My MSAA Community

How are You?

So often we are asked, how are you doing? How are you feeling? And we give the answer they want to hear. I'm fine, everything is good, you know the reasons. Because, as much as they care and love us they just don't quite get it.

So today, l WANT TO KNOW... How are you doing/feeling today?

Me? I'm fed up with this thing! Since Christmas, this roller coaster ride has been non-stop it seems. One day lm fine, the next lm laid out like the best of them! I WANT OFF!😁 Today so far so good, l haven't fallen back to sleep yet. I'm taking that as a good sign!

How are YOU?💕

Jes🌠

63 Replies
oldestnewest

Jesmcd2 i officially give you permission to get off the roller coaster and feel better (sure wish I had that power).

I'm going to say I feel great because it helps me believe it.

If I focus on my niggling symptoms (which fortunately are mostly niggling) I feel more defeated.

We all have our own way of coping and DENIAL works well for me 😜

9 likes
Reply

Thank you erash l would love to be off this thing! And believe me on my good days l play the Queen of Denial to the hilt!😅🌠

4 likes
Reply

Hi erash ,

Denial worked for me for years but now that I have been diagnosed, it's not that easy for me. I am still me, I just have MS. I want to be that way but it's easier said than lived right now for me. I don't feel like myself right now but I want to. I don't want MS to change me.

9 likes
Reply

But Taylorsmom we are constantly changing whether we have MS or not. It's truly self acceptance that's challenging. We/me definitely, get so stuck in how we self identify: mom, sister, daughter, athlete, wife, occupation...

When I had to stop working I struggled with self worth because for a lifetime I identified and thought my worth was based on my occupation.

I was coached to re-define my self worth. So I read about the meaning of the self worth concept and realized what I often admire in others and who I am is so much more than my occupation. It's integrity, kindness, inner strength, resilience...

Sorry to wax on here. I totally understand where you are coming from. Just sharing a lesson that really helped me when I felt like I lost me too.

10 likes
Reply

Please, wax on erash . That is something that I'm totally willing to work on, self acceptance and knowing my worth.

Thank you!

7 likes
Reply

Beautifully put advice. Had same issue when i cudnt work anymore. Took a long time to get over that. And that was before MS. that was just the economy crashing. 😉

2 likes
Reply

Jesmcd2 Good morning. I hope things even out for you soon. I too have been struggling in this new year. I only tell my husband how I am really feeling. I have this irrational need to "hide" most ms symptoms from my boys so they won't think it's that bad, in case they ever.... of course I can't hide weakness or gait issues but others I can. I also have another cold, my second this year and I just answered a recent post that I don't get colds often!

On the bright side, we had some record breaking warm days, 50 degrees in Feb! UV was up to 2! I sat out in the sun with shorts and tank top for over an hour each day, it felt so good and the air was cool so didn't increase ms symptoms. Woke up to snow this morning so back to normal. I hope you have a wonderful day.

7 likes
Reply

lois52 the weather has been crazy here also! Near record breaking highs for where l am in NY. It's no wonder everyone is getting sick. Ugh! Snow and freezing 1 day, then in the 50's the next with rain. Mother Nature is having a ball right now.

Like you, l hide things from everyone, but my guy can tell and my best friend picks up on it pretty fast. How old are your boys Lois?

I hope you feel better soon! And the weather breaks for good soon!

Jes🌠

1 like
Reply

Actually, OK right now. Normal pain but manageable.

4 likes
Reply

Morllyn It's kind of funny how we say "normal pain" . Do you find that any "new" pain is excruciating, until you can get it under control. And make it a "normal pain" like l do?

I am glad that your doing OK☺

Jes🌠

1 like
Reply

After my last attach I was left with muscle spasms/cramps that came at any time any place almost. They hurt! This was a new symptom for me. After a few months I got use to them, they still hurt but I could cope. After my visit with the MS specialist I had the Lyrica and it helps a lot.

2 likes
Reply

I was on Lyrica for a bit also Morllyn and it helped for a bit, just not enough. Most of my pain is in my lower back cause of the back surgeries. I am glad the Lyrica is working for you!

Jes🌠

1 like
Reply

Has anybody else had this dilemma? When I was really struggling I tried to convey what was going on to family members. Eventually they got it.

