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 “g” key, because I had written you two paragraphs of text and then 16 pages of the letter “g”. 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.
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