Tuesday, November 17, 2009

Things About My Invisible Illness(es) You May Not Know

I found this and thought it was interesting.

Things About My Invisible Illness(es) You May Not Know

1. The illness(es) I live with: Interstitial cystitis, Chronic Pelvic Pain, antiphospholipid syndrome; AKA APS or sticky blood, a connective tissue disease similar to lupus and RA. And several others that keep popping up. All are autoimmune which means my immune system is hyper active and is attacking healthy tissue in my body.

2. I was diagnosed with it in the year: most were diagnosed within the last 6 months

3. But I had symptoms since: for as long as I can remember

4. The biggest adjustment I’ve had to make is: remembering to take all my meds and to stop when it hurts.

5. Most people assume: I am just fine or faking it.

6. The hardest part about mornings are: getting out of bed.

7. My favorite medical TV show is: Mystery Diagnosis

8. A gadget I couldn’t live without is: my computer & BlackBerry

9. The hardest part about nights are: not being able to sleep because I can't get comfortable and waking up several times because of pain.

10. Each day I take _about 20?_ pills & vitamins.

11. Regarding alternative treatments I: if I had the extra money I'd try anything to feel better. And I'd do the same for Jordan.

12. If I had to choose between an invisible illness or visible I would choose: invisible

13. Regarding working and career: not sure if I could go back to work at this point.

14. People would be surprised to know: I feel alone often.

15. The hardest thing to accept about my new reality has been: this is it. This is my life now.

16. Something I never thought I could do with my illness that I did was: ?????

17. The commercials about my illness: I've never seen one for any of the diseases I have.

18. Something I really miss doing since I was diagnosed is: walking without some degree of pain, but this has been going on for years and years.

19. It was really hard to have to give up: being in control of everything

20. A new hobby I have taken up since my diagnosis is: nothing so far!

21. If I could have one day of feeling normal again I would: spend it playing with the family.

22. My illness has taught me: to let God take control of my life.

23. Want to know a secret? One thing people say that gets under my skin is: "If you'd get out and exercise more...."

24. But I love it when people: help when I really need it.

25. My favorite motto, scripture, quote that gets me through tough times is: I just look at my Peanut. If she can do this I can too.

26. When someone is diagnosed I’d like to tell them: It's overwhelming and scary but you will be OK.

27. Something that has surprised me about living with an illness is: how many other people have the same issues I have.

28. The nicest thing someone did for me when I wasn’t feeling well was: take the kids for a few hours so I could rest.

29. The fact that you read this: means you want to know about what's wrong with me :)

Thursday, October 22, 2009

Feel free to pass this up

I just need to vent.

I don't feel well and my body hurts. Everything hurts. It hurts to breathe, it hurts to pee and of course it hurts to move. I'm tired. I want to go to bed but I can't. The kids will be in bed around 830 and Rick will be home around 1030. I'm hoping to be in bed by then but I'd feel guilty so I'll stay up.

This is what I get to look forward to for the rest of my life. Periods where I feel great and then the flares. I just need to remember if Jordan can do it then I can too.

Tuesday, October 6, 2009

Fall

It's finally cooling down and I never thought I'd be so happy to have temps in the upper 60's. After living in Ventura for 5 years I forgot what it was like to have months of 90+ heat. I don't like it. I'm sure we'll have a few more days of heat but for the most part I think fall is here.

Bub likes school. I was a little worried but he took right to it. He's doing good, likes his teacher and seems to be a lot like Jordan. He's smart but he's jumping ahead and making little mistakes that could be avoided if he'd just sit a little longer and listen to directions. Always in a hurry to get things done first ;)

Matty had his birthday and it turned out pretty good. I think I like the idea of doing something on the small side. We went to the house of the giant rat and he had a good time. I made his cake, my first attempt at an ice cream cake even, and it turned out really good. No need to buy one from Baskin Robbins anymore :)



Jordan is doing really well. She likes school but like her brother she's in a hurry and makes little mistakes. She's reading very well and she's becoming an amazing little artist. She got an award last week for creativity. She gets her artistic talent from Auntie Trace :)


Rick started school last month. He really likes it and hopefully in about 6-7 months he'll be out of FedEx. Other then the benefits I see nothing good about that company. They run their drivers into the ground and when one gets hurt because they're running around trying to make their crazy number of stops in time. The company is evil. Really.

