Checking in...
 

Hello,
It has been so long since I updated here & I apologize.

The children are off to elementary school now and we are getting into a routine. As much of a routine as you can get when Mommy has MG, right?

My neuro had written a letter to dh's insurance company (whom I despise) to see if they would cover IVIG on an every 3 week basis for at least a year. They agreed after MUCH deliberation. :rolleyes:

I have never had so many plasmapheresis treatments as I have in the past year or so. I always did better with the IVIG immediately following the plasmapheresis treatments.

I will be able to get the treatments at home through our local home health agency, who is willing to work around school hours. I should be all finished for the day by the time the school bus pulls into our neighborhood!

I have networked with the teachers and a few of the other moms and am starting to develop an emergency backup system in case I am not well, dh is unreachable & my mother is out of town and I end up with a sick child that needs to come home. I make no secret of my MG and am not afraid to ask for help, should I need it.

Hopefully, the IVIG on regular basis will be just what I need to get back to where I need to be after 2 years.

We'd like to start remodeling now that the children are in school & make our home more accessible. If I am feeling better, I can have more input!


Happy Autumn,
Jenna

Jenna,
Hope the IVIG treatments work well for you. Keep us posted on your progress!
Simon

Jenna,

I am glad you gave us an update and even happier that you were approved for the IVIG. Having had MG when my boys were little {newborn and 8yrs} I know how hard it can be so I really hope the IVIG works or better yet that you are blessed with remission like I was.

I am glad you have backup help and that the teachers understand. Please keep us posted and enjoy the fall weather!

Hi Jenna
 

I hope you start to feel better soon.

That's a really good idea with your back up plan. Im glad that the people around you are willing to help.

Keep us updated with your progress.

Love
Rach

Hi Jenna,
 

Sounds like you have been dealing with this for a while now. How do you do it!!! I was just diagnosed in July. I have three little boys, 2.5 months, 5 and 3.5. And since I got sick, I can hardly do anything with my kids besides sit on the couch and talk to them. I do take care of the baby during the day, but I have had to call help over several times due to my arms going out and not being able to pick him up. How do you run your days? And how involved with the normal say at home mom stuff are you able to be?

Thanks,

Jessica

Jenna, I'm glad things are going well. I hope you continue to do well, even with all those kid germs around! ;)

Annie

I have LOTS and LOTS of help! The past two years have been hard, because I was very functional until then.

I found a young, single mom who has a child the same age as my two. I paid her a small amount (and access to my washer/dryer) and she came almost everyday for a few hours to take my children outside to play and to run! That stopped once all the children started school.

My husband has been a supportive and tidy :winky: partner. If he got overwhelmed, he tried not to show it too much. lol

Almost all my family pitched in, especially my mom and my teenaged niece. Give a teenager a legitimate reason to drive and use your gas ...they will always take it! I will never be without groceries as long as she's in high school. :D


My first bit of advice, especially with a baby, make sure you ask for help!Especially if you feel unsafe holding your baby. People with your church (if you have one), especially seniors, often volunteer their time. If someone lives close to you, maybe you could call them just when you feel you need the extra set of arms??

For more than 2 years, my priority was my children & to heck with the housework. My husband and my mom (thank God for my mother and her daily visits!) did all the housework. My niece did 80% of the shopping.

Are your older two in preschool/school yet??

Jenna

Yes thank goodness, my older son is in Kinder and and both are in Pre-school full time. It's been really hard asking for help from anyone but my Hubby. I'm used to seeing what needs to be done and "talking care of it" no matter what. So when I get weak, and I know I am almost due to take my meds, I try to deal...but the problem is, on those days I seem to do ok on my meds (to other eyes) but when it wears off, I need help again. So I feel like I'm crying wolf during my in-between times. How bad do you let it get before you ask for help? My symptoms are so wide ranging, and with my Mestinon, I seem ok while I'M on the couch. But since I got sick, I haven't had even one day, that I was above 50% of my before MG self.

Jess

I'm asthmatic, so I thought my asthma was just uncontrolled. So I'd refill my steroids and start to feel better. I was actually diagnosed during a trip in for an "asthma attack". Smart doc!

I was lucky that after my diagnosis was confirmed, I got Mestinon, Prednisone, Imuran, plasmapheresis and a thymectomy right away. I took a leave of absence from work for my thymectomy.

Things went well after that, I passed for "normal" for years. I didn't tell a lot of people about the MG, no reason to. I had cut down on work schedule for health reasons in the beginning & never resumed the 60 hours a week I had done prior.

When things started going badly again about 2 years ago, it was really hard for me to ask for help. Now that I had children, it was no longer about my pride, it was about their safety. I could not imagine coping with newly diagnosed MG and having an infant.

Fortunately, my mother is a take charge kind of gal. She is one of those moms who was involved with church and school and she taught me the power of networking. Some people will never understand how MG works, but right now you have a new baby & are not well. I would hope people could relate to that.

Jess, have you had a thymectomy yet? Are you on immunosuppressants or just Mestinon? Are you receptive to try some of the really strong immunosuppressants right off the bat?

Right now is the time you need the help the most, you have a new infant. The immunosuppressants should kick in in a year, if you are on them.

Is your family nearby? Most importantly, are they supportive and willing to learn about your MG?


Jenna

I did have my Thymectomy a little over a month ago. And I am on Mestinon (120 x 4 ) , and just started Pred. currently on 10 mg, and I plan to test 15 mg for a couple weeks before upping again. I would really rather not try the more aggressive immunosuppressants...since my Myasthenia seems to be so bad, I worry about my boys getting me sick. I don't have much family around, but the family I do have is pretty supportive.

Jess