Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Ashlee, There actually is another Hunter on this list, and she's a girl!! So you could have used the name too! lol. My Hunter is actually doing quite well and has been for about 8 months. He's on 1 ml of mtx. weekly injection. We were able to complete the pred taper in early Sept. or so. He was on that stuff for one year. This is the healthiest he's been since he was 3. Keep the faith. Stacia and Hunter 8 systemic, iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 That's great that he's doing well. It's also nice to hear that he was able to quit the steroids. I was beginning to get worried since most of the other posts the parents have said that their children hadn't been able to come off the steroids. Madison just started on steroids last week and I sure hope she's not on them very long. Also I was just wondering why do you have to do injections instead of by mouth? Madison only takes .2 ml of mtx so we mix hers with her Ibuprofen once a week. Since he takes more is that why he has to do injections? Just wondering..I really don't want to have to inject Madison (as I know none of the other parents here want to either) but I know I will do anything to make her feel better too! Thanks and I hope things continue to go well. Ashlee and Madison, 2, poly Re: Introduction Ashlee, There actually is another Hunter on this list, and she's a girl!! So you could have used the name too! lol. My Hunter is actually doing quite well and has been for about 8 months. He's on 1 ml of mtx. weekly injection. We were able to complete the pred taper in early Sept. or so. He was on that stuff for one year. This is the healthiest he's been since he was 3. Keep the faith. Stacia and Hunter 8 systemic, iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 , You are going to a good place and have access to a ped rheumy , so you are ahead of the eight ball. Ask any question you have, for there is lots of experience here. We have all been there and done that before. We also know how you are feeling right now. My one bit of advice would be to keep a journal of medications, symptoms, etc. Ours is five years old now and a bit battered, but I still refer to it. I write questions for the doctor in it, and then write the answers down right underneath. Also, remember you are child's strongest advocate--so fight for your child and don't be afraid of doctors. Go with your instinct. Good luck. (n, 15, systemic) Introduction > > > > Hello. > > My name's . I've been reading posts for a couple of weeks > now. We just got an official diagnosis on Thursday so I figured I'd > introduce myself. I have 3 kids. My oldest, , is the one who was > just diagnosed as Poly JRA. He started having trouble with his > joints swelling over the summer. It went away after several weeks so > we thought it might just be viral. Then just after his birthday in > October he started having trouble again, now here we are.... My > other two are 7 & 3, a boy and a girl respectively. We live in > Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. > > > > Mom to age 10, Poly JRA > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 , from what I've heard your going to a great clinic, and I just want you to know this is one GREAT group of people here who will offer you as mch support and information as they possibly can. I am know as a Rusty O'Limbs here and I an a vet of jra live for, wow next July will be 37 years.. was ix at 13..ooo now I starting to feel old.... But anyway, enough about me, my prayers and many good thoughts for young and the whole family! Rusty O'Limbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 Welcome, . This site has helped my family out so much. In the beginning of the disease we felt so alone. Please don't hesitate to ask questions - there are some really experienced family members on this site. Good luck - Sandi Ken HUnter (6 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Thanks ! I did have the forethought to start writing down 's symptoms, test results and any instructions from the Dr. in my palm pilot when all this started. I'm guessing I'm going to have to archive it or switch to a paper notebook eventually.... , mom to 10 (poly) > , You are going to a good place and have access to a ped rheumy , > so you are ahead of the eight ball. Ask any question you have, for there is > lots of experience here. We have all been there and done that before. We > also know how you are feeling right now. My one bit of advice would be to > keep a journal of medications, symptoms, etc. Ours is five years old now > and a bit battered, but I still refer to it. I write questions for the > doctor in it, and then write the answers down right underneath. Also, > remember you are child's strongest advocate--so fight for your child and > don't be afraid of doctors. Go with your instinct. Good luck. > (n, 15, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Thanks Rusty! We keep hearing how great Mayo is, and so far we haven't been dissapointed. Of course, we don't have anything to compare it too either.... , mom to 10 (poly) > > , from what I've heard your going to a great clinic, and I just > want you to know this is one GREAT group of people here who will offer > you as mch support and information as they possibly can. > I am know as a Rusty O'Limbs here and I an a vet of jra live for, wow > next July will be 37 years.. was ix at 13..ooo now I starting to feel > old.... > But anyway, enough about me, my prayers and many good thoughts for young > and the whole family! > > Rusty