[Raglet]

hi guys

wasn't too bad all things considered. They pre-med me with 1000mg iv steroids, huge dose of phenagan, panadol etc, then drip the rituxan in v~e~r~y slowly. I was doing really well, so they tried to turn it up a little and that was ok for a while, then my body had just had enough. But I did really well just sitting bolt upright with oxygen whiskers (some desats, but nothing major), lots of nebs and just the tiny bit of rituxan trickling in. It took ages to infuse (plus the alarm on the infusion went off every other second which was a total pain) but I got through it. The best one so far.

They had to put the lure in my elbow, which made it tricky for such a long infusion, but it was the only place they could access. But, most of the alarms were actually to do with air bubbles in the line rather than positional.

Personally I think my asthma is under better control than it was, so that made a huge difference. Sleeping bolt upright is an over rated past time though, but with all that steroid on board it was hard to sleep anyway. Lovely nurse who joked about accidently 'dropping spilling a bottle of sleeping pills in your lap' - she was a laugh a minute which really helped. I couldn't even really go make a cup of tea as if I walked around I dropped my oxygen sats.

But, it's all done, which is good. But I am going in for cyclo infusion(cytoxan)tomorrow - eeewww ! I hate the stuff, makes me horifically nauseous. They said they give it to stop me making antibodies against the rituxan. Heck, I make antibodies against everything else, so why not antibodies against the rituxan.

I had another 'episode' with my tongue this morning, and I now can't poke it out at all. It won't reach beyond my lips in any direction. Actually my tongue is not working at all well, so my dysarthria is increased. The registrar tried to get neuro to come and see me, but they are in a meeting all moring, so by the time they get out of that and try and fit a whole day of patients into one after noon, the chances of seeing me are pretty slim (just an eccasbabation of a chronic problem) so I am just leaving a msg for my own neuro instead. Must do that. I think

But, they have added another 500mg solumedrol to my cytoxan tomorrow because of my tongue, and will repeat the same in two weeks. They said that they really didn't want to go over 3 grams of steroids in two weeks (plus my 20mg oral daily dose that I am on now) so that's all good.

Of course I am busy tidying out the airing cupboard, again, it gets a good going over everytime I have iv steroids. So it is not a tidy as it used to be before I had rituxan, when I was having iv steroids much more often.

Oh well, my dogs are looking at me wanting a walk, but I am thinking maybe not (don't want to drive out to the dog park) but I may just take them over the road for a little leash walk around the park later. I will get my daughter to come with me. They are such big energetic dogs that they really need their walk. One thing about exercising them so much, they become very fit and so continued exercise is really important. I will see if I can find a nice picture of them .....


hmmm, this smells pretty good - wonder if we should roll in it ?

After that big walk, we both need a sleep ......


Tommy snuggles up with Sammie the cat

Rachel sneaks on to the couch .....

back to the airing cuboard (and one very grumpy cat who I tossed out of the cubpoard)

raglet

 

[tbunny1]

:hug: Bless your heart, all the things you go through Raglet, and still keep your mood up. I wish I could bottle some of that to use when I'm being beat up.

That's alot of steroids - looking to join the East German womens' olympic team here soon? It's a wonder you get any sleep at all with doses like that! Bet you have the cleanest house on the block this week! :hyper:

I have never really understood what it is that is happening to your tongue - it just doesn't move as you would wish? Is it a paralysis? I am guessing it has something to do with cns activity - am I off base?

I sometimes feel like my tongue wants to curl up at the edges and stay that way. I have never mentioned it to the nuero because I thought it was so minor in light of everything else we talk about. Maybe I will next time.

It's wonderful you got through it so well - bravo! Here's hoping tomorrow will go just as well. Let us know - I will be thinking of you, brave girl!

 

[Raglet]

basically I am loosing movement in my tongue. One side of my tongue is very weak, so the strong side of my tongue pulls it over in a funny direction. The front section of my tongue is also very weak. I seems to be progressive, I wonder sometimes if it is part of my neuropathy although it is a cranial nerve rather than a peripheral nerve. I have a lot of nerve damage that is causing weakness that eventually becomes paralysis, but thank god so far no automonic nerves have been effected (breathing etc).

This is rather unusual for lupus, so I am not surprised if no one knows what the heck i am talking about ! Actually, half the time I don't know what i am talking about either hahaha

raglet

proud owner of one beautifully cleaned out airing cupboard

 

[acard]

Raglet,:hug:
I just want to THANK YOU for your wonderful, charming and uplifting spirit-always. You are such an inspiration to me!! I enjoy your animal stories and pictures. I hope the drs can help you to feel more comfortable with your tongue. Hang in there and keep us posted
Hugs,
Becca

 

[tbunny1]

Ok, this may be a stupid question, but just what is an airing cupboard?

Funny how we think we all speak "english" and can't always communicate!

 

[Katharine]

Hi Raglet,

I'm glad to hear that your rituxan went better than you expected! Let's hope it really helps now

tbunny - An airing cupboard is called a hot press in "Irish" English :rotfl: I'm afraid I don't know in any other "languages". It is a cupboard with the water boiler in where you can air clothes because it's nice and warm in there. Great fr having nice warm bath towels ready etc. Cats love them.