But now that I'm feeling better they persist in thinking that I still have the symptoms and deficits not appreciating that ms has good and bad days and they are giving me the "Oh we don't want to stress you...you shouldn't drive etc while you are here..." (I am doing quite well with city driving again tho haven't ventured out on the highway). Anyway, makes me feel incompetent and persuades me to not share my symptoms.

Anyone else with this experience?

6 likes
Reply

erash l haven't gotten that yet. I actually got the opposite from my guy, told me if l didn't start walking he was gonna leave. 😅😅 I asked if he needed help packing? 😁 So nope. But that gives me a good idea for the wipe off board. Just post good/bad and let everyone know?😅

They love you Liz 💕

🌠

1 like
Reply

Good morning Jesmcd2

I like the wipe off board idea or maybe a reversible t-shirt ?

2 likes
Reply

Love it erash 😅💕🌠

1 like
Reply

erash, I understand what you're saying. During the worst of the relapse, my family knew I probably couldn't do much. Now that things are generally better, but symptoms wax and wane, I think they are always confused when I want to do something because I can that day. They never know quite how to handle that or how to treat me. Of course, I can't figure it out either!

4 likes
Reply

My brothers and sister live in different states so they just know what I tell them. My friends/neighbors did that in the past but now they are not so bad. They are used to seeing me running around, working in my yard and they know I am doing OK, or if I am not in my yard I probably am not. Then they call to check on me.

4 likes
Reply

Those r awesome neighbors!

3 likes
Reply

Hi Jesmcd2 ,

Today I feel ok but I'm a little nervous that my symptoms have returned. I was admitted into the hospital over the weekend to begin a steroid infusion. It was going well, the feeling returned to my right hand, the electrical current that went from my head, through my arms and to my fingertips had stopped. The feeling hadn't returned to my left hand but I was feeling good about it returning since I'm still taking steroids after being discharged. Today, everything is back and I don't know why or what is next. I don't have an appointment with my neurologist until the 3rd of March. I'm trying to hold it together though.

4 likes
Reply

I'm so glad that you've focused upon remaining calm and even-keeled, Taylorsmom-- I, for one, sometimes have a tendency to overreact at minor symptom escalations or hiccups (fearing that that they portend something of more significance than they actually do).

As you keenly seem to understand, however, any such panic can become a defeating form of self-fulfilling prophecy, as our elevating anxieties bring stress, which always makes matters worse.

Hopefully, some good weather and pleasant diversions will help to keep your mind off things, until your 3/3 appointment.

I, for one, really like lois52's plan of basking in the sun, and hope to follow her lead this afternoon, Lord willing.

Best,

-- c

6 likes
Reply

Hi GasLight

I am thee queen of overreacting. That is something I am really working on and trying to get away from. I do understand, this stress that I bring on myself at times is not good. I'm trying to slow down, take each day as it comes because that's the only day that I have any control over. Once I become consistent with that, I'll be better.

This weather is definitely pleasant and helpful to my mood today. I plan on taking a walk and getting some lunch then returning to my office ready to take on the second half of this day. It's not a lot of sun lois52 but I'll definitely take what's showing!

5 likes
Reply

GasLight

Hey c. How Are You?

Reply

Finally got my permanent wheelchair, which is extremely nice and very comfortable. I'm tremendously thankful for that!!!

I'm still not fully acclimated to the new normal, but working my way there, with God's Grace. Progression appears to have stabilized just a bit.

I really hope that your juggernaut slows down, Jesmcd2

-- Christopher

2 likes
Reply

Hey GasLight congrats on your new chair! Now the question is, what are you going to name it?

Ummm c.? If you find a "new normal?" Please let me know! I find my normal changes day to day, and lm just along for the ride!😅

I AM so happy to hear that things are stabilizing for you! That's wonderful news!

Jes🌠

1 like
Reply

Was in the hospital for solumedrol and diagnosis at the beginning of Nov. I had almost the same experience you are having. Symptoms decreased, then returned when I came home with the oral steroids. I *think* that since the oral steroids are such a lower dose that the inflammation returns somewhat and so symptoms increase. I'm just now getting normal feeling back in my left hand...it's been a SLOW process. But I do improve with minor increase in symptoms from heat or exertion. My next Dr appt is Mar 14 and I'm hoping for good news. I'll be hoping for the same for you.

