What is up this 2nd week of June?

[HVAC]

After reading the post about the woman with MS and the horse farm it got me thinking I want to ride while I can. So I put out a post on Craigslist and had lots of responses. I met with a lady yesterday so as soon as the surgeon clears me I am going to start riding lessons.

Today I started back in the studio. I found to my amazement over twenty paintings 3/4 done so I do not have to start from scratch.

Thursday I meet with My PCP about pain management. Thursday I have therapy.

I hope everyone is fairing okay.

Alex

Friday I am seeing the surgeon

[Sarahsmom46]

It's a much quieter week this week as far as medical appointments.  

I'm still getting home PT, yesterday and Thursday this week.

My son David is coming in today from California for a 2 week visit.  All 3 kids will be together at the same time. Wish us luck.  

I hope to return to work next week, half time at first.  I have been off work since mid-April and the financial loss has been significant.  I am nervous about returning as I was using a cane back then and now I must use a walker.  This recovery has been much slower than past relapses.  Very frustrating, but I will get along just fine.  I am sure of that.  

Other wise, things are going ok.  I love having my daughter here right now.  

My best to everyone and hope we all have a good rest of the week.  

Julie

[Lulu54]

I was hoping she would post it herself, but I happen to know that DJ (shadowsister) has a very special birthday this weekend.  Be sure to drop her a note and wish her the best!

[Quixotic1]

Thanks, Alex!   what a joy it is to read my family's plans and get a quick update on the goings-on.  I love this thread!.

I was hoping to be on a high dose Vesicare this week, but my insurance denied it until I failed ditropan XR and Detrol LA, even though I have already failed Enablex and Sanctura, so off we go onto my fourth bladder med.  I am still losing all of every bladder-full.  I still have pelvic and perineal pain with cramps and dysuria, so life hasn't improved in that area yet.  Somehow, though, it feels like I have a new norm and I'm not so bummed out about it.  I guess you can get used to anything.

I see the Uro-G this Thursday for review.  I suspect the next month will be spent trying the various meds and seeing if we can get ANY control over the incontinence.  I am still very upset that the urodynamic studies showed no abnormalities.  I don't understand it, because I can't think of a single instance at home when my bladder behavior has seemed normal in the last three months.   Did I just become UNtoilet trained somehow??  
My MRI  (brain, C-spine and T-spine on 3T) was Saturday.  My back is better after laing motionless for almost 3 hours in the machine.  I have no great hope that anything will show justifying the increase in symptoms.  It never does.  I'm not being pessimistic, it's just that the MRI has changed only minimally in the last 4 years.  They'll call me if anything is interesting.

I'm still awaiting PT referral for gait and strength work.  Several new studies recently showing the benefit of weight and resistance traning for overall improvement in MS balance, coordination, gait and strength.

I'll try to be here more often.

Quix

[Sailorsong]

Well the most obvious is Nashville, TN.  From Nashville you take I65 south for about 1 hour and then head west for another hour. There is also a National Park near me, but it is actually 440 miles long so it is near just about everything. The National Park is the Natchez Trace Parkway and it runs from Nashville to Natchez MS. But there is a camp ground and monument about 10 miles from my home for Meriwether Lewis ( as in Lewis & Clark).   This is the location of where he died and was buried, the county I live in is also named after him.

Dennis

[PastorDan]

Curious, Dennis: what in TN are you near that us flatlanders might know by name or passing through?

My week -- and next -- are tied up in the perennial "panic mode" days leading up to our "Annual Car, Truck, & Motorcycle Show and Bean Dinner," which is Friday evening, the 18th.  Trophies ordered; somebody needs to pay for them.  Beans & ham reliably sourced, along with cornbread.  May need more volunteer cooks, and probably servers.  Then there's the grilling.  Burgers, dogs, brats...   Man, I know we can pull this off; we've done it for years, but it is crunch time.  Who wants to help?

[Sailorsong]

Man I gotta move.... There are a few horse riding place where I live, but I think they are more for training for jumpers and the like. That activity is big here, probably due to all of the TN Walkers. On this one road I take sometimes when going to the VA there are about 10 different Horse riding places each with a dozen rings.

Dennis

[Lulu54]

horse back riding is one of those activites that is highly recommended for MS patients - it increase the core stability and helps with balance.  I think we should all pony-up!  

It is so good to hear some of you trying things that will be a challenge.

later, Lu

[lovemy6monkeys]

Oh I've always wanted to take horseback riding lessons! Enjoy Alex!

I have my follow up with my neuro on wednesday evening. I'm pretty sure we will be picking a DMD, and I'm 99% sure I'll go with copaxone.

Nothing else going on. I should be off the prednisone taper by friday. Woohoo. Maybe soon I can sleep again :-)

~Jess

[Wobbly]

that's sounds like fun, I haven't done that in many years.  Not much new this week, take care and hope everyone has a good week.

take care
wobbly

[gypcwmn]

Oops forgot to say i am going for more MRI`s to check for progression, I will keep you posted.

All the best. Linda

[gypcwmn]

I saw Neuro today he is changing me from Copaxone to Rebif. Copaxone does not like me,to many lumps and itching. I was getting lemon size lumps and they were not going away for at least 3wks.

