This and That, and then some
First things first. I want to welcome my six new followers! Now that I have been visiting more blogs, and branching out into artsy and Zentangle blogs, I am discovering a new world out there. Yay! Thanks for following! Once I get my printer issues figured out, you'll be seeing more of my art work.
I haven't written since January 23, which was Chinese New Year, but I was more concerned with the week of snow we had, and the ice storm that followed. I had to cancel our meeting and reschedule it to the following week. Also in January, I finally saw my neurologist, and I decided to go back on Copaxone after my "injection vacation" of around nine months. During that time I did have a relapse which left me with some more mobility issues, and I did not have any relapses while I was on the Copaxone. So, it was my decision alone, no pressure from my neuro, but he's happy that I decided to get back on it.
He mentioned Gilenya, but said he wasn't too happy to hear about their latest report of a patient dying after taking it. [note: after hearing that I would not take it even if he had recommended it; the convenience of a pill vs. a shot is not worth the risk!] He also mentioned Tysabri, but said if the C. was still working in preventing relapses, we won't go there ... until. So that was good, and I have a follow up appt. in three months. But I gotta say, I feel like everything takes so. much. energy. It's like I have two wooden legs. I brought the walker into the house before Christmas, but that was because I had a touch of the flu bug. Things have not gotten better since then, alas.
So, I had a cath change to start February off, followed by an appointment with my new urologist. My first impression of him was good; he was personable, thorough, and followed up with a few things he found in my file. Like an ultrasound that was taken in 1998 which showed that my left kidney was hydroencephalitic (sp?) (enlarged). I was never given that result or an explanation of the ultrasound, so we did the obvious thing - we repeated the test. Good news, everything is fine. My former urologist, BTW, according to one of the office personnel, was given the ax. Forced retirement. He's keeping busy, though, doing work for the VA with returning (or aging) vets. So all's good.
I thought last Sunday was the 13th, so I decided to make some delicious real French chocolate mousse for Valentine's Day. I just needed a little help from DH, and that was to beat the eight egg whites to stiff peaks. If we had a decent electric beater, I think I could have made it by myself, but we don't, so I put him to work. The mousse is delicious, by the way (I think I have already mentioned that, but it bears repeating) - and I'm having some right now. With real whipped cream, of course. Mmm-mmm good. I'd give you the recipe (from the Time-Life Cooking of Provincial France cookbook), but it's long and complicated, requiring a double boiler, an ice bath, and a heavy bottomed saucepan. Oh, and in the absence of small electric appliances, a strong arm; but it's so worth it.
My memory, lately, has been shot more than is usual. Tonight, as I was replacing my disabled parking permit card that came in the mail, I noticed that the AAA card that is in my wallet is the expired one from last year. So, what the hell happened to the one that came with the renewal notice? I need to look for it (what a pain), but good thing that I noticed. Now I can search for it before calling for a replacement card.
Jan, of Bifurcate in the Road, was talking about how crummy it is to have things break on you when you don't have the money to have them fixed or replaced. Our printer has been out of commission for many months now, and we finally got the yellow ink cartridge replaced just to find that it wasn't the only problem. Somehow I need to motivate DH to do some deep cleaning of the print cartridge, because the deep clean that the printer does isn't doing the trick, and just uses up the ink. Hey Jan, care to fly to Tacoma and take apart my printer and fix it? I'd let you sleep on my couch!
So, now I have to write up the agenda for Thursday's meeting and send it to someone who will print it for me. But I decided to do this instead. You lucky readers, you.
Good night, TTYL, and Be Well,
I haven't written since January 23, which was Chinese New Year, but I was more concerned with the week of snow we had, and the ice storm that followed. I had to cancel our meeting and reschedule it to the following week. Also in January, I finally saw my neurologist, and I decided to go back on Copaxone after my "injection vacation" of around nine months. During that time I did have a relapse which left me with some more mobility issues, and I did not have any relapses while I was on the Copaxone. So, it was my decision alone, no pressure from my neuro, but he's happy that I decided to get back on it.
He mentioned Gilenya, but said he wasn't too happy to hear about their latest report of a patient dying after taking it. [note: after hearing that I would not take it even if he had recommended it; the convenience of a pill vs. a shot is not worth the risk!] He also mentioned Tysabri, but said if the C. was still working in preventing relapses, we won't go there ... until. So that was good, and I have a follow up appt. in three months. But I gotta say, I feel like everything takes so. much. energy. It's like I have two wooden legs. I brought the walker into the house before Christmas, but that was because I had a touch of the flu bug. Things have not gotten better since then, alas.
