OT June Chit Chat

[Pegakafarmgirl]

Hello out there,,how's it going..

Been dealing with floods, in Iowa as you all probally heard,, we need drying time,,so far we re doing okay,,,we are much better off then southern Iowa,,

We shoed horses last night,,put PF Flyers on them,,lol, our family reunion is the 15th of June,,our son is putting this on, down at the farm,, we are helping with this, since he is alone {divorce},,

Garden is just okay,,jury is still out,, since we had all that rain, to see what damage {plants drowning} is done,,

I am doing okay,it is in the dormant stage right now,,not good not to bad,,,{ you understand,,right ?}..

better go, I see a rhubarb pie is calling me to make,,probally something to do with rhubarb in my sink, hey that's a country song,,"rhubarb in my sink"..hahahaha !

[SalpalSally]

Rhubarb and June. What memories that brings back.
How about, 5 yrs old, in Grandma's garden, munching
on raw rhubarb...almost as bad as sucking on a lemon.

MS is on hold, but doesn't like the summer heat and is
finding little cruel ways to tell me that. Grrrrrrrrrrrrrrr

Hope you all are well and in some way, happy. (((Hugs)))

[nuthatch]

Hot here in California, supposed to hit 101 again today, then cool down to the 80s tomorrow.

MS is not bothering me half as much as the infection in my foot and severe allergic reaction to ??? which has caused me to break out in severe itching, oozing sores all over my body, even my ears and scalp! I've had it for more than a month now, and have been given the runaround by doctors for weeks. Finally starting to take this seriously! I'm on my second short course of prednisone for the itch and second round of antibiotics (the first I couldn't keep down!). Biopsy and culture results pending, but I'm just plain scared at this point. This sucks!
Interesting how much less spastic I am while on prednisone. Forgot what it feels like.

Sorry for the whine.

[agate]

Joan/nuthatch, that sounds truly miserable! I'm glad your doctors have started taking this seriously--it's about time.

I hope they'll come up with some good answers soon.

[Jeanie Z]

:) Hi everyone. Joan I hope your doctor finds a fix for your rash, it sounds bad. Gary did you misplace your camera? I hope you are fully settled into the new house.

The cough I've had for about 9 months is better. The ENT sent me 2 RX's and my cough is almost gone. A 6 day steroid taper of Methylprednisolone 4 mg and Amox-Clav 875 mg twice a day for 21 days. I have 10 days of that to go.

I did tell David's sister that I could NOT afford to give the RV away as I need the money. She said she was not interested in paying for it. David's other sister said that Frani really wanted her son to have it so he could fix it up and sell it. Frani applied for the VA death benefit and had me send her a death certificate to do it. I paid for the whole funeral on my Visa and they have not offered any money to me.

Bill (83) the friend who took care of Mother has been in the hospital and in rehab for almost a week. I wish I was up there to see him. Please say a prayer for him. (And for me.)

I am sleeping in almost everyday and many days not getting out of my pajamas. I gave one neighbor David's huge motor lift, his huge 220 air compressor with 100 ft of pressurized hose, two car ramps, about 6 jack stands and two rolling jacks. My sons have not sorted the tools in the utility building and it is full. I do not want to have a yard sale as I do not want the gangs to find out I am here alone.

I keep my house at 74 and at times that feels cold to me. I sleep with two blankets on the bed.

I figured out a way to mop the floors in my scooter, so my son does not have to do that every week. I still need help changing the bed linens and mowing the yard. He is also running the
RV around the block to keep it all working until we find a buyer.

((((Sally)))) and (((( everyone else)))). You are all in my prayers. Jeanie :)

[Frog42]

Jeanie, that is so sad that David's sisters wanted you to just hand over anything they wanted. I don't think that's what David would have expected. They could at least have offered to help in some way. They sound very selfish.

I hope things start looking up for you soon.

[Gabriella7]

Still Not All Here

I've been trying to recover from the set back on Mother's Day. I still don't know why I collapsed unless it was from the infection. I'm resting a lot but it doesn't seem to be restoring me in any way. I still break down and weep whenever I have to tell someone who doesn't know that Joe has passed away. I wrote a lot of notes to let old friends and relatives who are in other states know. He had a lot of friends from over the years since he was a football coach and teacher as well as an administrator and some I haven't written or called yet.

I quess the fact that I have MS or MG is causing me to be more emotional. That's another thing I have to get an answer for. Every time I have to give my history to a doctor they reply "You're the first patient I've had with both MS and MG". I have made an appointment with a doctor(neuro) here in town who claims to be interested in MG. I hope so as it is difficult to find one who is, as it is a rare disease, so no specialist here in the south. I would have to travel to Mayo Clinic in MN to find a specialist.

My prayers go out to everyone else who are going thru so much at this time. I have received many cards. I am still working on the arrangements for the memorial service which will be in July at our church. One granddaughter will sing, another grandson will play Joe's acoustic guitar which I have given to him and either our oldest son or his son will have a remembrance reading to honor Joe's memory. It will take me a long time to take care of all the legal paperwork which has to be finalized.

Just taking one day at a time....

Blessings,
Gabriella

[Jeanie Z]

:) Hi everyone. Gabriella I understand about letting people know about your husband's death. I put off using the phone. I have so many mixed feelings right now. I am sad, lonely, scared, worried and not very functional. I am just doing things I have to do. I have no idea who all I have talked to and who I haven't.

I finally got the check that closed my Mother's last account. However I'm not sure what Merrill Lynch did but it is about 700 less that I had expected. Each of us will get $1265.00. It only took about twenty-five phone calls, several letters with copies of the will, etc to the circuit court. They sent me a letter signed by a judge that ML could issue me a check. But no ML has had the letter for 6 weeks in their legal department. All the paperwork, calls, etc. are time consuming, cost money and are annoying.

I am going to call this week and make an appointment with the lawyer to redo my will so it will be as simple for my sons as I can make it. I have already put their names on all my bank accounts and my safety deposit box and shown them where to find the key. I am an organ and eye donor but I will have a new living will made too.

We went from a drought to now being flooded. Many farmers horses and cows are standing in water. One of the back gutters has been pouring water down by the septic tank and I might have to have my son pile up dirt or dig a trench to keep it away from that. The almost constant drizzle is depressing. I am ready to see the sun shine. Please keep me in your prayers and you are all in mine. Jeanie :)

[renee]

Jeanie- Did ML include a breakdown of fees, if any, they might have added to disperse your mom's account?
It can be as bad as charging for kleenex in a hospital.
Take care.

[Cherie]

I'm back from the Consortium of MS Centers annual meeting in Orlando. LOTS of information on new stuff coming down the pike and reassessment of old therapies. They are now saying that newly diagnosed folks should probably start on Tysabri or Tecfidera and when stable for 3-5 years "graduate" to one of the injectables. There are new clinical trials gearing up for SPMS using our own blood cells to create a special infusion that will reboot our immune systems. There are 23 trial sites recruiting in the US for that . Message me if you want information.

I seem to have pretty much fully recovered from the relapse I had in early March. Really took me off guard as I was still in the honeymoon phase of no new symptoms and more energy since the 25 months of high dose Cytoxan therapy. I may need to seriously consider going back on a DMT to forestall any more relapses in the future. HOWEVER...I am now able to walk a mile or more a day for the first time in years!

Still catching up with work at David's office since getting back on Tuesday afternoon from FL. Considering taking a nursing job that has been offered to me. Will talk to HR about that this week sometime. I think it is a given that I no longer need the gift of SSDI and can come off it in the very near future.

We celebrated our 38th wedding anniversary at Epcot last Saturday, did Hollywood studios and Animal Kingdom Sunday and Typhoon Lagoon Monday before flying home Tuesday.

For those that missed it...we lost Mo-Kitty (16) 4 days before going on vacation. Hard death here at home because the vet could not see her till late the next day. She had been going down hill for over a year and the last 10 days of her life were filled with diarrhea (bloody) and no eating and loss of most of her body weight and the last day, seizures and we are heart broken. It is so hard for me now to fix a meal without an animal standing guard. We have not been without a furry family member for more than 20 years so things are lonely but I think we need to do this, grieve and get through it because , at this stage of our lives, a pet is not in the picture as far as our lifestyle changes are concerned.

Blessings to Gabriella and Jeanie as you learn to live without your loved ones.

[stillstANNding]

Hello BT'ers.

I haven't been writing because there was nothing to tell.:) Last night, tho', I went out to meet Pizza Guy and a friend to hear some jazz at Berklee- Italian jazz trumpeter Enrico Rava and his group. Wow.

It was slightly involved to get there: walk to a bus to Symphony Hall (not the destination- just how far the bus went). A fall face first to the pavement as I rounded the corner to Mass Ave. Fall was broken by my left palm and left knee. A passing gentleman helped me up.:) Then a long walk to the Thai restaurant near the performance center. Pouring rain after dinner and 4 lanes of traffic to cross. We made it but were very wet-especially PG who had no jacket or umbrella.

Everything was great except- performance had multiple introductions and students and faculty playing before Rava. It was probably after 9PM before Rava's group got started- well worth the wait.:)

Gabrielle I hope you are starting to heal- I think about you and Jeanie often. Cherie, good to hear you may be able to come off of SS. Agate, I hope you and Phoebe are comfortable.

Hello to all of you- I seem to always forget Virginia or Vicky or Lorraine. Someone. So, just a general "Hello and what is happening where you are?"
ANN

[agate]

stillstANNding, too bad about your fall--the kind that's called a face-plant, I think? Those can be pretty bad. Glad you made it to the event anyway and are still in one piece--or is there part of this story you're not telling?

Cherie, congratulations on the 38th anniversary!

Best wishes to everyone. I've been busy lately what with one thing and another--fire alarm testing in the building today, and they're tearing up the yard my apartment looks out on.

I didn't make it to the first class for the study I'm in but hope to do better next week. The people running the study were very nice when I told them I had to skip the first class. They're sending me the homework.

It's a study of MS fatigue and involves about 200 participants enrolled at 4 different sites across the US.

Sorry I can't reply to everybody individually but you're all in my thoughts.

[Jeanie Z]

:) Hi everyone. Ann I'm sorry you fell. Congratulations Cherie and David. Gabrielle I hope you are feeling better, it is hard to stay positive when you are alone. Gary I think you don't want us to see your house.

The check I got from Merrill Lynch was only for the GE stock. They sent another check for the cash in the account. So they did not short us. I do not know if the high school will buy the house or not. If not we will have to hire someone to do the yard and list it for sale. Bill (83) was in the hospital last week and is now in rehab in Jacksonville. He may have had a small stroke as he is more forgetful.

I am sleepibng late and getting nothing done when I get up. I am very tired or maybe I'm depressed. I watch TV. do crosswords and read David's journals. I have not made myself go into his computer room and start sorting things. Also I have not made anappointment to make a new will.

I lost the first post I typed so I hop[e this one works. ((((Hugs)))) to all of you. Please keep me in your prayers, you are all in my prayers. Jeanie :)

[renee]

Thank the big Kahuna for summer.
Only in the last 10 days or so have I been able
to shake off the shadow of winter melancholy.
It was too long and too dark.

I have a wheel-cha accessible raised garden bed among several dozen.
The gardeners and the visitors, strangers who wander
through after dinner time, are great company. I love handing out vegetables
like it's halloween. I want to take one of these blissed-out elderly master gardeners
home with me- they are sooooo cute.
All we are missing is a beekeeper across the field.

Lots of free and eclectic outdoor concerts in the next 3 months.
Lining up dates for evening concerts and picking up work time as a sub
for people playing hooky.
After my nasty departure from five afternoons a week plus in early 2012
I'm getting as much work as I want and need. No burned bridges served me well.
Paris, I hear you calling.

Ann, I never did a face first fall.
I walked into a street sign in San Juan, got po'd then fell into gutter twenty feet later.
Black eye. It was hilarious.
Companion was worried he'd be suspected of domestic violence. (NOT the case)
No makeup, I kept the eye purple.
A black eye means power.

Neuro next week.
We'll talk about the Copaxone rumor of 7x week down to 3x.
That would be sweet.
Seronos free dinner budget has run out so the other pharmas better
come through.
I'm not getting up in the morning for coffee, bagels and a Power Point presentation on MS.

No way. Never.

[agate]

I've had a few face-forward falls, and the worst one by far was one where I knocked out several teeth (4 or 6, depending on how you look at it--4 were destroyed but two more had to be filed down to almost nothing to support a bridge). That set me up for a lifetime of bridgework but luckily I had a very good dentist. The first bridge lasted 14 years, and the second has lasted 38 years and is still OK.

It ought to be sturdy. It felt as if someone was going at my jaw with a sledgehammer when it was put in place.

That fall was before anyone suspected MS for me but the vertigo that caused it may have been the onset of MS. I was 20.

renee, you sound as if you stay very busy. Going to concerts and doing gardening--enjoy! I sometimes went to park events since there was a park right across the street from me but found I preferred avoiding crowds. I'm getting more and more anti-social as time goes by.