I have little ones too. I think that adds a whole other layer to being chronically ill. My boys are 9 and 7, and I have a 10 month old girl. The best thing about being a mom and dealing with all this is that they bring me out of myself. I can't get lost in self-pity. I have cuties to hug and laugh with.
I have had terrrible forearm pain for the past 4 weeks or so, so I can emphasize...
My story is long and I'll try to keep it succinct.
When I was 27 (9 years ago), I had sciatica that began while I was pregnant with my first child. I was told it would get better after his birth. It just got worse with time, and a year after he was born I was also diagnosed with sacro-iliac arthritis, which caused the sciatica. I had an MRI shortly after that and was diagnosed with degenerative disc disease, bone spurs and calcium build up in my spine. I had baby number 2 and things got worse. My back pain was constant and debilitating. Visited a rheumy who was very dismissive: ( come back when you can't walk anymore), saw a pain specialist who caused me more pain when giving me cortisone injections. Then I was diagnosed with chronic hip bursitis and depression. ( been on zoloft ever since, except during pregnancy) Tried many nsaids, none worked better than ibuprofen. I take the occasional (5 times a month at most) vicoden to get through days that are bad.
I think I went through about 3 years of really adjusting to my new status in life. I was too focused on my pain, and what I couldn't do anymore. I had this vision of what I would be like as a mom, and I wasn't living up to my own expectations. Learning to live in that "narrow energy window" , where I was at my physical peak, and could push the pain back for a while, was the hardest thing to learn. My house wasn't clean enough, I wasn't cooking enough meals, I wasn't able to run and play as much with my kids. I felt robbed.
I often had thoughts of guilt. I would talk to my hubby of feeling worthless. I wasn't a good enough mom, a good enough wife, a good enough friend. If I wasn't meeting my OWN standards, how could I meet anyone else's??
I had a miscarriage in 2005, and after that I started getting strange rashes, headaches, hair loss, all attributed to the hormone-roller coaster I had just been on. We had our miracle daughter last winter, and shortly after her birth, my skin went hay-wire. I can't be in the sun at all anymore. I wear spf 70 at all times. I have lesions on my arms, face. Petrichae on my legs, trunk. My toenails all fell off. My hair has continually shed at astronomical amounts. ( I am a golden retriever, I'll say) Joint pain is spreading and now includes: both hands, wrists, shoulders, hips, ankles, balls of feet and toes. I get frequent headaches. My forearms are in constant pain, not helped by lugging cute 22 pound girl around. All of the compact flourescents I had in my house are now gone, and I think that has helped with the headaches a bit. But all the stores have them, and it causes me pain.
I have been told it could be fibromyalgia, my docs are reluctant to diagnose with lupus, because my ana is normal.
So it's a matter of waiting, re-testing, etc until it is definitive.
Things I have found to help the most:
1. My kids, who help me not to focus on myself. And I don't complain in front of them, they can pick up enough from my talking to others about it, and the level of activity I am at on any given day.
2. Faith in God. I don't know where you are with this, but knowing I am loved unconditionally and just as I am, is priceless.
3. My hubby, who makes me laugh and feel human everyday. We use the "spoon theory" (you have to read this, just google, it comes right up) to communicate pain levels.
4. Knowing when to rest, when to push, is more of an art than a science, and finding this balance has been wonderful for me.
5. Letting go of those images I had of me in my head, and just accepting what I could do, and learning to appreciate that.
6. This website. You will find great advice, lovely souls on here.
God bless, and keep us updated on your journey,
"You do not have a soul. You are a soul. You have a body." C.S. Lewis