I am still alive but not kicking so good.

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straydog
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Date Joined Feb 2003
Total Posts : 13461
   Posted 9/21/2005 9:55 PM (GMT -7)   
Hey Gang,
 
Call off the dogs, I am really alive. Oh, its been so long. Well, lets see, I spent 5 days in the hospital, CHF kicked my butt again.
 
Pain mgt dr changed my meds in my pump from Morphine to a nice cocktail of; dilaudid, fentanyl-S, clonopine and one other little booger I cannot remember. Lord, the drugs have fried my brain I think. The morphine just about did me in, I don't ever want to see morphine any time soon. In addition to the bad side effects, it flat made me feel sick all over and really did not help with the pain. After emptying my pump out, it still took 3 days for the morphine to clear my catheter line. In a few days my body alone felt better getting rid of the morphine.
 
We are increasing my doses very gradually and slowly. I get about a half of an increase, then go back in 2 wks & get the other half. He is doing this to see if we can stop me having the bad side effects. Old weird Harold here and her goofed up system.
 
I also got changed from Effexor 300mg to Lexapro to see if we can get the depression under control again. All I can say is I have been feeling absolutely rotten in every way possible.
 
Because of infection I could not have my Remicade, so my gut got in an uproar. about all I could do was sit on the pot with the trash can in my hands. I really got off my schedule on that one. Last infusion 3 wks ago really helped joint pain for about 2 wks, gut settled down some. My next infusion is next Wed, I will be back on going every 4 weeks.
 
Still having some problems with CHF, so that is being monitored. I am limited on how long I can sit at the puter and thats with my feet propped up. The last few days, the hip pain has really reared its ugly head. Not only do they hurt, but the sides of my hips feel like I have ran into something and bruised them. Anyone ever get this feeling in their hips? I need to call Medtronic and ask about getting into the jacuzzi, something to do with the temperature setting.
 
Well, gals, I had no sleep last nite so I am plenty wore out now and need to go crash while I can. Sleeping is really interesting for me right now. Hugs & Love to All, Susie 


Flopsie
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Date Joined Jun 2005
Total Posts : 1361
   Posted 9/21/2005 10:10 PM (GMT -7)   
Susie, so very sorry you are having such a rough time right now. Knew something was not right, since we had not heard from you in a while. I pray the meds will kick in soon and give you some relief...Man what a cocktail.

you take it easy and rest, just keep us posted when you can,

(((((Susie))))))

flopsie
Don't walk in front of me....I may not follow
Don't walk behind me....I may not lead
Walk beside me..and be my friend...
                                    Albert Carnus
 
and Lord, put your arm around my shoulder and your hand over my mouth
 
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Juliah
Regular Member


Date Joined Mar 2005
Total Posts : 21
   Posted 9/22/2005 6:32 AM (GMT -7)   
Susie, I'm sorry to hear you've had such a hard time. What were you in the hospital for? pain from RA? How long have you had CHF? I also have CHF, was diagnosed when my son was born 7 years ago. I'm interested in hearing more about you and your conditions. I hope you are feeling much better. My heart goes out to you. Love and very gentle hugs, Juliah

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/22/2005 9:26 AM (GMT -7)   

Straydog, I'm sorry to hear what you've been going through - I hope you get the rest and relief you so need.

**


 


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 9/22/2005 7:27 PM (GMT -7)   
Susie,
Stay tough , you'll get past this.
Craig

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/25/2005 4:48 AM (GMT -7)   
Susie!
oh boy!...what a time you've had. regarding the hip pain...i wish i had hip replacements already! @ the sides and in front i feel as if i'm a football player or something (gettin' dogpiled or tackled!LOL). it's painful and very difficult to sit.
i pray your new combo of meds works. i was thinking that morphine could actually cause an exacerbation of CHF? doesn't morphine cause edema? hmmm. awe Susie, i hope you begin to get back on your schedule. what a setback. you sound as if you have a fighting attitude! keep it up girl!! we are all rooting for you. happy you're home from the hospital. we will all be thinking of you!!!
{{{{{{{{{{{{ love & hugs }}}}}}}}}}}}}}}}}}}}
erin

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 9/25/2005 6:24 PM (GMT -7)   
Oh Sisie,

I'am sorry that you are having such a hard time I know we can all relate to the pain part.I do hope since they have changed your pain meds that this new coctail will do the trick for you and get you out of pain.I would like to say I will not take morphine because some years back (Long story will go into later)aqnd it was to the pint that I could not remember my own name let alone any one elese,It was so bad I could not tell you what day it was.So I do not do the Morphine at all.