I'm OK. Still trying to understand what exactly I have. More tests showed that I have even more issues then we thought. But I'm on meds now and they are helping.

So that's out little update. Nothing major happening at this time. Lets hope it stays that way :)

Monday, August 24, 2009

Momma has Lupus

It's official. It's not what we expected but it is what it is. It's an answer and now we can start treating it. Hopefully I won't get sick(er) and I'll feel better soon.

Jordan is amazing. She keeps telling me not to think about it. "Just take the medicine because it will make you feel better!" She would know first hand too. She told me she'd help me when I felt bad and she said if I need shots like her she'll hold my hand. She's such a sweetie.

Both kids started school last Wednesday. Matthew loves it so far and Jordan is happy to be back. She gets so bored after so many days of not doing anything. We did stuff over the summer but the girl loves to learn. I hope she stays this way.

First day!

Miss Jordan got glasses! Just for reading but knowing our family she'll eventually need them all the time at some point.

And this is a tiny little lizard the kids caught outside yesterday. I guess there has been several in the yard and they finally were able to catch one.

Sunday, August 2, 2009

August already

In a little over 2 weeks my Bub will be starting his school career. Hard to believe that next month that boy will be 5. He's excited to start school and he's hoping to be in class with his friend Jake. I on the other hand am hoping he is not. Matthew and Jacob in the same class would be hard on the teacher. The boys love each other and would talk and play when they should be learning.

Miss Jordan will be starting second grade. I remember her first day of school like it was yesterday and it just doesn't seem possible that she's already starting second grade. She's more then ready to go back. She gets bored so quick these days so she's counting down to 8/19.

She saw Dr. B about a week ago and for the most part Jordan is doing really well. Her eyes are clear which means the Humira is working. Jordan hasn't been able to go without a uveitis flare in years so her being clear for 6 months is huge! Her right knee isn't really bad but it isn't good either. She does have some swelling and her ankle is warm but not swollen so for now she's back on naproxen twice a day for a month and we'll see how she does. Dr. B is afraid J is trying to flare again. Hopefully not but is she is we'll deal with it just like we always have.

I know there are other JRA families who read this from time to time so I'm adding a video of Jordan doing her Humira injection. She really hates this one because it stings but she knows it helps and she needs it.

video


Some fun before school starts :)

Saturday, June 20, 2009

For anyone who doesn't know Jordan's situation...

I wrote this last year for our Arthritis Walk but I thought I'd add it to our blog for anyone new who comes across it or for anyone who's forgotten what it is exactly what we deal with on a day to day basis.


One of the last things any parent wants to hear is that there is something wrong with their child. After 6 months of not knowing what was wrong with our daughter, Jordan, we finally had an answer and it wasn't anything we were expecting. I was told Jordan had Juvenile Rheumatoid Arthritis. I was in shock and I remember thinking, She's not even 3.... kids don't get arthritis. There has to be another explanation. My daughter does not have arthritis. Finally I accepted that Jordan did indeed have arthritis. She had surgery a few weeks before she turned 3, which confirmed the JRA diagnosis. A month later we saw a pediatric rheumatologist. Jordan started her medication and we thought she was doing pretty good. 6 months after her diagnosis we found out that she had inflammation in her eyes. It's been a roller coaster ride ever since. Here we are 4 years later I know so much more about JRA. Thankfully she has more good days then bad. She's on weekly medications, sees her rheumatologist every 8 weeks and if we're lucky she only sees her eye Dr. every 3 months. Usually it's about every 6-8 weeks. Jordan had to have a joint injection and it was one of the worst things I've ever sat through. Usually an injection will last about 6 month but Jordan's only worked for 6 weeks. About 3 months after the injection, I noticed her other knee has started to swell. Her arthritis is spreading. She’s now on Humira and methotrexate injections. She has a hard time fighting off infections because of these medications so she’s often sick and misses school. I keep reminding myself that Jordan has a mild case of JRA. Yes, she has days where she’s miserable but here are so many other kids who are sicker then she is. They can't walk, run or play. This is no way for a child to live. As a mother it breaks my heart to see my baby in pain and uncomfortable. There is nothing I can do to comfort her and it is a horrible feeling.