4 likes
Reply

Hi latellama we haven't seen you in awhile. Are you back to teaching yet? Or are they waiting for your next appointment? Sorry that it's taking so long to get rid of your symptoms. But sounds like your on the right road!

Hope your upcoming appt is a great one!!! And have you given your birthday to jimeka for the Birthday Club? Tis optional ☺

Jes🌠

1 like
Reply

I am still home, but easy able to visit work yesterday. I sure miss all those people. My next appt is in mid-March and we'll see what the Dr says. I am "graduating" from physical and occupational therapy next week and will continue ST to work on some cognitive gaps. I feel like I am doing better most days. I check in and read posts daily, but haven't taken the time to post. Sorry! I send good thoughts to each of you.

1 like
Reply

latellama Are you on medication at this moment? That makes total sense, every 4 days the dosage decreases. I hope that you hear good news as well!

1 like
Reply

I am on copaxone. It seems to be doing its job. No new symptoms and the old ones are fading. I'm still learning all the stuff. Like I'm pretty sure that my vision blur comes when I get warm. Every afternoon, when I cook or when I go outside and it's over 85 degrees. Ordering a cooling vest on Monday.

1 like
Reply

latellama My Dr. wants to start me on Tecfidera. I'm starting to notice things about myself that I'm unsure if I was ignoring it or is it new for me. When it's happened, I just sit down for a minute, try to relax.

1 like
Reply

It's like having a hard reboot of how I lived life. Currently i take notes on patterns of symptoms and share with doc. Hopefully my charting will show the improvement so I can rejoin my work community and earn some money. :)

2 likes
Reply

latellama That's a good idea, the charting.

Reply

latellama l wish you all the luck in the world with your job!🍀 Where are you getting your best from? I have one from Polar, they are nice to have. I love that neck wraps tho! I can't live without them!

Where are you again, where it's 85° ?

Jes🌠

ps. ~Helpful Hint~ If put an @ in front of the person who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

Reply

Jesmcd2I live in hot, humid Houston, TX. Usually "winter" lasts longer than 2 days, but not this year. We're headed for a scorcher! Where are you?

I am getting a phase change vest from first line. Because of the intense humidity, any kind of evaporative cooling just feels icky. And ice doesnt last very long. Since it has a 30 day trial period, I'll try it out for the month and see how it works.

Have a great day! I'm hoping I didn't over do it today....seems like when I feel better, I reach my limit too fast.

Reply

Hi latellama let me know how that vest works for you, l would be interested to know. It looks and works alot different than alot of them do.

I live in southern NY, summer's here are very humid here also. My AC became my best friend last yr.😅 And l didn't go anywhere without my neckwrap! I think that was my 1saving grace! That and going outside early mornings.☺

Jes🌠

Reply

Taylorsmom Gotta love the Solumedrol and taper afterwards. Was this your 1st treatment? And lm sure your mom told you about the side affects? No one told me, until afterwards. It wasn't pretty😅😅

You have alot on your plate right now, and lm so sorry. I do know that stressing yourself out is definitely not good for you! So please try not to! (I know easier said than done).

I honestly feel that MS is just another chapter in life. It doesn't change WHO you are! It CAN NOT change your self worth ! A far as accepting your DX? It will be 2yrs next month and the thought makes me start to have an anxiety attack. But no matter what.... Bottom line is, l have MS, and it's not going anywhere. So you just kinda go with it. What else do you do?

Hang in there, we are all here for you!

Jes🌠

ps. We have a birthday club, so please share your birthday with jimeka if you would like☺

2 likes
Reply

Jesmcd2 Yes, this was my first treatment. Unfortunately, my mom didn't talk about her MS. For years she was in remission and I don't know if she was taking any medicine. She was all about vitamins instead. Only after coming out of remission did she begin taking prescribed medicines.

1 like
Reply

jimeka My birthday is May26th!

1 like
Reply

Thank you 😊

1 like
Reply

Hard to say I feel okay today because I'm afraid if I do later I won't feel as good. Has happened before, but I pretend it won't. Hee hee?

I like to do as much as I can around the house. I'm so used to hurting in my legs, knees, hands, neck, etc that I don't tell my mother and father. They tend to baby me if I do (yeah, in my mid 50's and they baby me), and my dad won't ask for help when he falls and my mom doesn't like to ask me to help her help him.

