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Old 04-15-2005, 07:49 AM   #1
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hrtofluv HB User
Checking in on all my FD family!

Just curious how everyone is doing lately.
Everyone post your updates here.
Have a blessed day!!!!
hrtofluv

 
Old 05-26-2005, 07:05 AM   #2
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hrtofluv HB User
Re: Checking in on all my FD family!

Would love to get some updates from everyone dealing with this disease.

 
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Old 05-27-2005, 09:31 AM   #3
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Re: Checking in on all my FD family!

Hi,
I really don't have any new news about my FD. I get a check up in the fall. My OBGYN thinks that me being on the depo shot is keeping the FD from growing as much as it probably would if I weren't on it, so I guess that's a good thing? Ive recently been placed on an antiinflammatory because I have enthesitis and it seems to be helping that dull pain in my head some, which I think is a little odd, since everyone says its the FD. Well, that's about it.

Hows everything with you?
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Hi Everyone

 
Old 05-27-2005, 10:02 AM   #4
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hrtofluv HB User
Re: Checking in on all my FD family!

Hey - I took the Depo Shot for a year (4 shots) - didn't have a period that whole year either. Wonder if that helped then - to think back I didn't have any problems pain-wise that I can remember.
I have an appt with a new ortho. onc. in Atlanta in June. Having lots of hip and elbow pain - been having to take quite a few hydrocodone which is sad for me. My prescription from a year ago has lasted this long, but now it's expired, so I'll have to get a renewal soon (which I hope I won't need for another year like this time).
Anyone else out there??

 
Old 05-30-2005, 07:23 AM   #5
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annemv HB User
Re: Checking in on all my FD family!

I seem to be doing the same in regards to FD. Just waiting around to see if my arm breaks . We just moved (which is why I havent been on the boards) and that was hard not using my arm. I havent had much pain or any problems though.
I am tending to my pituitary tumor at this time. I have a follow up on Wed. after all the new bloodwork. Hopefully I will know more then.
How are you hrtofluv ?
Anne

 
Old 05-31-2005, 06:41 AM   #6
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hrtofluv HB User
Re: Checking in on all my FD family!

Anne,
Glad to see you back. Hey - I've been waiting for my arm to break since 99 - hey it hasn't yet and that's with raising 2 kids (son was 2.5 at the time and daughter 6 months). My hubby would gently "remind" me not to use that arm, but that is hard to do when caring for a baby and a toddler. I mean, they fall down and get hurt, mom's instinct is to pick them up. So, although I rarely use it now, I did survive now for 5.5 years without a break. Lots of time with pain and swelling (probably micro-fractures), but I refuse to do surgery. They want to do a full elbow replacement. Going in Thurs. to get 4 more facet joint injections in my lumbar spine (rupture disc from a car wreck 20 months ago). Last time it kinda helped my hips too, so I'm hoping it will this time too.
And to let you know - driving and having the airbag go off - felt like I had broke my thumb on my "bad arm" side, but not a single problem. Makes me wonder now what it will take to break this arm. I supposedly have just a shell for the majority of my humerus. And I'm telling you looking at the xrays and mri - the whole bone is affected, but they are the most worried that my elbow would just shatter with any sort of lifting and here I've survived and impact without much problems.
Keep in touch anne and froggy!

 
Old 06-03-2005, 07:53 AM   #7
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Re: Checking in on all my FD family!

WAY off topic of FD, but you said keep in touch...I graduated from high school this past Wednesday! I'm so happy that I'm finally out of high school. It wasn't the best years for me with all these medical problems - migraines, headaches from FD, 2 surgeries, yearly sinus infections (which trigger my migraines), my parents going into Ch. 13 bankruptcy (more migraines from the stress of it!), allergic reactions to a medication, and then joint pain...I've recently been diagnosed as having chronic enthesitis in my joints and have been put on meds for it. But hey, I made it. It was funny, when I was getting my diploma and had to shake like 10 peoples hands my principal was like congrats you made it, but now what am I going to do with my time? It was funny. The actual ceremony was actually kind of boring, I graduated in a class of almost 400, so it took forever for them to call all of the names. Then after I got my diploma and was going back to my seat, my cap flew off...but luckily I caught it right after it flew off, so no one really noticed. I wasn't smart enough to think to pin it down, but oh well, it will be one of those things that I will remember forever! So that's pretty exciting.
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Old 06-03-2005, 07:59 AM   #8
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Re: Checking in on all my FD family!

