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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/27/2013 5:45 PM (GMT -6)   
Well as I'm sitting here trying to eat something, thought I stop in and say hello. I was up really late last night posting, having issues with sleeping again.

My fibro is acting up so badly ever since coming off my muscle relaxers. The pain management folks at NIH are really pushing me to use my biofeedback skills. I know they help, but I can't physically relax my muscles. This particular Dr believes that it's the mind that relaxes the muscles, but in doing that it also relaxes the brain, which relaxes everything thing else most importantly my breathing.

I'm really struggling with eating I was retaining a lot of fluid when I was in the hospital last time, that was around March 18 or so. Well since then I've dropped 22 lbs. I'm lucky if I get something in me once a day. If feel nauseated all the time like never ending morning sickness. I just managed to eat 1 poptart and 12oz of milk. That's all I've had to eat today. Yesterday, it was a bowl of granola and yogurt.

With all the worries about the possible multiple myeloma it really has me wondering with all the nausea and weight loss if in fact the cancer is already in full swing. Will see my Rheumy on the 6th expecting him to have me restart the injectable MTX again. Today hubby and I went to the commissary and it was so hard to walk thru the store. My ankles are so stiff now since decreasing my steroids. I truly am miserable, I don't know where to turn to or what to try anymore.

Just wanted to say hello and let you all know that I'm thinking of you. I hope you all had good weather today and were able to enjoy it. Even though I can't sit outside right now, hubby has opened the windows in the room where I'm at and the breeze is nice. I hope you all get to enjoy your day tomorrow. I will need to push myself tomorrow, as I'll have to take my daughter back to college late in the day. I'm hoping that the traffic isn't to bad on I95 north bound. It's hard to believe that in 3 1/2 weeks she'll have completed her sophomore year of college. So I'll be bringing stuff home with me tomorrow. It's only 80 miles to her dorm, but if traffic is bad it can take forever to get there or get home.

Hubby took her back at spring break I think she went back on April 3rd. They left our home at 3pm and he didn't get back home until 10pm that night. With the way I've been feeling this will totally drag me down. Wish me luck and pray it doesn't make things worse for next week, I've got radiation twice next week.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/27/2013 6:25 PM (GMT -6)   
Hugs, Barbara.
Make sure your daughter drives you back so it's not too much on you.
Can you drink something ike ensure or boost to keep up your strength?
Ask yourdoctor if he can give you something for the nausea.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/27/2013 7:26 PM (GMT -6)   
Hey Joy,

I'll have daughter drive to the college, but I'll have to drive the 1 1/2 hrs back to home on my own. She has to stay at college until May 17th. She'll be done then for the summer. She landed an internship at a University in NYC for the summer. They will provide her with a dorm room and meals, plus a stiphened salary for the summer.

I won't be taking her to NYC it's a 4 1/2 hour drive plus the tolls up there are unreal. I'm glad she has a job, but the Mom in me is worried about her being in NYC all summer.

As to the nausea I'm on Zofran have been since 2004. I try to drink the ensure but it doesn't taste to good LOL, I've been trying to do smoothies or yogurt with granola mixed in it.

I'm gonna go and take a hot shower and something for pain and maybe I'll feel better then.

Hugs,
Barbara

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/27/2013 7:30 PM (GMT -6)   
Sounds like a really long day on the horizon for tomorrow. I hope the traffic doesn't give you any trouble and that everything goes safely.

Maybe you can get some IV nutrition going if you can't eat soon -- without food & vitamins you can't heal very well! I know Butterflake (Donna) had some kind of IV 'food' going for quite a while last spring.

Be safe!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/27/2013 7:42 PM (GMT -6)   
 
Hi Barbara,
 
       I am going to be thinking about you on your drive tomorrow.  Take breaks when you need them.  I know that I can't drive for very long before I need to exit the car, gently stretch my body and relax.  It's hard sometimes when you are on a main freeway, but I have learned over time where I can safely stop.  The worst is when I have to drive through San Francisco!!!  Our day today was cool, foggy and slightly breezy.....however the sun did come out for about an hour.  Typical Northern California weather turn .   Hope you start feeling better soon.
 
Hugs!
Laura

bluejeans
Regular Member


Date Joined Dec 2012
Total Posts : 269
   Posted 4/27/2013 8:24 PM (GMT -6)   
Barbara,
I would put ice cream in the ensure for my mom- in- law and she would eat it that way. She did not like the taste of it either to drink it. She preferred the strawberry. Maybe that would help.

My hot tub helps with the muscle and joint pain. I wish you could borrow it.
Post lymphoma, Spleenectomy, Lupus, Sjorgrens, RA, Anti-phosphoid syndrome, Fibromyalgia, GERD, short bowel syndrome, scolisis, arthritis of spine, spondylosis, splondylesis, DDD,DJD

Faith in God, the love of my family and a good attitude keeps me going.