O'Limbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Hello . Welcome to this group, I am glad you have found it. You are one of several families here from Minnesota. I think between all of us we see the few pediatric rheumatologists in the state. I have heard that Mayo is a great place to be. We see Dr. Akin at Gillette Children's Hospital in St. . We of course, our sorry to hear of another child with JRA, but this is a great site. Please ask any questions. There is always someone here who can help! Alia and Caroline, age 2, poly and uveitis Introduction Hello. My name's . I've been reading posts for a couple of weeks now. We just got an official diagnosis on Thursday so I figured I'd introduce myself. I have 3 kids. My oldest, , is the one who was just diagnosed as Poly JRA. He started having trouble with his joints swelling over the summer. It went away after several weeks so we thought it might just be viral. Then just after his birthday in October he started having trouble again, now here we are.... My other two are 7 & 3, a boy and a girl respectively. We live in Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. Mom to age 10, Poly JRA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 , Welcome! We too are residents of Minnesota. My daughter Allie was diagnosed at age 6 (2 years now), and is also poly. It is not a fun disease, but you will find this list very helpful with any type of question. No question is a dumb question. As a personal suggestion come to the local JRA meeting. I believe it is January 8th at the Courage Center in Golden Valley. You will find this small group to be extremely supportive and experienced with this disease. Make your family vacation a trip to the National JRA meeting in Providence Rhode Island. Our family made it's first appearance at the National Convention last year in San Diego, and I don't believe one member (4 girls total) would miss this event. I know that one sounds like a lot, but you will discover how much it will help your child and your family in this new venture. This list is a wonderful resource for all of your questions. Don't wait for the next doctor visit to ask. You can be blessed knowing that there are great drugs that can really help our children live normal lives! and Allie (8 poly) ________________________________ From: [mailto:earthmama2k@...] Sent: Sunday, December 05, 2004 5:14 PM Subject: Introduction Hello. My name's . I've been reading posts for a couple of weeks now. We just got an official diagnosis on Thursday so I figured I'd introduce myself. I have 3 kids. My oldest, , is the one who was just diagnosed as Poly JRA. He started having trouble with his joints swelling over the summer. It went away after several weeks so we thought it might just be viral. Then just after his birthday in October he started having trouble again, now here we are.... My other two are 7 & 3, a boy and a girl respectively. We live in Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. Mom to age 10, Poly JRA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Rusty, We've gotten a little bit of snow but not enough for sledding yet. It's actually raining today - ick! Where in MI are you from? My Husband and I actually grew up in Southwestern MI and most of our family is still there.... , mom to 10 (poly) > , your welcome and hope young finds that medicated remission > I hear so much about. > Have ya'll gotten much snow up there is Minn. My family in MI say they > have gotten around 12 inches since Thanksgiving eve. Even though I moved > down here to KY, I still love that beautiful blanket of white first snow. > and flying down hill on a 'run-a-way sled' or piece of cardboard Wahoooo! > > Hey everyone, lets go sleding!!!!! > H,P,Lt,A! > Rusty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Thanks , I actually saw that info on the Conference in Rhode Island for the first time this morning and will definitely consider it. Finances are a little tight but I'll see if we can swing it 'cause I'd sure like to check it out. Is there a web site for the local JRA group? All I've been able to find is the info for the local Arthritis Foundation group in St. .... Thanks again, , mom to 10 (poly) > , > > Welcome! We too are residents of Minnesota. My daughter Allie was > diagnosed at age 6 (2 years now), and is also poly. It is not a fun > disease, but you will find this list very helpful with any type of > question. No question is a dumb question. As a personal suggestion > come to the local JRA meeting. I believe it is January 8th at the > Courage Center in Golden Valley. You will find this small group to be > extremely supportive and experienced with this disease. Make your > family vacation a trip to the National JRA meeting in Providence Rhode > Island. Our family made it's first appearance at the National > Convention last year in San Diego, and I don't believe one member (4 > girls total) would miss this event. I know that one sounds like a lot, > but you will discover how much it will help your child and your family > in this new venture. > > This list is a wonderful resource for all of your questions. Don't wait > for the next doctor visit to ask. You can be blessed knowing that there > are great drugs that can really help our children live normal lives! > > and Allie (8 poly) > > > > ________________________________ > > From: [mailto:earthmama2k@y...] > Sent: Sunday, December 05, 2004 5:14 PM > > Subject: Introduction > > > > > Hello. > > My name's . I've been reading posts for a couple of weeks > now. We just got an official