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New Member

Date Joined Jun 2010
Total Posts : 2
   Posted 6/26/2010 4:47 PM (GMT -6)   
Hi everyone. I'm new here and to the forum world itself. I have MCTD, Firbomyalgia and migraines.  I'm 26 years old with two children and the physical limitations are really starting to get under my skin. Does anyone have any advise? I'm on meds to help with everything...but I seem to have "flare ups" more and more. I had to go to the ER two days ago and they sent me home with strong meds that knock me out. I used to play soccer and was very active. In mid 2008 I was hospitalized with Salmonella and then it's been down hill since then.  I was not "supossed" to be able to have any children, but I had another child and was high risk the whole time and had a healthy baby boy.
There is family history of autoimmune diseases, my mom had grave's disease and my mom's mom had scleraderma.
Sorry for the long intro. I am really looking forward to find some advice on how to cope and get through everyday life without feeling bad that I can't run with my seven year old.
Thanks in advance,

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 6/26/2010 5:15 PM (GMT -6)   
Hey Megan! Welcome to the Healing well Forums :)! I am sure you will find nothing but helpful friendly people. Sorry to hear you are having so many problems. If your flare ups are happening more and more often maybe you should talk to your doctor about trying a different medicine to help avoid flares?

I know its very difficult with children but listen to your body. When you are needing a nap, try to take one. If you need rest, rest. Also, try to avoid staying out of the sun. The sun is our worst enemy and cause havic on our bodies. I am sure other will be along shortly to welcome you!!! Hope you stick around and get to know us :)

challenged nurse
Regular Member

Date Joined May 2010
Total Posts : 69
   Posted 6/26/2010 10:29 PM (GMT -6)   
Hey Megan! Welcome to the Forum. I am still new to the forum myself. I was very active myself before all this, I am still getting use to the idea of not being able to do anything that I use to do. It takes everything I have to walk to the front of the house now. But Aimsgirl is right, you need to listen to your body it will tell you what it wants. I didn't listen and I am paying for it now. Everyone here has been so helpful and don't mind answering any questions that you have. Hang in there.
DX: Lupus(UCTD), Asthma, Mitral Valve Prolapse, Heart Murmur, Anemia, Vitamin D def., B12 def, Hypertension r/t lupus, TIA, muscle weakness, numbness, tingling, headaches, night and day sweats and IBS.

Meds: Imuran 100mg, Prednisone 60mg, drisdol 50,000 units weekly, b12 injections monthly, Protonix, Zantac, Tramadol 4 times daily prn, Align, Kapidex, Amitza, Miralax, Vaseretic/HCTZ Aspirin.

Allergies: Cipro and Bactrim
I can do all things through Christ that strengthens me.

New Member

Date Joined Jun 2010
Total Posts : 2
   Posted 6/28/2010 12:34 AM (GMT -6)   
Thanks for the listen to my body. I'm hardheaded and that's my problem. Along with living in Ga, the sun kicks my but. I know my eyes are very sensitive to the sunlight. I have to wear sunglasses to just go outside even in the morning before the sun is high. Working full time and having two children are wearing me down, but I have to pay my bills. I just feel so hopeless and I'm only 26 (I'll be 27 next month), but life shouldn't be this hard for me. It's been really bugging me these past couple of weeks. My hands are so swollen and I can't really pick things up and my 7 year old had to open a jar of baby food for me the other day. I get so mad at myself because I should be able to do these things. Then I get to the point where I cry becuase I want to be able to do the things I can't do at this time. I only cry when I am in the shower becuase I don't want to worry my fiance' or children. I guess I'm too hard on myself.

Then when I have to call out of work, I feel real bad, but I have al of my FMLA paper work so they can't fire me. I'm going to try changing my doctor, becuase when I tell her I'm having a flare up and can barely get out of bed, they just hit me with a high dose of this and that then throw in a six day steroid. I need some other type of relief. And to think my doctor said it's only going to get worse.

It really scares me now, because my grandma with scleraderma died when she was 52 years old and my dad's mom died a few years ago with breast cancer that spread to her lungs and brain and she was only 67. I'm so scared I won't see my children grow up and I know my condiditon isn't as bad as a lot of people, but it still stinks to be in my shoes everyday, if you know what I mean?

My fingers are starting to really hurt now, so I'll write more later. Oh, and my biggest fear is being in a wheel chair. I'm not sure why, but I want to be able to sit on the floor and play with my boys and that task alone is starting to get harder and harder. It takes me longer and longer to get up these days like I'm 90 years old (no offense to anyone).

I need advice and encouragement to stay strong and not get fustrated with myself for not being able to do what I use to be able to do. My fiance' really doesn't understand, but is very helpful when I can't get out of bed and with anything else I need.

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 6/29/2010 1:16 PM (GMT -6)   
Your finacee seems he cares and loves you very much. He may truelly never understand, but he will be able to relate to it if you tell him more. There are programs out there for people to help. Do not be afraid to ask for help. I know that is easier said than done. The kids can help pick up toys, keep the house clean. Your oldest can even help you with cooking. My boy just finished kindergarten, and loves to sit on the counter and help me with cooking. I let him put things in the pots, open things up, basically anything that doesnt actually involve the stove. I have been teaching him how to use the microwave. I've had fibro flares where it took all I had just to get out of bed or even just to stand. My doctor has recently put me in pool therapy. It is okay for you to cry hon.

As for changing doctors, try going to a teaching hospital. Take all your medical records, and family history medical records with you, and get the help you need.

Also, lean on us whenever you want.

Ps, Welcome to the group!
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days

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