

Quote From: profderien

happy birthday, dearrrrr becky... happy birthdayyyy to youuuuu!