diagnosis on Thursday so I figured I'd > introduce myself. I have 3 kids. My oldest, , is the one who was > just diagnosed as Poly JRA. He started having trouble with his > joints swelling over the summer. It went away after several weeks so > we thought it might just be viral. Then just after his birthday in > October he started having trouble again, now here we are.... My > other two are 7 & 3, a boy and a girl respectively. We live in > Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. > > > > Mom to age 10, Poly JRA > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 , Actually it is all under the same umbrella. We don't have a separate web site. I found the support group to be extremely helpful. I went to my first meeting and cried thru the whole thing because we had just found out a few days earlier. But now, I am much better...I only cry at the national meetings. Actually, my husband went to the national meeting, was thrilled with the information we received. If for no other reason than to know that what we did and were doing for our daughter was the BEST!. Our decisions with regards to our daughters health were just reaffirmed! Anyway, welcome! Ray 651-340-4384 Direct line 952-835-2724 @... <mailto:@blueribbon travel.com> ________________________________ From: [mailto:earthmama2k@...] Sent: Tuesday, December 07, 2004 1:38 PM Subject: Re: Introduction Thanks , I actually saw that info on the Conference in Rhode Island for the first time this morning and will definitely consider it. Finances are a little tight but I'll see if we can swing it 'cause I'd sure like to check it out. Is there a web site for the local JRA group? All I've been able to find is the info for the local Arthritis Foundation group in St. .... Thanks again, , mom to 10 (poly) > , > > Welcome! We too are residents of Minnesota. My daughter Allie was > diagnosed at age 6 (2 years now), and is also poly. It is not a fun > disease, but you will find this list very helpful with any type of > question. No question is a dumb question. As a personal suggestion > come to the local JRA meeting. I believe it is January 8th at the > Courage Center in Golden Valley. You will find this small group to be > extremely supportive and experienced with this disease. Make your > family vacation a trip to the National JRA meeting in Providence Rhode > Island. Our family made it's first appearance at the National > Convention last year in San Diego, and I don't believe one member (4 > girls total) would miss this event. I know that one sounds like a lot, > but you will discover how much it will help your child and your family > in this new venture. > > This list is a wonderful resource for all of your questions. Don't wait > for the next doctor visit to ask. You can be blessed knowing that there > are great drugs that can really help our children live normal lives! > > and Allie (8 poly) > > > > ________________________________ > > From: [mailto:earthmama2k@y...] > Sent: Sunday, December 05, 2004 5:14 PM > > Subject: Introduction > > > > > Hello. > > My name's . I've been reading posts for a couple of weeks > now. We just got an official diagnosis on Thursday so I figured I'd > introduce myself. I have 3 kids. My oldest, , is the one who was > just diagnosed as Poly JRA. He started having trouble with his > joints swelling over the summer. It went away after several weeks so > we thought it might just be viral. Then just after his birthday in > October he started having trouble again, now here we are.... My > other two are 7 & 3, a boy and a girl respectively. We live in > Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. > > > > Mom to age 10, Poly JRA > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 - The local Arthritis Chapter does offer scholarships that help partially pay for it. We are also planning a fund raiser for Caroline to help fund our trip next year. Once I have finalized some ideas, I will let you know them. There is only the one Foundation in St. . They are a great group of people and VERY willing to help out with information. I called last week for information on Remicade and I have already received it! Good luck Alia and Caroline, age 2, poly and uveitis Introduction > > > > > Hello. > > My name's . I've been reading posts for a couple of weeks > now. We just got an official diagnosis on Thursday so I figured I'd > introduce myself. I have 3 kids. My oldest, , is the one who was > just diagnosed as Poly JRA. He started having trouble with his > joints swelling over the summer. It went away after several weeks so > we thought it might just be viral. Then just after his birthday in > October he started having trouble again, now here we are.... My > other two are 7 & 3, a boy and a girl respectively. We live in > Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. > > > > Mom to age 10, Poly JRA > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 , your welcome and hope young finds that medicated remission I hear so much about. Have ya'll gotten much snow up there is Minn. My family in MI say they have gotten around 12 inches since Thanksgiving eve. Even though I moved down here to KY, I still love that beautiful blanket of white first snow. and flying down hill on a 'run-a-way sled' or piece of cardboard Wahoooo! Hey everyone, lets go sleding!!!!! H,P,Lt,A! Rusty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 I gew up in Flint MI and surrounding area! Now known as 'Oil Can City' because its like a discarded old emtpy oil can! Rusty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Contact the