Checking in w/ Everyone!

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Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 5/3/2011 3:32 PM (GMT -6)   
Hi all,
The board has been on the "quiet" side.... and I've missed hearing from several people and I've been wondering how ALL of you are doing.  If you feel like checking in - please do so.
Things here are moving along.  I just try to live in the moment - which is very difficult for me, but I continue to try.  Take each day as it comes and be thankful to make it through! 
Physically - things are about the same w/ me.  My pain has flares, but the meds do help and keep me stable.  My PM doc has been an angel, really.  It's my blood pressure and extreme fatigue that continue to get to me.  I had a blood transfusion in September and remain severely anemic.  I have a feeling I may need another blood transfusion.  And my BP remains way too high. 
Mentally - I'm doing so much better overall.  I had terrible post-partum depression (on top of my "normal" depression).  Oh, it was bad.  But I'm better now - I guess you would say "stable".  I still have my moments....but they pass, unlike before.
So, again - I take each day as they come and just do the best I can.  I try to accomplish as much as possible on the good days; and try not to be too hard on myself on the bad days. 
That's my little world!  Again, if you feel like giving an update on you...feel free.  I'd love to hear how everyone is doing.  Take good care everyone - and I'm thinking of you all today.  Gotta go put the girls down for a nap! :)
Love, Tina

Veteran Member

Date Joined Oct 2008
Total Posts : 2024
   Posted 5/3/2011 4:35 PM (GMT -6)   
Hello all my dear friends.

Many of you know I am in Florida visiting Lindaloo for a while. What a lovely and caring lady she is.
She is keeping me quite comfy here. Her hubby, Mario, took us out for a fabulous dinner last night.
Boy oh boy, it sure is hot here, unlike my Ontario weather. We bought a pool for the both of us
to sit in so we are having a blast.

Myself, unfortunately my headaches have not left me and I continue to use ice daily. The methadone
did not work so i am on a weaning schedule of that. Otherwise, like Tina,, I take it one day at a time.
That's all I can do.

Unfortunately I started having a toothache shortly after arriving here and today had to go to the dentist
and I had to have a root canal done. I was not happy. But it's done now and have antibiotics and pain meds for that. I hope to be back in the pool by tomorrow.

Well take care y'all.. lol

Post Edited (tmjpain) : 5/3/2011 4:13:34 PM (GMT-6)

Veteran Member

Date Joined Sep 2006
Total Posts : 1713
   Posted 5/3/2011 5:42 PM (GMT -6)   
I am doing quite well.  I have Suzy here visiting me and we are enjoying each other's company very very much.
As for my fibro,  I just increased my oxycodone to 15mg every four hours and sometimes I have to take ibuprofen with it, but it seems to be helping much better than before.
My back gives me fits at the end of the day.  I can hardly stand and actually use a stool to prepare dinner in the kitchen.  After dinner, I am dead, but I have had some help cleaning up lately so that is a blessing from Suzane.
Mentally, I am very happy lately.  Feeling good to be alive and praying my health continues to be good.  All things are possible with God.
That's me in a nutshell.  Come on everyone, chime in.  Let's hear how everybody is doing!!
Co-Moderator Chronic Pain and Fibromyalgia Forums
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 5/3/2011 5:52 PM (GMT -6)   
I'm glad you are on vacation and glad you are visiting w/ Linda - how fun!  I would give anything (honestly) for a vacation right now.  After everything I've been through in the last year - I'd give anything just to escape for several days.  I'd be happy to spent it w/ friends or anyone - but I'd even be happy by myself w/ a good book and just some QUIET, peaceful rest.  One day, one day......
Try to stay cool and have a wonderful time.
Glad you and Suzane are having fun times together.  It's great getting together w/ a good friend, isn't it? 
Also, glad to hear the med increase is helping some.  Like I said, I've made some med adjustments and they are working pretty well right now, too.  I'll never probably be "pain-free" - but a 6 out of 10 is really good for me - so I'm happy! 
You two continue to have a good time - and don't get in too much trouble together :) :)  Love, Tina

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 5/3/2011 5:52 PM (GMT -6)   
Hope others will let us know how they are doing!! --Tina

