So worried about my daughter - Page 5

haddon9 · ‎03-09-2010

I am so sorry to read about all that your daughter has been going through. I remember when she had a tough time getting a job and when she finally found something it made her feel good.

Sometimes life really is not fair! It's not like you're asking for the moon & stars but just for her to live a happy & healthy life where she can find meaningful employment.

It seems that your daughter's pain is in mostly her joints? Have your considered Lyme disease? I can tell you that if you ask one of the mainstream specialists that your daughter has been seeing about Lyme you will most likely hear that there is no such thing as chronic Lyme disease.

Yet you know from experience that you are not getting any satisfaction with these same doctors concerning her pain. One does not expect doctors to always have all of the answers but one does expect compassion and support. A form of support for your daughter would be some pain relief! A lot of it is political. It's the same thing with chronic Lyme disease. I'm not saying that your daughter has it but it might be something you should consider and look into. Many people who have chronic Lyme have a lot of joint pain.

There is a site online called Lymenet.org with lots of helpful information and how to go about finding help with a large community board.

It's devastating to see one's child in so much pain all the time! Right now I've been having trouble with one of my big toes and it's killing me! I have lots to do for Christmas and I'm moving in slow motion due to the pain which is miserable. I've only been in pain which comes & goes for a few days. I can't imagine dealing with chronic pain for long periods of time.

I wish your daughter the best and I hope she finds some relief soon!

newname0 · ‎06-20-2015

I'm sorry to hear about your daughter's condition. I have some thoughts off the top of my head:

1) have you tried holistic medicine like acupuncture?

2) look at Doug Kaufman's Know the Cause website for some ideas about pain management.

3) I know you posted here on Mom to Mom but did you let hckynutjohn know of your daughter's condition? He has a lot of experience with pain. He usually responds in Wellness.

4) I know that calcium is called nature's pain killer. Perhaps she can take calcium tablets for now.

Finally I have prayed for your daughter's healing. I hope you get good results soon.

YorkieonmyPillow · ‎01-13-2013

@haddon9 I came here to suggest she be checked for Lyme, also - my daughter was watching a program last night that featured a woman who was having terrible joint pain; they found out it was Lyme disease.

I hope her daughter gets a diagnosis and some relief soon!

P.S. Until she gets some pain med, they sell OTC Tens units now, have you all thought about that? xo

haddon9 · ‎03-09-2010

@YorkieonmyPillow wrote:
@haddon9 I came here to suggest she be checked for Lyme, also - my daughter was watching a program last night that featured a woman who was having terrible joint pain; they found out it was Lyme disease.

I hope her daughter gets a diagnosis and some relief soon!

P.S. Until she gets some pain med, they sell OTC Tens units now, have you all thought about that? xo

Yorkieonmypillow, I think it's something that should be considered.

My husband went through chronic Lyme and that's how I found out how to get tested & where to find a doctor who has expereince with Lyme disease.

It's not easy to cure but one can manage and even get better with it but you have to get the right treatment.

sktchy · ‎03-10-2010

@hyacinth003 wrote:
My daughter can't seem to catch a break in life. She is 28 now, and was diagnosed with an autism spectrum disorder in childhood. Suffice to say she had a very difficult younger life.

She went on to be a college graduate, and it took her forever to find a part-time fast food job. She was going to be promoted and go to full time. However, she developed physical problems that left her unable to do such a physical job. She left the job at the end of May this year. She has had 3 interviews, but has been unable to find another job. I think when they see her walk that they don't want to hire her.

Which brings me to today. A year or so ago she developed severe pain her her knees, ankles, and bottom of feet. She was diagnosed with spondyloarthropathy, which is an arthritis in young people that comes from the spine. However, she has responded to no treatment. We have been told to seek a consultation with a neurologist. It is felt that her difficulty walking and abnormal gait now may be multiple sclerosis (MS). My mother had (and died from its complications) MS. So to say I am scared witless is an understatement.

This has all been complicated by her having to go on Medicaid. No doctors (especially specialists) want to see her. It took me 2 days and a lot of luck to get her appointments with a rheumatologist and now a neurologist.

I got an appointment (helped by someone nice) with a neurologist at the MS Clinic at a University hospital this week.

Darn, this is so scary.

Hyacinth

You must be a wonderful Mom. In order for your Daughter to achieve so much regardless of these 'bumps in the road' it takes a strong Family unit to keep going.

I will say Prayers for your Daughter and your Family. I hope there is a neurologist who can help.

Do you mind disclosing where you are located ? Maybe someone on the board would be able to refer you to someone local.

BohemianGal · ‎03-29-2016

Pam..

That is wonderful about your SIL, and this is the best advice...for people who CAN AFFORD TO GO TO THAT TYPE OF MEDICAL FACILTIY.

Unfortunately, not eveyone has the means to obtain the best medical attention, and I find it both sad and infuriating.

I have long term chronic illness, and have been through "the ringer" for over 30 years. ...I am on Medicare (disabled), but fortunately, my husband has wonderful insurance, and we have had the financial means to go "out of pocket" and seek outstanding medical professionals as well, even though we have gone through a major portion of our life savings..

Despite this, I am still very ill, as there is no known cure or treatment for my particular health conditon at this time...but I am greatful that I at least had the oppportunity to be seen and diagnosed by highly qualified physicains (both conventional and alternatative)...

Perhaps someone with financial means will come forward and help this young woman get the medical attention she DESEARVES.....

Another opition is to try local fundraisng...perhaps their community will come forward and try to assist the family.

As a mother of a 27 year old son, it would break my heart to see him suffer if I thought there was help available, but we couldn't afford to pay for the services.

I wish them all the best..and they will be in my thoughts and prayers.

Catiele · ‎08-20-2012

Oh my God. Your mother daughter bond is remarkable. You will get answers. Just hang in there. Hug your daughter for me and a hug for you. Thoughts and prayers to you both.

Kachina624 · ‎03-10-2010

@hyacinth003 I'm so sorry to hear about your daughter's problems of which she's had more than her share. It's great that your persistence managed to get her appointments with specialists. You're a real mama bear, but aren't we all when it comes to getting the best for our kids?

I just wonder if she has ever applied for Social Security Disability? It seems she is physically unable to work at present so that might be appropriate. It would ease the burden for you too, I'm sure, and take the pressure of job searching off of her.

Just an idea.

New Mexico☀️Land Of Enchantment

Imadickens · ‎06-15-2016

Whatever happened to humanity? It's easy for doctors to go through life clueless about these cases as their front desk does the screening. I've worked with both very of passionate and extremely rude front desk people. I think every doctor should be made to secretly listen in on a call to his and decide if that's the image to be public. Also, every doctor should try to get appointments at various offices WITHOUT letting on that he/she is a doctor. It would surprise them what they find!

Before I'm accused of not knowing of what I speak, I have lived in a family of doctors my whole life. I know regulations make it hard for docs today, but still...

Never underestimate the power of kindness.

libbyannE · ‎10-27-2010

Hyacinth, YOU sound amazing. Your daughter is so fortunate to have you guiding and fighting for her. She sounds like a fighter herself. Good luck to you at the university hospital.