Mom to Mom

[YorkieonmyPillow]

I've been wondering how your daughter is doing, but I haven't been here for a while.

 I'm so sorry.

 A person just never knows what they will have to face in life, do they.

  (((hugs)))

[hyacinth003]

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@YorkieonmyPillow wrote:

I've been wondering how your daughter is doing, but I haven't been here for a while.

 I'm so sorry.

 A person just never knows what they will have to face in life, do they.

  (((hugs)))

---

No!  When they hand you that baby to take home, wow, you sure don't know what life has in store for either of you!!

Hyacinth

[PamfromCT]

You and your daughter are in my thoughts and prayers.  Please keep us informed.

When my son was very little, he liked to make up songs.  His favorite was "What's Coming Up Now?...What's Coming Up Now?"  Now that he's over 40, a husband and a daddy to two, I should remind him of his song.  I have never forgot it, and I will admit to singing it myself more than once.

Please keep on believing for the best for your daughter.  Such a loving mom!

[NoelSeven]

Hyacinth,

I am so sorry to read of this new development with you're daughter's health.  So painful for her, and so frightening for you. 

I do have a little advice for you.  I hear you, I hear your worry about her employment problems, but my advice is to let that go for now.  You have your hands full dealing with her health, and that's where you need to put your energy for now.

Later, when the dust has settled, you can revisit ideas for an employment search,

I'm so glad you found a neuro who will stay with you and hopefully find answers.

You've had so much to deal with, a lot of stress,  Take care.

[jaxs mom]

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@hyacinth003 wrote:

The problem has been that she is on Medicaid.  We kept her on our policy through my husband's employer until she aged out.  Then we paid privately under COBRA for almost  $600 per month.  We just couldn't afford it anymore, and now I wish we had continued, but who knew?  After spending $9,000 of our own money, we just didn't have it.  Since by law you must have insurance, this was all we could do.

We thought she was going to be finally insured at work, but she had to leave the job right as that would have happened.  This was because she could not do the job physically, and they weren't nice about any accomodations.  Not their problem.

So, I had to do all the calling to find someone who would accept Medicaid.  She is insured (via Medicaid) under the "Blue Cross Community Health Plan."  They have a website you can look up all sorts of providers.  None of her doctors accept Medicaid, so we had to go all through getting a Primary Care doctor who did.  We were always insured under a PPO, so this is all new to me.  The primary care doctor and the second rheumatologist (we saw him Saturday) want a neuro consult, but they don't know who accepts Medicaid or doesn't.  Even though they are on the Blue Cross list, when I called, they said NO.  After about 50 calls, I called a U of I Hospital clinic and they said they do accept it.  But, they were booking NEW patients into March of next year.  So, I told her story, and that her grandmother had MS.  The lady then went to the nurses and decided to slip her in to their MS Clinic this week.  So, I am hoping something good happens since we got to a University hospital system in Chicago. 

Hyacinth

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Is she considered disabled? If so, have you checked with your human resources department regarding keeping a disabled child on your work based medical policy? There is probably a company policy or state law regarding doing that. We did it with our daughter who recently aged out. 

[hyacinth003]

I completely agree with Noel that her health is more important than employment.  She was actually offered a job today.  It would be in the bakery dept. of a large new grocery store in the area.  She accepted it pending further medical tests.  The store doesn't open until January.  But, there would be orientation at another store.  It has taken her since June to find this.

The rheumatologist gave her a six day pack of prednisone as a trial.  It didn't help her joint pain at all.  So, he is more or less feeling her problem is not an inflammatory disorder.  NO DOCTOR will give her pain medication to help out with how much she hurts.  It breaks my heart to hear her say "I hurt so much" and watch her try to get around.  The govt. has them so scared of prescribing narcotic pain medication now.  She has tried everything else.  After she has MRI's of her hands, the rheumatologist may prescribe pain medication.  I asked him - don't you believe she is in pain?

Tomorrow she goes for the MRI of the brain and cervical spine (neck) to see if it may be MS or some other neurological disorder.  She's complaining about a funny feeling in her big toe that concerns me neurologically.  I guess we will hear from the neurologist after she sees the films.

She is breaking my heart, which I figure all mothers know about.

Hyacinth

[hyacinth003]

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@JAXS Mom wrote:

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@hyacinth003 wrote:

The problem has been that she is on Medicaid.  We kept her on our policy through my husband's employer until she aged out.  Then we paid privately under COBRA for almost  $600 per month.  We just couldn't afford it anymore, and now I wish we had continued, but who knew?  After spending $9,000 of our own money, we just didn't have it.  Since by law you must have insurance, this was all we could do.

We thought she was going to be finally insured at work, but she had to leave the job right as that would have happened.  This was because she could not do the job physically, and they weren't nice about any accomodations.  Not their problem.

So, I had to do all the calling to find someone who would accept Medicaid.  She is insured (via Medicaid) under the "Blue Cross Community Health Plan."  They have a website you can look up all sorts of providers.  None of her doctors accept Medicaid, so we had to go all through getting a Primary Care doctor who did.  We were always insured under a PPO, so this is all new to me.  The primary care doctor and the second rheumatologist (we saw him Saturday) want a neuro consult, but they don't know who accepts Medicaid or doesn't.  Even though they are on the Blue Cross list, when I called, they said NO.  After about 50 calls, I called a U of I Hospital clinic and they said they do accept it.  But, they were booking NEW patients into March of next year.  So, I told her story, and that her grandmother had MS.  The lady then went to the nurses and decided to slip her in to their MS Clinic this week.  So, I am hoping something good happens since we got to a University hospital system in Chicago. 

Hyacinth

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Is she considered disabled? If so, have you checked with your human resources department regarding keeping a disabled child on your work based medical policy? There is probably a company policy or state law regarding doing that. We did it with our daughter who recently aged out. 

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I certainly consider her disabled at this time.  However, we don't have a diagnosis for her problems yet.

I don't know if we could go back to our health insurance provider and get her back on.  It would be worth asking, thank you.

Hyacinth

[hyacinth003]

Got some great news today.  Her MRI of the brain and cervical spine were normal!

That is such a relief.  However, it doesn't explain WHAT is still going on with her.  Neurologist suggests an EMG and MRI of thoracic spine.

She is not sure she can do the job she has been hired for.  It will be a physically active job.  She is still in pain and experiencing weakness in her legs.

I am thankful it is not MS.

Hyacinth

[gidgetgh]

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@hyacinth003 wrote:

Got some great news today.  Her MRI of the brain and cervical spine were normal!

That is such a relief.  However, it doesn't explain WHAT is still going on with her.  Neurologist suggests an EMG and MRI of thoracic spine.

She is not sure she can do the job she has been hired for.  It will be a physically active job.  She is still in pain and experiencing weakness in her legs.

I am thankful it is not MS.

Hyacinth

That is such wonderful news.  What a huge relief for your family.  I haven't posted to this thread before, but have been watching for your update from the MRI.  Hopefully the doctors will find the problem soon, but great news on that MRI.

[LTT1]

@hyacinth003

As I keep checking back, I will be interested to see what the doctors find out.  It sounds like she will be accepted as a candidate for social security disability -- I am so sorry for these trials you are dealing with.