DISboutiquers

[HeatherSue]

I am wondering if the muscle pain/fatigue is related to or totally independent of the APS. If it were the same muscle I would be concerned that it was a clot forming there. But in any case, you need to find a hemotologist who specializes in Hughs Syndrom right? Perhaps you could do a search for hemotologists in Michigan. Here is one site:

https://store.hematology.org/fah/fahhome.htm

There is a huge list of doctors and what they specialize in: For example:

Name: Judith C. Andersen, MD
Company: Karmanos Cancer Institute
Wayne State University

Department:
Address: 4100 John R., 4HWCRC

City: Detroit
State/Province: MI
Postal Code: 48201
Country: United States

Phone: (800) KAR-MANO Ext:

Specialties:

Int Med: Hematology

Clinical Interests:

Anemia
Bleeding Disorders
Thrombosis and Hemostasis/Blood Clotting
Transfusion Medicine
Myeloproliferative Disorders
Myelodysplastic Syndromes


Well in any case, you already know you have to be proactive and do your own research and talk to other people (like on your APS board you belong to).Just don't give up till you get what you want. Course then there is the insurance companies to deal with. I just watched Michael Moore's movie "Sicko". Perhaps you can go go Canada or Cuba or Europe for free help! Sad state of affairs in the USA.
OK well keep us informed! We love ya!!!

Thanks for the link! The doctor I just went to was listed on there as specializing in hematology, but she told me that she specializes in oncology and doesn't know much about "clotters", as she put it. My first doctor was on there as well (he was more informed, but still outdated), but there is a 3rd I hadn't heard of, but he specializes in oncology. I did an advanced search for doctors within 100 miles and a few more popped up. So, thank you for that link! I'll bookmark it for sure! I thought I had seen every site out there having to do with clotting disorders or autoimmune diseases!

All of the new studies on APS list muscle pain and fatigue as symptoms. But, most of the doctors graduated from medical school when APS was a "new" disease. So, they don't know much.

 

[eeyore3847]

I just finished this set. Don't know if anyone else is awake still but I thought I'd share anyway.

HK is looking a little sassy...
lisa are you participating in the blackout?

 

[HeatherSue]

HK is looking a little sassy...

I AM looking a little sassy, aren't I? So is my husband!

(Both our initials are HK)

 

[alikat99]

Ok, so I've finally uploaded the pictures of what we've been up to lately. This is why there's been no sewing lately!!!

Emily's team competed in their first competition of the year at the FL State Fair last Saturday.

That's her in the back, on top.

Yep, on top again. Emily thinks it's funny that she gets to look at the sky.

Final stunt of the routine!

They ended up with 2nd place!!! I'm pretty proud of them, since they just learned this new routine in the beginning of January.

 

[billwendy]

I just finished this set. Don't know if anyone else is awake still but I thought I'd share anyway.

This is so totally cool!! Is that the Michael Miller Eiffle tower fabric I see? I can only find that on ! Is it an older print?

 

[ObsessedwiththeMouse]

I just watched Michael Moore's movie "Sicko". Perhaps you can go go Canada or Cuba or Europe for free help! Sad state of affairs in the USA.

Yes, please go to Canada where it will take you 6 months to get a doctor's appointment ....Gotta love that free healthcare!

Hi girls! I know it's been awhile since I've been here, but it's good to see what ya'll have been up to! I love all of the new creations!

Tom, I love that set! Where did you find that fabric? Beautiful!

 

[jham]

looking for a picture of cinderellas slipper on a pillow! Anyone have a great pic of that. I have seen outfits with them on here!!! HElp I have looked for an hour online and nada!!!!!!!!

Lori

For this shoe on a slipper, I found a coloring book page where the slipper and pillow were seperate so I just made both the size I needed and put the slipper on the pillow. I will try to find the coloring page, it is just a basic common one of Cinderella about to try on the slipper.

 

[Stephres]

Cute! I love all the valentine's day stuff.

Goodness! I would be so intimated by that picture I wouldn't know where to start. I can't wait to see the finished project!

Cute! It will look great with binding on it.

You did a great job on the applique! I love the bling too.

Aww, poor Megan, I hope she gets feeling better!