Thursday, June 11, 2009

We did this!!

I know we can't take all the credit, but Rick and I made these 2 perfect little monsters. They amaze me yet drive me insane daily. But then I get a photo like this and all that goes away and I think, WE did that! 2 perfect little people...


So, Jordan is totally crazy over this boy, Zach. He's a good kid and they've known each other pretty much since birth. Rick and Ryan grew up in the same neighborhood, played little league together and now we're raising our families next door to each other. From the day we moved in I saw the little sparkle in J's eye when Zach was around. She's just a baby and really she shouldn't be thinking about boys yet but she is. Maybe it's just a faze. Or maybe this is the beginning of what we'll get to deal with for the next 10+ years. I just hope she breaks a few hearts and that it's not always her getting hurt.


And, Matthew finishes up Pre K soon. We can't decide if we should keep him in through July or let him have most of the summer off. School starts August 19 so if he goes through July he'll have a few weeks off. He only goes 2 half days a week but he likes it. And it keep him out of my hair considering all of a sudden he needs to be entertained A L L T H E T I M E!!! I love my Bub but he really needs to become a little more independent again. Not sure what happened but he seems to need to be with me all the time. I was trying to remember when it started and I believe it was right around when I was in the hospital in the fall. I really should be happy he still wants me. I know there will come a day when I'll be chopped liver.

So tonight as the kids are sleeping and I'm looking at these new photos I'm wondering where did my babies go?? I swear I just had a baby girl. Didn't I just get a positive pregnancy test telling us #2 was on the way?? I'm not really going to be 35 am I? What happened to the last 7 years of my life? It's all a blur until I look at the pictures like these...












And then I remember it all.

Sunday, June 7, 2009

AHHHHHH!!!!!

SED rate back up, left wrist is "thick." What does this mean?? Not too sure but it doesn't sound too good. Good news is her eyes are still "quiet." I could shout that from the roof top and only a select few would know what I was talking about. The Humira seems to be doing it's job as far as the eyes go but now we're worried about her joints. Why can't we get to a point where EVERYTHING looks good and stay there?

J's last day of school was Friday so it's time for Mommy to keep her busy. It's gonna be hard considering Momma doesn't feel well most days. I'm still waiting for my referral to the rheumatologist. What are the odds? My left wrist has been swollen and stiff for a few weeks and my index finger has been swollen for who knows how long. It hurts pretty bad too. The rest of my body just aches and feels like I'm covered in bruises. Both of us with RA? Guess we'll see.

Bub will be finishing up pre K in a few weeks. Come August both kiddos will be in school. What am I going to do with myself? Hmmmm.... I can make all those different doc appointments I keep putting off. I can take an online class or 2 and if at all possible I could get a nice DSLR and pratice some photography. Yeah, I pick that. I'd love to do some random photography stuff once the kids are in school. Now to find the funds to get a camera and a lens. Some day....

Oh and we took the kids to see Taylor Swift on 5/24. The show was awesome!!! J had a great time and Matty, well Matty fell asleep. Ahhh.... to be a man and be able to fall asleep anywhere at any time.

On the way to San Diego
















Before the show















At the show















Tuesday, May 12, 2009

Our walk was AWESOME!!!

As many of you know, or as many that actually read this thing anyway, our annual Arthritis Walk was held on May 3. This year it was held at Magic Mountain. It was a little more chaotic then last years but it was fun. We missed out on having our team photo taken again this year. I missed the booths but J did get her hero hat. The kids wanted to go play once the walk was over and we had some trouble getting our tickets from Guest Relations. It all turned out and we had a blast. The kids were able to ride Ninja and all the water rides. And of course they rode just about everything in Bunny World. I think they like it there. Rick and I weren't too sure about the park because of how it used to be. Rick worked security years and years ago and saw all the gangs and fights daily. We were both there for the riot and we were afraid things were the same or worse. Turns out things have gotten MUCH better. Their is now a sheriff station on the property and deputies on duty at all times when the park is open. One of Rick's good friends is the head security manager and he assured us that the park was safe and that the kids would have a good time. He was right.