Okay, I'm another Queen of Denial too Jesmcd2. MS won't get me down (at least not today) the sun is shining and it's warmer than usual so I'm just going to enjoy the day while I can.

Jennie62

4 likes
Reply

jennie62 l can understand completely were your coming from. I can wake up feeling great, then an hr later, lm out for the count. Then l know it's going to be a bad day. Ugh. So on good days l try to do as much as I can!.

Arnt you loving this messed up weather? 😅😁 Hopefully it will stay at least semi nice for next month. I will be up in your neck of the woods.😁

I think parents are all like that. I know my girls are adults but they will always be my Angel Monsters 💕

Have a great day today!

Jes🌠

2 likes
Reply

Smiling cuz I know what YOU mean when you call them Angel Monsters. Have one of those myself. My son-in-law has his moments, (usually when my daughter has been an Angel Monster) , but I can't wait until my granddaughter goes into her terrible 2s...what am I saying, she's wonderful, she belongs to someone else! LOL!

1 like
Reply

LOL jennie62 2 yr olds are a piece of cake, compared to 3yr olds. Now they scare me.😵😅😅

1 like
Reply

Jesmcd2, how are you?

One of the things I find frustrating is that my symptoms wax and wane, change, or that new things appear and disappear. I never know how the next few minutes will go, let alone the whole day. I'm sure this is bewildering to my family who can never count on things staying the same. On one day I'm able to seem my old self with fewer visible problems, and the next day, I can't do nearly so much. I kept putting away the cane, only to need it again. I'm sure nearly everyone here can relate. Life is surely an adventure now!

3 likes
Reply

greaterexp always the Roller coaster ride. And l do that with my cane also. Or l just say screw it, and fumble along.😁 When l use my cane to much it hurts my back. So l can't win for losing.

I'm sure we ALL can relate, and l love erash 's idea about the tee-shirt saying good or bad days! 😅

Hang in there!!

Jes🌠

1 like
Reply

Jesmcd2 If your back hurts when you use your cane it may mean it is not the right height for you. That is what came to mind when I saw your post.

3 likes
Reply

Morllyn you could be very right about that? Wonder if it's to low? Or high? Ugh will have to check that out. Thank you!!!!? I didn't even think of that!😅

Jes🌠

2 likes
Reply

So far so good today. I took a Nuvigil before getting up cuz its gonna be a long day. Going to the dentist which means an hour and a half drive just to get there. My man and i both have appts so i am getting a cleaning while he gets crowns put on. Then after another hour and a half drive home we gotta take his truck in to the mechanic

Fun times

3 likes
Reply

How did everything go for you at the dentist and the mechanic yesterday Midgey_Midge06 ? Days like that are always so long. I didn't realize that the Nuvigil worked on an as needed med. I take Modafnil, and take it 2xs a day. It took almost 2 wks to kick in.l love it!!😅😅

1 like
Reply

It was such a long day. We left the house at 8am and didnt get home until after 5pm. Which is less than a workday, i know, but for me it was so exhausting. Luckily i got to sleep in today.

I only take nuvigil if i absolutly have too. I am so sensitive to it. If i dont take it before 8am it keeps me up all night. Somehow MS has given me the wonderful (NOT) gift of insomnia. Fatigue plus insomnia = Stephen King level insanity 😜😜.

Gotta laugh tho ..... best way to cope 😂😂😂

2 likes
Reply

It is nice when you can sleep in! I did today also☺ l think it was mostly the rain, and knowing that by tonight our week of wonderful weather will be over😥😢

Umm. Now you have me worried Midgey_Midge06 , Stephen King insanity is really really scary!!!!! 😵😵😅😅 But ya gotta love his books!

And if you can't laugh at yourself, no one will laugh with you😅. I laugh at myself all the time ugh😅

Jes🌠

1 like
Reply

Jesmcd2 I found a passage in an old Eric Hoffer book that was written about social change, but his thoughts about drastic change as we experience in MS spoke to me and may resonate with others as well: "We can never be really prepared for that which is wholly new. We have to adjust ourselves, and every radical adjustment is a crisis in self-esteem. We undergo a test; we have to prove ourselves. It needs inordinate self-confidence to face drastic change without inner trembling." This space is one where we adjust ourselves, and gather our confidence to face our drastic changes.