Arthritis Foundation, they have scholarships available to send you and your family to the conference. We live in Virginia and the AF sent us to San Diego, CA this past July for the conference (Plane Tickets and Hotel Stay all included). It was a WONDERFUL experience and we learned sooooo much and met lots of people! Introduction > > > > > Hello. > > My name's . I've been reading posts for a couple of weeks > now. We just got an official diagnosis on Thursday so I figured I'd > introduce myself. I have 3 kids. My oldest, , is the one who was > just diagnosed as Poly JRA. He started having trouble with his > joints swelling over the summer. It went away after several weeks so > we thought it might just be viral. Then just after his birthday in > October he started having trouble again, now here we are.... My > other two are 7 & 3, a boy and a girl respectively. We live in > Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. > > > > Mom to age 10, Poly JRA > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Rusty, Ah yes, I know of Flint. Can't say that I've ever been there, though I've been close. We have friends that live in Traverse City. As for me I grew up in St. ph and my dh grew up in Watervliet. , mom to 10 (poly) > > I gew up in Flint MI and surrounding area! > Now known as 'Oil Can City' because its like a discarded old emtpy oil > can! > > Rusty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 I think I remember the lady at the AF saying that they hadn't been able to help any families at all for the past few years so this year they could. I'm not sure but I think they sent a few families from Virginia. We got a scholarship for $1,500 (I think) and it covered everything except of course food and whatever we wanted to buy. Introduction > > > > > Hello. > > My name's . I've been reading posts for a couple of weeks > now. We just got an official diagnosis on Thursday so I figured I'd > introduce myself. I have 3 kids. My oldest, , is the one who was > just diagnosed as Poly JRA. He started having trouble with his > joints swelling over the summer. It went away after several weeks so > we thought it might just be viral. Then just after his birthday in > October he started having trouble again, now here we are.... My > other two are 7 & 3, a boy and a girl respectively. We live in > Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. > > > > Mom to age 10, Poly JRA > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 That is fantastic. And I guess it didn't really matter the cost, we made it work in our family budget. We had a family scholarship of $600.00. They was the help we received and it really made our decision easier to go to the conference rather than not. For this next year we are flying ourselves. ( my husband is a pilot and we now have a plane that all of us can fit in.) We will see how well that goes, because I don't know how we will ever fit any luggage in the plane...but oh well, we will look great in the same clothes for 5 days. HA!! I am just glad we all get some type of assistance to go, because it only helps our kids in the long run! and Allie ( 8 poly) ________________________________ From: Ashlee Blair [mailto:ablair@...] Sent: Wednesday, December 08, 2004 9:09 AM Subject: RE: Introduction I think I remember the lady at the AF saying that they hadn't been able to help any families at all for the past few years so this year they could. I'm not sure but I think they sent a few families from Virginia. We got a scholarship for $1,500 (I think) and it covered everything except of course food and whatever we wanted to buy. Introduction > > > > > Hello. > > My name's . I've been reading posts for a couple of weeks > now. We just got an official diagnosis on Thursday so I figured I'd > introduce myself. I have 3 kids. My oldest, , is the one who was > just diagnosed as Poly JRA. He started having trouble with his > joints swelling over the summer. It went away after several weeks so > we thought it might just be viral. Then just after his birthday in > October he started having trouble again, now here we are.... My > other two are 7 & 3, a boy and a girl respectively. We live in > Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. > > > > Mom to age 10, Poly JRA > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 I am in maryland. How did you get the scholarship to go. Exactly how do you contact them?? and Hailey-2-poly >From: " Ashlee Blair " <ablair@...> >Reply- >< > >Subject: RE: Introduction >Date: Wed, 8 Dec 2004 09:06:14 -0500 > >Contact the Arthritis Foundation, they have scholarships available to send >you and your family to the conference. We live in Virginia and the AF sent >us to San Diego, CA this past July for the conference (Plane Tickets and >Hotel Stay all included). It was a WONDERFUL experience and we learned >sooooo much and met lots of people! > > > > Introduction > > > > > > > > > > Hello. > > > > My name's . I've been reading posts for a couple of weeks > > now. We just got an official diagnosis on Thursday so I figured >I'd > > introduce myself. I have 3 kids. My oldest, , is the one who >was > > just diagnosed as Poly JRA. He started having trouble with his > > joints swelling over the summer. It went away after several weeks >so > > we thought it might just be viral. Then just after his birthday in > > October he started having trouble again, now here we are.... My > > other two are 7 & 3, a boy and a girl respectively. We live in > > Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. > > > > > > > > Mom to age 10, Poly JRA > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Honestly I e-mailed the contact person listed for the Arthritis Walk in my area with a few questions and introduced myself and Madison. They contacted me and asked if I was ok with Madison being the Hero for the walk and of course I was. :-) Then the lady I talked to worked everything out. I did have to fill out an application of a few pages but it was no big deal. Just contact them and ask them about the scholarship to go to the AJAO Conference. It's July 28-31 this year in Rhode Island. Introduction > > > > > > > > > > Hello. > > > > My name's . I've been reading posts for a couple of weeks > > now. We just got an official diagnosis on Thursday so I figured >I'd > > introduce myself. I have 3 kids. My oldest, , is the one who >was > > just diagnosed as Poly JRA. He started having trouble with his > > joints swelling over the summer. It went away after several weeks >so > > we thought it might just be viral. Then just after his birthday in > > October he started having trouble again, now here we are.... My > > other two are 7 & 3, a boy and a girl respectively. We live in > > Minnesota and go to a Pediatric Rheumy at Mayo Clinic in Rochester. > > > > > > > > Mom to age 10, Poly JRA > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 , If you are in Montgomery or Prince s counties, you would contact the Metropolitan Washington Chapter at 202-537-6800. If you live anywhere else in land you would go thru the land Chapter. The telephone number is 410-654-6570. Liz RE: Introduction I am in maryland. How did you get the scholarship to go. Exactly how do you contact them?? and Hailey-2-poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2004 Report Share Posted December 18, 2004 Dear , Welcome to the group. I have an almost 16 year old daughter, n, with systemic. We are in our sixth year with the disease. This last year n developed chest pain like your daughter. No one has been able to diagnose anything, and I have come to the conclusion that it is just another weird symptom of the disease. n has had skin problems off and on thru out the disease. She can get pretty bad eczema, which worsens in winter. What we have done this year is started to go to a tanning salon. She was prescribed uv treatment one year by the dermatologist, and this is lots more convenient. She goes once or twice a week, and no more skin problems. I hope your daughter gets relief soon from the rheumy. Fight for your daughter and make sure the doctor gives her something to try to stop the disease progression. You may have to play around with the medication, but most kids find a cocktail that works. Although, we are having a few problems with n's drug cocktail, so I hope we get things adjusted next week. (n, 16 in 30 days, systemic) Introduction > > > > Hi, > My name is and am the mother of an 18 year old daughter, > Krystal, with systemic JRA. She had problems noticeably beginning > at 4 and diagnosed at 8. It was actually her eye doctor that set > the ball rolling. Krystal had lost nearly all of her vision due to > eye inflammation that can be a precursor to jra, which it was in her > case. In addition, she lost 75% of her hearing during this time > which could or couldn't be related--they couldn't tell us that. The > eye dr wanted her to see a specialist due to the amount of > inflammation in her eyes, and they expected she wouldn't get her > vision back due to the severity which most usually causes alot of > scar tissue. Luckily, Krystal responded well to treatment, regaining > all of her vision back with absolutely no scar tissue during a year > of treatment. Her hearing came back fully with the insertion of > tubes for 18 months. > > She has been treated with celebrex on and off on an as needed > basis. Unfortunately, we've had our arguments with our previous > family physicians as they wanted to treat her in office rather than > for her to continue to see the rhuemetologist and other > specialists. We changed family physicians, with the last one > skipping town, leaving his patients hanging and taking medical > records and all. So now we have a new one that I like quite well so > far. She readily said that Krystal needs to have specialists and > had no problem sending out the referrals and setting Krystal up with > a new rhuemetologist--our old one moved. The new family dr firmly > believes that some things need to be treated by specialists as that > is their primary speciality and so are far more up to date on the > disease and treatments. The family physician who skipped town was a > believer that everything could be treated or cured by chiropractic > treatment so wouldn't give a referral to the rhuemetologist. He did > refer us to a cardiologist this last spring due to extreme chest > pain. Everything was fine with her heart thankfully. > > Krystal, currently, is in a very active phase of jra. She does hold > down a cashier job with a car wash, previously working at KFC which > was too physical for her during this flare up. We are waiting > anxiously for her appointment with the rhuemetologist on 12/27 as we > hope to get scripts for bars for the toilet and tub, as well as a > raised toilet seat. She isn't capable, at this point, of doing > minor things like unlocking manual car doors from the inside, taking > lids off bottles of water, needs help getting up off furniture, > etc. Our insurance company said they would cover things like a lift > chair providing the rhuemetologist writes a script for it. > > Until she sees the rhuemetologist, the family dr is