I am Back EveryonE!!!
 

Hi To ALL of you!!! I hope you all are in LESS PAIN than I left with you in. If you aren't, I apologize.

I just wanted to fill you in on why I haven't been here in 9 mos. So to start of to say that I had my second daughter, Starr Lynne, born on Sept 23rd, and she is still in the NICU and I stayed 2 weeks after my c-section because my systemic full-body RSD really never went away during this pregnancy and seemed too show it's demonic self throughout my entire hospital stay. I was on a dilaudid PCA pump for 1week averaging 1ml per every 10min. Then 200mg Demerol IM BID. I didn't see my daughter for 1 week I was in so much pain. :(:mad:

The hospital calls themselves a "comfort hospital" and didn't even monitor my daugher for a second before looking at my chart seeing I was on the Fentanyl Patch and starting her on Methadone immediately. Now, she has been there almost a month and will be there at least 1 more. We have our hands tied and my husband and I feel like drug addicts around these people. We can't help but feel this way. They never see Chronic Pain babies, they see crack and meth and heroin babies that are turned over to Social Services and the City.

We are depressed. I am more depressed and anxious on top of this Gosh Darn RSD. PLus my Best Friend, My MOTHER, DIED 6 weeks ago, right before I gave birth to Starr. She tried so hard to make it, but couldn't hang on.

Well I Love you and miss you all..Going to feed my princess Starr:) right now. :hug:

HUggs:grouphug:,
Heather

My heart goes out to you and your family Heather. I'm so sorry to hear of everything you are all going through.

Please be strong and enjoy the blessing of Starr in your lives.

MsL

Heather
Welcome back,,im so sorry to hear about the baby,,I wouldnt care what the people in the hospital think,,worry about your baby, and what God thinks about you is all that matters,,,,,,I hope you have a good recovery with no additional rsd pop ups,,,,And im so soory to hear about the passing of you mom,,Ive been told and have notice that it sems that within the passing of one loved one ,,another loved one is brought into the world,,My dad died 9 years ago,,it about killed my mother,,but2 weeks before he died,,our niece who is always over at moms,,was born,,,keeps her mind off dad alittle,,,God is good,,when he shuts one door ,he always opens another,,,,,,,,,,,,,,bobber

Welcome back!
 

Congratulations on the birth of your Shining Little Starr! You and hubby are blessed again! :)
My sincere sympathy for the loss of your dear mother.
I know this is a bitter sweet time for you, but I want to encourage you to hold your head high when dealing with the hospital! You are not a drug addict!
You deserve the respect and care just as any other mother. I know the loss of your mother and the RSD has probably got the upper hand at times but remember, you are an exception to most normal rules and expect respect, and quality medical care for you and little Starr.
It is great to see you here again! All the best dear....di

Dear Heather,

What an ordeal! Folks that don't have a chronic disorder of some sort have no clue what we endure, you have made it this far with the pregnancy, the delivery, and the beginnings of taking care of your baby, that is so great. The program at the hospital is there for you and your baby and will help you both, take your time and work on getting back on your feet. Don't worry about what other people think, you are awesome for just going through what you did!! Pregnancy, birth and delivery are tough enough without RSD! You take care and have faith.

I am so very sorry about your Mom.

XOXOX Sandy

Hey Bobber!!!
 

Whats up Buddy?! Good to be back and hear from you..How are you Buddy? I have heard to about the passing through one comes another and through one you definitely get a BRIGHT STARR like we received. How is your RSD?

I have a strange story to share with you and everyone. After my birth and epidural two days ago...My RSD in my Right arm, shoulder/shoulderblade, armpit, and under arm to elbow is in excruciating pain. Worse than my whole body RSD. I have to hold it in tight to my body, Air cannot touch it, clothes and sheets neither, and it is on fire and burning and worse than the rest of my whole body. I dont know what caused it or what it is or what to do. Any ideas?

Take Care,
H

Hi Di...
 

Good to see you sweetie! Missed you lots girlie! Thanks for all your kind words here, they make my husband and I feel so much better. Thanks again. I will post some pics of Starr so you can see how pretty she is!:D

