So, that is Pumpkin, now 14, graduating from 8th Grade, junior high, and stepping off into the world of high school...
In March we found out Pumpkin was not having growing pains in her feet, ankles and knees, but instead it was a form of systemic arthritis. Since then it is confirmed that Pumpkin has JRA, juvenile rheumatoid arthritis.
Of course, having me as her mom, there was a higher chance of it happening than if I didn't have the lupus etc. Sigh. How do you deal with that? Well, you don't really. You feel like shit. You feel guilty. You feel angry. You feel sad.
Then, you realize none of those emotions - and certainly not the 'blame game' is going to help anyone. Especially, not Pumpkin.
So, you shove all that down and focus on her and her needs, wants and desires and making her life as uncomplicated and easy as you can while coping with a chronic disease.
We have a great pediatric doctor. Her office is also fantastic and I am very happy with their responsiveness and help so far. Believe me - that is half the battle.
We address the symptoms by helping her cope with the pain and anti-inflammation via medicines and we address the disease directly by adding a DMARD (disease modifying anti rheumatic drug), in this case methotrexate. It suppresses her immune system so it will be more difficult for it to attack itself. I, too, am on the same drug once a week.
Pumpkin just started this bigger gun last week with a small dose and this week with her regular dose of 15mgs, and she has tolerated it well and I am happy to say she is feeling better.
Usually, it takes a few weeks for it to kick in, but a lucky few get instant relief. It seems she has been that lucky. :::knocking wood:::
In fact she is walking on the treadmill right now, second day in the row!
The road ahead will not be without its obstacles. However, I will be there paving the way the best way I know how.
I may not be able to bend the universe to my will but I WILL make it quiver a bit when it comes to my babies and making life right for them.
And when she wants to dance... she will.
Wow, so much has gone on in the last month, and yet, so much has not happened all at the same time. Strange that. Very strange.
Bringing you up to speed... The biggest news by far is that my boys had their Eagle Scout Court of Honor... picture above. They have about 10 plaques and 30 plus letters each from local, state, and national organizations, current and former presidents, vp's, senators, governors etc. It was a really moving ceremony (altho 95 degrees in the school gym) and afterward we had a nice party back at the house!
The Eagle Scout ceremony was the at the end of a string of consecutive weekends of camping and the HUGE spaghetti dinner fund raiser that the Scouts do and my Hubby chairs. And, the Monday right after I went away!
Mom and I went to Atlantic City for her work. This was my 4th May conference with my mom. It was nice. We enjoyed ourselves and I came home with $100 more than I left with! Always a plus! We had nice dinners and fun playing poker machines and lots of slots.
Unfortunately, my health didn't cooperate fully during any of this and by the time I arrived home I was a mess.
Full lupus flare, with the whole peripheral neuropathy thing going on. That is pins/needles/numbness and pain. It was down my entire right side. From the tip of my head to my toes. I have spent the last week tossing and turning, and resting.
I have been experimenting with my meds and with self medicating with a little wine/beer/or liquor to help me sleep. Normally, I wouldn't do this, but I am waiting to get into the new rheumatologist in July. Ack.
This weekend, Memorial Weekend (kudos and thank you to all in the service, past and present) we have nothing much to do. Tomorrow, the boys are heading in to NYC to see the Fleet Week ships and then we have a family BBQ to go to.
Coming soon we have a combination Scout trip and family trip to the Inner Harbor, Baltimore. My dad is coming too (mom and my bil Uncle K will be home) and we are trying to get to a game at Camden Yards on Friday night, Saturday is Fort McHenry, then Hubby and the kids are sleeping on the USS Constellation with the troop. The ship was a former slave ship before being commandeered for the Navy and becoming a war ship in the Civil War and after. Then, Sunday we want to go to the National Aquarium. It is awesome. We visited in 2001 and the kids barely remember it.
As you can imagine, having the Lupus acting up is not going to mesh with the Baltimore weekend plans.
Enter the PREDNISONE. Yes folks, this will be my third round of the dreaded stuff since the holidays. It's a love hate relationship... it works, but the long term side effects are not good. Even in the short term a taper makes you a little nuts, but I need to do it. I need to be in better shape to push my body for the trip.
Things have been hard. Very hard. Lots of tears, lots of frustration. Lots of pain and not enough meds to cope.
It is hard realizing that I am probably not going to be able to do all the things I thought I would do. I want to travel, see the US and Europe, Alaska, Australia. Probably not going to happen. I want to see my grandchildren and do awesome stuff with them... I can barely do stuff with my kids, so that is probably not going to happen. I thought I would go back to school someday for fun... probably not going to happen.
I often feel I am not enough. Not good enough at being a mom, at being a wife, at being a daughter. Lots of little comments and jibes from family seemed to be repeatedly driving that point home. Why isn't this done? Why can't you? Why are you too tired? Why? Why? Why?
They know why. I know why. It sucks for everyone dealing with this chronic illness/disease/pain.
It's been hard.
Yesterday, I was having a particularly bad day and my dad handed me a box. He said it was a Mother's Day gift he bought me but it was on backorder and just arrived. It is a gold heart with rose and a ruby. On the back it says, 'My little girl yesterday, my friend today, my daughter forever'.
Needless to say I was overwhelmed. Lots of tears.
Maybe, life isn't that bad. Maybe the fact that I am blessed with the love of my parents and Hubby and kids is enough. It is has always been enough for me, but...
... even more importantly, maybe I am enough for them. Maybe just maybe.
Hope this finds you well...
A very important list for those with Rheumatoid Arthritis, and/or Lupus, and/or Fibromyalgia. (aww hell, for any of the auto-immune arthritic diseases)
How not to Cripple Yourself
1. Do not scrub your bathroom tub tile walls until your hands can no longer hold the brush, and your back appears to be stuck in the bent position for the bottom half.
2. Do not do wash in the middle of the night after a long day.
3. Do not do a lot of writing and errands the next day, forgetting that sometimes the swelling and pain takes a while to set in.
4. DO try to hide the fact that you are crying in frustration and pain for hours and hours.
5. DO take pain killers before you get to that point.
6. DO text/talk with someone who understands and asks the right questions and doesn't say dumb things like 'It will be ok.' (Uncle K, thank you)
7. DO hope/pray/light candles etc that you will get an appointment soon with a new rheumatologist since you really don't like the one you have now.
8. DO go for the yummy! ;-)
9. DO play silly computer or iphones games to distract yourself.
10. DO remember that it won't be ok, but it will get better than right now.