Just a little update 🎅

As I sit here and write, erase, rewrite, and you get the point....I have so much to say but just really not sure how to put it all in to making sense!!! So for now I will just update:

Jonathon: Is doing ok....he is having a lot of foot pain and to the point were he isn't even going outside (which is not like him at all) hopefully it is nothing serious. He goes for his physical this week so, we will talk to her for now is all I can do is keep his pain under control and try to keep him happy!! It has been making him a little depressed which I hate to see him down!! School has been going good for him. We have been working closely with the behaviorist and a few other people. So, things have been going well with all of that.

Ariana: school for her is going good. Her sensory issues have been up and down lately we have been having a lot more melt downs but it also a crazy time of the year. As much as I try to keep everyday a routine and try really hard to not have a unwanted change but somedays are not that easy. I have found some really good things to help us but, not everyday can be perfect.

Ellie: she is finally getting better her asthma was way out of control. We have had to add another treatment for her everyday. She is loving school and taking the bus! I can not believe she will be 5 next year and in kindergarten!!

Now me: I don't even know were to begin on that!! I am going through a lot of medical tests to figure out what is really going on...I am so frustrated that they can not figure out what is going on I'm just tired of tests and doctors appointments! I will be getting a second opinion since no one else can figure it out.

I am happy to share that Jonathon and I will be going to Utah for the ski retreat we leave December 28th and come home the 1st! We are both so excited, I can't wait to meet and talk with other EB moms and for Jonathon to get to meet others with EB! This is going to be so exciting 😄

Our Thanksgiving,

The "Thanks" in Thanksgiving

As we come up to that time of year again telling everyone what we are thankful for... for me everyday is about thanks!
I have gone a different way this year!! Over the last few years my life has changed so much, I have lost people that I cared about and gained new ones (old and new) that gave me a new meaning!! I am a true believer that people come in and out of your life for a reason the reason we may not ever know but they touch our hearts one way or another!! That brings me to August 7th 1999 a beautiful healthy baby boy was born 7lbs 7oz & 21 inches long! He was to be named Jonathon Michael (first name after dad and middle name after my dad!). His Dad and I were young new parents really no clue what life would have in store for us! Jonathon had the biggest set of blue eyes and when he looked at you they went right through you! As I sat in awe at this beautiful boy all I could think of was the great football player he would become or the next hockey star!! I couldn't wait for him to do all the things boys loved to do! Jonathon was close in age with his cousin and my visions of them wrestling on the lawn and riding bikes all over town you know all the great things boys will do!! All of this quickly changed when I heard those awful words "Epidermolysis Bullosa" what the eff was that???? What do you mean don't have anymore kids (I was already pregnant with my second)??? What do you mean he will not live until 5??? (You can see the birthday post about those feelings) What the hell did all this mean? Ok so we will just cure it they have cures for everything right simple? Hello why are you not answering me? Miss Connolly I'm sorry but there is NO CURE! Wh what do you mean? The only thing you can do is wrap him in bandages and keep him comfortable. After doing some research on EB and trying to put things into perspective and figuring out what all this meant for him...for us... I still had no idea what was in store for him! By this time I had already had a beautiful baby girl Ariana Marie 6lbs 14oz & 20 inches...who was EB free!! In 2006 a wonderful woman submitted a story about her hero who just happened to be Jonathon and the story was going to be in People Magazine!!! The interviewer came out and started asking us all sorts of questions about how we felt about EB!! It wasn't until this time that it had hit me all those emotions that I felt when he was born was never going to happen..he was never going to play football..he was never going to play hockey...he was never going to be a cop...or a firefighter..that's all Jonathon ever wanted to do was be a fireman he wanted to save people and make a difference in people's life! Do you know what it's like to know your child who you have so many hopes and dreams for and who had dreams of his own would not be able to do those things!!! It is one of the hardest pills to swallow in life as a mother!! After this interview we had so many more..Inside edition, our local news, other news stations from other countries and the news papers!!! By the end of it all our heads were spinning!!! But Jonathon had become a pro at talking about EB and what life was like for him and every time I would hear him talk about it I got all teary eyed! Life for him wasn't about EB it was about life and who was in it!! Now don't get me wrong we have always taught Jonathon that he is just like anyone else and can do ANYTHING he puts his mind too but in reality there are just somethings I know he will not be able to do. This year Jonathon got a incredible opportunity to speak at the State House in Boston about his EB. We said yes and started writing his speech! On Feb 29, 2012 I sat in the audience and listened to him read his speech to the crowd...as he read I was brought back to the day he was born when I had all these hopes and dreams and I realized that Jonathon had done all that I ever wanted and more!!! He had grown up to be a special kid who wants to get his story out and teach others about EB!! Dreams never go away they just change as we grow. This year Jonathon was also diagnosed with Aspergers along with his sister Ariana and as the challenges keep coming he does nothing but keep smiling!! So, as we all sit with our families and give thanks for having each other...I am thankful to have someone who has taught me that as life really is to short we should not be afraid to go for it!! Jonathon has taught me more over the last 13 years then anyone or anything!! Life through his eyes has no limits or boundaries!!! Take that minute to stop and look around and you may realize that what you have been missing all along is right in front of you!!! ❤

Long over due update

WOW!!!! Has it been a long time since our last update! So, much has been happening and things have been so busy but I figure better late then never!

Jonathon: So, much is going on with him.  Right before he went to camp this summer he had some neur-psyc testing done and needless to say did not come out how we expected.  He has been diagnosed with Aspergers which was a total shock though it explains so much of the behaviors and actions.  He also is mildly MR which I had a good feeling because his cognitive function has not gone up since his last testing 3 years ago.  So, we have been working with so many people and honestly it becomes very over whelming at times.  Then on top of all that we have the EB and that has been up and down.  Pain seems to be the biggest thing for him at this time (on top of the usual stuff).  Today when I was looking him over all his areas have blisters.  I am pretty sure its because of the stress at school with all they bullying and now he is going to a whole new class because of everything that is going on.  This class is a life skills class that teaches the things you need to be independent.  I am trying to get him a appointment at Cincinnati.  I think its time for him to have a scope but, I want it done by someone with experience.  There are of course other things I want them to see him for so, we shall see what happens with that.  I will be starting a fund raiser "Pennies for Jonathon" to help us get there and back.  Also I think its time for him to have a wheel chair for the days he can not wear his sneakers.  Now he is wearing them but he will limp and need to sit frequently so, I think this may help him and not put so, much pain that he doesn't need. Other than that he is doing well.

Ariana: She has been OK.  She also is Autistic with NOS and SPD.  Her "fits" have been happening a lot more lately and we are back to the same talk that she was saying before.  Things were going so well and under control but I think with her hormones raging at the nice age of 12 that is not helping.  Some of the things I am learning for Jonathon I have been putting in place for her.  Other than all this  she is good.

Ellie: Finally just had her allergy testing done. Guess what??? She has no allergies.  HAHA for some reason I really don't believe that.  During the test she was screaming and moving so, much.  I may have to have it redone. One thing that is concerning is she is gaining weight and more than what it should be so, she will be having her thyroid checked to see if anything is going on. We have been controlling her intake of calories and stuff .  She is very active but still gaining the weight so, hopefully we can get some answers!!  She started preschool this year and loves it.

Me: Just had surgery on Friday for my carpal tunnel and ulnar nerve.  My fibromyalgia is in a bad flare because of all that has been going on!!  My arthritis is also not helping stuff but, what can you do!  I started school in September for medical coding. I am doing it online since I can not commit to a set time with the kids. I probably get more calls from them because of something going on, than I talk to family!! Trying to get things in place for thanksgiving and stressing out for Christmas.  Since I have been laid off I have fallen behind on everything and spend every bit of my unemployment trying to catch up so, have no idea what Christmas is going to be like this year.  The kids go through so, much and take things so well for all that they have to go through it makes me sad to know the one thing they look forward to besides a birthday may be crap this year!! Ugh can not think about it just makes me cry.  Thank you for reading and following us. Jonathon has a facebook page the name is www.facebook.com/jonathonaebwarrior so, please go follow him and get his updates. 

Jonathon's birthday

I have wanted to post this earlier but, with everything going on was not able to: My post from Face book on Jonathon Birthday August 7 2012.