Thanks! She is not really that sick, just sick enough to be grumpy and not wanting to do anything (which is really not like her).

I love this! I especially like the ruffle on the bottom.

Riley did a great job! She is going to be sewing up a storm now!

Love Leigh's pose! You are so fast: it takes me forever to whip up an outfit, lol. I love that spring fabric too.

So cute Lori. It makes me sad that I didn't sew when my son was younger. All the cute outfits he could have worn! I love the stripe, very boyish and cute.

It looks great! What a creative mind you have that you saw the lawn chair and put it together in your head. I just don't think like that. I love the scalloped edge too.

Very cute, Aimee. I love the pink print with the polka dots.

VERY cute, Steph!! I hope Megan is feeling better today.

She is ok, but she didn't sleep very well at all last night. I am trying to figure out how to drag her to JoAnns to get something to finish her Marie outfit. I made her a St. Patrick's day outfit but she refuses to model it because it is not March yet. Maybe I should force her and take pictures of her throwing a tantrum, eh? Just kidding!

This is so cute! The buttons and the collar, what a great job you did! And of course Sawyer is adorable even while throwing a tantrum.

That is so cute, but it wouldn't last long in our house. The dogs don't chew on the ribbon? They look so cute all curled up together.

Cute little crabs! I love it!

Man, that would be awesome!

I know someone did a pair very similar to the zuma pattern that had Belle on the pants. It was VERY cute!

That was Mindy, right? Those pants were so cute!

He looks so cute in his outfit. Happy birthday!

These are so cute! I love that strawberry shortcake fabric, I made a skirt with it for my daughter. You did a great job on all three of them and your daughter is such a cutie!

I cannot show this Megan! I love punk hello kitty, just beautiful.

 

[Adi12982]

Originally Posted by twob4him View Post

I just watched Michael Moore's movie "Sicko". Perhaps you can go go Canada or Cuba or Europe for free help! Sad state of affairs in the USA.

Or make sure when you go to Cuba - you bring EVERYTHING you will need. . . when anyone in my family needs a surgery or medical attention we have to send bed pans, bed sheets, needles, anesthesia, and medicine's. . . there may be great doctor but unless you are Castro and his cronies or making a movie, you don't get any of that. . . . sad but true. . .

You will be in my prayers and I REALLY hope you can find a doctor who will listen to you. It took me a YEAR to get someone to pay attention to the intense pains that I was having that turned out to be cancer. Please don't give up, if I had stopped pushing I may not be on this earth anymore. . . not to say that it will be the same for you, but you just have to be persistent. You and your family will be in my prayers. . . .

 

[mytwotinks]

Wow! So much more fun stuff being created!!!!

My kiddos are out of school today so I am going to get busy sewing. Riley is going to tackle another pair of pj pants and hopefully Drew is going to stay busy playing with play-do! I have a pair of ruffle leg gouchos almost finished so maybe Riley and I will have some pics to post later today.

Have a happy President's Day!!!!!!

 

[mytwotinks]

Or make sure when you go to Cuba - you bring EVERYTHING you will need. . . when anyone in my family needs a surgery or medical attention we have to send bed pans, bed sheets, needles, anesthesia, and medicine's. . . there may be great doctor but unless you are Castro and his cronies or making a movie, you don't get any of that. . . . sad but true. . .

You will be in my prayers and I REALLY hope you can find a doctor who will listen to you. It took me a YEAR to get someone to pay attention to the intense pains that I was having that turned out to be cancer. Please don't give up, if I had stopped pushing I may not be on this earth anymore. . . not to say that it will be the same for you, but you just have to be persistent. You and your family will be in my prayers. . . .

That is so scary. My MIL was misdiagnosed for so long that by the time they found her stomache cancer it had ravaged her body. She had surgery and did go on to live for a few more years, but it had been left way too long and it eventually came back and since she was covered with scar tissue on her insides so they could not operate again.

I find that people who haven't had trouble getting care from their doctors don't quite "get" that in this country it can sometimes be difficult to get a dianosis. Even with insurance!

Be persistant and never let someone make you doubt your concerns. You make them prove to YOU that what you feel is not serious and don't accept that as an answer until you are 100% satisfied.

