Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: sunkissed64 on February 10, 2012, 11:27:37 PM

Title: Day by Day
Post by: sunkissed64 on February 10, 2012, 11:27:37 PM
After a month in the hospital (all of January) we brought my grandmother home for at home hospice care since the doctors couldn't so more for her. She was 96 and lived a happy full life but it doesn't make it any easier to have lost her. She died last Friday here at home with me, my sister and dad at her side. My heart is broken. I have lived with her since my grandfather died in 1994 so this is going to be a huge change. I'm on an emotional and physical roller coaster.

- Still haven't found a job and my unemployment just ran out.

- I am so fatigued and overwhelmed with everything that I find myself praying that I get a break and either find a good new job or win the damned lotto.

- I went to the ER a few days before Christmas with pain. I have a kidney stone (5 cm) and am on meds to help dilate my ureter to see if I pass it. The doc wanted to do a lithotripsy to break it up but I said I'd rather try to pass it myself since I'm not in pain. I'm scared to death at how bad the over priced insurance is going to screw me over as far as what they are not going to cover.

- My hair is still falling out. I look in the mirror and cry because at this rate I'm gonna have to start wearing a wig, how I don't know because from what I understand they're expensive. My doctor lowered my synthroid almost a month ago to see if my TSH level goes down. I'm going this week to have blood drawn to see if anything has changed. He thinks that's what might be causing my hair loss. I mentioned switching to that med that treats t3 and t4 and he refused saying he'd rather wait and see if lowering my synthroid dose would do the trick. Meantime my hair is still falling out. Doctors can be such assholes. It's not just the hair on my head, body hair in general, arm hair, leg hair, my brows look like Uncle Fester's..I wish I knew what the heck was up. I'm starting to wonder if I should try alternative medicine like accupuncture..

- My teeth are a horror movie. Temps fall out (I have many since I can't afford all those crowns) and what teeth I have left are crumbling like I'm in a bad dream. Oh I would give to smile without cringing at the misshapen multi-toned teeth.
I cringe when I think of going on a job interview and having them see my awful hair and bad teeth situation.

- I forget what I'm saying a lot of the time, have to fight to find a work or to form the sentence I just had in my head. I have to take my meds first thing when I wake up or I end up forgetting if I took them or not. Foggy brain is normal for me as is feeling like I have sand in my head and down about the tops of my eyes.

Some days it's all I can do to get up out of bed. I wish I could just hit a pause button on life and somehow try to regroup and get my life back...

Not so sunny in Miami
Sunny
Title: Re: Day by Day
Post by: KatieB on February 11, 2012, 01:16:53 AM
  I'm so sorry about all you're going through. Losing someone is never easy, and sometimes it just feels like life is ganging up on us. I hope you can take some time to take care of you,and let yourself grieve. My heart goes out to you and your family.

  The expense of all these medical and dental procedures is so hard to deal with, especially when you feel foggy, overwhelmed, and just plain rotten. I know how hard it can be and you're not alone. Are there any programs in your area to help out with medical costs? Is there anyone that can help you look into that? It all seems so like too much sometimes, but the people on this list are all here to listen and help with good advice.

  Take care Sunny, please know I'm thinking of you and wishing you well.

                                                          Katie
Title: Re: Day by Day
Post by: Joe S. on February 11, 2012, 04:40:43 AM
sunkissed64, I am sorry to hear that you are so stressed out at this time. I hope that live changes for the better for you asap.
Title: Re: Day by Day
Post by: Scottietottie on February 11, 2012, 06:19:34 AM
I'm very sorry to hear of the death of your grandmother. Death of a loved one is never easy whatever age they are. Take comfort that you were there for her. Many don't get the opportunity to say that last goodbye - and too many die alone.

Grieving takes time and makes everything else going on in your life that bit harder. We are always here to listen when you want to 'talk'.

Take care - Scottie
Title: Re: Day by Day
Post by: slccom on February 11, 2012, 12:13:07 PM
It might be time to apply for disability. That is a hard decision to make, but it sounds like you are there.
Hugs, Sharon
Title: Re: Day by Day
Post by: Jellyb on February 11, 2012, 01:06:32 PM
Sunkissed,
I am so so sorry for the loss of your grandmother.  I was very close to my grandmother also and besides being my grandma, she was also my friend. When she passed my heart was empty. I still think about her every day.  I know your heart is broken, and health and financial stresses just compound everything.

I am sending a hug your way....
Title: Re: Day by Day
Post by: eye2dry on February 11, 2012, 01:25:59 PM
Sunkissed


I wish I could transport myself through time and space and give you a hug!

eye2dry
Title: Re: Day by Day
Post by: Madison Granny on February 11, 2012, 03:55:26 PM
I sorry for the loss of your beloved Grandmother.  Some people don't think it is hard to loss grandparents. But I know that is not the case.  When I lost each one of mine it was a terrible loss.  I still feel their loss and it has been a long time since they passed.
Title: Re: Day by Day
Post by: Luna on February 11, 2012, 06:04:32 PM
Dear Sunkissed, Im sending you a big cyber hug.. You can use one. Im so sorry for your loss and all that your dealing with.

Luna
Title: Re: Day by Day
Post by: mshistory on February 11, 2012, 07:00:31 PM
I am so sorry. I know how painful the loss of a beloved grandmother is - I still think about my grandmother all the time and miss her terribly and she's been gone for almost nine years. Many many hugs for you during this difficult time.

Wigs are not terribly expensive. You can get a nice synthetic wig online for less than $200; wait for one of the cyber sales on the big websites and you can get a good deal. I like the Amore line. If you're going for human hair, and specifically, virgin human hair (meaning it hasn't been processed like crazy), then they get very expensive (as in thousands of dollars). I would recommend a monofilament cap though to create the illusion of a natural part line (they look more realistic).

Sending many positive thoughts your way for things to start improving for you.
Title: Re: Day by Day
Post by: Doxie on February 11, 2012, 07:10:47 PM
Sun kissed, I'm so sorry about the death of your grandmother. I'm sure you miss her very much.

It sounds like you're going through a lot right now, and all these stressful situations and your health aren't helping any.

Like Sharon said, please check into disability since if you get approved, it will eventually help with medical insurance.

Many hugs to you!