My trip to the East Coast

[powderpuff]

I took a trip to the east coast a week ago to visit my family. I was on antibiotics and recovering from a nasty UTI and was a little worried about how the trip would go for me. More so, I was wondering what my family would think about me since I had not visited since my diagnosis. When I last saw them I was becoming ill and losing weight, unbeknownst to me at the time I had Sjogrens. Since then I've lost about 30 or more lbs and to them might look sick considering they had not seen me in over a year.

I was totally unprepared for the loving support received from my family. I have a loving family anyway but I have never been in this type of position as I've always presented myself as a strong person, not frail. It surprised me when my mom and brothers whipped out several pages from the Mayo website about SJS. Luckily, I did not have to go into a lot of detail about the disease itself because they had done their homework already. I explained the symptoms and difficulties I was having with this disease and how it affects my life. They listened and were empathetic. For sure this disease has brought us closer together as a family unit. For that I am grateful..... 

[Cassi307]

Powderpuff. That is really touching! I am so happy that your family rallied behind you with love and support. What a blessing.
Where were you on the East Coast. I am a NJ gal.

[powderpuff]

Cassi307, I was in Maryland. I grew up 5 miles from Ocean City in a itty bitty town called Berlin. I am always eager to go to Ocean City for the Thrasher's fries and Fisher's popcorn. 

[tamaran17]

I know Berlin! I live in northern baltimore co in parkton!

[powderpuff]

I know Berlin! I live in northern baltimore co in parkton!

Wow, what a small world!

[Carolina]

How wonderful powderpuff!

I love the East Coast.  We live in North Carolina, and hour and a half from the outer banks. 

Life is good near the ocean. 

Watch those UTIs.  You could develop Interstitial Cystitis (an inflammation of the lining of your bladder).

I had never had a UTI until I developed them at 64!  and now I have IC.

Up to 50% of those with Sjogren's develop IC.

One sign is a 'rebound' effect of pain after you are done with the antibiotic.  You think the UTI is back, but it isn't.

Take care,

Keep us posted

Hugs

Elaine