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Posted 5/28/2013 1:23 AM (GMT 0)
Hey everyone -

Meant to post this earlier.... but I wanted to get the "check in" going.... those that want to do it today can... and we'll bump it up tomorrow.

Let us know how you are.... how you survived the long weekend... and what you've got planned for the week ahead.

Look forward to hearing from you all smilewinkgrin

Take care.... and have the best week possible. --Tina
Posted 5/28/2013 1:29 AM (GMT 0)
We had an extremely busy long weekend.... I always try to factor in "down time" when I have a busy day... but the last few days have been constant. So - praying that tomorrow can just be a quiet, restful day.

I see my PM doctor on Thursday. Nothing really new.... mostly just a med refill... and may talk to her about doing some more trigger injections in my thoracic back.

Had blood work done last week. The infusions I'm having ARE working - slowly but surely. My hemoglobin, iron stores, all of that are still out of range -- BUT higher than they've been in almost 3 years.

I can tell it's working because I'm losing some of that extreme weakness.... Plus, my extreme ice obsession is diminishing. For months and months - I was craving ice. Literally, I'd wake up mid-night and have to get ice.... Crazy, I know. Well, I finally found out that it's extremely common for those w/ severe anemia. Go figure.

Other than that -- it's the end of the year.... I've got one graduating high school... one being promoted from elementary school.... so it's all of those type of things going on.

I hope you all have the best week possible.... w/ as little pain as possible. Blessings -- Tina
Posted 5/28/2013 1:42 AM (GMT 0)
…we kept the holiday weekend simple this year, but as I have already posted….our excitement was meeting Chartreux and her husband. It was Awesome!

…now it may have been a simple weekend, but it doesn't mean that it was not filled with a little fun!…we had our grandson most of the time, and let me tell you he was spoiled! The ATV's got a work out, cause the little squirt loves it! tongue

We did get a chance this afternoon to go see Iron Man, and it was pretty good! Lots of Action for sure!

Back to the old grind tomorrow, and none too soon,….one more day off, and the wife will put me to work! smhair

Have a great week!

SE
Posted 5/28/2013 4:08 AM (GMT 0)
This was first time in 10 years my wife has ever been off for Memorial Day, making it a 3 day weekend for her. We only found out late last Wednesday, too late to make any travel plans, so we spent most of it at home together, some quality time.

Did some shopping, ate out a few times, did some light spring cleaning around the house together and worked on some minor home improvements.

Had date night Sunday night, went out to eat Mexican food, then off to see "The Great Gatsby", the new movie version. It was a great and touching movie.

Today, more work around the house together, and then late in the day, youngest son and his fiancée came over, and I was the Grill master (of course). I did a huge rack of ribs, some sausage, and grilled yellow squash. Wife fixed a big pasta salad, the kids brought deserts. We had a nice meal together and some good talking time on the back deck.

We were blessed with 3 perfect days of weather. Sunny, upper 70's by day, 50's at night, and no rain. My poor wife really needed the break and no pressure, so was glad in the end that we didn't have any formal plans, just lots of together time and chilling out time.

Pain wise, not a good 3 day for me, the pains are spreading more and more down my legs and into my feet, times again, that it was difficult for me to even walk about in the house. Will be seeing my oncologist for a full session this Wednesday, will report here when I get back from it.

Hope the rest of my CP family had as good a time.

david
Posted 5/28/2013 6:10 AM (GMT 0)
Well my week was busy with appointments as usual, but my daughter and I were rear ended on Wednesday evening. I've been extra sore in my hip, leg, and foot.

Was seen by urgent care and was told its a contusion, if I'm no better this week to follow up with my primary. My oral surgery site feels like its mending, but still can't open my mouth real wide yet and still on soft foods.

This week I see my Rheumy and get a mammogram on Wednesday, Thursday I see my primary care Dr who will be excited to see that the radiation I received to treat the huge wart on my thumb, has begun to work. It's totally AWESOME, I truly can't believe my eyes.

Pain levels are still way way to high hope to address that with my Rheumy, I'm supposed to cut back another 1mg on my steroids this week. There is NO WAY I can go down anymore.

Today was a very upsetting day for me, and I'm glad I see my counselor this week. My daughter kinda blind sided me today, she was upset, mad, crying, she bottles stuff up then boils over.