Please susie keep us up-dated on how you are doing and how you new coctail works for you.Here is a bigg ((((((((((HUUUUG)))))))))))for you.
Thanks
Curley......
a.k.a.Mela...........


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/3/2006 10:57 AM (GMT -7)   
      "BUMP" for Jay
 
Hey Susie, just putting this thread bumped back to the top because our member Jay-L might want to look at it regarding the pain pump.
Anything else you can think of regarding pain management?????
 
Thanks so much,
erin

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13461
   Posted 1/4/2006 9:59 PM (GMT -7)   

Hey again, its me. Well, the new "cocktail" is much better than the morphine. Why he put morphine in my pump I will never know, I had big problems with it trying to take it orally.

I had an increase before Christmas. My increases are only 10%, I am still on a very low dose. I go in a week or so for a new refill & hopefully another increase. My meds are changed in my pump every 90 days. This is to help ward off any possible infection. I am still taking oxycodone 15mg for BT pain.

Some days I get around fair and other days I cannot get out of bed. The gut is still in quite an uproar and it has kept me in bed several days. I have Remicade scheduled on the 17th-see gi on the 30th I think. He wants to do a scope since I am having so many problems. Ugh, the prep is the worst. Think I may ask for the pills since the last 2 times I threw up more of the crap than I kept down.

I took a fall down my stairs a couple of days before Christmas. I was even holding on to both rails which I always have to do. I am thinking because these knees don't bend so well, I am not getting my feet off the floor very far. Stairs are really hard for me, along with trying to get up from the pot, kitchen table or car. I have darn near turned into a contortionist trying to do those 3 things. LOL.

Today I made myself get out of bed and I am really glad I did. I did some laundry and picked up downstairs some. I have really had a time with this cough. It has lingered since the 1st of Nov. when hubby & I got sick. I am wheezing really bad, so I hit my inhaler alot. But the air is smoky here from the fires. Got worse after my last Remicade infusion, in fact I had 2 infusions in December. What will I do if the Remicade stops helping me. I cannot have steroids of any kind, kind of scares me. I am having a bout with a sinus infection thats 2 in a month. Oh please Remicade, please don't be screwing with me. I have been on this crap every 4 weeks for 3 years now.

Need to go for now. Love & hugs to all. Susie



Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/5/2006 6:45 AM (GMT -7)   
Hey Susie, you becareful with them stairs girl! :) Hang in there... Have faith in the Remicade, maybe it is just a combo of different things... rest your knees and let us know how you are doing! - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/5/2006 11:07 AM (GMT -7)   
Why oh why, is nothing ever.....ever.....easy?
Please be careful Susie. 
Did you get bad swelling ever from the morphine? 
I pray your new cocktail works well.
Hmmm....I can use a cocktail right now.  LOL.  Is it wrong to have martinis before 5pm?  LOL. tongue
The best to you.  Hang in there girl!  Thank you for being there for me.
Erin

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/5/2006 9:01 PM (GMT -7)   

Susie, Hang in there. You will get through this, our bodies just take extra long to get through all these illnesses. Keep taking it easy and stop doing those acrobatics on the stairs!

tongue
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13461
   Posted 1/7/2006 3:57 PM (GMT -7)   
Its 81 here today and like a summer day. Crazy Texas weather. I went for a bit on the back porch and sat in the sun. Gotta get my vitamin K and charge my batteries up. lol.

CA-I will do my best to stop the acrobats on the stairs, for one thing I am too darn old to be trying out for the circus.

My tree is still up, minus the ornaments, still have the beads & lights to get off. I have to finish this closet upstairs before the tree can come up. By the time I pick up downstairs I am too tired to work upstairs. I have decided to call a friend and see if she can come help me next week with the room. I get so aggravated w/myself because I get so tired too quickly to suit me.

Hope all have a good day. Lots of hugs, Susie


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 1/7/2006 7:47 PM (GMT -7)   
Susie Hi,If you don't mind me asking what part of Texas are you in?My ex-father-in-law lived in Brownville.I know one year we whent to see him and it was this time of the year and it was like in the mid 80's there.I must say I did enjoy the warm weather thoe.Like every one else try to not fall on the stair's.Here is a ((((((HUUUG)))))))and i hope your caugh goes away soon and your sinuses quite giveing you problem's.
Thanks
Curley......
a.k.a.Mela...........


