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Old 05-10-2017, 12:12 PM   #31
tkrik
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Erin - So sorry to hear about the loss of your dad. I know how much you loved him and how good he was to you. I will keep you in my prayers.

Lots of changes going on with me and I am not at my computer as often as I used to be and use my phone a lot for the internet. It's hard for me to type on my phone and I hate doing so.

Anyhow, I moved in with DD25 and my grandson. It's a temporary thing. I had to move as for whatever reason the violence in the neighborhood I was living increased dramatically. There was a shooting right outside my apartment. That was the 3rd shooting in a month and was the final straw. Since I didn't have much left on my lease, I moved in with DD25 and continued paying on my lease until it was up (April).

It's just crazy living with a 2-year old. OMGoodness! I am amused by the his ridiculous fits, unless they happen in the morning as they're getting ready to leave and I'm still in bed. Those are not amusing. He's now going through the demanding phase and trying to control everything and everyone. He is learning that that doesn't fly with this grandma. The new nighttime ritual is everyone lays in my bed and we read books. He loves this and if it doesn't happen, he is upset. I have been enjoying being around him and DD25. It's been an adjustment as I am used to my quiet ways, which took me a bit to get used to being alone.

I started a new medicine that seems to be working on both the connective tissue disease and the MS. It's been a challenge to get everything figured out and we're still working on it. I still haven't been diagnosed with anything other than some sort of connective tissue disease and MS; although, the neurologist is still unsure about the MS despite having the lesions and symptoms. I love my neurologist and my rheumatologist and they play well together, which is so important to me.

That's my quick rundown. I will try to get better at posting now that things are settling down some for me. I do miss coming on here daily and the fun we all had.
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Old 05-10-2017, 03:56 PM   #32
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Erin, I'm so sorry about your Dad.

Life has been busy here.

My kids are almost teenagers now! My daughter is a Mathlete at school and just went to the Oregon Writing Festival last weekend. She wants to go through all the schooling to work for NASA. One of her teachers just recommended that she go to space camp in the summer. Unfortunately the scholarship applications for this year are already closed, and we can't afford $999 plus travel. But we will most definitely be applying in October for the following summer! I have to say though, I have mixed feelings about sending her. It's an amazing opportunity, but it will be the farthest away from us she has ever been. Now I know a little of how my Mom felt sending me to South Korea when I was in eighth grade.

My son is excited to almost be done with grade school. I'm sad that after next year my baby will be in middle school! He's growing so fast and changes his mind regularly about what he wants to be when he grows up, understandable in the fourth grade. At one time recently he wanted to become a doctor to cure disease. He's such a sensitive soul, he just wants to make everything better.

My whole team of doctors has changed. I absolutely adore my new MS specialist. My primary seems very caring, I'm still deciding if she is the right fit for me. The neuromuscular neurologist seemed very caring and helpful at first. But after he got the results of my genetic testing he completely brushed me off. He's trying to tell me that because I have no known genetic mutation, only about 50% of patients have one, and the nature of my attacks I can't possibly have periodic paralysis. But when talking on a support group for PP my attacks are exactly like many of the patients! So I will talk to my primary when I see her next week and see if she can help me.

We're going on a family vacation in two weeks and I can't wait! I know I'll be spending a lot more time resting than I have in the past, but it will be nice to get away!
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Old 05-10-2017, 04:25 PM   #33
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Oh, Tricia......you have my sympathy! My granddaghter's are 2 1/2 and boy can they ever throw a fit! And scream! I thought my eardrums would burst! I will eventually live with them but I'm just not sure when. The remodeling construction is creeping by very slowly.

I'm so glad you posted. I've been thinking of you and hoping you were OK. I'm glad you moved. You should be safe. I wouldn't want to live in a place I felt unsafe.


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Originally Posted by tkrik View Post
Erin - So sorry to hear about the loss of your dad. I know how much you loved him and how good he was to you. I will keep you in my prayers.

Lots of changes going on with me and I am not at my computer as often as I used to be and use my phone a lot for the internet. It's hard for me to type on my phone and I hate doing so.

Anyhow, I moved in with DD25 and my grandson. It's a temporary thing. I had to move as for whatever reason the violence in the neighborhood I was living increased dramatically. There was a shooting right outside my apartment. That was the 3rd shooting in a month and was the final straw. Since I didn't have much left on my lease, I moved in with DD25 and continued paying on my lease until it was up (April).