I have to remind myself that I am not trying to make friends with my doctors. If they don't like me it's too bad! I think as women we are always worried that someone will think we are *#&($y. Well, I had to be a *&^$# to save my daughter and I wish I had done it sooner!

 

[jham]

Yikes! Only 4 pages to go? I feel the need to stay caught up today! I missed the last week of the old thread and it still bothers me

Love Jack Russels, too! We have a new pup, Rocky

Little stinker! He is so resisting being housebroken!!!!!!!!!!!!!!!

That is just the cutest picture! We have the fewest pets we've ever had right now! Luke has one little fish and Jayden's poor little hamster is past her life expectancy and I think her little teeth fell out and she is blind now.

We went to the zoo today for Camden's B-day with Wendy's Family and Jhammy's family it was a Blast

Here is Camden's B-day outfit .

We had fun at the zoo! Love Camden's birthday outfit. Silly me, I thought it was "store bought" you did a great job on it! And no, my Jayden is not strangling Norah, I promise.

ETA: That was my 9000th post. I'll guess I'll call it a night

Wow, 9000! And great job on the wheelchair canopy. You are smart!

Fantastic stuff ladies... I have been an off and on again lurker... may have posted before but can't remember and too many pages to check.... The past 2 weeks I started doing some of my own.... Starting off Easy w/ pillowcase dresses that I modified a little to work for me....mostly just added the belt and am making from scratch rather than a pillowcase .... Here are my 1st 4 tries.... 3 are for DD and 1 is for my neice that my DD is showing off for you all

Whatcha think? and yes... that is a little leftover spaghetti sauce on the face.. .silly girl

You did a great job! I still haven't tried a pillowcase dress. I'll have to make one for Lily when it feels warm enough to think about something so summery!

I love Sawyer's shirt! I may have to make more of those for my boys.

Ok, so I've finally uploaded the pictures of what we've been up to lately. This is why there's been no sewing lately!!!

Emily's team competed in their first competition of the year at the FL State Fair last Saturday.

How cute are those baby cheerleaders! Thanks for sharing pictures!

 

[ms_mckenna]

This is my BIG project for the weekend. I bought a $20 folding lawn chair with a canopy, used a dremel tool to cut the bolts that held the canopy on. I went to Home Depot and bought some new bolts, spacers, washer and wing nuts. Then Chris helped me drill out the holes a bit bigger and we reassembled the canopy on the wheelchair. We can take it off fairly easily since we used wing nuts

I added the front scalloped edge with a bit of a Disney touch to make it look like it belongs to a 5 year old. It needs a little fun don't you think.

This morning I set out to build a rain cover for it. This is what I came up with.

I'm happy to have this project completed. One more thing that I can check off my to do list

OMG what a GREAT idea!!!! Mind if I steal it lol. We had DS covered in two ponchos last summer and poor kid was still getting wet!

Side note sorry I have not been around. Things have been crazy at my house. I got my dining room chairs recovered this weekend though. I put a thin plastic on top of them too to protect them a bit. I am about to start painting my house doing murals in the kids rooms so I am not gonna be around as much. But it will be worth it when it is done! We are doing our foster boy room in Mickey and Friends I have to find clear color pages to do them with. And our foster girl room is going to be Princesses and the other strong female characters. I even found a Tiana that I am going to use and add her in with everyone else.

 

[Tanya90210]

Thanks for all your wonderful comments ladies I decided to add the belts to them as someone said... because my daughter is too skinny that without a belt she'd look ridiculous....

I really love the quilt style skirts you all have done.... any place where I would look to get a pattern for them?

 

[revrob]

OMG what a GREAT idea!!!! Mind if I steal it lol. We had DS covered in two ponchos last summer and poor kid was still getting wet!

Side note sorry I have not been around. Things have been crazy at my house. I got my dining room chairs recovered this weekend though. I put a thin plastic on top of them too to protect them a bit. I am about to start painting my house doing murals in the kids rooms so I am not gonna be around as much. But it will be worth it when it is done! We are doing our foster boy room in Mickey and Friends I have to find clear color pages to do them with. And our foster girl room is going to be Princesses and the other strong female characters. I even found a Tiana that I am going to use and add her in with everyone else.

Sounds like you've been busy! Have fun painting!

