check in,cerebritis update

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Raven1954
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 9/23/2009 5:05 AM (GMT -7)   
I am very new to this forum, so wanted to check in let you all know that I really want to participate.Computer dummy,so please bear with.cerebritis improving-slurred speech gone and balance better.Saw my Ent yesterday, and after 2 surgeries in last 5 months,which were pretty scary with all that has been going on, bet just overwhelming fungal and bacterial infections.Got a great review, and now can get my IV cytoxan,which I am almost 2 treatments late for,and probably cause of present cerebritis,and general sle flare. Was so happy went and overdid on way home from appt.paying today,but was worth it,and will rest juice and elevate swollen legs today. my oldest son is just home from college after completing his Masters. He understands chronic illness-born 3months early,cerebral palsy,seizure disorder,very mild autitistic reactions.so you can imagine how proud I am of him,He is now going on to law school, after a much needed break.He said yesterday, mom google the spoon theory,I said just tell me,he said you need to read it,so I did,laughed,cried,and for the first time had a concrete way to think about myself, but gave me a concrete way to think about others.Probably the most valuable medicine I've ever had. Only about 10 min. of reading,and now a lifetime of understanding myself,and others.God Bless,Namaste Raven1954.
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, joining this has been a big step.Husband and son wonderful,but can't step inside,you guys are there.


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/23/2009 5:21 PM (GMT -7)   
Hey there! i am glad you can finally get back on your treatment of Cytoxan!  I have to tell you, I am so happy that your son understand Chronic Illnesses. It is great that he is looking things up and trying to get a full grasp on it. I know he has to be very supportive and that is a huge thing for people who have AI diseases.
 
Yes, the spoon theory is amazing. I have shared it with many of my friends so hopefully they will understand why I can't physically go out with them much anymore. Some understand and some don't but I guess you can't expect everyone to realize what it is like. I can't remember if I welcomed you to HW in a previous post but if I haven't WELCOME! tongue This is a great online family and so very supportive! I look forward to getting to know you better!!!

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide,  Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


Raven1954
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 9/25/2009 5:16 AM (GMT -7)   
Thank you for the welcome. Hope you are doing well today.(i've learned to go one day at a time). God Bless,Namaste Raven1954
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, joining this has been a big step.Husband and son wonderful,but can't step inside,you guys are there.

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