13 years ago today my life was about to change for ever. I was about to have my first child. Nothing could have prepared me for what my family was about to go through. Everything about you was perfect your beautiful blue eyes, long fingers you were the perfect size 7lbs 7oz. We brought you home and adjusted to finally having you home. Then at five days old who would of thought that this blister on...your heal was about to change our family and lives forever!!!! At first nobody had any idea what the hell was going on we were frustrated, angry, mad, why us were all the questions we asked!! I felt alone how were we going to get through this what the hell did Epidermolysis Bullosa mean??? The doctor only told me never to have more kids and prepare that he would not make it to the age of 5. His Dad and I left that appointment looked at each other and said who the hell is he to put a age to our child? I was so lost had no idea what all this meant. went to the library and started researching EB and there was not that much found a few websites with info that kept me optimistic!!!! We had decided never to see that doctor again!! Fast forward to today and you have done nothing but teach me about life and to take each day slow and appreciate the little things. You have bloomed into a incredible young man with awesome hopes and dreams that I can not wait to see you accomplish. Happy birthday Jonathon I love you so much and am so proud of you you have become and how much you have taught all of us!! You have done so much and I could never or would never change a thing you are just as perfect today as you were 13 years ago ♥

 

I have to say a special Thank you to IcingSmiles for making his day truly awesome!! I have never seen him smile so much and, for Chickdee Hill Cakes in NH for making it possible with there awesome birthday cake.  We thank you from the bottom of our hearts for making a milestone so, special for Jonathon you guys ROCK!!!!!

A little of this...A little of that

Well Hello everyone, I know I promised I would update on what was going on with Jonathon while we were in the hospital but, I never got the chance too!! Here is a update.

Well finally the infection cleared up it did end up being MRSA so, they had to switch his antibiotic to Bactrim.  Then we had school start so, I had to get everyone ready for the first day which almost did not happen for a certain someone.  Jonathon insisted that he wanted a motor scooter for his birthday so, I told him if he saved the money he could get one.  Well he just had his birthday and ended up getting enough to get it on his own.  I was very nervous but I let him get it.  Well Monday evening last week I get a phone call with him screaming "I fell I fell" his dad can hear it on the phone and before I can say anything runs down the street. I told Jonathon his Dad was on the way and I waited outside.  I could hear him screaming from up the street so, I new this was not going to be good then he gets in view and oh my word his hands were no longer together. He came up stairs and he was shaking so bad and screaming and crying.  I immediately sat him on the couch got him a cold cloth and his wonderful awesome sister bless her heart got him a cold drink.  I looked over his body to make sure that there wasn't something else that I could not see cause he was covered in blood. The only other injury was a little bit of skin was off his knee.  I knew that I need to get him some pain medication cause Motrin was not going to help this so, I called his PCP and she told me just go to the ER.  Which we did not want to do but if it was going to help him then we needed to.  His dad helped him into the car and off we went.  Let me tell you this place was so busy and they kept telling me we needed to wait, I'm sorry but this was not your average cold so, we were not going to sit and wait!!!  Within a few minutes we were in there and he had some medication and finally started to calm down.  They soaked his hands and put the skin back over the area and just wrapped it for him.  He was miserable I hated seeing him like that and it was the first time I have broke down crying in front of him.  It is the worst I have ever seen him.  He was a trooper though came home and the next day went to his first day of school.  Even though it ended being half a day for him cause we needed to have a follow up at the PCP he still did it!!

First day of school went off great besides the above.  Ariana was so nervous about starting cause she did not know what to expect but, she did great.  She came home and said I don't know what I was so nervous for.  Ellie will start on September 26 and I start this Wednesday the 5th.  Yes you read that right I am starting school.  After being laid off from Emmaus I realized that I need a different career choice so, I am doing hybrid classes here at NECCO for my associates in Health care with my minor in Medical coding.  I will only go to class one day a week and the rest of the work will be done online which is exactly what I need.  Everything else is going OK!!

 

His hands after he fell

His hands after the hospital fixed them

His knee

Jonathon with his cat Princess she never leaves his side when something is going on!

              The first day of school. I got half a smile but, for how much pain he was in its ok!