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/7/2006 8:38 PM (GMT -7)   
cool  hey Susie!  i'll take your 81 and trade ya for a 31.  DON'T FEEL BAD.  we celebrate Russian christmas (sis had a little party tonight in Hoboken) so the Christmas trees are still up and runnin'!  one thang at a time.  i'm in no rush...especially in your own house, the outside..yeah that first.  but the media rushes everything so fast and it seems like the holidays went so quick.
i'm with ya....tackle a few minutes of de-decorating each day.
hmmmm? what about Cirque' du Solei?  whacky stair stunts will probably fly by them!!  and BIONIC KNEES and PAIN PUMPS???? oh they'll eat that stuff up Susie!
Go for it!!
HAH!  i'm entertaining myself tonight...hopefully someone gets a chuckle from it.
rest well Susie and take care.
i know what ya mean with whiping out too quickly.  i had a conversation with my brother in law...and then had to go lay down!  even talking is fatiguing.
we're right there with ya!
{{{{{{{{{{{{ hugs }}}}}}}}}}}}}}
erin 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13461
   Posted 1/7/2006 9:26 PM (GMT -7)   
Erin, yes, when I tried oral morphine & morphine in my pump, i swelled like the Goodyear Blimp. I was so full of fluid I could barely breathe. It was awful.

Mela I live in Ft. Worth. Brownsville is south of me down by the border and much warmer year round. This is unusual for us at this time of year. Jan/Feb are really our worse winter months. I have a friend that lives here but all of her family lives in Brownsville.

I fell asleep earlier today at the computer in my chair. Needless to say, we had a very late dinner. Not sure how much longer I will stay up tonight. Hope I have energy to finish upstairs closet tomorrow. Hugs Susie


Flopsie
Veteran Member


Date Joined Jun 2005
Total Posts : 1361
   Posted 1/31/2006 8:47 PM (GMT -7)   
Hope you are feeling much better Susie, been thinking about you,

luvs and hugs from flopsie

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 1/31/2006 11:13 PM (GMT -7)   
Susie Hi,you are pulling some of my stunt's I can't tell you the times that I have fell asleep at the computer.Have you ever been to matamores (speeling)one thing sor sure it is a lot different.Just be carefull when you tackel upstaires rommorow.
Thanks
Curley......
a.k.a.Mela...........


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13461
   Posted 2/2/2006 10:42 PM (GMT -7)   

Hey Gang,

Wish I could write and say I am doing great and yada yada. But, that only happens on tv, right? LOL.

Well, I have been back in bed, in fact this week I only got out of bed to go see my gut dr on Tuesday. Guts in an uproar and of course so are the bowels-buy stock in TP peeps, I use alot. Back & hip pain incredible. I only thought it was worse until I got a charley horse in my leg the other night while in my recliner. I have a hard time pulling on the lever to get my footrest down, cat was on my lap laying on my heated throw with me-we fight over the heating pad and the heated throw. I ended up hyperextending myself trying to get out of the chair and that really kicked up the pain to about 25. I ended up finding some muscle relaxers which I broke into 4ths and took a piece and then waited 2 hrs took another piece. Thats was the following day on Sat. I called my pain dr but his office is closed on Friday but I left a message about taking Zanaflex, they were prescribed before my pain pump. The Zanaflex helped alot as long as I kept it going. So, I get a call on Monday its ok to take them, I said yes I know, I have been taking them since Sat and I am still alive today.

I am back to taking Lasix due to swollen legs and I also take my Potassium, but I don't absorb it well and the charley horses are awful. I get them in my thighs too and og they hurt.

Had an increase in pump last week and he wants an MRI done on my back. He was pretty upset that I did not tell him about the fall down the stairs. He says any kind of fall has to be reported to him ASAP so x-rays can be done to check my pump. For the MRI they are suppose to cover my stomach with a protective blanket so it does not screw w/pain pump. After the MRI have to go to pain clinic so nurse can make sure my pump is still working. Depending on results of MRI will make decisions on what to do next. I asked about x-rays on my hips and he says its referred pain from my back and I believe that. But, I still want my dang hips x-rayed so will ask my cold, cough & flu man to do that.