treating her > pain only. She doesn't want to interfer with the inflammation at > this point, plus Krystal has bipolar depression and most of the meds > that the dr is aware of cannot be taken with the prozac and > lithium. In the last 2 months, Krystal has been on loritab, > duraset, and now ultraset for pain. Prior to that, Krystal refused > to acknowledge that she was having a flare up and getting worse, > taking over the counter stuff as if it were candy and getting no > relief. Her system quickly gets used to it which is the reason for > rotating the pain meds at this time. We are also treating pain with > heating pads in addition to the meds. > > We were afraid that Krystal would lose her scholarship as she had > attendance problems due to not being able to get out of cars on some > days, incapable of taking notes and writing, etc. She just found > out this week that she did pass all her classes with A's and B's so > her scholarship is safe for the next semester. She is in the > process of putting herself on Special Needs program for both the jra > and the bipolar. This allows her to take laptops to class as she > can type a little longer than write, plus they suggested a voice > activated system, take more online classes, have people take her > notes for her, etc. Plus the instructors are usually more inclined > to work with people on special needs for those days they can't > physically do a class. > > We are also requesting a dermetoligst as Krystal is having skin > problems--really dry and cracking open, bumps, etc. My relatives > with rhuemetoid arthritis say that these things have been common > with them as well, so we'll see what the rhuemetologist has to say > about her skin prior to taking her to a dermetologist. > > I also have a 20 year old daughter,Kyra, who was born with birth > defects in her legs. She has undergone several surgeries to correct > those as much as possible, courtesy of Shriner's Childrens Hospital > in St. Louis, Missouri. This is a wonderful group of people and the > differences they have made in my oldest daughter's life, as well as > the rest of ours, is nearly miraculous. > > Our family also includes 2 new additions. Sadie is a 15 month old > Lhasa Apso we adopted from the Humane Society and Kermie (Kermit the > dog) is a 20 week old Bichon Frise who is an albino the vet said as > he has no dark pigmentation except for his eyes which are a > green/blue with yellow bands when looking head on at him--any angle > or light and they look red. Both are adorable and seem to ease > Krystal's discomfort some with their companionship. Both are really > gentle with her as they seem to understand she hurts. > > Long intro, but that pretty much is it in a nutshell. I look > forward to chatting. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 , I'm sure you have had many replies already, as I'm reading this more than a week later. Welcome. Your poor daughter and your family sure have been through the ringer with this disease. I wish she could have been getting better and more aggressive treatment, if it weren't for the family doctor and the skipping town thing. You didn't mention anything stronger than celebrex that she's been treated with. I'm sure that the rheumy will finally be aggressive and get her on a DMARD. Best of luck. Actually, you've already been to the rheumy by the time you read this. I'll be anxious to see what they say. I hope she improves quickly. Stacia and Hunter, systemic, 8, iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Wow - you have been thru a lot. hope you are better now > > Hello, > > Have just joined the group and wanted to let you know a little of my > history. Drafted a detailed introduction but it was so long I feared > I might scare someone, so here's the shortened version. > > I've been temporarily paralyzed and loss of lower body functions due > to the back. Had 8 spine surgeries, four of which were successful > fusions. The first fusion was prior to BMP and was 3 levels. After > the hardware was removed I was in an accident and the fusion crumbled > so there was a re-do of the 3 level fusion. Then more collapses, and > another 3 level fusion. The severe DDD is getting worse so naturally > more collapses. December 2004 I underwent more than 12 hrs of > surgery and had a 10 level fusion which included a rework of the > previous fusions to realign everything as levels had slipped so far I > was at risk of being permanently paralyzed. This back now has two > long rods, 18 screws and more than 14 cages in three different > styles. > > The miracle is that at only four months post op, I am doing great, > walking better all the time, getting stronger and living with a lot > less pain than prior to the surgery and some days hardly any pain at > all. The body is still trying to act as a human barometer, there are > still muscle spasms but they are becoming less severe and less > frequent, I'm learning how to do things a bit differently now that I > cannot just bend at will, but the big thing is that I am better and > yet still walking! > > Having been through all the tests and experienced so much especially > in dealing with many doctors and finding a new one, I hope that maybe > I can assist others with information that may alleviate some fears > about tests, offer support, some recommendations for consideration > and above all, hope along with possibly also receiving support on my > down days. > > Quietcook Quote Link to comment Share on other sites More sharing options...
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