His hand on 9/2/12

His hand 9/2/12

Deja vu

Well here we are in the same place as we were a year ago in the hospital!! He got home Friday from camp looked good made sure he did a good shower with hibiclens, washed everything in hot water, made him a good meal and sent him to bed early! Woke up Saturday about 11am which I thought wow good sleep.. he was complaining that he was cold but his face was bright red so checked his temp 99.7 for him that's low grade so gave him some Motrin and made him some food and gave him a drink. Things were going good until about 3:30pm. He was hot again and the fever had not budged and when I looked at his thumb it was brown. His dad and I decided that I better take him in because he can get worse so quick and figured get it cultured while there was still fluid in it and just get a quick first dose of IV's. Said by to the girls and off we went! Got to the ER had the worst triage nurse ever!!! Pretty much accused me of waiting a week to bring my son who had burns because he never heard of EB!!! I'll get into that later!!!! Got him in a room waited 2 hours for the doctor who didn't know a thing so I told him what we needed to do and gave my lesson on EB. Well by now Jonathon was not feeling too good. The nurse came in and cultured and the fluid was a yucky brownish green it was so gross and smelly, I have never seen it that color! After sticking him 3 times finally got a IV started and did some labs. I asked the nurse to check his temp cause he wasn't looking so good..103.7..WOW what the F*** I thought that is not good. They gave him 600mg of Motrin. Two hours later he was still very hot starting to shake so, I called the nurse and she re checked it only down to 103...gave him 1000mg of Tylenol and we just prayed it would start going down. Thank god my sister was with me cause honestly I don't show much emotion and don't like to in front of Jonathon cause I don't want to scare him but, I was scared. You feel so helpless as a parent and to sit and see your child in pain, body shaking, and him moaning cause he feels like shit and to know there is NOTHING you can do! The only thing I could do was keep a cold compress on his head. He was so hot I could of fried an egg on his forehead! But, having my sister there felt like I wasn't alone and needed to stay strong for him! About a hour after they started his antibiotic and told me they were going to admit him. Got up to our room oddly the same one as last year. Finally got him to bed about 12:30am. Didn't sleep so well he kept waking up feeling like he was going to be sick and between the nurse checking his vitals what seemed like every hour. We are now just waiting for the doctor who had a emergency. fever this morning is 100.9 only had to do Motrin but they are starting to worry about his kidneys because he is on IV fluids and drinking Gatorade but output is half of what they expected so, just trying to stay positive and pray that it's just the antibiotic messing things up!!! Hopefully we will know soon what's going on! Good note he was able to walk around gotta keep the blood flowing :)

These are news articles that featured Jonathon

I hope this works....here are the articles that have been written about Jonathon. There is also a YouTube video that was made by Jonathons cousin Ryan a few years ago.


http://www.people.com/people/archive/article/0,,20062774,00.html

http://pqasb.pqarchiver.com/boston-sub/access/991182721.html?FMT=ABS&date=Feb+16%2C+2006

http://www.bostonherald.com/jobfind/news/healthcare/view.bg?articleid=1407339

http://massbiohq.org/2012/03/21/game-changers-lotus-tissue-repair/

http://www.massbio.org/news/279-new_therapy_helps_patients_soar_to_new_heights/news_detail

http://umassmemorial.org/support-groups-and-education/health-articles/epidermolysis-bullosa




http://www.youtube.com/watch?v=4UoJYqTlZIo&feature=youtube_gdata_player

Update on Jonathon

Well things have been very up and down these last few days!! I am doing anything and everything to keep him out of the hospital because he feels if he gets admitted he will not be able to attend camp! So, I told him we will pull out all the bells a whistles that we know of a do it! First it started with his toe the one I posted the other day, was put on Bactrim and it started looking good. Then on Sunday he showed me this spot on his right calf that started as a pimple then got little blisters, red, warm, inflamed. I had a good idea that it was MRSA just because the few other times he has gotten it this is exactly what it looked like! So put some infection medicine on it and got a cleanser to help. He did get a little sick Sunday night into Monday but the good thing is never got a fever! That spot now is a nice little hole in his leg but looking better. He is starting to get some pus filled blisters that I hope do not become anything!!! He is a tough cookie and does not back down to any challenge EB wants to through at him!!!!


First 2 pics are Sunday and the last one is tonight's.