Froggy,
What an exciting time for you!!! I also graduated in a class of 365 - so I remember the wait and the LONG ceremony. Pretty cool - we are actually planning our 20 year reunion this year - yep it's been that long!
I can truly understand - sometimes the old adage of "When it rains, it pours!" It always seems like feast or famine here - either all is well or all H breaks loose. And yes, the stress is NOT good for anyone of us. So wishing you the best summers!!! So, what are your plans? College? Work? Or just plain old fun!

 
Old 06-03-2005, 08:24 AM   #9
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Re: Checking in on all my FD family!

Well, I'm going to Ursinus College in the fall, it's about 45 minutes north of Phila******a. I really don't want to get a "real" job this summer. Someone moved in across the street a few days ago and I'll probably be babysitting their kids - a 3 yr old, 2yr old, and 2 month old. Eh, and then there will probably be tons and tons of chaos! My sister in law is pregnant and a c-section is scheduled for July 15. My SIL has bone cancer, it seems like it's pretty bad and has most recently spread to her pelvis. She can't take any meds because of the baby, and went off chemo a long time ago when she started loosing her hair because it was freaking my niece out (she'll be 4 in july). Yesterday, I think, she was given a year to live by her cancer doc, but her baby doc doesn't think she will make it through the pregnancy. She has a whole array of medical problems in addition to the cancer, she is very very obese, has uncontrolled diabetes, has siezures, needs quadruple bypass surgery, emphesema, and some other stuff that I can't remember. She has also recently been given an oxygen tank that she has to use at all times - so that's not a good thing I'm assuming. The thing that amazes me is that through all of this, the baby is still fine! The docs were actually planning on delivering the baby at 7 months, but because the baby is doing so well they are going to try to have my SIL carry until full term. The baby's name is either going to be Jessica Rose or Jessica Rosealeah (sounded rose-a-lee-a). So both of her kids are named after me. My first name is Jessica, so that's pretty obvious. Her 3 year old is Daniella Victoria - my middle name is Daniella, and my mom was going to name me Victoria but my dad put Jessica on the birth certificate. So yea, we'll be going through custody stuff this summer, because my SIL wants my mom to have custody of the kids when she passes away, but my brother is still around and they're still married - I think...but no one wants him to have custody. Right now, he's in jail, but he's a major druggie. When Daniella was a baby, he would smoke pot with her in his lap. Not a good thing! So if my SIL does pass away during the c-section, I'll be watching the kids because my parents have to work. It's chaos I tell you, Chaos! So yea, that's my plan for the summer. But I'll definately be going to the beach and all of that other good stuff!
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Old 06-03-2005, 09:02 AM   #10
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Re: Checking in on all my FD family!

Oh yes, Jessica, have fun - go to the beach and enjoy your youth. I know it seems like some major turmoil is going on, but you are still a teenager and don't need to be turned into an adult overnight.
It sounds like you have a love for kids - wanting to babysit and then take care of your nieces. But one day - you'll have your own too. Glad to hear that your SIL is getting things worked out for your parents to get custody of the kids. Maybe your brother will turn things around if he loses his wife. And you never know, once your SIL delivers the baby - they can start chemo and help fight the cancer.
I have a friend who was diagnosed with leukemia during her pregnancy. Matter of fact, she probably wouldn't have been diagnosed until it was much more advanced had she not having to give blood during her regular pregnancy. Even though it was agressive (wasn't there at the start of her pregnancy) and advanced (it had spread to her skin). When she delivered they started aggressive chemo and she is now 5 years cancer-free. So remember there is ALWAYS hope.