Huggs Girl :hug:,
H

Hi nopainever,
Thank you for sharing your wonderful news of a new baby girl-Starr
What a blessing she will be to your family. I'm so sorry you been thru such a difficult time in the hospital. Remember, you are the paying patient and nurses and Drs. work for YOU. I also had a c-section (before rsd) and I know how sore you are. A nurse came into my room my 2nd day and was going to adjust my bed. I said please don't touch the control, I'll gradually put the bed up myself with the controls. She grabbed the controls out of my hand and pushed full speed ahead. About tore my stomach in half. I was in tears and told her she was to never come in my room again while I was in hospital. What she did was inexcusable. Then I told her to get out. Like others said so well, you deserve to be treated with respect. You treatment shows the lack of education of the medical profession when it comes to RSD. As if we don't have enough pain to deal with, and then judged by professionals that should know about RSD.
But focusing on your precious new baby girl will soon make those actions be a faded memory. Sept 23 is my wedding day. We just had our 42 anniversary. And our daughter turned 30 4 days later.
I am so very sorry that your mom passed away. That makes me feel so sad, recalling my mother's death before our daughters birth. My Dad lived a year after she was born. I hope you take time to mourn your mother's death.I didn't right after her death, but when my Dad died, I was helped so much by seeing a psychologist. Journaling, about and to them was a real help in resolving my pain. Hospitals usually have support groups. I've been to grief support groups and has helped somewhat, but one on one is better.
Please take care of yourself while also caring for your increased family.
I hope you body calms down. Are you on any anti-anxiety meds. For me, lorazepam has calmed my sympathetic nervous system down. Thus helping my pain level.
Take care, your friend, loretta, soft hugs:grouphug:

Hi Heather,

It's SO good to see you back here! Congratulations on the birth of your beautiful daughter, Starr!!:)

I am SO sorry to hear about how you are being treated by the staff at the hospital - that is just horrible and no one should be treated like that!:hug: I really wish people would stop judging us just because we are on certain medications without understanding what is wrong with us.

I know it's extremely hard, but try and not let the Doctors get to you too much. YOU, your husband, us and your family and friends know that you are a good mother and did nothing wrong and that is all that matters!!

I'm SO sorry to hear about the loss of your mother - I can't imagine how hard that must have been for you all!:hug: I'm sure she is looking down on you all and is extremely proud of you for going through everything that you have and still continuing to fight on!

You, Starr and your family are in my thoughts and prayers! I can't wait to see the pictures of Starr when you are able to upload them - i'm sure she is gorgeous!:)

Take care of yourself and give Starr a gentle kiss from my mum and I!

Alison

Hi Loretta...
 

Hi Loretta,

This was my 2nd c-section with RSD full-body, 1st time with RSD in my Uterus...Let me tell you the P A I N through the 2nd c-section...
O M G...Worst pain of my entire life! I was screaming! My PM had to manage my pain for 2 weeks in the hospital. I was on a PCA pump of Dilaudid of 1ml every 10min and continuous of 1ml of 1hr. I had Toretol w/ Demerol 200mg IM inj that basically knocked me on my A$&...lol:)...But It was the only thing to help me deal with the pain of the c-sec and RSD. I have been on xanax for years. It really helps me with my anxiety and my flare-ups.:mad:

Thanks Loretta with all your help! I missed you all so much!

Love and :hug:,
H

Awweee sweeet Ali....
 

How are you hunny? I have worried about you hun! How r u? How is your recovery been this last year?

Thanks for your delicate and kind words. They are taken kindly!:p:p I hope you are doing well and now I am back to KIT with you again....

Love and :hug:,
H

Hi Heather,

Thank you for asking how I am doing despite everything you are going through right now!:hug:

I started a College course at the beginning of October in Health and Social Care so that's been tiering me out quite a bit! I have to go to College 3 days a week and then School the other days so of course, the RSD doesn't like it unfortunatley lol! All I ever seem to do now on a weekend is collapse - it's sort of like my body says it's can't take anymore and kinda shuts down!

The Course at College lasts 2 years til i'm 16 so i'm hopefully that i'll be able to cope with it and be able to do all of my placements. We have to do 50 days of placements during the course. My first ones in a caring home at the end of November for 2 weeks. Thankfully, we aren't able to do a lot of the physical stuff because of our age and the teachers have been really supportive and said I can sit down whenever I have to.

The RSD and Dystonia is still basically the same. My Doctors and PTs are wanting to try Botox to see if that will help with the Dystonia but i'm not sure if I want to at the moment especially seeing as though I didn't react well to the blocks - guess we'll have to weigh up the pro's and con's!

How are you and Starr doing today? Hope things are better! Is that Starr in your profile pic? If so, she's gorgeous!:)

Take care,
Ali

Ali...
 

Yes, That is our miss Starr below! Thatnks for the compliment. We think she is beautiful also! :D

I am sorry about the pain, of course, but it sounds like you are really moving ahead in your life and thats very important for us RSD'ers to do. You know that! So keep going to to school it so important sweetie.

I am so happy for you! I love hearing how well things are going!

Love ya,
H