Love your new siggy, btw!

 

[twob4him]

Yes, please go to Canada where it will take you 6 months to get a doctor's appointment ....Gotta love that free healthcare!

Or make sure when you go to Cuba - you bring EVERYTHING you will need. . . when anyone in my family needs a surgery or medical attention we have to send bed pans, bed sheets, needles, anesthesia, and medicine's. . . there may be great doctor but unless you are Castro and his cronies or making a movie, you don't get any of that. . . . sad but true. . .

Hmmm I did want the truth from someone who lives there. Michael Moore's movie made it appear differently of course!

Thanks for the link! The doctor I just went to was listed on there as specializing in hematology, but she told me that she specializes in oncology and doesn't know much about "clotters", as she put it. My first doctor was on there as well (he was more informed, but still outdated), but there is a 3rd I hadn't heard of, but he specializes in oncology. I did an advanced search for doctors within 100 miles and a few more popped up. So, thank you for that link! I'll bookmark it for sure! I thought I had seen every site out there having to do with clotting disorders or autoimmune diseases!

All of the new studies on APS list muscle pain and fatigue as symptoms. But, most of the doctors graduated from medical school when APS was a "new" disease. So, they don't know much.

Yes, before you make the appointment, you should talk to the doctor on the phone and see what exactly he/she knows about APS. That way you don't drive there for naught. At least thats what I would do. No reason why the doctor can't call you for a phone conference first.

That is so scary. My MIL was misdiagnosed for so long that by the time they found her stomache cancer it had ravaged her body. She had surgery and did go on to live for a few more years, but it had been left way too long and it eventually came back and since she was covered with scar tissue on her insides so they could not operate again.

I find that people who haven't had trouble getting care from their doctors don't quite "get" that in this country it can sometimes be difficult to get a dianosis. Even with insurance!

Be persistant and never let someone make you doubt your concerns. You make them prove to YOU that what you feel is not serious and don't accept that as an answer until you are 100% satisfied.

I have to remind myself that I am not trying to make friends with my doctors. If they don't like me it's too bad! I think as women we are always worried that someone will think we are *#&($y. Well, I had to be a *&^$# to save my daughter and I wish I had done it sooner!

I guess since my dad was a doctor, they don't intimidate me meaning that I don't think doctors can know all/ cure all and I don't revere the ground they walk on. And even if they do want to help and have an idea, often insurance companies call procedures "experimental" and won't cover them. And according to this movie I watched (which may not be true), the doctors on the insurance company's side, are paid to reject claims and given bonuses for not covering things...etc. Ghastly stuff. As you said, you really have to protect yourself and loved ones, and be really aggressive and not take NO for an answer and go and go until you get what you want.

 

[twob4him]

Here's a princess outfit I made for a friend's daughter who is turning 3. It's part of her birthday present. She is just a little peanut so it seems so small to me. Gee I hope it fits her. Anyway, its a swing top and shorts for when they go to Disney this summer. Terribly hot in the summer I say.

 

[MouseTriper]

I finally got DD's room in order. It really is cute and girlie. I'm so happy. I just realized tonight that this is the first time that DD has had a room of her own with decorations just for her also.

Aww do you have any pictures to share?? We want to redo our DD's room too. I would love to see what you did to your little one's room!!

I just finished this set. Don't know if anyone else is awake still but I thought I'd share anyway.

OMG I LOVE THIS!!!!! You always do a beautiful job!!!!!!!

 

[100AcrePrincess]

I just finished this set. Don't know if anyone else is awake still but I thought I'd share anyway.

Wow! I love it! DD4 is begging for a HK outfit. I guess I'll have to move it up to near the top of the list now.

 

[jham]

I just finished this set. Don't know if anyone else is awake still but I thought I'd share anyway.

I love this Lisa! Especially the "real" skirt on HK. Is rouching (or however you spell it) very hard? How wide a strip of fabric do you use? And you just serge-finish the edges then run a gather stitch down the middle then stitch over that when you attach it? Or have I got it all wrong? I'm going to attempt this on DDs easter dresses--if I ever get my fabric. I ordered some from fabricattic.com I ordered 5 yards last week and they just now email me to tell me they only have 4 yards I guess I'll just have to make it work somehow.