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 4/28/2013 12:00 AM (GMT -6)   
Hi Barbara. I'm sleepy and not thinking well, but do you only take zofran? I can take  Zofran, but I have a second option which is promethazine oral. I get nauseated most days, but I really can't stand that feeling so I take 1 Zofran or 1 promethazine, then sit upright for about 20 minutes, and burp until I feel better.  I feel better means no more nausea, but you know lupus and sjogren's are just waiting, wringing their ugly little hands for their turn.
 
Please drive safely, okay?  I love you Sweetie, Donna

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/28/2013 4:14 PM (GMT -6)   
Barbara, Ensure isn't the best one but I like Boost Protein and Gulcerina drink. They taste a lot better.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/29/2013 11:11 PM (GMT -6)   
Hey Joy, Lynn, Bluejeans, Laura, and Donna:

Thanks ladies for your suggestions on the ensure. I will have to try some vanilla ice cream in the strawberry sometime this week.

Donna I totally understand the nausea stuff. I have Gastroparsis and I never know when I'll be vomiting what I've eaten. I take the zofran, I can't take promethazine. It's really strange it was my main antinausea medication for years.

Then about five years ago I began having bad side effects from the drug. I was in the hospital and they had given me some IV, about 10-15 minutes later I felt dizzy and then my arms and legs began to twitch uncontrollably. It was almost like I was possessed, and I just couldn't remain still. Those are a beginning signs of a severe allergic reaction to the drug. I'm lucky I was in the hospital when it happened.

Laura your weather sounds typical for northern Cali, when we lived in that area I actually didn't mind that weather, don't get me wrong I preferred the nice California weather most days. I hated leaving the area.

Bluejeans I wish I could use your hot tub. Heck I won't even use the tub in our guest bathroom, it's not deep enough to soak well, so it's hot showers for me.

Lynn don't worry I'll get something in me somehow. See my primary care doc this Thursday, I'll see what she recommends. Anyway, thanks for your advice and well wishes.

Hugs,
Barbara

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/29/2013 11:30 PM (GMT -6)   
Just a quick update, Nikita and I left yesterday evening at 5:00pm to head to her college. She didn't drive as she was really tired and had a headache. I kinda hauled butt I pulled into the dorm lot at 6:00pm

I left the school at 6:30pm and pulled into my driveway at 8:10pm last night. Hope I didn't get tagged by any speed camera. I got hit in January with one nono nono nono hubby wasn't pleased.

Today I woke up hurting at a 6 out of 10. Left the house at 9am I had to have radiation at 10:30am. Glad I left at 9 cause I didn't get to the hospital and parked until 10:25am, for all appointments at military hospitals or clinics, you are suppose to arrive 15 minutes early. I hate days like this I only needed to drive 19 miles to the hospital.

Had a bunch of appointments and didn't get home until 4:00pm this afternoon. Pain by this point up to a lovely 8, so on went the nightgown, pain meds in tummy, and I ate an avacode for dinner.

It's now 12:30am and I'm still hurting like I've been hit by a train. I have pulmonary rehab early in the am cry cry I hurt so bad in my ankle joints, really stiff joints and swelling. Dreading walking on the treadmill with 5lb weights on my feet.

Well that's it for now, I have a dermatology appt on Wednesday, Thursday I will have rehab at 9:30am, then off to radiation and primary care appt. Gonna be a LONG week for me.

Hope you all have a good week and less pain and no flaring this week. Take care and be safe this week. Thanks for always being here for me.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/30/2013 2:56 PM (GMT -6)   
Ouch! those feet do sound sore. I've been having issues with my feet being so tender I can't stand my shoes. I hope thay took pity on your sore feet today.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 5/3/2013 1:34 AM (GMT -6)   
Ugh it's 2:30 am almost and I'm still up. Today has been an exceptionally hard day for me.

Started my day off at pulmonary rehab at 9:30 and then to radiation, had to get labs done and my mediport flushed, and then see the Dr. Didn't get home until 4:30 pm this afternoon.

My ankles are so swollen and stiff, my PCM noticed I can barely walk. I also have severe pain on my left heel exactly on the very edge of the heel, where my achielles tendon attaches. Also, showed her a lump on the ball of my foot kinda in the center just on the edge where the crease would be when you curl your toes

All this pain in my left foot is a solid 8 out of 10. The right foot is like a 6 out of 10. This is jut way way not cool, Dr told me she thinks I have a neuroma on the ball of my foot shakehead shakehead I NEVER seem to get a break.

I'm in a major flare and so help me, if my Rheumy doesn't do something to help me, they may need to give me a padded room. iI see him first thing Monday am. Take care and I hope you all have a good weekend, feel well and I hope you have no pain.

Hugs,
Barbara

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/3/2013 11:48 AM (GMT -6)   
Tell them it's too d&$% much pain and get some meds back on board!!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/3/2013 2:22 PM (GMT -6)   
I agree that is too much pain for you!

Those neuromas hurt something terrible! I've had one on my tendon on the back of my ankle long ago. They gave me the option of having it removed or wait for the nerve to die off. I didn't want the surgery so I opted to wait for the nerve to die. It took 3 months of hurting for it to stop hurting.
My father had one removed from his big toe years ago also.

Rest and try to put those feet up.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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