Veteran Member

Date Joined Apr 2010
Total Posts : 2261
   Posted 5/3/2011 5:54 PM (GMT -6)   
Hi everyone. I'm doing pretty well today. I found a surprise at Walgreens today that I hadn't seen. They have the Arnica gel in a small tube. Dani always said that it works really well for her, so I'm trying it out. Tomorrow I have an appointment with my pcp for my annual checkup, etc. I just wish it would stop raining and the sun would shine. I hope you're all having a low pain day.

love and hugs
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 5/3/2011 6:14 PM (GMT -6)   
Here to chime! smilewinkgrin

Linda, I know just how you feel! I start out pretty good in the mornings, and then by late evening I feel awful. I had a bad night last night, and then this morning I felt great. Today was the first time in years that I did not require a BT first thing in the morning, and stayed that way until around 1:30pm. Ever since then, it has been down hill. shakehead

I too am happy like Linda and my mental spirt is as good as can be expected.

We are happy for the both of you down there in Florida. You just make sure you include Petey! You hear me! wink

Great post Tina!


SE wink
Moderator Chronic Pain Forum

Weekly Quote!
"When the character of a man is not clear to you, look at his friends."

Regular Member

Date Joined Dec 2010
Total Posts : 213
   Posted 5/4/2011 8:45 AM (GMT -6)   
I am doing okay - of course I could be better.

I took my last pain med this morning and don't get a refill until tomorrow morning. Could have worked that one out better.

Just hoping that the pain stays at a minimum until tomorrow. Went shopping yesterday at walmart and that just did me in. That store is just too large to walk and a lot of their items are heavy and there is never anyone around to ask for help!

On a daily basis - things stay the same and I just do the maximum that I can, even when the kids think it is the minimum. BUT - my husband and both of my teenage boys do support me and I thank GOD for that!

On yet another note - I just retained a lawyer to retain my disability for me in February and we just found out that my ALJ hearing has been scheduled for May 9th. MONDAY! I am scared to death! They originally approved me in 2004 for the AML and have been trying to take it back away from me since 2007 even though all the docs say that I cannot work. Recently had a hospitalization for RSV pneumonia and came home on oxygen full time and with great memory loss from before and during the hospitalization. I don't even have the records from that stay to introduce to the judge.

Keep me in your thoughts!
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips.

left forum.
Regular Member

Date Joined Jul 2010
Total Posts : 200
   Posted 5/4/2011 8:47 AM (GMT -6)   

I haven't really had a chance to get to know you very well yet but hopefully we will soon! I have been reading your posts though :) I'm glad you are doing much better mentally and hopefully your pain will decrease soon!!

I'm doing okay at the moment,

physically I am pretty exhausted, have a fair bit going on, just diagnosed with leukaemia, had a blood transfusion yesterday, not feeling any different yet though. I went back to school this week and already loaded with assessments, so 7 hour days at school then get home to do 4 hours of work! haha its crazy and have exams soon so it's very stressful and I have also been asked to coach a netball team so that's on at 6am in the morning twice a week and 3-6pm one day a week which also makes it harder as well as trying to stay fit so running most days so i can be as strong as possible to get through treatment!

I also have a parasite in me which gives me some crazy symptoms and have many doctors appointments to try and sort that out, so not going to lie I am very tired! But telling myself if I get through all of this just for the next month or so life will be a breeze soon and it will all pay off :)

Mentally I am doing well, I feel drained/tired/i don't even know! And have a lot of memory problems and just can't think alot, but in the coping with everything point of view I'm fine! Bit worried about treatment and out come but of course that's normal so I guess I'm pretty lucky I haven't become depressed or anything!

Sorry for such a long post, I'm sure you didn't even want to hear from me haha

Hope to talk to you soon!!

Hugs and prayers

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 5/4/2011 1:22 PM (GMT -6)   
Hi all,
Buttercup - of course I wanted to hear from you, silly!  I wanted to hear from anyone and everyone.  I am just curious how everyone is doing.  You are right - we haven't gotten to know each other.  I was off the board for awhile, having my girls and then being in depression/anxiety h***.  But I'm better and I hope to be back, as much as possible w/ this crazy life of mine.  So I do look forward to getting to knowing you better.  Oh, and Happy "belated" Birthday.  I'm late to almost everything - so please forgive me :)
Trudy - Having a helpful husband and helpful teenage boys does make a difference, doesn't it?  I know the bulk still falls on us, but it does help.  I'm also going through the legal stuff too.  It's a long story for me; essentially, I've been approved for SSD, but it's proving some dates (that my stuff dates back to the 90's....been frustrating to try to prove).  Anyway, it can be stressful, I know; so - YES - I'll keep you in my thoughts.  Let us know what happens.
Everyone else - good to hear from you.  Hope we might hear from a few others. 
Love, Tina

