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Post by loshyra on Mar 17, 2008 14:53:36 GMT -5
So JUST got home. Her appt was at 9 this morning. Apparently her pressure is UP from the last appointment. Her right eye was at 25 (up from 19) and her left is at 20 (up from 17)
The eye dr is hopeful that with the eye drops, we will get the pressure under control by May. If not, we are going to have to change to a high dose of eye drops, as well as changing the immune suppresent that she is on....which means going through the hoping and prayers that this works as well for her joints....
I called her dad... all he said was "oh that is tooo bad" WTF is up with that?!?!?
And to top all that off, I have been having serious problems from the procedure that I had done in Feb. To a point that Mike almost took me into the ER 4 times this weekend, good thing I know what to say to stop him. Yes, I have called the dr. He is off tomorrow and the next week, so lets hope he gets back to me tonight..
I am just SOOOOOO Sick of this, I am sick of me being sick, and so sick of my daughter being soooo sick..
any prayers or thoughts that you can pass on to my 9 year old is GREATLY appreciated...
BTW....forgot to mention that the drs aren't sure if the new baby may or may NOT have the same thing as my 9 yr old.. There is really no way of knowing...
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Post by rocko on Mar 17, 2008 15:39:59 GMT -5
Is there any reason (symptoms) why you would think the baby would also have it or is it just fear?
I will pray for all of you.
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Post by RO on Mar 17, 2008 15:46:42 GMT -5
You are all in my prayers...
Hope the doc can see you today.
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Post by loshyra on Mar 17, 2008 19:09:43 GMT -5
My 7th month old is starting to act like my 9 yr old did when she was diagnosed. The dr's have told me that there is a 50% chance that she will have RA as well. And since Mike and I both have people in our families that have RA, that makes it even a bigger chance... I wasn't able to get in to see my dr today, he is off the rest of this week after today... BUT we did talk. He wants me to come in for an appt, which I already scheduled. He went ahead and called in some RX for the issues that I have right now. BUT I am just done, I totally lost it with Mike today.... I mean, YELLING at the top of our lungs at each other in front of all the neighbors... I had just about had it with everyone today...
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Post by wizer on Mar 17, 2008 19:13:23 GMT -5
Even if your month old gets RA that doesn't mean the uveitis and the secondary glaucoma will necessarily occur along with it. Lots of people have RA and go their entire lives without the ocular side effects.
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Post by loshyra on Mar 17, 2008 19:41:59 GMT -5
I understand that Steve, however, I am told by both my 9 yr old dr's that if one has the RA and Uvitis and Iritis that either of my other girls may be diagnosed with both. I am praying and HOPING that neither of my other kids get diagnosed with RA. It is hard enough for me to have one with it, let alone 2 or even 3.. argh! One bright point in my life is crushy, she is such a good friend. And my other friend, who happens to be a dr, he answers what questions he can without over stepping the lines.
Love you CRUSH and Clark!!!
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Post by loshyra on Mar 17, 2008 19:51:47 GMT -5
Just to clarify things, My 9 year old was diagnosed with RA at 18 months. She was not diagnosed with Uvitis or Iritis until, I believe, 4 years old. I know how this disease and everything that goes with it is diagnosed, and what happens with each test. I even know how to read the dr notes about it! Obviously I have done research and am GREAT friends with a lot of dr's that know about this....
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Post by sheyd on Mar 17, 2008 20:33:25 GMT -5
I am hoping for you too! Sometimes that is the best we can do!
Shey
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Post by jules on Mar 18, 2008 10:24:21 GMT -5
Wishing good health for you and your daughter.
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Post by loshyra on Mar 18, 2008 17:23:40 GMT -5
thanks guys I appreciate it. I am still having a blah time of it. I don't want to be at work at all right now... let alone having to cover for other people while they are gone. And dealing with ONE person here is headache from hell.... She is such a bitch, no one likes dealing with her. And I ended up in an argument with her because I had the nerve to tell her that I had forwarded her the instructions that she asked for 3 times in the past....
