It's Monday - what's everyone doing?

[SarahL2491]

I personally have no medical issues, Diesel hopefully gets her stitches out today, she's 6 months and 52 pounds and a handful but is making progress with her training and husband has his first cataract surgery on Wednesday, with follow appointments, all week, so I get to play nurse.

I'm still waiting for a new infusion center to be "okayed" as I missed my April one over an argument with the finance dept.  My medicare deductible had not been satisfied and it was deducted from their bill.  So, unwilling to wait 10 days til my social security payment came in, they said basically "no $$, no infusion.  
So Biogen has been working on it but paperwork has to be exchanged and run by medicare, etc., before a new site will take you.  

So I am experiencing what people go thru when they go off of Tysabri and have to wait the 3 months for a new product.  It's not been fun for me!

Hope everyone has a good week, the weather is warming up, get your gel packs in the freezer and if you don't have one, contact MSAA and get a cooling vest and gel packs.  They are FREE.

Sarah

[Lulu54]

Oh my, Alex. Another puppy will sure bring additional energy into your house.  You are so good to take this one on.  I hear you about Grady - so sorry he didn't turn into a star pupi.

[HVAC]

Lulu yes I am getting a deaf dalmatian she is 12 weeks old. Polly is not sure how she feels about it. She came from Kentucky.The Rescue called us and asked if we would take this baby in April and we thought about it and said yes. I am hoping she will be a Service Dog. Grady just does not have the stuff. He is a great dog but a Service dog has to be awesome.

Alex

[Lulu54]

Alex, you are getting a new pup?   I am so out of the loop with what everyone is doing these days.

Sarah - that's a lot to consider.  hang in there.

[HVAC]

CT Scan and treatment for Cancer on Thursday. P/up the puppy Friday.

Alex

[SarahL2491]

Yes, that is what I am afraid of.  There are only 2 other sites available to me.  One has absolutely said NO because I take steroids for 5 days a month (before and after the Tysabri) and she believes (no budging her) that steroids increase your risk of PML.  My JC is + and has been, and my numbers are below 1.5 but above 1.00.  Doc wants to put me on the new Lentrada and he thinks it will "pass" this time, so if he is right (and he took part in the original study - one of my friends was in it) I need to go off of Tysabri in 2 months anyway so not sure its fair to set up a new site and leave in 2 months.  So have written him and asked for his advice…..remember he is several states away from me.  So if he is right, I have to save for staying down there a week in October and then again next year for 3 days.

l hate to give up Tysabri, it is the only one Medicare and Medigap will pay for 100% (rules out pills and shots) but is his decision.  I could of course, drive to his clinic once monthly but that would definitely break my budget for sure!

OT - puppy had her stitches out yesterday and actually kissed the horse in the pasture next to us that they lease from us.  She is fearless, and I dread the day she slips under the fence and begins to "heard" them as she is an Aussie.  But she is 6 months and we have a trainer coming to the house (same one the neighbor across the street is using with her new chocolate lab pup) next month.

Good to see Quix back!  

Sounds like all are busy and what I wouldn't give for a "holiday" but mine comes in September……….Sarah

[Lulu54]

thanks, Karry.  I am very anxious to hear the podiatrist's recommendation  - since I already had bunion surgery on this foot I have a feeling it might take surgical intervention. Holiday, no matter how brief, sure sounds good.  I hope you enjoy every moment.

Corriel- here's to a good visit with the neuro.  i hope the switch to tecfidera is something that is mutually agreeable.

Quix - the pt sounds good.  i hope it continues to help.

Sarah, the washout period from tysabri can be brutal from what i have read.  The MS nurse mentioned a holiday yesterday to me and I immediately said no.  Unless I have to stop it, I don't want to just take a break.

Corriel- maybe the cat can go outside and live in the hutch for a couple weeks?  :-)

[Corriel]

I am excited to have my annual neuro visit today and discuss new symptoms and switching to Tec. I also have a new job starting next week so am feeling a bit overwhelmed at the moment.

Have a great week!
Corrie

[karryon55]

I am heading off for a holiday this week so I am pretty excited about that at the moment. I am still having problems from what I believe was a flare which came on in February, but I have improved in many ways, just not as much as I would have liked.

I am only having 5 days holiday but I am going to eat what I want without worrying about the calories & relax followed by some more relaxing. I am starting a rehab program in June which will hopefully improve some of the areas I am struggling with.

Sorry to hear about your foot Lulu. I had a pin & plate put in mine after 6 months of no healing which was about 25 years ago when I was a teenager lol.

Have a good one everybody & take care,

Karry.

[Quixotic1]

I'm continuing to be in PT to strengthen my right hip flexors.  This has been very successful in the last month.  My gait is markedly improved.

I have started meditating again - no idea why I waited so long to start again.  It is making a starling improvement in my mental energy, which translates into a modest increase in physical energy.  It's easer to initiate doing the things I want to do.  And it's easier to carry through with them.  Yay.

The cats are all reasonably happy.  Clyde is delighted that the good weather is bringing out the garter snakes.  This delights me so much, too.

Quix

[Poppy7402]

Apart from a busy day today, not too much happening this week.  A new class of students start Thursday and then my usual class is back on Friday.

Our 8 lb 5 oz  rabbit developed a huge abscess in her dewlap late last week so had surgery to have that removed today.  She's eating and drinking already, only four hours after surgery.  She has to stay inside for the next two weeks so that should be interesting.  She's reasonably toilet trained, but not completely!!  The cat is not impressed either, considering rabbit is bigger than she is.  

[Lulu54]

it's nice to see the weekly post going - ~I have my infusion today so I'm good for another 28 days.  I saw the mS nurse about the possibility of a relapse - she thinks it probably isn't but residual fallout from a perfect storm of a couple vigorous infections i can't shake and a stress fracture in my foot.  Even if it was a relapse, treating with steroids is not an option because that would interfere with the healing of the bone.

Students graduated this past weekend and this week we have a number of adult events on campus, and then next week it will be very quiet.  I have to work until June 15 until I am off for the summer if my foot will hold up.  The CT scan results will be read this week and I see the podiatrist again on Monday to hear his recommendations.

Despite my best efforts, this aging gracefully thing is just not happening!

hugs to all, Laura

[Lulu54]

Hi, Lauren.  No everyone is affected by the hot weather, but most of us are.  The cooling vests are good but limited.  One of the best things you can do for yourself is stay hydrated with lots of water, take advantage of air conditioning and being in the ocean/gulf waters.  If you are out at the amusement parks, take advantage of the many inside locations you can stop at, rest a bit and cool off before going back into the heat.  The heat can be brutal but if you are smart, you can work around it, sort of!!

[Lor301]

Hi Sarah,

How important are the cooling vests?  I was only dx last month and going to Florida in June.  I'm in the middle of a relapse but have no experience with whether or not it will get worse for me in the summer.  Does it always/do you think I should get a vest just in case/are they very noticeable when worn?

Thanks for any input!

-Lauren