 
Old 06-04-2005, 08:44 AM   #11
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Re: Checking in on all my FD family!

Thanks for putting things in perspective. It really does seem like major turmoil! Honestly, I don't know about my brother getting his act together when his wife dies, we've had lots of deaths in our family, and he always gets deeper into drugs each time. And God he's good! His wife took him to see a psychologist hoping they would put him in a detox program, and the psychologist ended up telling my SIL that she has a problem (not with drugs), and my brother doesnt, that if he wanted to stop, he would. When he was younger he researched everything that could make a drug test come up showing drugs in your body without you taking any (like poppy seeds) and he would have an excuse for all of them. My parents were told a long time ago when they were trying to get him into a detox program when he was like 17, that he's at the fork in the road, if he wanted to quit he would and take one way, but if he doesn't he will keep doing drugs and take the other way. And he took the other way. I think this is kind of funny in a way, but he's currently in jail because he was pulled over for a DUI in Baltimore, which is a few hours in my house, because he was going to cheat on his wife...again. Serves him right I suppose. We've been looking online at options on getting custody of the kids...adoption, guardianship, legal custody...and my mom and my SIL decided to go with adoption because it's the only one where my brother can't come back down the road and say I want my kids, ya know? And he's to the point where he has tried essentially kidnapping Daniella from my SIL's house. He banged my SIL's head against the wall and gave her a grandmal seizure. Luckily the neighbor broke the whole thing up. So we are going to start the process of finding a lawyer to help us do the process of adoption because we would have to prove my brother as being not suitable (or whatever the word is) for being a father because he would never give the kids up willingly. We figured that since he's currently in jail, it wouldn't be terribly hard to do that. It's sad, it's almost like we are conspiring against my brother. And my mom will give them such a better life than my brother, at least they would go to college with my mom in charge, we'd be lucky if my brother even enrolled the kids in school to begin with!

I think I'll be better with everything once everything is settled and I know what is going on and what is going to happen, you know? I'm one of those who thrive on stability, and I don't think I've had that since the beginning of the year. With my mom finding out how much they were in debt, my dad did all of the bills, and then deciding on bankruptcy. And actually, we didn't know until about February that my niece even existed, until my SIL called when my brother was in jail a different time to tell us, you see, my brother didn't let either family know that my niece even existed. He decided that my niece didn't need anyone but them, and he doesn't want anything to do with my parents. And then we find out my SIL's prognosis and now were here! I just want to know exactly what is going to happen, you know?

Oh, and I do love kids! Actually when my mom has custody of the kids, she is changing her life insurance to where if she happens to pass away before the kids are adults they go to me. And she has $300K going to me, so I'll definately be financially secure to finish raising them. I'm just crossing my fingers that nothing happens though! haha. Actually I wanted to be a pediatrician at one point in time, until I realized that I would go crazy if all parents were like my mom at appointments, and I think I could get tired of seeing little kid after little kid. But oh well.

And I promise that I will still enjoy my youth. Actually I have to work on planning my grad party with my mom since it's in a few weeks. We invited over 100 people so this should be interesting. haha. And I'll definately be going to the beach and I'm getting a season pass to the pool on the AFB about 15 minutes from my house. I'll especially enjoy my summer since next summer I'm going to have surgery on my other knee, my doc told me to put it off until my knee is really bothering me and it's a good time in my life it do it, just not wait too long. So I figure I'll do it right after I'm done with school next year since I'll be in a full leg cast for 6 weeks and an immobilizer for another few weeks and gotta learn how to walk again. Except my mom is planning on getting a pool next summer, so I figure I'll be in it with my water proof cast cover thing on a big floaty! Imagine the tan line I'll get! HaHa!

Well, thanks again for putting things in perspective, I am still a kid! I'm just going to be a kid with a few big responsibilities for the summer so my mom can work a little extra to pay for my college.
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