ARGH!!!
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Post by crushy on Mar 21, 2008 1:17:13 GMT -5
I understand that Steve, however, I am told by both my 9 yr old dr's that if one has the RA and Uvitis and Iritis that either of my other girls may be diagnosed with both. I am praying and HOPING that neither of my other kids get diagnosed with RA. It is hard enough for me to have one with it, let alone 2 or even 3.. argh! One bright point in my life is crushy, she is such a good friend. And my other friend, who happens to be a dr, he answers what questions he can without over stepping the lines. Love you CRUSH and Clark!!! Right back at ya, girl! You're the best friend I could ask for. You know I'll pray for you. I had no idea Mike had that on his side of the family too. One of the hard things you face is that adorable little 9 yr old won't complain, so it's hard to gage how she's feeling. It sure would help if her freaking dad would remember her eye drops and actually give them to her. Of course, this is the guy you have dead to rights for not taking her to her Drs when needed when he had them for a time. All you can do is your best. My sweet Grandma used to say, 'You are only as happy as your unhappiest child'. She was so right. I know we talked about how it scares you when she runs and jumps, but at the same time, you are grateful she does. Remind me, how old was she when she was diagnosed? What is LoLo doing that is similar to what her big sis did before she was diagnosed? You're a great mom, you help with the charities regarding RA, you take your daughter to the best Drs. Try to take some solace in that during such a scary ordeal. Love ya!
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Post by loshyra on Mar 21, 2008 8:34:58 GMT -5
Lo-Lo is starting to do the only dad or mom can hold me. If you touch me on certain parts, like her ankle or wrist, she cries. She goes in for a well care visit on Monday, I told Mike that I want the dr to look into doing what tests that they can to see if she has a the "genes". It is not a real "yes" or "no" that she will have it. I just need it done for my peace of mind.
Syder was 18 months when she was first diagnosed. How I knew something was wrong? Well she stopped walking. They told us it was a sprained ankle. But when she stopped picking things up, I knew something was wrong. I cried for 2 weeks straight when they told me what she had. I blame myself for it.
I am soooo tired. Both of my older girls are sleeping at their aunts house last night, and I FORGOT to take her eye drops. What kind of mom forgets something so important?
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Post by crushy on Mar 21, 2008 8:55:55 GMT -5
I am soooo tired. Both of my older girls are sleeping at their aunts house last night, and I FORGOT to take her eye drops. Is there any way you can have another bottle filled and keep one at B's for when she's there? Her Dr is great, knows the situation w/ B and it's not a narcotic, so why not check? It's worth a try.
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Post by sheyd on Mar 21, 2008 9:28:39 GMT -5
Losh - mom or not, you are STILL human. Mistakes happen, we forget things... I forgot MY CHILD at daycare once! I thought I would DIE. For some reason, in my head, she was with my mom like the other two were... Even though I had visited her at lunchtime that day, at the daycare. It was like my brain fell out of my head or something. Some mistakes are worse than others, but mistakes will happen. I think having drops at each place she will be is a great idea - plus, if yours should happen to get lost or destroyed (I have dogs that chew) you will know where to get replacements if you can't get them at the store. You are doing the best you can- and this is NOT your fault!!!
Shey
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Post by crushy on Mar 21, 2008 21:02:35 GMT -5
Losh ~ Do you remember the day I dropped my youngest off at daycare, saw him go in the door (home care), drove off. Get a cell phone call with the poor kid on the phone...'Mom, Kae is on a cruise and Landon (her older son) is letting me use his cell phone. I knew she was on a freaking cruise, but I left him there anyway. Broke my heart when he said after I told him I'd turn right around and be there to get him...he prayed, 'Please God, don't let my mom forget me with her brain damage.' I asked him if we could call it a 'brain injury' from then on, but after I dropped him off, I cried all the way to work. It still breaks my heart. Mom's just have so many things on their minds at once, it's amazing we do what we do do. You Rock and technically, you have 4 girls because you keep track of me when I'm stressed too.
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