It's just crazy living with a 2-year old. OMGoodness! I am amused by the his ridiculous fits, unless they happen in the morning as they're getting ready to leave and I'm still in bed. Those are not amusing. He's now going through the demanding phase and trying to control everything and everyone. He is learning that that doesn't fly with this grandma. The new nighttime ritual is everyone lays in my bed and we read books. He loves this and if it doesn't happen, he is upset. I have been enjoying being around him and DD25. It's been an adjustment as I am used to my quiet ways, which took me a bit to get used to being alone.

I started a new medicine that seems to be working on both the connective tissue disease and the MS. It's been a challenge to get everything figured out and we're still working on it. I still haven't been diagnosed with anything other than some sort of connective tissue disease and MS; although, the neurologist is still unsure about the MS despite having the lesions and symptoms. I love my neurologist and my rheumatologist and they play well together, which is so important to me.

That's my quick rundown. I will try to get better at posting now that things are settling down some for me. I do miss coming on here daily and the fun we all had.
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Old 05-15-2017, 12:22 PM   #34
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Kelly - I cannot imagine having two 2-year olds having tantrums. I think I would end up having one too. j/k. Kicker- how did you ever do it?

Nemsmom - Sometimes a change in your team of doctors is great. Although, I'm sorry the neuromuscular doctor has brushed you off a bit. Would going to the ER the next time you have an episode help? If anything, they could document their observations and findings and the reports can be sent to the neuromuscular doctor. Enjoy your vacation!!!
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Old 05-15-2017, 11:41 PM   #35
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Well, I've been off for a bit, lost my eldest uncle on Monday to a massive heart attack while he was already in the hospital for an infection of the lining of his lungs. So I'll be away for about another week or so, as my mother and i are making the trip to NH for his funeral. Though there has been some good news this past week or so... sorry not even sure what day it is, but I go see a neurosurgeon in about a month now to get my baclofen pump . My fingers are really crossed it will help, as a few days before the doctor office called me I was sitting down and watched as my ankle jerked sideways and sprained itself. Left me hobbling around for about a week. Just thankful it didn't break itself.

I am done with this body sometimes, I swear I'm just going to start calling it Linda Blair . Rather fitting since the DH decided I might want some make up to wear with the funeral and all, I don't tend to wear any normally, but we went to the store and found what seemed like it might be a light enough shade for foundation of sorts, one of those bb creams....it was... but once it was on, though other than hiding some freckles it didn't change my skin color and yet somehow it looked like I was ready to be laid out in a casket rather than my uncle. It's pretty sad when you have to use baby powder to add color to your face. And worse of all, it doesn't really "wash off" it's one of those that has a redness reducer, so even after scrubbing my face I still look like I belong in a Rob Zombie video. But the other one we got, since the DH knows I have issues finding good foundations, looked like I was going to audition as an Oompa Loompa and it was alabaster, the lightest of the light foundations.

Keep your fingers crossed that the morticians don't try to catch me and toss me into a casket at the funeral service and the groundskeepers at the cemetery don't think I'm some escapee zombie. If you don't hear from me in a week or so it means they probably did, so check the news for warnings about the zombie apocalypse that came to a quick end in Boscawen NH and protect any Irishmen you might know until the hysteria dies down a bit.
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Old 05-17-2017, 07:49 AM   #36
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Quote:
Originally Posted by tkrik View Post
Kelly - I cannot imagine having two 2-year olds having tantrums. I think I would end up having one too. j/k. Kicker- how did you ever do it?
**************************************



I taught Emotionally Disturbed Teens and having twins seemed easy next to that.

I was very lucky with kids and loved motherhood and kids were really good, we really had no terrible two moments. Everyone brings and has different experiences and interpretations. Kids will be 26(!!!!) soon. Had worked out life with MS,to a degree but aging (62) attacked and really this aging body and stuff and MS, just a bad mix!!
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Old 05-19-2017, 12:09 PM   #37
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Starz - I hope you have a nice trip despite the reason for the trip. I hope you start feeling better too.

Kicker - I'm not crazy about this aging stuff either. It seems that after my last surgery (hysterectomy included), the aging process has rapidly sped up!! My body is not happy not only with MS but other ails as well. Half the time I don't know what is what and when something is wrong, I have no clue what doctor to call. You have done very well for yourself and you boys. I have always admired you for accomplishing all that you have despite the MS.
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