She apparently is resentful of my Dr's and she feels like they treat me like a lab rat. She said that IF she ends up with an autoimmune disease she's not letting them touch her, because of what they've done to me.

She said I've been watching you get sicker and sicker, you are dying. I'm watching you suffer and you're unhappy and I'm mad that they won't make you comfortable. She said she can't handle it anymore.

I've cried on and off most of the evening, I don't want my daughter to suffer in anyway, watching me decline. I feel SO GUILTY, I can't hide this from her, I CAN'T PROMISE her I'm not gonna die. I just don't know what to do. Then on top of it all, today is the 2nd anniversary of my Dad's passing, which I've really not dealt with the grief yet.

I'm guessing it's gonna be a hard and long week here. I hope my CP family has a better week, than me. I hope your pain levels are low and Tina and David I hope your Dr appointments go well.

You'll all be in my thoughts and prayers, hope you have a good week.

Hugs,
Barbara
Posted 5/28/2013 8:54 AM (GMT 0)
Spent part of the weekend working on the camper. Found out it has a major plumbing leak so I have to add that to the honey-do list. Really hoping it is just something small.

Pain wise I was hurting most all weekend. No big shock there since it rained most of the weekend with more on the way.

We are still waiting on our income tax refund....going on 11 weeks now, and we are also waiting on a $3500 check from my wife's last employer to get her profit sharing/401k out. One we get that we are going out and buying a riding lawn mower and a chain saw. Tired of messing with used models in the mower so we will be buying a new John Deere mower. As far as the chain saw goes we need that to cut up some branches that got knocked down last week during a big wind storm.
Posted 5/28/2013 10:51 AM (GMT 0)
Its been the usual crazy with some added cherries on top here this weekend.

Hubby worked a 12 hour shift on Friday and then back on Saturday for a 24 hour shift.

We've had so much rain the last week that we're growing moldy and webbed feet.

Made a trip to the ER with my 2nd oldest on Friday. She has a nice avulsion to the entire top of one of her toes. By the way the school nurse was carrying on you would have swore she had a partial amputation.

Made up salads on SUnday night for Monday. I knew I'd never be able to do everything on Monday. Our oldest is in the band so she marched in the parade the next town over and for our town. Our 2nd oldest was gone for most of yesterday for the Western Maine Track meet.

We did go down to our local town parade and to the cemetary and by last night I thought my legs and back were going to blow up.

Off to a doc appointment today. Regular quarterly bloodwork and I need him to look at my left hand. Not sure whats going on now but the entire meaty part at the thumb is swollen and really sore. And I need to call my PM and reschedule all the RF's I need done. Had to cancel them a couple weeks ago. But now I can't remember why.
Posted 5/28/2013 11:27 AM (GMT 0)
It was not a good weekend for me health wise. Still dealing with odd symptoms that together don't add up to anything I can figure out. Worrisome really.

Time for a primary visit and some blood work I guess.

Never ending in this land of chronic illnesses. My pain levels have been stable on the low end of the scale for so long now I almost was convinced the 6 year nightmare of multiple surgeries, hospitalizations,endless trial and Med errors was all my imagination.

I caught a 18 month break so many only pray for and the complaining now is whinny.

I have Neuro appt next week for meds but if my back doesn't let up I'm getting injection.

Hope the week is decent for everyone else.
Barbara (hugs) I think at times this life is so much harder for our kids then us..they don't have a Med for relief.

My youngest has actually been in therapy a few times for seperation anxiety issues and a mild form of post traumatic stress for th 6 yrs of unrelentless pain I had and she was witness to as well as all the hospitalizations.

She still has her moments but is pretty good at 15,still doesn't leave home for more then a night away.

To every one who overdid? Do we ever learn?

David I remember years stretches I never had a holiday off!lol, honestly didn't complain as I made way more money working them but positive those 50-60 hr stretches didnt help my deteriorating health and knee issues.

Glad you all got some quality time.
Posted 5/28/2013 11:47 AM (GMT 0)
Good morning! I made it through then weekend! I even took the kids to Cedar Point and survived all the walking. My diet was not so lucky however... It didn't make it through Saturday. LoL
Posted 5/28/2013 12:41 PM (GMT 0)
Good Morning,

Happy to hear everyone's update.

Tina, glad the infusion are working for you.
David. Barbara: Sorry about the increase in your pain level. Hope you get some relief soon.