Veteran Member

Date Joined Feb 2007
Total Posts : 553
   Posted 5/4/2011 2:06 PM (GMT -6)   
What a great idea for an update post. Its so good to read through it even though I didn't get in on it first. The internet has been touchy at our new house, so I'm doing this on my phone, eating lunch, sitting in the parking lot before going into ANOTHER drs appt. Every single weekday for the last 6 weeks. Its crazy. And people wonder why I always have ny health on my mind.
I sat and wrote a long post on the computer this morning complaining about how my insurance all of the sudden denied my sleep med when I went to have it refilled. I had 4 nights left when I called it in and I have been 2 nights without sleep after it ran out. My bipolar does not do well without sleep. I had a great explanation of how lack of sleep makes me nearly unable to cope with the same pains and stresses that I could do if I had the sleep. I tried all the tricks. Feel the mania setting in. NOT GOOD.
I was at the pharmacy earlier and was ablt to talk them into allowing me to pay cash for 4 nights worth without jeopardising the rest of the script for the month.
4 nights of sleep.
lots more stuff, but timee to go in.
love ya
Treatments: gluten-free diet, Cpap
Medications: omeprazole, probiotic caps; multi-vitamin supplement; docusate sodium, fiber chews; zertec, ferrous sulfate, cymbalta, lamotrigine, ambien, alprazolam, plaquinil, sulfasalazine, methotrexate, leucovorin calicium, folic acid, motrin, tramadol, pennsaid, aspercream, nasonex, albuterol sulfate inhaler

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 5/4/2011 4:55 PM (GMT -6)   
Gosh, I understand.  I go from doctor to doctor to doctor.  I see a PM, cardio, endocrinologist, pulmonologist, GYN, psych.... hmmm, that may it for right now :)  It's like a full-time job managing my health.  People ask me - "Do you work?".... Ummmm, yes - I have about 5 full-time jobs, between my health issues, kids and so forth :) :)  So, I get it.  And, yes, it's hard to distract yourself from your health stuff when it's in your face each day.
Re: sleep - I get that too.  I've been on a roll w/out sleep - and I'm a mess w/out it.  Why did your insurance stop paying for your meds?  I'd be livid.  I've tried them all.... I either feel too drugged, erase my memory/find myself eating tubs of ice cream in kitchen w/out even realizing it (that was Ambien), they don't work, etc.  Right now, I'm using Valium to just "relax" my mind enough to try to rest.... but it's really not working all that great.  My doctors get mad at me because they WANT me to sleep.  Well, in theory, that's great.  But I have to be lucid enough to wake up and feed babies, comfort those w/ a nightmare and so forth.  Plus, I need something that wears off enough by very early morning - because mornings are my worst time, no matter what.  I can't stand that drug "hangover" feeling and refuse to take anything that makes me feel that way.
Sorry for rambling on.... but I'm glad you posted!  Take care of yourself and I hope you'll get some sleep, and then figure the rest out.  The last thing you and I both need is to NOT sleep, my dear :) 
Love, Tina

Veteran Member

Date Joined Feb 2007
Total Posts : 553
   Posted 5/4/2011 9:08 PM (GMT -6)   
I just got a call, the problem was that the pill rules have changed for Humana and I get 1 1/2 pills each night, but now they will only cover one pill a night. Fine. Better than none. Well, I'm heading to bed. I wanted to let you know that I get to sleep tonight. I'll figure out how to continue sleeping with only 1 pill a night later, after I get some sleep and can think.
Treatments: gluten-free diet, Cpap
Medications: omeprazole, probiotic caps; multi-vitamin supplement; docusate sodium, fiber chews; zertec, ferrous sulfate, cymbalta, lamotrigine, ambien, alprazolam, plaquinil, sulfasalazine, methotrexate, leucovorin calicium, folic acid, motrin, tramadol, pennsaid, aspercream, nasonex, albuterol sulfate inhaler
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