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