Just a few rambles

I don't even know where to start but let me start by saying Jonathons infection has cleared up!!! Very happy no hospital trips were involved!! Guess I will just jump in: I have been up and down with my depression lately and I think its just a bit of everything into one! I feel like the walls are closing in on me! I am the sole caregiver, provider what ever else you want to call it of my house even though Jon and I have been together almost 14 years I do it all: medical appointments, school stuff, bills, getting Jonathons baths ready, bandage changes etc....we don't have family close by and the ones that are don't help at all! I also have fibromyalgia, rheumatoid arthritis, severe back pain and a few other things that they are not sure about! There are some days that the pain is so bad I can barely walk and am in so much pain, I will ask Jon if he can take care of Jonathon for the night by doing bandages and all that stuff but I get an attitude, and we end up having a argument and I find it useless so, I just do it! Don't misunderstand me I'm not bashing him at all and love him very much! He is a great dad and his kids love him but I'm just miserable! We have two children that are special needs, and Jonathon also has the complex medical issues. Him and I have not had a "date night" in oh man who knows how long! I also know he is still in I guess shock or denial about stuff with the kids but I feel that's not fair I have had to accept it and make a plan of action for the both of them! If I don't who will? Right nobody then nothing gets done and that can't happen!! Yes, I do see a counselor and am on anti-depressants but, some days they are just not good enough! Jonathon will be 13 in August and even though things have been going down lately I am very excited to be celebrating a milestone of him turning 13 considering I was told he would never make it to the age of 5. And as happy as I am I am also sad because things have been worse for him then better like we had hoped! I am trying to get him a wheel chair since he has not been able to wear shoes much due to so much blistering on his feet which mean one of two things I need to get accommodations for my car or get a used one! Preferably would like a bigger used one due to the fact we can not do anything together because my back seat is small and when the 3 kids sit back there Jonathon has to sit by the window if not he will blister by his knees hitting the seat along with his elbows so, Ariana sits in the middle and with her sensory processing issues you can imagine how that goes!!! But I guess the point is guess who has to think about all of this and deal with it? Me....I almost feel I'm single and just have a room mate...I just don't know if I have the strength to keep dealing with all of this....some days I just want to pack up and go! I would and could not ever do that but it's my feelings! I'm really sorry for venting but when you don't have many that understand writing becomes your therapy!!!

Frustrated!!

Well here we are again with "I'm sorry I don't know what is going on" Jonathon showed me a spot on his toe that looked liked a blister was forming so, we went to his dentist appointment. Got home about 2 hours later and BAM toe was really red, warm and swollen. The weird thing is there is no open wound or anything. So, I called his doctor and they saw him right away. The doctor does not know what is going on! The blood work is good and his x-ray was good! He just got his antibiotics last week for another issue and now he's on another one for 10 days! As of this morning the red has spread so, not sure what they are going to do? Just so frustrated at this point!!!

What is this world coming too...

Jon and I have always tried to teach our kids to respect others, treat others the way you want to be treated and be a good friend!! But, over the last two days that way of teaching has been very hard to stick with. I found out yesterday when I went to pick Jonathon up from school that the reason why his knee had blistered and been acting up was because some boy in his class was kicking him everyday for the past few days. Well, he didn't want to say anything because all the other kids would have called him a snitch so, he just kept dealing with it. Finally the teacher could sense an issue and spoke with Jonathon privately and he came clean about it. Let me tell you honestly my first reaction was why didn't you hit him back but, I couldn't say that he was only doing what we have taught him. Of course my phone call was not returned by the principle so, tonight I had to write a very lovely letter!!! Then today my daughter goes to the library with a friend and the friend totally flipped on her because she wouldn't call someone a slut!!! As some of you know Ariana has sensory issues and become very upset when this girl started yelling at her, she the proceeded to put her hand over her mouth and hit her off side the head!!! Then took off and left Ariana to walk home alone and crying...what the heck is going on?!?! After I got to calm Ariana down we talked and I said I was going to call her mother but Ariana told me it wouldn't matter because her mom doesn't care. See that's the issue here why are these parents not being parents??? You have children it is your responsibility to teach them right!! I know some kids have issues but honestly so do mine but we teach them that it's not an excuse!!! Everyday they are tested and I just hope my parenting skills will be the winner in the end!!

Well.........

I have been meaning to update for a while but, this darn fibromyelgia has not let me sit at the computer and I have yet to figure out how to update from my iPhone!! So I guess I will start with:

Me: as some of you know I have been laid off from my job and have been trying to find something along the line of what I was doing before but I have also been contemplating if I should go back to school or not? As, of today I still have not made up my mind!! It would need to be online classes and I can not find what I want to do online so, who knows what I will end up doing!!  My fibromyelgia and Rheumatoid arthritis has been out of control lately but I don't think the stress I have been going through lately has helped any of it!! But, my motto on hour at a time yeah its been that kind of months!! Any who that's really been it for me...