So, I had a cath change to start February off, followed by an appointment with my new urologist. My first impression of him was good; he was personable, thorough, and followed up with a few things he found in my file. Like an ultrasound that was taken in 1998 which showed that my left kidney was hydroencephalitic (sp?) (enlarged). I was never given that result or an explanation of the ultrasound, so we did the obvious thing - we repeated the test. Good news, everything is fine. My former urologist, BTW, according to one of the office personnel, was given the ax. Forced retirement. He's keeping busy, though, doing work for the VA with returning (or aging) vets. So all's good.
I thought last Sunday was the 13th, so I decided to make some delicious real French chocolate mousse for Valentine's Day. I just needed a little help from DH, and that was to beat the eight egg whites to stiff peaks. If we had a decent electric beater, I think I could have made it by myself, but we don't, so I put him to work. The mousse is delicious, by the way (I think I have already mentioned that, but it bears repeating) - and I'm having some right now. With real whipped cream, of course. Mmm-mmm good. I'd give you the recipe (from the Time-Life Cooking of Provincial France cookbook), but it's long and complicated, requiring a double boiler, an ice bath, and a heavy bottomed saucepan. Oh, and in the absence of small electric appliances, a strong arm; but it's so worth it.
My memory, lately, has been shot more than is usual. Tonight, as I was replacing my disabled parking permit card that came in the mail, I noticed that the AAA card that is in my wallet is the expired one from last year. So, what the hell happened to the one that came with the renewal notice? I need to look for it (what a pain), but good thing that I noticed. Now I can search for it before calling for a replacement card.
Jan, of Bifurcate in the Road, was talking about how crummy it is to have things break on you when you don't have the money to have them fixed or replaced. Our printer has been out of commission for many months now, and we finally got the yellow ink cartridge replaced just to find that it wasn't the only problem. Somehow I need to motivate DH to do some deep cleaning of the print cartridge, because the deep clean that the printer does isn't doing the trick, and just uses up the ink. Hey Jan, care to fly to Tacoma and take apart my printer and fix it? I'd let you sleep on my couch!
So, now I have to write up the agenda for Thursday's meeting and send it to someone who will print it for me. But I decided to do this instead. You lucky readers, you.
Good night, TTYL, and Be Well,
I'm sorry you have to go back on meds. Hope they help you to stay the same or improve.
ReplyDeleteThat's the plan, JC. Drugs are the name in the game, unfortunately.
DeleteGlad you came back, Webster! I'm still off Copaxone - since I do not have RRMS, I don't think it did anything for me. We each have to do what's best. Good to see your blog!
ReplyDeletePeace,
Muff
Thanks, Muff. I don't know what kind of MS I have anymore! Doc calls it worsening RRMS - Have you ever heard of that in the literature? Whatever. I didn't think they were doing anything for me either -- but it turns out that they were. Alas.
DeleteWelcome back. You were missed. I am still on Betaferon for similar reasons to yours for opting for Copaxone. I have had relapses, and some of them have been moderately awful but the neuro assures me they would have been worse without it. So the human pincushion continues.
ReplyDeleteI really hope your symptoms drift away as you return to the copaxone regime.
So glad you are back on Copaxone...These injections have helped me tremendously. I know everyone is different though. Nice to have you back to blogging
ReplyDeleteI was so glad to see your post today. I've missed you! I started Copaxone and although, I don't like the daily injections, I must say it is working! I too had taken a hiatus from any MS medications of about nine months. I had a really bad relapse and for me the lesson was learned - something is better than nothing! I lose something everything sometimes multiple times per day. It drives my husband crazy, but he has learned to let me gripe and complain until I find it!
ReplyDeleteBest wishes,
Tammy
Thanks E's Kiddo, Kim and Tammy. I'm back to being a human pincushion, but one with lumps. Worse yet, I don't feel any different for it, not that I really expected to, but hope springs eternal!
DeleteHello again long time no see post. If I could fly there I would buy you a new printer! You might be placing more talent upon me than I deserve. That said - eh not knowing what the new problem is I can only guess - but that is pretty much what I do anyways :).
