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Posted 6/28/2010 3:58 PM (GMT 0)
 

     Dear Friends & Family,

     It is another beautiful monday morning here. Though nothing would give me greater joy than to go back to bed and snuggle up to a good book... it is monday. There are many tasks to finish, jobs to do and appointments that need to be kept.

     Often times we are so busy supporting one another we forget to update about our selves. So, before we get too wrapped up in start of our week, tell us how you are doing....

     What are your major planns for the week? How are you feeling & what has your pain scale been like over the weekend?
Posted 6/28/2010 6:09 PM (GMT 0)
Okay, so we were at the petstore yesterday (I have 3 Kitties) and the
shelter is there for adoptions and well my hubby see's this cute lil corgi mix...
they keep telling me she's low for allergens, has no dander, I'm allergic to dogs...
so told hubby we'd consider it...so last night I was so tired I accidently put my hubby's
deoderant on instead of mine, so on and off all night I was coughing, asthma kicked in...
and now I'm so tired and sluggish today....
really I don't know if it was the dog that did this to me or my hubby's deoderant...and it was
so humid yesterday to boot so could've been that or all three....tell me what to do????
my eye's hurt and I go get my 2nd B-12 maybe, then go to pm doc tomorrow, and other appointments as well this week...
I'm a wreck...I slipped in the bath this morning and fell on my rump ...not a good day...not a good day...
That's me for the week wahoo eh...but really any advise on the dog issue, please..at least she house traine (1 1/2 yrs old, she is)...
but is a corgi really a good dog for someone with allergies....(HELP) (at this point I'd almost rather have a Ipad).....
Posted 6/28/2010 8:12 PM (GMT 0)
My weekend was horribly painful. The headache was off the wall. I stayed in pj`s and in bed all weekend. So bad i could barely get downstairs to get a bit to eat. Thank goodness my hubby put a little bar fridge up stairs for me to keep my ice packs in for the quick change up. Glad that weekend is over with.
Today is a new day, with a few visitors it takes my mind off the pain. Played in my garden a little.
Tuesday is massage day and a visitor from my church.
Tuesday night we head out camping until Sunday. I am praying to find my peace there.
Can`t wait to get there.

I hope and pray that everyone can find a bit of peace in each day.
Posted 6/28/2010 9:53 PM (GMT 0)
Well, I've been in a lot of pain ever since I had the accident with my wheelchair.  My knee still hurts so bad.  My hand and foot are doing ok.  My back has been hurting worse than usual since that happened too.  I have an appointment on Wednesday with my PM doctor and I'm going to  tell her about what happened.

 

Well, that's what's happening with me.  I hope everyone is having a lpd.

 

love and hugs

Loretta

Posted 6/28/2010 9:58 PM (GMT 0)
My pain this weekend was off the charts 9 OUT OF 10 and I still am hurting . I had 4 appts in 2 days I'mm paying for it pain-wise now . Thing is I got great news at these appts , so its a bad with the good thing . Whaddaya gonna do ? My major plans this week are to proceed in getting the work done I need to schedule my surgery , now that I've been give a confirmation it can and will be done . This is ups and downs at its best !! Mikel
Posted 6/28/2010 10:31 PM (GMT 0)
I am sending out huge amounts of love and good wishes and hugs to everybody...it seems like it was a tough weekend for most of you. That makes me sad.

I had an okay weekend....not a lot of pain, but still the overwhelming exhaustion to deal with. I'm just so thankful for my hubby and friends who understand when I say I need some alone time or I just want to sleep all day.

I've got a couple of medical things happening this week - one class at the Pain Centre for strengthening the lower core, and I have to get blood taken this week - I am NOT looking forward to that. It's generally between 30 and 60 minutes to get 6 tubes of blood...my veins are so tiny and scarred...it's just an awful experience, even though I'm okay with needles...

Hope this coming week is a good one for everyone.

hugs,
Pam
Posted 6/28/2010 10:52 PM (GMT 0)
Over the weekend my pain level was fairly high....I have celiac disease and was accidentally "glutened" a couple of days ago so had all kinds of nasty gastric problems (TMI) and migraine headaches as a result. I've been battling constant fatigue too, which is NOT GOOD because I need to be packing up the house to move THIS FRIDAY!!! AAAACCCKKKK! smilewinkgrin

Anyway, somehow we will get everything packed....and it will be nice after we do move cause we're moving to the beach!
Posted 6/28/2010 11:03 PM (GMT 0)
I had a nice weekend, but am suffering today because I overdid it yesterday. Last week was filled with appointments for me. This week, I plan to take it easy and rest up since I don't really have a choice b/c of high pain levels. Oh, my feet are still burning a lot.