I spent the weekend quiet. I had my physio app Saturday morning. Not sure how much longer I have to go, I'm hoping I can stop soon or at least maybe go not so often. Still awaiting on the insurance to settle the medical claims. Insurance can be a headache sometimes. It's really a long process.

No major plans for the upcoming week ahead. We have a long four-day weekend coming up. Thursday and Friday are public holidays here.

Wishing everyone a great week ahead.

UA
Posted 5/28/2013 1:33 PM (GMT 0)
I have been doing alright these past few weeks.

My last cervical esi is still helping, and I have started to lose a bit more weight. Although I hate dieting, I want to see if getting a bit more weight off will help reduce pain. My H doesn't realy want me to lose more, but is being suportive.

I have also started a light workout program to try and gain some strength. Trying to cut back on the muscle relaxers as well since they make me feel kinda like a zombie. I HATE the muscle relaxer feeling. redface

Anyways, sending positive thoughts to you all and have a great week. 

Posted 5/28/2013 1:48 PM (GMT 0)
You know - it's a really good family here at HW CP. I was just re-reading the posts here on this thread, and the care and concern between members is outstanding. I feel genuine care, empathy, and even sympathy between our members - that is something rare in most forums.

We need to keep doing what we are doing - its working. I am convinced that those that suffer CP have an even tighter connection between others, because we know first hand about pain and suffering. It makes it easier to identify with a fellow sufferer, because we know how we are feeling when we read and write here.

Still happy to be a part of this unique family, but wish I could snap my fingers and wish away all our combined pain.

david
Posted 5/28/2013 1:49 PM (GMT 0)
I couldn't agree more, David!
Posted 5/28/2013 2:16 PM (GMT 0)
I agree wholeheartedly David!
Posted 5/28/2013 6:37 PM (GMT 0)
I agree wholeheartedly as well David

I have already posted about my head pain, but I thought I would update with how my weekend went. Saturday and Sunday were quiet. I just rested, watched tv, and got on the internet. Yesterday, we went to canalside, which is on Lake Erie in Buffalo. I've never been so disappointed. I thought they would have music, venders, etc. They hardly had anything. The past couple of years they had it all, but this year was nothing. We only stayed a couple of hours. The only place to get a burger, it cost $3.89 per burger, and $1.75 for a diet coke. New York is so greedy like that. We have some of the highest taxes in the country.

Thursday, I see my PCP. That will be interesting, as I'm going to let her know I am coming in monthly to get my pain med scripts. I don't know how she will react, but I don't care. I've been suffering for over a month, and I'm sick of it.

David and Barbara, I hope you both have lower pain days starting today. Take care of yourselves.

love and hugs
Loretta
Posted 5/28/2013 7:20 PM (GMT 0)
thanks and hugs back, loretta
Posted 5/28/2013 7:54 PM (GMT 0)
Your welcome David
Posted 5/28/2013 8:03 PM (GMT 0)
Had an incredibly busy weekend. My son and his family were visiting and my daughter and her family were over most of the time. I was cooking for 12 all weekend and forgot how exhausting and painful that can be! We had all 6 of the grandkids spend the night which was fun but tiring.

So of course I'm in bed today trying to recuperate. We see the surgeon tomorrow about my husband's prostate cancer so I'm a little stressed over that. Also trying to decide if I should get in sooner than July to see my Rheumatologist. I'm just not responding well to the added Humira and Arava. But its all good smilewinkgrin
Posted 5/30/2013 12:53 AM (GMT 0)
Barbara, David, Vickie - and anyone else I missed who had a rough weekend - I hope that today is a better day today.

My weekend was pretty quiet - I had my second cortisone shot for my hip on Friday and whether via injection or tablet, steroids tend to knock the stuffing out of me for a few days.

I've been working at my bears and my soaps - trying out a few different recipes (honeycomb or chocolate fudge soap, anyone?) and trying to decide on a name for my business.

Today I have to see my doctor again with what feels like yet another UTI (though as many of my cultures have come back negative, he is wondering about a neurogenic bladder or IC) :-(

Laura
Posted 5/30/2013 4:05 AM (GMT 0)
Oh Laura I sure hope neither is the case. I hope you feel better really soon. Take care my friend.

love and hugs
Loretta
Posted 5/30/2013 4:22 AM (GMT 0)
laura,

chocolate fudge soap? I would be willing to test that.

hope you feeling better

david
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