Well it has been awhile since I have talked on the forum. I have just been totally exhausted with being sick with no quality of life to speak of.
After pushing my GI - she sent me to an Immunologist - I really like her. After a lot of blood tests and 3 -24HR Urine Collection. I'm happy to have a diagnosis but I still have all of the other conditions going on (which hopefully will get better). I found out a month ago and am on in addition to my regular meds:
Zantac - 2x day
Claritin - 2x day
Flonase - 1x day
QVAR Inhaler 1x day
Singular - 1x day
Pro Air - as needed
Some of these may need to be changed as I am not improving at all yet. In all honestly, I have been extremely overwhelmed at the amount of foods, etc that I may be reacting to. I'm keeping a food journal and continuing my daily journal of how I feel etc. I'm extremely stressed out so my Dr wants me to take a Klonipin daily to keep my stress down as I know this is a known Trigger for me. I thought I was overwhelmed with Crohn's/LC - but the Mast Cell has sent me to a realm that I never knew existed.
The amount of items including hot/cold and histamine rich/histamine releasors. It could even be my soft/bed - the amount of items are overwhelming. My GI spent 45 minutes with me making a plan - step by step - day by day. I am starting to see Triggers which I had thought was just the GI problems - this does make me a little happier - she says a minimum of 6 months to figure some of this out. Just the amount of items are crazy.
I had my worse experience last night - my granddaughter said "you are turning red" at 8:30 last night. Today I woke up at 6am severely sick for 50 minutes in the bathroom and could not get out of bed until 2pm. I'm severely fatigued just as a normal process of my diseases before.
I bought 2 books to try and understand what happens (especially explaining this to others - way above our heads). I'm feeling more informed now so I hope I can bring my stress level under control.
I have not had the Bone Marrow Test yet - it terrifies me. I'm just going to try and learn and keep positive and watch Comedies. I hope to be able to give Yoga a go again on YouTube if I can get some improvement on the fatigue.
If anyone has any suggestions - I'm all ears!! :ywow:
After pushing my GI - she sent me to an Immunologist - I really like her. After a lot of blood tests and 3 -24HR Urine Collection. I'm happy to have a diagnosis but I still have all of the other conditions going on (which hopefully will get better). I found out a month ago and am on in addition to my regular meds:
Zantac - 2x day
Claritin - 2x day
Flonase - 1x day
QVAR Inhaler 1x day
Singular - 1x day
Pro Air - as needed
Some of these may need to be changed as I am not improving at all yet. In all honestly, I have been extremely overwhelmed at the amount of foods, etc that I may be reacting to. I'm keeping a food journal and continuing my daily journal of how I feel etc. I'm extremely stressed out so my Dr wants me to take a Klonipin daily to keep my stress down as I know this is a known Trigger for me. I thought I was overwhelmed with Crohn's/LC - but the Mast Cell has sent me to a realm that I never knew existed.
The amount of items including hot/cold and histamine rich/histamine releasors. It could even be my soft/bed - the amount of items are overwhelming. My GI spent 45 minutes with me making a plan - step by step - day by day. I am starting to see Triggers which I had thought was just the GI problems - this does make me a little happier - she says a minimum of 6 months to figure some of this out. Just the amount of items are crazy.
I had my worse experience last night - my granddaughter said "you are turning red" at 8:30 last night. Today I woke up at 6am severely sick for 50 minutes in the bathroom and could not get out of bed until 2pm. I'm severely fatigued just as a normal process of my diseases before.
I bought 2 books to try and understand what happens (especially explaining this to others - way above our heads). I'm feeling more informed now so I hope I can bring my stress level under control.
I have not had the Bone Marrow Test yet - it terrifies me. I'm just going to try and learn and keep positive and watch Comedies. I hope to be able to give Yoga a go again on YouTube if I can get some improvement on the fatigue.
If anyone has any suggestions - I'm all ears!! :ywow: