For Stella Marie

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BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 9/27/2007 9:43 PM (GMT -7)   
Thank you so much for your support on another thread. All I have to say is WOW. Over two hundred views and you were the only one who gave me support, I appreciate it. I've noticed consistant themes on this forum: I'm frustrated with my medical treatment, my doctor thinks I'm drug seeking, why doesn't the media report the under-treatment of chronic pain patients, why don't chronic pain/illness patients stand up for themselves--well, I guess if we can't stand up for each other....... I've hesitated about posting until I read your post, b/c I felt totally unsupported and that's what I come here for; unlike other "diseases," my chronic illnesses do not have community support groups all over the city holding meetings all throughout the day for me to go to. The county where I live does not have recovery centers for people in my condition, rehab centers, departments specifically targeted to help people in my condition. Once again, thanks.

baseballmomof3
Regular Member


Date Joined Apr 2007
Total Posts : 189
   Posted 9/28/2007 5:59 AM (GMT -7)   
BigLucy:  I just wanted to say welcome and sorry that I haven't responded.  I actually haven't even read your other post (I don't think) but I am sorry that you didn't feel like you were getting support.  Thankfully, we have Stella on here -she has been such a great support for me and I appreciate that she will answer any time that I need her.  So, Stella - THANK YOU!!!  I wish that we lived close to each other - I think we would be great friends!  BigLUCY, I hope you get an answer to your question.  I will try to go through and read posts today - I have been working this week so am so far behind!
 
BBMO3
DX:  Migraines since June, 2006, kidney stones
 
RX:  Daily - Verapamil, Trileptal
PRN:  Relpax, Prednisone, Dilaudid, Lortab, Lidocaine Nasal Spray


BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 9/28/2007 7:54 AM (GMT -7)   
Thanks basesballmom: I didn't post a question, I answered one and was put down for sicking up for myself and my condition (over 10 years with chronic illness/pain and since there is no CHOICE involved in my disease, or cure at this time, I'm looking at years to come.........). I guess the anonymity of the internet is that it can lead one to present as self-righteous, condescending, self-absorbed, and just rude; if one had to go to a in-person support group, that behavior would be put in check immediately by the other members.

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 9/29/2007 8:45 PM (GMT -7)   

Lucy and Baseballmom,

Thank you for the kind posting.  You are so right when you described how difficult life can be with the combination of both a chronic illnesses and chronic pain issues.  I often feel abandoned and alone; as very few people truly understand the road we try and walk each and every day.  It is so hard to not only find yourself cut short in the middle of your career, but I also feel inadequate when it comes to parenting responsibilities and my marriage.  There is no one around me that really understands all of the balls that we try and keep up in the air.  There are no patient support groups the really address the issues that I face, and then if you do find a group they tend to be older individuals in different phases of their lives.  It saddens me that I am too tired to do the little things mothers do for their daughters.  She does far more for me then I am able to do for her.  This breaks my heart. 

In addition Lucy, I have started to write several responses to your posting about sexuality.  I have either fallen asleep in the middle of them or lost my train of thought.  Once I woke up and must have had my finger on the ā€œgā€ key, because I had written you two paragraphs of text and then 16 pages of the letter ā€œgā€.   What can I say but the road to h-ll is paved with good intentions.  Sexuality is a very important subject and it is sad that we do not have a way to talk about it.  I know that it is something that hits home for most of us, but when only one or two people respond people either are extremely uncomfortable with this topic or just plain do not care.  I for one do not want to lose all the intimacy in my marriage.   Between fatigue, libido issues with medications, not feeling attractive or desirable, etc..etc..etc.. the basket in just over flowing with things I seem to face on a daily basis.  I truly feel it is so important that we do not lose this very important aspect of our relationships with significant others.  Oh well, I have prattled long enough.  God bless and thank you for such a supportive cyber relationships.


Stella Marie

Dx:  Rare progressive neurodegenerative disease called Multiple System Atrophy (brain rot, autonomic system failure, neuropathic pain and a whole lot more).  Added improvements:  Intrathecal pump and a spinal cord stimulator and a new brand new power wheelchair with shiney horn,.

 Medications: Sinemet, Requip, Klonopin, Baclofen, Provigil, Lyrica, Fentanyl patches, Lidoderm patches, Dilaudid, Fentora and Zofran

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