We decided that if the kids grow a little bit more we'll get season passes next year. They're just a tiny bit shorter then 48" and that is the requirement for most rides so we figure next year they'll both be tall enough. Well, we hope J is anyway.














Thursday, April 23, 2009

J is 7 and Bub is in "school"!


My baby girl is all grown up. Well, not really but it sure seems like it. She's looking older every day. She's so pickey about her clothes and hair. I can't imagine how she'll be in a few more years. She's doing really well as far as her arthritis goes. She still has some swelling in her right knee and wrist but she's not complaining. Her eyes are "quiet" which is something we haven't heard in a long time. She had a slight temp yesterday so I'm keeping an eye on her to see if she's gonna start flaring. Hopefully it's just a slight cold and nothing more. 1 month until we see Taylor Swift in San Diego!! Jordan is excited and truth be told so am I. And I think Rick is too :)


And Bub. He likes school has lots of friends and can't wait until he's in the "big" school with Jordan. He has his kindy physical about a month ago and got all his shots and didn't flinch. He siad if Jordan can have shots and not cry so can he. He has an appointment with the ENT tomorrow to see about his tubes. They've been in there now for about 2 years. They aren't actually in his ear drum just in the canal. If you look into his ear with a flashlight you can see these tiny little plastic blue things, the tubes. He's had a few infections since they've come out so we may be looking at another set :( At least this time I know it really is such a simple procedure. He was out of our sight for a total of 5-10 minutes last time. Nothing like J's surgery on her knee.

All of my tests came back fine so that means no one knows why I hurt and an so tired all the time yet can't sleep. I did have 1 test some back positive, Epstein Barr AKA the mono bug, but I don't have mono. My doc said it's a reactive positive and the fatigue and achyness could last for months. Great. Maybe that is all that's wrong. I do get to see a urologist next week to finally figure out why it hurts to pee. I may have Interstitial cystitis. I won't know for sure unless i have a scope done so it looks like I have another "procedure" to look forward to. YAY!!!

So that's what's new with us. Nothing exciting. Rick and I will be celebrating 19 years together this weekend. I can't believe it's already been that long. Yes, we have little breaks here and there but in the end we're where we belong.


Saturday, March 28, 2009

Holy cow it's almost April!

Where has the time gone?

We've been busy with moving, new schools, new doctors, new friends and new meds. Jordan will be 7 on Wednesday. No party this year since we're taking her, and Matty, to San Diego to see Taylor Swift. She has no idea so this will be a nice surprise :)

Matthew started pre K on Thursday. I figured since we moved and can afford to send him to a private school we should do it so he's ready to start kindy in August. He goes 2 days a week 8:30-12:30. It'll be good for him and me. I've been (not so much) stay at home mom for 7 years now and I don't know what to do with myself when I'm alone. I'm still trying to organize and clean up around here so I'm sure I'll adjust to having a few hours to myself.

This is a recent video of Jordan doing her methotrexate injection. She talks right thought it. I guess I'm not as gental as Rick but as you can see, she really doesn't mind this one.

video

And for anyone who is interested, our Arthritis Walk is on May 3 @ Magic Mountain. This is our second year walking and we hope to have more people join our team. Even though we started walking because Jordan has JRA we're also walking for others in our family. My cousin Tim was diagnosed with RA about 2 years ago. He just went on disability because he can no longer work. He takes several pills a day to help with the pain and inflammation along with an injection weekly. Rick's grandma, Joan AKA Granny, has OA. She had a total knee replacement in December 2007. This disease does not discriminate. It disables the young and old, rich or poor, male or female. It doesn't matter who you are. Arthritis affects 46 million people in the US alone and if the leading cause of disability. Chances are you know someone other then our family who lives with the pain of arthritis. Find a walk in your area and help find a cure.