Saw my gut dr Tuesday and of course he wants to do another colonoscopy and is a little worried about some of my symptoms. He is now doing the Remicade infusions in his office, so his nurse will check with my insurance and see if they will pay for me to have it there. But, I got him to hold off on the scope till I get this back thing figured out and he agreed. I told him I could only deal with one issue at a time. I showed him my legs, bright red, very sore to touch, some swelling and hard as a rock. Then he got upset, says its CHF or could be a circulation problem to get into PCP. Meanwhile, stay off feet and get them elevated high. He is upset that I am still getting a small amt of Fentanyl in my pump and thinks that it could be contributing. I had problems with Fentanyl inducing CHF after patches were increased to 75.

Our weather here has been absolutely crazy. My grass is coming in, trees are budding. We have not had our winter here yet and its getting a little late. I feel too crummy to even go out and sit in the sun on the porch. Ok, enough whining.

Hubby says he wishes he had the video going when I was trying to get out of my chair, felt sure it would be a winner. Of course, he sees me stumble around here and tells me he does not see me being a ballerina. The smart a**.. I think he will no longer call me twinkle toes.

Hope everyone is as well as they can be. Hugs, Susie   



Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/3/2006 10:43 AM (GMT -7)   
Oh Susie... holy cow girl... take it easy will ya? :) Hang in there and get some rest! Tell your hubby that no you are not a ballerina, however you are the Queen of the house, so he should cater to your every demand! HA HA HA HA... :)
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 2/3/2006 11:04 AM (GMT -7)   

I might have to use that one myself, Ducky!

Susie, I hope you start feeling better. I'm sorry to hear you've been doing so poorly.

**


 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13461
   Posted 2/3/2006 7:58 PM (GMT -7)   
Be proud of me girls. I got my shower late in the afternoon and went & ran a couple errands, then went to 2 different stores and looked around. Took a half of a muscle relaxer and did fine with the driving. (At least I think so)

It really felt good getting out of the house and not going to see a dr or a hospital for a change. Does anyone else have trouble getting motivated to leave the house and go run an errand or two? I am fine once I get away from the house. But, I truly think I could live in my pj's and never leave the house. That is so abnormal for me. I am truly an outdoor person. Hugs to all, Susie


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 2/3/2006 8:30 PM (GMT -7)   
Yes, I have that problem with everything...I'm so darn fatigued and have the hardest time pushing myself to get up and push through it all and get going.
 
Same thing, once I get going I resent any thing stopping me from my goal because I know once I stop that is it for me.
**
 


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 2/3/2006 8:56 PM (GMT -7)   
I know what you'll mean,it takes me at least and hour before I can get to moving and it takes me for ever to get dressed as well.Susie I know how you feel when it seem's that the only place I go is to the doctor's and the hospital and the pharmacy.I get excited when I get to go to wal-mart that's sad isn't it.
Thanks
Curley......
a.k.a.Mela...........


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/4/2006 9:03 AM (GMT -7)   

hey it's OK, it's OK!   look at what the he** we're going through!  and we do the best we can.

i think i'm the youngest of the bunch? and only imagine what my peers think about this?  and when i see peole i used to know?!

my biggest accomplishments are: getting into the shower; POSSIBLE getting dressed!  and yeah, my only days out are when i have to get to the doctors or for labs or to the pharmacy!  but do not worry!....AT LEAST WE DO, DO THEM!!!  that's how i think of it sometimes.  if that's as much as i can accomplish....than that's ONE goal that completed!  "i don't have to have Ulga the home health aid here yet!" LOL....that's when i'll be in trouble!

i think you all are great, Keah, Susie, Curley, Camama, Ducky.  add on the fact that keeping up with a family, husbands, children or work?  it's a handful already with disease.....so i say Brava! for all the little things!

i just hate it when people don't understand when i can't do an "all day" thing.  luckily though....the people who have "stuck around" through this, are the ones who understand.  now i love it when my boyfriends gets all excited when he calls me @ days end and i can tell em'..."Honey, I showered...got dresses....AND WENT TO THE DRs!"  and he'll say. "ALL THREE?"  and it's like somethin' special! now he adds on..."Did ya poop??!!"  sometimes there's a good answer for that. LOL! tongue


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.

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