Lost my friend who had Lupus the other day

i went to my friend's funeral this morning. She was only 41. She found out while we were in college that she had Lupus ans underwent chemo treatments for it. She always took things in stride and really took very good care of herself. Last year, she found a lump under her armpit and they found out it was an aggressive form of lymphoma. Her sister was a perfect match for a bone marrow donor so she went through the transplant in Jan of this year. In April, they told her the transplant did not work and there was nothing more they could do. She was determined to fight this and was still trying to plan an upcoming vacation just two weeks ago. Her family wanted her to have hope so they continued to let her plan. She lost her battle last Friday and they said her Lupus was one of the reasons it was more difficult for her to fight. My friends and I lost an angel on earth who was one of the most positive people I have ever met. (She had something called Usher's on top of this so she was deaf and lost her sight in the last 5 years.)

After listening to everyone's stories about her and her Lupus, it makes me wondef if this is what Caitlin's future will be somewhat like this or if the drs have it all wrong. i want so much to believe that there is absolutely nothing wrong with Caitlin. i guess I need to be more optimistic like my friend, but some days its hard. Today is one of those days where I just need to take it one day at a time and put my faith in God.

Pauline - I'm so sorry. She sounds like a wonderful person. Way too young for all of that!

All I can tell you about Caitlin is this: You're right, you can only take it one day at a time. You can worry yourself sick about things that might never happen, or you can enjoy now and stay hopeful that Caitlin will be healthy. Lupus is different for everyone, and some have it easier than others. Some cases are very manageable and others are not. People with Lupus are at an increased risk of cancer due to the illness itself and the medications they use to treat it. It's just one of the many things that can go wrong, but it really stinks when it happens to such a good person.

I understand your fears. My daughter has so many health problems too and I worry about her constantly. She is 26, but owns her own home and has to keep working for that and to keep her health insurance. She is the one with Graves, but has on-going heart problems because of it. She also has asthma, eczema and recently, has been battling digestive problems. She is on a bland diet. I don't know how much more she can take, but the girl keeps plugging away and deals with everything that comes her way. She has a social life and is one of those people who is the first to come running when there is a problem. I love her to death. These kids can really surprise you with their strength and ability to keep pushing. She amazes me. Point is, she still enjoys life and has a lot of good times, despite her battles. I get so angry that she isn't healthy and can't just do and eat whatever she wants, but she does okay. I just hope it ends here! Not fair!

Caitlin has had a lot going on with her too but seems to push through it and not let it stop her. Hopefully, she will be able to keep doing that. Again, one day at a time....

oh Ladies....I'm sorry about your friend Pauline. She sounds like she was a shining example of a happy life even with all the trials. It sounds like you both have an example of that in your lives too with your daughters. Stay strong.

Keeping your family in my prayers. Sorry to hear about your friend.

Thank you ladies! Today is a better day...not worrying as much! It really doesn't seem fair but Caitlin pointed out to me that ITP really isnt all that bad and there are so many children much worse. She's thankful that she doesn't experience pain from whatever is going on with her. I imagine most of the ITP kids who see a pediatric hematologist are grouped with the cancer patients. Caitlin works closely with the life specialist each time she goes and helping the younger children so she hears their stories. What's even sadder is that she sees the nurse's string of beads grow each month and that's sad to her. Each bead they wear represents a patient they loss and what their favorite thing/color is. Caitlin wants to volunteer during the summers helping the life specialist when she is old enough.
Thanks again for listening!

Good for Caitlin! She has a great attitude! She has been through more than most adults with ITP and if she thinks it's not that bad, she should be giving speeches! What a great child you have there, Pauline!

Thanks for your words Sandi! That means alot! I really am so proud of her and admire how laid back she really is about everything. I have asked her several times to write about her experiences but she hasnt really sat down to do it. She doesnt tell anyone about her ITP and really prefers to keep things as normal as possible. When her friends ask why she has so many drs appointments, she just tells them she is on a medicine and has to get her blood checked. Sounds a bit like you Sandi, where you just keep things to yourself at work.

Yeah, that is like me. I never really feel the need to talk about it because I like to keep things normal too.