Hugs,

Flower
Posted 6/29/2010 12:37 AM (GMT 0)
My update -

I'm 23+ weeks pregnant now, w/ identical little girls. It's been a roller coaster pregnancy that's been very emotionally and physically demanding. I'm now on complete bedrest until I have them, except for being seen at UCSF 1 to 2x per week. Praying that they stay safe inside for as long as possible, and continue growing and thriving. That being said, we already know they will be preemies, for various reasons... but just praying they will stay in until at least 30 weeks, minimum.

My pain is out of control, literally. I was managing and tolerating it as best as possible until about a week ago; now, most days, I'm in tears and a mess in pain. I've started this (very big surprise) pregnancy at the equivalent of 650mg of morphine (between the morphine/dilaudid/fentnanyl). I'm down now to 5 percocet per day. So - for the babies' sake - I couldn't be happier. But the pain is about to put me under....between my back, daily headaches/migraines and - most of all - my carpal tunnel syndrome. My hands literally feel like they are on fire, are so swollen that I can no longer write, it's ridiculous. I have to lie on my side all day/all night (optimal blood flow for babies) - but it's making my hands flare even worse :( :(

Sorry to vent... but it's just one of those weeks. So, right now, the goal for me each week - is called survival. :) Thankfully, we've got a good support system that is helping w/ the boys... people are bringing us meals... and so forth. I just need to survive these pain issues....

Take care everyone - Tina
Posted 6/29/2010 1:03 AM (GMT 0)
I really like this weekly thread and reading everyone's "updates" :) BUT, I am sorry to hear that so many of us are struggling right now. :(

Flower: Sorry your feet are still burning... as I said above, my hands are the same way - so I can relate and it's miserable! Take care of yourself this week, and try to take it easy...

JoAnn - You're moving to the beach?? Ahhh, that's my dream. I'm happy for you. Hang in there during the move and take care of yourself. Several days ago, I clicked on your blog and learned so much - my brain was swirling! I'm really interested in making some drastic dietary changes when this pregnancy is over (right now, they have me on a high protein thing, to try to get these babies to gain as much as possible); anyway, I want to see if it will make improvements to my health issues - anyway, thanks for putting together such an informative blog.

Hi Miss Pam... Hope your blood draw goes ok this week; I'm the exact same (it can take an hour+ plus to just get blood from me, including multiple sticks). Prayers that they will get you on the first poke!

Mikel - I'm so sorry you had such a lousy pain weekend, after they twisted your body all around :( Shoot, I hate that for you! Use your medications, REST and just take care of yourself...

Loretta - I'm glad you are getting in to see your PM doc... I'm sorry about your extra pain since your accident! Update us after your Wednesday appointment...

Suzane - I was in my PJ's all weekend, too :) I'm sorry, my friend, that you are suffering so much... that's right, you leave tomorrow through Sunday, is that correct? I hope and pray, Suzane, that you can relax and that getting away helps at least a little bit... I know how much you love camping.... I'll miss you while you are gone... but hope it's a peaceful trip, that clears your mind and helps w/ your pain.

Chart - We had to get a hypoallergenic dog because of one of my son's (we have a maltipoo); I don't know about a corgi... but, yes, they sure are cute. Maybe someone else will know more. With your lung issues, though, I'd sure be careful.... I'd probably go back a couple of times and hold it - and see how you do. I'd just hate for you to get it and it make your lung issues worse! Good luck w/ your appointments this week... and take care of yourself.