Katharine

 

[mysharonna]

((Raglet))

Yikes, you sure are being run through the mill. I sure hope you are on the better side of this flare soon. Your positive energy is such a tribute to your strong spirit..and an inspiration to many of us here, I can tell you that.

Your dogs (and cat) are adorable and look like they get along famously!!!

Sharon

 

[sam101360]

Raglet:

God bless your continued "UP" attitude about things, I don't think I would be strong enough to be so positive if I were in the same position.

I hope that this combo put things to bed for a while and that you can enjoy your vacation feeling better.

My love and warm thoughts.

Stephanie

 

[Raglet]

heck, if you American's don't have airing cupboards, where do you air your clothes ?

Traditionally an airing cupboard is the cupboard that has the hot water cylinder in the bottom (which makes it toasty warm) plus shelves above it to 'air' clothes on. Great for drying socks and undies over night if you have run out !

Our airing cupboard is a little different as we have a big outside gas ho****er cylinder, so our airing cupboard is a full cupboard of shelves with a wardrobe heater (60 watts) below the bottom shelf. It's full of linen, towels and anything that we need to air.

Oh and cats, it is ALWAYS full of cats. We have three, so eventually we just had to make them beds in there else they got their hair all over our tea towels etc.

I guess you just call it something different ? I just couldn't live without an airing cupboard, but then I never like to use the clothes dryer so in the winter we just have to air stuff when we bring it in off the line.

love the regional differences !

raglet

my goodness, what is remotely naughty about writing hot water cylinder ? Wonders never cease !

 

[Joandublin]

Raglet its that four letter combination again..... you didnt put a space between hot and water so you ended up with a combination of t*w*a*t

Ooops I'll probably get barred....

Remember we had that same problem with the Weight Watchers word when it was strung together as one word?

Dont you just love these automatic censors. Never a dull moment!

Cheers
Joan

 

[Raglet]

tut tut Joan, fancy you even knowing what a t*w*a*t is ? Moi, of course, innocent little love that I am (er hem) had to go and look up in the dictionary.

What kind of dictionary has that word in it you ask ?

The less said about that the better hahahahaha

:lol: :lol: :lol: :lol: :lol:

 

[Jirel]

Wow, the airing cuboard is fascinating. No we don't have them in the US, its part of the 'no time, fix things with power' thing. Dry them in the electric dryer or just hang them up. In Colorado hanging things over the shower rod to dry works just fine. (One of the things that increased my love of Colorado.) Here in Florida it is too humid and it has to be the dryer. Isn't England fairly humid overall? Much of the U.S. is rather dry. Um I suspect the T word isn't used much over here. It took Raglet talking about looking it up to make me realize what it is and I read a lot of books including many by English authors.

 

[lazylegs]

Hi Raglet,

Glad to hear your infusion went much smoother this time. Hopefully it helps your dysarthria like mine did. Good luck with the fatigue factor. The first two rounds I had the fatigue was terrible. The third infusion the fatigue was much less and I noticed results sooner.

I had to do a double take when I saw the picture of your dogs. The light colored one is a carbon copy of my daughter's dog. Her other dog is a black lab so it was like looking at pictures of our grandpuppies.

Take care,
Lazylegs

 

[lauralee77]

Raglet,
Just wanted to tell you how awesome you are! Even with all your health issues, you still remain encouraging to others and keep your sense of humor. It's refreshing to read your posts because you have made me feel better and lifted my spirits in the past and I know others feel the same way!
Big Hugs,
Lauralee
:hug:

 

[Raglet]

home from hospital, again - geesh, they changed their mind about the maximum of 3grams of mehtylpred in a fortnight, and gave me another gram today. So, she's flying high again. The dose of cytoxan was much lower than my usual (only 500mg rather than 1500) so fingers crossed my nausea aint too bad.

this time they have given me a three month course of prophelatic (sp?) antibiotics which is new .....

nice to see the nurses again, over the 10 years plus that I have been having cytoxan (on and off) they have all become old friends

cheers

raglet

 

[sam101360]

It's so good that you are home and sounding fairly chipper! You are constantly in my thoughts and prayers.

Love - Stephanie

 

[mysharonna]

Hi Raglet,

I think we just call it a hot water closet...growing up mine only housed tools and various odd and ends of junk and had a funny smell LOL :rotfl:

Yes, it would make total sense to store towels in there to stay warm and toasty!

Glad you are home and keeping your spirits up!



Joan: I couldnt for the life of me figure out why that had been censored..but once you spelled it out... LOL ...Living here in New York, that word is not difficult to hear often :lol:

Sharon

 

[Lily]

Hi Raglet,

That sounds like it all went a lot better. With that extra gram of Pred you should be able to dry those clothes by waving your arms around frantically :hehe:

:tuttut: on the **** word Joan :rotfl:it always takes me a while to work that censor out innocent thing that I am :innocent:

Take care Raglet :hugbetter: