My MSAA Community
3,153 members5,527 posts

Better things to come

Better things to come

I have had a very trying week. Firstly my internet, zilch and very temperamental. Secondly my husband decided to treat me to a surprise lunch, travelled 45 minutes, closed for renovations, thirdly, had my groceries delivered, they forgot all the milk and fresh stuff, plus the chocolate brownie trifle. Need I go on, but I keep being told, these are testing times, smile. Little do they know I have a secret stash of chocolate, have a good weekend everyone, blessings Jimeka 🦋 🌈 🍫

28 Replies
oldestnewest

Thank goodness you had that stash of chocolate jimeka 😊 Hope things get rosier for you 🌹

5 likes
Reply

Yes, every girl needs a secret stash of chocolate! That's the most important thing and they forgot the chocolate trifle.. no tip for them!

4 likes
Reply

Yeah! I'm not the only one with a secret stash of dark chocolates! You are so inspiring Jimena. Thank you!

4 likes
Reply

I thought all women did that

2 likes
Reply

I had a trying week as well. Here's to a bettter weekend!

5 likes
Reply

Sorry u r not doing better after the steroids Iona60 🙁

2 likes
Reply

Iona60 I am sorry the solumedrol infusions didn't do the trick. Have you asked your neuro about H.P.Acthar Get? It is a 5 day course of injectable gel that you have to keep in the refrigerator, take out before the injection and let it turn liquid again so you can draw and inject it. But watch out---the price tag is $40k per 5-day course of treatment. Your insurance may or may mot cover it, but if you are on commercial insurance which refuses to cover it you can get financial help from Mallinkrodt Pharmaceuticals which makes it. It's called the ASAP program. If you're on Medicare Part D, forget it. No help allowed from manufacturer and I ended up with a co=insurance of almost $8k (yes I said $8,000) last year, and I always keep a vial around just in case. Not an easy drug to take, injections are a pain, some side effects usually the same as steroids. But it's worked for me every time and the 3-day solumedrol injections don't work for me at all. And as you know, once the relapse stops, it's PT and exercise and hard hard work just to get back to where you were. I wish you the best of luck, Iona60.

2 likes
Reply

Thank you Sukie427 for your info on Athcar. I haven't asked about it. The solumedrol has worked, but for 2 to 3 days after I stopped it, I felt horrible. I'm doing much better now and will research and ask about Athcar in the future. Injectibles don't scare me as I was on Copaxone for 10 years. erash Can you give us a little summary about Athcar? Is it a steroid?

1 like
Reply

Hi, Iona60. Sorry to be so late with this, but I had a relapse, my husband had a knee replacement, and then we went on vacation, so I was behind about 2500 emails. Acthar itself is not a steroid, but as I understand it, it stimulates your adrenal gland to make its own steroids and even after the 5 days are up it keeps on working for a couple of months. Also as I understand it, the 3-day solumedrol infusions and Acthar are the only 2 FDA-approved treatments for MS relapse.

1 like
Reply

Sukie427 I'll have to ask about it at my neuro visit this week.

1 like
Reply

It seems that rough week has been going around, jimeka. As usual, you've maintained a positive attitude and have been encouraging others despite your own disappointments. Thank you! Praying the coming days are filled with extra chocolate and only good things. 💕

4 likes
Reply

Sorry your week has been trying jimeka! Hope things get better soon. I keep a stash of chocolate for emergencies too. LOL!

5 likes
Reply

You have to be prepared for any emergency, no matter how small! 🍫 🦋 🌈

3 likes
Reply

My week was Good one doctors appointment eye doctor and I like it when you go and they say nothing has changed I'll you next year. I had a hiding place for chocolate but everyone knows where I keep my stuff. Since my son and wife with my granddaughter has moved in over a year ago nothing is private anymore. I do love son, wife and my granddaughter she is nine months old and she loves her Grammy. My younger son just got his private pilot licenses on Wednesday We are very proud of him. Sorry about that weren't we talking about chocolate. Lynd chocolates are the best.

5 likes
Reply

Congratulations to your son, it takes a lot of dedication to get your pilots listens. I have my daughter, husband and two grandsons living with us, 10 months now, they are having their bungalow transformed into a house. The grandsons 8 and 3 are like chalk and cheese, I will miss them when they move out. Getting back to chocolate, I am a Cadburys girl, blessings Jimeka 🦋 🌈 🍫 🍫 🍫 Etc

5 likes
Reply

3 cheers for chocolate stashes, but I should keep only one. Sometimes I find them much later when the chocolate has turned to white chalk. Oh, my brain.

5 likes
Reply

I can't stash chocolate because I would steal it and it wouldn't be there for my crises...maybe I need an eternal supply 😝🌈

4 likes
Reply

I have a chocolate stash also!😅😅 Then of course there is chocolate pudding, for emergencies!!

J🌠

3 likes
Reply

The missing chocolate would have been the worst for me!! Good pls Ming jimeka

1 like
Reply

I made the mistake of baking brownies yesterday afternoon thinking I would have some "chocolate relief." However, the wafting smell of them lingering throughout the house gave them away as soon as my BF opened the door when he came home from work and brought his two famished teenagers with him along with a couple of their friends. After all the chaos settled I scurried into the kitchen to try and salvage some but they were gone. :-( Grrrr!

3 likes
Reply

Bake with the windows open if possible, you should always hide some for yourself before anyone notices! Lol 😂

3 likes
Reply

LOL will do that next time for sure!

3 likes
Reply

Hey Bamfan1442 --time to get in the car and make a bakery run

4 likes
Reply

Have to bake early and squirrel some away for you.

2 likes
Reply

Wow, jimeka I hope that your trifle came--that should make everything OK! Boy, would I like to have my groceries delivered! Then I could become a complete couch potato!

3 likes
Reply

I wouldn't mind but I waited for my groceries to be re delivered as arranged between 8 and 12 am and no show. So I rang and they had forgot, so then I had to wait until after3 pm for them to deliver again. They gave me £10 off my next delivery for the inconvenience. My husbands response was 'oh let's just do our own shop' easier said than done ? Blessings Jimeka 🌈 🦋 🍫

2 likes
Reply

Oh, wow, I'm sorry jimeka. They should have brought you and extra trifle too. 🍫

2 likes
Reply

I would have had to share it then. Harry and Charlie slept at their grandmas tonight so I had lots. Their loss! Lol 😂

2 likes
Reply