Jonathon: His skin has been outta control...I have never seen things this bad so many little infections, new places getting blisters, places not healing, its been crazy...He had his six month check up at the EB clinic last Friday and that went OK...They did a lot of blood work to see how things were but I haven't heard anything so I am assuming they are stumped about also..I'm thinking hormones because he is at that age he will be 13 this August.  He is going to be going to camp again and cant wait till then. I was hoping we could attend the PCC but don't think that will be happening now that I have been laid off. I wanted him to meet others and I would love to meet everyone that I have meet online through out the years but, maybe next one.  School for him is going OK still having problems with some of the kids but he is really trying hard to keep his grades up and is doing good working at it!!  One thing we are thinking it may be time to do is get him a wheel chair...He has had to miss some important trips at school because of not being able to walk that far and he was really upset that he could not attend so, we are discussing our options. If we do I will be having a fund raiser to help with the cost.  School is out in about 3 weeks and deciding if I want to home school them the summer program or send them to it!!!

Ariana: I am so proud of her she has come so far with all of her sensory stuff and learning to take the breaks when she needs too.  Home has gotten better she has been trying really hard to speak up when she needs a break here as well...we still have some work to do but I think we will get there.  She has taken all of the things she learned in OT and using them at home and school.  It also helps this year she has a great group of teachers and let me tell you that makes all the difference in the world.



Ellie: Cant believe she is going to be 4 in two weeks my baby is no longer a baby!!! She just started preschool last week, the first couple of days were rough but she loves it!!! It is so good for her to keep her busy while the older two are at school for the day...Her health has been up and down her asthma with this allergy season is out of control but I finally think we have it under control.

My Little Politicaian

Hello everyone!!!

Just a little update on what has been going on!

Jonathon's appointment went ok the other day. He has some bad scarring in some of his fingers so, that has caused the other fingers to become weak. The doctor gave him some had exercises to do.  He has been doing them and they are feeling ok he says.  His biggest complaint is the pain!

As most of you know yesterday was National Rare Disease Day!! Jonathon was invited to the State House in Boston to speak about how EB has affected him and what he hopes days like this will do for Rare Diseases. He did such a great job I am so proud of him!! He looked so natural and like it is something he does all the time.  The Boston Herald did a awesome article about the event.

Long over due update

Well finally I have gotten the time to sit down at the real computer (not just my phone) and give a update...

Jonathon: He has been invited to speak at the State House on Wednesday Feb 29th for National Rare Disease day which is so awesome.  We finally just finished  his speech which took us all weekend to write...but I like the final draft and that is what we are going to stick with! He is nervous but excited at the same time, we have another interview set up right after and couldn't be more excited!! He loves to share his story and get the word out there, and we will never pass up an interview about EB!!! Skin wise well that has been up and down like usual. He just had a lot of mouth work done which did a number on his gums but hopefully that will be it for awhile.  The good news out of it is he won't need to have the spacers put in cause his teeth are actually growing in straight!!!! Yay finally something good out of all of this I tell ya it often feels like one bad thing after another!!! He has an appointment with the hand specialist tomorrow because he is losing the mobility in his hands and Dr. Wiss doesn't know if its an EB thing or not.  I don't even really know because his sub-type is unknown some days he shows like its DDEB and others like RDEB so we will most likely be asking for some more testing to be done to try to figure it all out!!  On a brighter note he made honor roll this term and we are so proud of him! He worked so hard to get it and deserves it! He has a very hard time with school and some of the kids and it is often distracting to him but he pushes through and does a good job.

Ariana: She is doing so much better with school and really has had no issues this year.  She still has her moments at home and still does a lot with the sensory diet here and at school but now that she is getting older she is learning to regulate things a lot better.  I am happy to say that the trauma from last year in school has not had any affect on her this year which, is great!!

Ellie: Well she is just Ellie my happy go lucky girl who just goes with the flow.  Her ears have been good no infections since the tubes but has gotten whooping cough again.  Shes is doing much better and we are down to one treatment a day and that is just at night before bed. 

The rest of us are good just one day at a time!!! My fibro has been up and down and the RA is a killer but what can I do?? Would like to see a great doctor but after all the kids appointments and stuff I have no energy to worry about me. I know I shouldn't be like that but the pain just wipes me out and I have no energy.

I will update about Jonathon's appointment tomorrow!