Take care everyone....! Hope it's a better week for us all. --Tina
Posted 6/29/2010 4:03 AM (GMT 0)
Wather here on the Grea Lakes has been all over the board.  We going for days of "Noah's Ark" down pours to result in lush mushroom fields in my lawn and garden to sahara like hot and dry spells that leave the same plants parched and wilted for lack of moisture.    Healthwise, shortness of breath continues to be my major problem.  If I take maximum amounts of Dilaudid and Baclofen for breakthrough pain and muscle spasms control, above the doses delivered by my intrathecal pump, I experience severe central apnea and shortness of breath.  I have an appointment with my pain specialist tomorrow to discuss my options.  AThe usual solution is to turn up my pump rate.  My major worry is that if I keep adjusting my pump rate up I will have permanent breathing problems, not just transient ones from BT dosing. I was sad to read all of the problems our Healing Well family members are having with severe pain levels.  No one shouldever have to tolerate high levels of pain for long periods of time.  It sounded like it was time for a visit to their doctor's or pain specialists to a frank conversation about BT pain control.  There is no reason anyone should have level 9 pain for days on end.  I know my pain specialist would be right on top of that ASAP.  I know it is a pain the as* to go to the doctor's, but suffering will get you no where.  Either your daily pain meds need titrating upwards to prevent these long periods of BT pain or your BT pain control medication need to be reevaluate for effectiveness. Take care everyone.  Wishing everyone happy trails and pain free days....                                              
Posted 6/29/2010 4:35 AM (GMT 0)
Wow, after reading over the other posts I'm ashamed of complaining. Tina, you sound so miserable, but I understand that you're doing it for your babies. You're in my thoughts and prayers! And thanks for your kind words about my blog!

But Stella Marie is right....no one should have to suffer constant pain (unless they are 23 weeks pregnant and reducing pain meds for the baby(ies) sake). I'm praying that we all will be able to get help with better pain management. And Stella Marie, you shouldn't have to choose between manageable pain levels and breathing...that really worries me!

Very careful, gentle (((((((((((hugs))))))))))))) to all of you!
JoAnn
Posted 6/29/2010 4:56 PM (GMT 0)
 

 

     Well, Its been a hard 2 weeks so far. I've been riding the 9 - 10 waves for a little over two weeks and it is wearing me down. But... what more can I expect? Opioids, tri cyclics, muscle relaxors, NSAIDs, steroids, TeNS, epi series..... They make me as "comfortable as possible" while my progressive spinal deformity continues to... well, progress. I hope that I will soon become accustomed to this new level, if it is indeed, my new "10".

      One of my husbands relatives was so kind, and really I know she ment well... but hearing, "Can't they just fix it?" makes my heart feel heavy and sad. Is it hopeless to dream of being a surgical candidate? I know I will always be in pain. I know that, I accept it I really do! But... if there is some way, anyway, I could stop or slow the progression of my primary progressive levoscoliosis or my secondary dextroscoliosis.....  Dreaming of things like that isnt going to help me.

 

     "Oh no, you are an inch shorter. Need to have your cobb angles measured. Need to call the doctor."

 

     I just get this sickening dread. I was 5ft 8.5 in this exact same time last year!!!! Now I am down to 5ft 4in? ANOTHER inch in just 3 months time?!?!?!? I don't want to know how badly ive progressed! I just had X Rays done in MARCH! I don't want endless X rays. They hardly even do MRIs anymore. Its just x rays left and right. I wish that the incease in pain wasnt an indication of this sickening progression of my relentless spinal deformity. Last time the pain incerased permanantly I found out I had formed an entirely new secondary in my thoracic.... in less than 6mos time??? what now? What is happening now? What is going on to cause this new constant pain? The loss of another inch off my height?.... How much of this am I supposed to withstand?

 

       I can't believe my deformities started just 3 years ago. I can't believe what has happened to my body in such a short amount of time.

 

*huggs*

  dani
Posted 6/29/2010 8:03 PM (GMT 0)
 

 

    Those of you who havnt given an update try to pop in when you can. Let us know how you are doing. You know who you are...

 

    I wish none of us had to be in pain. For those who are in increased pain for various reasons / progressive illnesses, I am so sorry your pain is so high.

    Those of us waiting on test results and treatment planns, I hope the answers needed come quickly.

    Thank You All for updating us. I know, for myself, it is hard to update. I know some of you feel the same way. So thank you very much 

 

*hugg*

  dani

Posted 6/30/2010 2:48 AM (GMT 0)
hey guys. Good to hear from everyone. I wish everyone was doing better though.  As for me I am feeling a lot of anxiety. I am also having a flare of carpal tunnel. I will be getting some injections for that now. I am having fatygue and pain as usual.

on a good note I adopted a kitten, We named him spike. He is so cute and he has lifted my spirits,

be well folks

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