welcome

Lynn - posted on 03/09/2012

I just realized that all of the other posts on this blog are about three years old!! Geez.... lol Figures I'd find this site three years too late? lol Well, anyway, if there are still any moms in this group who read these blogs.... it would be great to get some conversations going here!! I wish you all well... and prayers for relief and peace for all of you!!

Lynn - posted on 03/09/2012

Just found this group!! Happy to find other moms that can relate!! I certainly fit the 'criteria'.... chronic pain sufferer for 20 years now. Constant, severe, 24/7 nerve pain in my head, behind my right eye and the entire right side of my head. Took many years to get a diagnosis.... something called "Sphenopalentine (sp) Neuralgia" and there aren't very good options for treatment, other than pain management. The pain first started only a few months after the birth of my second child. My son was 2 years old at that time so I was trying to cope with serious pain and a newborn and a busy toddler!! I'm still not sure how I actually survived those days!! I also suffer with chronic migraine headaches over and above my other constant head pain, so I've had some rough days!! But as I said, I've been doing this for over 20 years now, and I've been a single mom for over 15 years.... my son is now 22 and in college near here, and I have a daughter who will be 20 in a couple weeks who attends college in Chicago, and I also have my adorable little girl, who God blessed me with at age 42.... and she is almost 8 years old, in the second grade. My children are my inspiration to push forward, in spite of pain, and depression, and bad days and they truly give me many reasons to smile each day!! I am grateful for my chronic pain and all that I've learned along with it... it has helped me become who I am today!! Living with pain teaches us many things.... compassion, empathy, tolerance, and love for others who suffer on this same path with us!! Be well!!



~~Many Blessings~~

Lynn

Shona - posted on 04/17/2009

my name is shona and i hv a lil girl izzy who is 5 and 1/2mths old. i suffer with FAP( previously known as familiar polyposis coli) which is a genetic condition that causes polys 2 grow in the colon stomach n we nw found out also in the pancreas. i had my colon removed when i was 15 and this has left me suffering badly with adhesions since(i am nw nearly 30) i have spent more time in hspital than i have at home and have had 3 further operations since. i am nearly always on painkillers n sine izzy was 2mths old i have been on tablets for PND. i feel vry alone as not many ppl around me understand my illness tho try 2 be supportive. i worry bout being alone with izzy as can become very ill very fast, n feel that she deserves better than i can sometimes give. 2 talk 2 others in similar situations would i think be a great help. hope 2 spk soon.
shona.x

Laurie - posted on 02/27/2009

I totally understand where you are coming from. I know I am not the mom I want to be and could be if I was healthy. I pray often that God will help my illness to not negatively affect my kids. And the fact that they don't understand just makes it worse. Ashley has called me lazy twice when I wouldn't do something she wanted me to do (can't remember what it was but it was important to her). That hurts when it comes from someone you love and want to provide for with the best you have. My best doesn't feel good enough.

Natalie - posted on 02/27/2009

Hi I am Natalie.  I don't even exactly know yet what all types of illness I have.  That is my struggle right now... getting heard and having an answer.  I do know that I have a vestibular loss and have mal de debarquement.  One means I have less balance and equilibrium then I should and the other means my head thinks I am still on a boat three years after I got off a cruise.  I know there are other causes for symptoms I feel but I don't yet know what they are.  This has been years of struggle.  I have a hard time being patient and letting go of the "good mother" image I have in my head.  I have a son who is 13, a daughter who is 9, and a son that is 5.  Love being a Mom but hate not being the Mom I want to be.  I am in awe of people who seem to be able to "do it all" even through their pain and illness. 

Andrea - posted on 02/06/2009

Hi! My name is Andrea. I am a mother of 3 with 1 on the way. I have struggled with chronic fatigue very intensely for about a year and a half and then we started having kids and it seemed to disappear nearly completely. Then we waited a bit before getting

pregnant with our fourth but my CFS was wakened in the meanwhile. Anyway, I was looking for other moms who are going through similar stuff and this sounds like it. I was wondering about coping strategies that you guys have it would be great to hear the "tricks" to the trade:) I'm excited this is a Christian based group as well. I was chatting with God tonight and he challenged me to simply be and not try to do. When I lay in bed somedays the question, "what will I do??? " pounds through my head. I don't need to do anything I need to rest in his arms and remember he is all knowing and all powerful and he loves me whether I am laying down 5 out of 7 days or doing stuff 5 out of 7 days. Anyways just thought I'd share. I look forward to hear how God is carrying you through your time.

Sharene - posted on 02/05/2009

Hi! I just found this group and  thought it would be interesting...I have Mixed Connective Tissue Disease, which is a combination of Lupus, scleroderma, myositis, RA, IBS and Raynaud's.  Also have fibrommyalgia...I got sick after I had my twins 6 years ago, so life has been very different than what I had planned!  I had to give up working as a nurse, which I loved, and go on disability ...that was a hard one to swallow at first!  I'm supposed to be the care giver!  It's hard to accept help from others.  But I am getting better at it, more out of necessity than anything else... Time eases the whole acceptance aspect.  Because what I have is very rare, it's been quite a journey, getting medical help, and feeeling alone in my experience.  I just found out that a gal I grew up near, just got diagnosed with mctd...that is so wierd!  I guess we are the 2 for the 2 in a million this time!  It helps me to know that there are others who deal with the same challenges as I do.  I just take it a day at a time and pray that God will give me strength to make it through another day!  That's all I have for now,, It will be fun to watch as this group grows!

Sharene Eckel