I need some support please
 

Hello,

The love of my life has RSD/CRPS, diagnosed in April of 2004, but it has acceralted this past month from a spinal injection. Today we had a follow up with a doctor, I don't know why they call him a doctor, he didn't listen to my loved one at all. He didn't seem to care one bit. I don't know who is more frustrated him or me.

I have been carrying a huge load for the past month, trying to be strong, working, managing life, forgeting to take care of me. I am not a selfish person, but I am at my breaking point and found myself crying on the way home from the doctor. I am trying to be positive and strong and I just can't do it on my own anymore. I need some sort of support, so anyone out there that may know what I am going through and how to cope better and be tht strong person for my loved one, please hekp me.

Thank you

QM

Oh my QM!
 

That was soo [insert words here] by that doctor!

For all you have been thru? Get copies of her records and go get a second, third or fourth opinion until you find a doc that knows what to do and CARES! They are out there - I know I found one and it's made such a difference in life!

It can take a while to get into see other new docs, but it can certainly be worth the time and effort to see them.

I wish you well slogging thru this all. At this point, it does seem like slogging, but it is worth it in the end! Don't lose hope and faith! :hug:'s- j

Hi QM and welcome. I've been caring for my hubby full time for six years. Before that I helped him with many things. He's had ms for 21 years. He's in a wheelchair. So, yes, I understand the frustration of not having some doctors listen. Been through all the ups and downs. We've finally landed a great spinal cord doctor and he's a keeper. They are out there, keep looking. Once you find a great doctor things settle down more because you develop a trust with them.

Anytime you have questions or just need an ear, we're here for you. There are several carepartners on this site that understand and get it too. :hug:

QM....here is the picture I found...if you like and need help setting it as your avatar..let me know. Not trying to hyjack the thread, just this is the easiest way to post the picture.

Attachment 4685

:hug:

WE have a follow up on May 6th, with the PAC, a different PAC than the first. The first PC was/is awesome. When they were setting him up I looked straight in the eye of the receptionist and made it clear we do not want that one again, EVER! Then I asked if this PAC will actually listen to my boyfriend. SHe assured me that she would.

I am trying not to give up. I am having a fundraiser at work to raise awareness and funds for research. I am researching and reading everything that I can.

I know there is no cure out there. I undestand that. What I don't understand is the constant pain my boyfriend endures daily. I have with his knowledge signed him up for a mentor and I hope this person can encourage him inways that I can't.

Then someone sent me this site's link to join and although I work full time I will make it a point to come here frequently.

I just keep crying today. UGHH it makes me so irriated about this MD, the same one who injected my boyfriend and wants him to have 2 more injections.

LMBO...Love it and yes please help me get it in there.

QM, somtimes it becomes hard on us because we are helpless to fix what's going on. Have you considered asking your doctor for something to keep you from getting depressed or having anxiety? I have a script for zanax and take it only as needed. It helps very much when I am having one of those days where it feels like the walls are closing in. For me it's anxiety rather than depression. :hug: Take care of you first so you can be strong for him. And when you feel like you want to run, we all have at some time, come here. :hug:

:D No one warned you..I'm a sneaky monkey too.

I do have to say...It looks might cute. :p

Welcome to the forum my little quackymoose. :hug:

Right There With You
 

QM,

Hello, I'm Teresa. I'm sorry that you are going through this, some days/weeks can be so hard. I felt like I was reading my own words. I know exactly how you are feeling, been crying intermittently for three days. Jeff is lucky that we like his doctors and they listen to us. While we had to deal with the work comp docto'rs it was a nightmare. Unfortunately I can't offer any great wisdoms. The best thing I have found is to find a place I won't be disturbed and just let it all out, haven't had time for that yet this week:winky:. It's also important to have a good friend to talk to. Still there are times that this is so overwhelming. Don't be hard on yourself or feel guilty. This is a lot to deal with and without a good team of doctors it's so much harder. Keep searching till you find the doctor that you both are happy with. Do either of you have family close by? I have begun handing off small errands to our 2 oldest boys, and at the roughest points asked my mother-in-law to cook dinner for Jeff and the boys on nights I worked. Small things sometimes make the biggest differance. Good luck in your search for a better doctor. Hope to see you around the forum.

Teresa :grouphug:

I'm glad you found this forum, QM.

I would remind you to encourage your DH to ask for small things that would comfort him. Sometimes when a caregiver cannot change huge things-like the amount of pain-there are small comforts they can help provide that can make so much difference in how well the person in pain can cope and will also help you feel like you have helped.

Your DBF is lucky to have you.

Hugs to you, Grandma Sue

MIL's do that? :confused:

Sorry, I couldn't help myself. :D I've asked my MIL several times to help and she has some reason or another to not. Even just sitting with her son and maybe cooking something for him. :o

Thank you all for welcoming me, setting up my avatar, that was nice surprise and just encourging me.

I haven't asked my doctor for anti depressants yet, I was on them years ago from my previous marriage. I am nt sure I want to go tht route again; but I will talk to my doctor soon.

I definatley think that finding this message board and talking with the ladies from RSDHOPE I have found some help.

I am really lucky. My MIL would do anything I asked if there is any way possible. She does frustrate me because I have to ask for help and she doesn't just offer but at least I know all I have to do is ask. The hard part is that I'm very independent and proud so it was hard for me to ask for help in the begining. I also found it was hard for her to see her son going through this. I bought a couple of books on RSD and gave them to her to read. Since then she's been much more understanding. Also in November she was in a car accident and broke her neck and back. So I took care of her and Jeff. I would cook dinner at her house every day and we would all eat there then I would go to work or we would go home and Jeff's step-dad would do the clean up. We've all learned to work closely as an extended family. She's recovered now and back to work so that load has lifted.

I'm sorry you aren't so lucky. How much does she know about RSD? Were they close before he developed this?


Teresa

PS...It probably helped when one day I was having a very bad day and called her over to my house to take her son back to live with her because I couldn't take it any more. That's usually enough to make a mother think twice about the situation (help out or take him back?)

LMBO "help out or take him back"

Well my bf's mom is deceased, I never had the chance to meet her. HIs dad is local and has so much on his plate right now.

I too am fiercley independant and "think" I can handle everything. But since I am the only one able to work (I'm not complaining) I feel I need an outlet. Coming here has improved my mind immensley, just knowing there are other caregivers and sufferers willing to help.

I have 2 older kids living with us that help out daily. They are amazing.

There are days I just feel so overwhelmed I come home and don't want to cook at all. I thought I was lazy, but maybe just overwhelmed.

I can't say thank you enough.

Jim has ms. He's had it since 1988. She knows all about it. :D They were close at one time.