ReplyDeleteIf it is still the print head clogged you might try removing the ink cartridges and after unplugging all cords from printer use a bit of water on the head itself - i put a drop on each hole where the ink would go in and let it soften a big. Dab it up after a bit and try the ink again. Hubby if he is able to can take the head out and clean it. I have set them in warm water before and gotten the dried out ink to clear out. Just have to wait and make sure it is dry before putting it back in.
Sometimes a new printer is cheaper than buying the ink. Best of luck let us know what is wrong and how it all goes. Now if you wanna fly me there so I can have a vacation . ....
Good that you noticed the AAA card it can be such a pain in arse if you need to use the service and dont have the right card - they do call in a check but . ...
Jan
eh ok I think my whole dang comment just disappeared when I hit publish??? If it is here I will see it later if not I will try and remember what I typed ....
ReplyDeleteAs you can see, it appeared just fine, so you don't have to remember, you can see it here, but you might have to come back for that :-). Sorry, no vacation for you. I checked with expedia, and I could get a new printer for cheaper than an airline ticket for you. I will have Hubs clean the head; I just have to do some negotiating for that to happen. Crap.
DeleteI did very well with no DMDs for 16 years, so you keep up the good work with your exercises.
As google is tweaking away . ...
Deleteand yeah new printers are sometimes cheaper than buying new ink - strange but true.
Now while it might be cheaper to replace the printer than purchase an airline ticket it does not come with me - bra ha ha.
Aah, the DMD's. It is a personal choice. If something is working stick to it no? Now stretch for those toes :)
Webster - Skip took Copaxone for years under the theory that it might help folks who have secondary progressive MS. We always suspected it wasn't really doing anything but she kept with it because, well, you never know. She finally stopped it a year or so ago after a long conversation with the nurse practitioner at the MS clinic she goes to. Collectively, they figured it wasn't really doing her any good.
ReplyDeleteIn your case, though, it sounds like it did have efficacy, since you didn't have any relapses while on it. Hope you go back into a relapse-free world again, now that you've started back on it.
I had BETTER remain relapse free now that I'm back to a shot a day with lumps and sore spots. It's not bad, but Criminy!! I'm having the nurse come out to my house for "injection education." I haven't told her I've been doing it for nearly three years. I figure she can answer a question or two, and show me how that clumsy autoject works! She might as well earn a buck plus mileage from Shared Solutions, right? I'm just doing my part for economic recovery.
DeleteGive Skip my best, and to you as well.
Hello and welcome back! I have to laugh because when I first read about your misplaced AAA card, I translated that in my mind to AARP and thought how hilarious to misplace the "aging" card! Oops, guess the joke is on me!!
ReplyDeleteLD
Hey there Linda,
DeleteNo it wasn't my AARP card, because I don't have one, unless you consider my AARP/MedicareComplete issued by United Healthcare insurance card. It would be really sucky if I lost that one. HA.
Glad to see you post, glad to see you're doing well. And wow there is BrainCheese!
ReplyDeleteMy memory isn't too fond of me so I am not too fond of her either. =)
I KNOW, the cheese stopped by! What a surprise!!
DeleteI'm hangin' in there. Reading more than posting.
Love choco mousse. They serve it here at least once a month. Isn't it great to 'branch out?' Meet new people who live a life never thinking about MS. Just meeting new people--I love it! I see MY new neuro in a few months. Always go in hoping for one who seems to care about ME and gives ideas for making me better--we shall see. ENJOY YOUR DAY!
ReplyDeleteWe need to E-mail. I'm curious which docs you've gone through, and who you're trying next, I hope she works out for you,
DeleteChocolate mousse once a month -- I could livve with that... but I bet it's not as good as mine :-0.
hey! you're back! ok, i know .. i'm a bit late... sheesh my world has been crazy causing me to miss out reading words of others... but here i am... and you are back! woot!
ReplyDeletefunny that you mention going back on the copaxone regime... i have been debating stopping it...
It's such a personal decision. I have to remind myself that these drugs are not intended to make us feel better, just to slow progression and the number of relapses we have. I am at the point where I don't want to risk another relapse because I don't recover from them anymore. But what do you exxpect after 30+ years with this disease? I'm a hop, skip and a jump from w/c dependence - and my house is really too small for that, so must stave it off as long as possible - without risking brain cancer or heart defect, that is.
Delete