3 likes
Reply

goatgal l love that quote! It is so very true, in my book anyway. As MS is a drastic change to ones self. And without self-confidence, we would probably be run over by our Drs and or caregivers. Not that they mean to. I think they think we lose our mind with MS. 😅😅

Having MS, takes awhile lot of self-confidence! To survive! Thank you for sharing that! ☺💕

Jes🌠

2 likes
Reply

Totally awesome quote

1 like
Reply

Hi goatgal, please consider posting this quote so that everyone will have the opportunity of reading it, it really hits home. Thank you for sharing, blessings Jimeka

1 like
Reply

I've had trigeminal pain for a week now. I have an appointment next Friday with the neuro. It's not horrible. But, Ugh. I feel like just when I get caught up and use to my symptoms I need to live with, something else hits. I just got use to living with the last symptoms ?!? I'm just complaining. Trigeminal neuralgia scares me.

2 likes
Reply

cheshcat ~hugs~ l can't imagine what you're going through. I know would be scared also. I'm glad your seeing your Neuro on Friday tho! Hopefully he will be able to do something for you! And complaining/venting, it's all good!☺

I do know that others here have Trigeminal Neuralgia. They might be able to help give you piece of mind ☺ erash ? Ugh l can't remember who else, l have MS remember? 😅😅😅

Jes🌠

3 likes
Reply

Thank you Jes <3 :)

I'm assuming the new neuro will take pitty on me! His nurse called me late yesterday afternoon to tell me the doctor said to go to the after hours clinic if I need too before next Friday.

I'm hoping once I get some more concrete answers I'll feel better about things. The not knowing and only taking band aide medications is hard (I use to take zero almost my entire life, now I look like a walking pharmacy). I need a plan lol!

Honestly, without this board, I might not even have my new neurologist and might still be just suffering in silence and being ignored by neuro #1. This board has been amazingly helpful to me. No matter the outcome, the best thing I did was join this board!

1 like
Reply

I'm SO glad that your new Neuro is being active in your case! It makes a HUGH difference!☺ Is Fri your 1st appt? Have you had MRIs yet? My memory is shot today😅

Please please PLEASE don't wait to go to the clinic!! Especially since you don't have a DX yet. As it could be anything.😞 Please be careful!☺

Thank you for the compliments ☺ And we are so glad your here, no matter the DX.☺ This forum is pretty special 💕

And ummm cheshcat ? MS + Plan = 😄😅😆 now that's funny! Sorry couldn't resist. I truly hope they can tell you something very very soon!

Jes🌠

ps. Did you get your new Neuro through MSAA?

2 likes
Reply

Haha on ms+plan! Whatever it is, I don't like the change-ability of it!!! I just get use to one set of issues and then something new, not a fan!!!

My first neuro thought I was too old for MS (I'll be 45 next month, so I was 44). He did a MRI last March, which was clear. I realize now, I think it was in the wrong machine and I think he was looking for a tumor, so maybe the wrong pictures. It seems like it still should have showed MS if I have it but I don't really know. I plan to ask the new neuro about that. I'd like the correct MRI machine and all the MRI's done. I looked and there is a new MRI machine in town but it's not with their clinic, so I'm not totally sure which one he will let me use.

My doctor referred me to their groups neurologist group, I switched myself after realizing, from this board, that I needed a different doctor. So this is his partner, same clinic. I want to go to the MS clinic 2 hours away for testing but someone needs to refer me and my primary didn't want to go around my new neurologist. Unless I get worse, I'll wait for him and then if no dice, I'm just going to have to suck it up and use ER. Which was the very last thing I wanted to do. But I just refuse to get worse before they test more. It's my life and body I have to live with the rest of my life. My new neurologist is very young, which I like.

Another week and I will see his plan, then take matters into my own hands ;)

Reply

cheshcat hahaha on being to old for MS. Statistics show that it's mostly found in ages 15-50 (according to MSAA) but being on here l have since learned, you are never to old.

I really hope you don't have it! And hope you get some answers soon! Hopefully this Neuro knows his stuff! Good luck!

Oh and btw? I think we all become a bit of control freaks once we are dxed! Only because we can't control MS. So we control everything else😅😄🌠

1 like
Reply

Thanks Jes :)

Reply

You may also like...