I will be going through old posts to check out what you all have posted about Rebif.

[HVAC]

Dennis she is giving me a deal at $35 a lesson. Most places around here are $45-$50 for private or semi private $25 for a group. There is also a Therapeutic Riding Center which is sliding scale and it is not just people holding you on a horse. If you can ride you are put in a class at your level. This lady is a big time Dressage Trainer so I feel very lucky. She is also very close. Some places are an hour away.

I don't really have a lot of money since I do not qualify for any disability and art is not a recession proof business and my medical is high. But I am losing my legs  faster every day and I am not waking up and having regrets.

Alex

[Sailorsong]

Let's see I have PT Monday., Tuesday, and Thursday.

I'll also have to make a time up to the VA tomorrow as I still have not gotten my LTD form back. I had told them I needed to get the form back to the Insurance company by the 10th of this month.

I'm hoping that I'll be able to finish my Laundry Patio this week. I have gotten about 1/2 of the Paver Base down yesterday, and might have over done it a little bit as my Vertigo has returned. I still need to get the rest of the paver base down, then the leveling sand and pavers. The patio will be 8 x 8 with a hole in the center to hold my laundry pole or an umbrella when not being use for laundry. The patio gets lots of shade in the afternoon and usually has a nice breeze for me to sit out. Maybe then I won't look like a ghost all year long. :)

I had to stop taking my new water pill today as it was working too good. In just the last 3 days I have lost 13 pounds. Granted I need to loose weight, but that is too much ion a short time and it was effecting how I felt ( dizziness, light headed, rapid pulse ) and think I was getting dehydrated from them despite drinking lots of fluids. The hot weather here might have also been playing a role in this as just standing outside for a half hour and I would be soaking wet.

Also great Idea about the horse riding lessons. I miss not riding a horse and since it has been over 20 years since I rode one the lessons are a great idea. It might also give me a better idea if I could handle having a horse again.

Alex,

Did the lady say how much the lessons are? Would like to know for a reference when I look.

Dennis

[michelleric]

Thanks for bring this up Alex.  Good for you regarding riding lessons. That is wonderful!

I am not doing well today, so just trying to rest until I need to get to one of my sons baseball games tonight.

Working tomorrow, as long as my leg(s) will allow. I don't recall having this much trouble before. Probably the hardest day physically ever. I definitely overdid it this weekend, always do, and am paying for it.

Wednesday, MRI @11:00, followed by neuro appt. She will go over the MRI with me. (It was ordered at my last visit, due to declining abilities in my legs and arm, and trigeminal Neuralgia, now on the Left side. (I feel like I have ages 20 years this year.)

School is out on Wed. for the kids. So Thursday starts the beginning of summer for us. Will probably the rest of the week at the pool, weather permitting. :)

Michelle

[Ginosmommy]

I need to call for a neuro appointment, my 3 month follow up after starting my DMD.

I am in desperate need of making a pain management appointment (thanks for reminding me Alex!) Ever since having my LP done I have been having some serious issues with my back, I don't know if she hit a nerve, bone, or what but it has really been bothering me lately!

I spent 3 hours at a plant sale with my mom on Saturday, spent $60 on plants that should have cost me approx $300! Now I just have to wait until she and my hubby have some time to help me with the weeding and expanding of my gardens to accomodate them!

Almost forgot my injection on Saturday, not too bad - 1st time in 3 months, I woke up at 2 am and realized it so I was in the bathroom mixing it half asleep. Probably the reason I wasn't feeling top notch yesterday, so I took it easy for most of the day.

Hope everyone has a great restful week!  MeLissa

[Lulu54]

Have I mentioned that I have to clean for my company coming this week?  Of course I have only about 100 times so far and I actually started over the weekend.  I have a few more days, so what's the rush?

My guests arrive either Friday or Saturday, depending on how their drive goes.

I have no doctors this week - none last week either  :-)

I hope to enjoy this cool, spring/fall weather we are having - beautiful blue skies and cool temps.  Perfect!

be well,
Lulu

[addicted2harleys]

What a great idea, Alex!  I have seen about MSers riding horses, too, and have thought about this.  I had to quit riding steel horses due to my symptoms and have wondered if I could get a similar experience with the flesh kind.  Using CL is a great idea and one I may have to consider!

SB- Got my fingers, toes and eyes crossed for ya!!

I just have an eye appointment on Thursday.  Hope I get some sort of answer for my double vision in right eye.

Also hoping I get an approval this week on my referral to MS Clinic at USC.

Addi

[slightlybroken]

Wed. I'm meeting with my neuro after a 6 month wait of wanting an appointment. In short, I'm going to have a heart to heart with her about my undiagnosis status, my new symptoms I've developed, and the brush off I got from CC. I'm hoping it will all be enough to push her to diagnose me, but I'm still not sure if she is ballsy enough to do so.

I think my clinical part with my symptoms is my strongest evidence..it's those dang MRI results with the non specific lesions that stop the diagnosis in it's tracks. I need a full work up of new MRIs of the brain and spine (it's been more than a year for both), so I'm not sure if things have changed or not.

To all my forum family..Can you say a little prayer for me that day and hope she can see something?