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1  General Mast Cell Disorders Discussion / Mast Cell Disorder Doctors / Re: How to get an appointment at the Center of Excellence for Masto in Boston: Dr. Akin and Dr. Castells
 on: 11/11/17 at 12:26:16 
Started by DeborahW, Founder | Post by Sunny  
Dr. Cem akin is now back in Michigan.  I have an appt. in December

2  General Mast Cell Disorders Discussion / Mast Cell Disorder Doctors / Re: Columbia, SC Allergist
 on: 07/04/17 at 06:47:46 
Started by CindyP | Post by Rick  
Hi Cindy - I was on Sprycel for about 4 months, 3 at 20mg and 1 at 40mg.
At 40mg some of my symptoms subsided but my tolerance of the drug decreased until I decided to quit. Once the drug was eliminated from my system I coasted for a couple months feeling better, but that wore off and I am back to where I was. My story is a long one, so I'll save the details for another time. I was pretty sure I had a mast cell disease for many years before being dx by Dr. Afrin. I found another Dr. by calling around, I wasn't specifically looking for a hematologist who treated MCAS but one who was interested enough to look at my case. I found Dr. Tanna and she contacted Dr Afrin. I have tried both Gleevec and Sprycel. Both help but my tolerance declines over time.

I contacted Dr. Afrin and he recommended a third drug Sunitinib, which is related to Sprycel so I will make an appointment with Dr. Tanna and give it a try. Also he told me about Tofacitinib which is a drug to treat Rheumatoid arthritis.

Best wishes,


3  Blogs / Blogs / Re: redbird's blog and stories
 on: 06/04/17 at 05:26:16 
Started by DeborahW, Founder | Post by redbird  
A new medical journal out with a report that CHOCOLATE CAN PREVENT HEART ATTACKS…now I did not read any further about moderation or amounts or how often I just let the headline make me feel good.

Now you have read about …I am a coffee drinker...now here in our town we do not have a starbucks...we barely have a red light..but I still manage to deal with my coffee drinking..I don’t have one of those fancy one cup things nor do I want one..this week I decide to be a “FOLGERS BLACK SILK” drinker… my coffee container was down really low..and have you noticed that the size of those things have gotten smaller as the price has gotten higher…those folks know that we drinkers will pay the price and we do…home and made that first cup…hum yumm and darn it just was good.

Well lots of stuff going on at my house and the farm…
First I will tell you that our fridge…you know the one daughter bought for us a little over two years ago..you know the one that was POSSESSED…we were sure of that with all the strange sounds it made …we were so use to the sounds that we forget to notice however visitors made comments in regard to them and we just nodded and said..it’s possessed…we just said it is the spirits…
So one day last week the fridge started acting sick…yes sometimes the top would freeze and the bottom would not cool and sometimes it was the other way around..son who has his cert of a/c refrigeration worked on it and it would improve for a day but the interesting thing is…IT STOPPED MAKING NOISE… yes it would run but no noise..we both commented on that as it sat silently   in it’s spot…BUT in a couple of days I heard this noise in the son’s bathroom..it sounded just like a smoke alarm…so I am in there searching everywhere for this noise…finally I mentioned it to son…oh mom he said..you will have to flush the commode for it to stop and I did and it stopped…has the spirit moved to the bathroom??...well on further examination son decided that it needed new insides…so he did and the noise stopped…where will it move next??
We still have the fridge problem… just so you know SEARS appliances are only guaranteed   for a year…unless you buy the expensive extended warranty…so son is thinking we have this old fridge in the garage…I have tried to think how old it is..and I am past 25 years..we had bought it for a replacement in the travel trailer when that one stopped running… we could use it as a replacement until he can look over the newer one…
So…son is out in the garage with the bleach stuff and scrubbing…now you have to think small..like in small… and would it run?  Well all cleaned up and plugged up that little fridge said (just like the little train…remember that) I think I can…I think I can…and it did and is…it is now sitting small in the big space in the kitchen and running like …it should..now stuff is pretty crowded and we will have to think more on stuff like…well this could go in the cabinet…BUT I am proud of this little brave fridge…son says it is not a fridge it is an ice box…just the next step up from the old ice block and drip pan…but I am grateful…got to get my important papers stuck on the outside…that’s where I keep things I need…
Son got into a fight….yup he did…with the vacuum cleaner and son lost..big time…he keeps the floors in the house clean, mopped etc and the vacuum sits in his bedroom..now he had used it as a door prop and coming from the bathroom in the wee hours of the morning…he forgot it was there and the vacuum landed a deadly punch to his foot…more than an ouch..it was a real blow… now I thought his foot was broken..he could not walk on it… so I loaned him my walker for getting around …he thinks it is just bruised bad…but it is better…round 1 vacuum..
The farm is getting more visitors …we now have 4 cottontail rabbits…one is a little little one…watched as the mom rabbit herded it around the yard…she would nudge him to turn etc…it was fun to watch…
And the roadrunner is back…now he likes to fly up to the top of the big bird enclosure and hide and he blends right in with all the branches on the top…waiting for a breakfast bird..so I took my  yard walking stick which is a old mop handle…and went out for a chat…he noticed me right away and raised up from his hiding place…I shook my stick and he got the message…breakfast bar is closed..

Well I am still doing …”Painting by Pencils”…and my Flower Mission Series is going out to people..if you need one please email me at  coloring@pldi.net

The word writer Cheesy

“getting old is not for wimps"

4  Blogs / Blogs / Re: redbird's blog and stories
 on: 05/20/17 at 03:33:16 
Started by DeborahW, Founder | Post by redbird  
So you are asking…did you get blown away with all the storms..in your area…NO but we did get winds like I have never seen in all the years that I have lived here..like in 40 yrs..and of course the rain and hail..rained so hard that you could not see my friend Mary’s house…across the pasture..morning brought light and viewing the farm…oh that is one of the big trees laying down in the yard…and that spot has limbs that are twisted and tore from the  oak tree and placed in the clothes line..humm…BUT THE FENCE REMAINED UP…HURRAH!!..the town about 25 miles away from us had winds up to 104…and we are just straight down the highway..so have not heard what arrived at our place..and of course we lost power..right at the start of my once a week TV show and I currently do not know if they escaped the fire …so later this week will have to check out the computer for looking..
Now my rain gauge in the front yard is showing 5 inches of rain but we are sure that more than that fell because at 5 it is full..but don’t worry..we sit up on a little rise and too we have a boat in the back yard…if we can just figure out how to plug the hole we should be good..aon has just informed me that the expected COLD FRONT has hit and the winds are now out of the north..that blanket you took off your bed..well back on

Well Ranger the warrior cat has been very very ill…for 3 or more days he would not eat and finally just a couple of bites…since this was before the storms..he slept in the yard…in the open so that you could certainly watch and check on him..he would not stay in the house…no amount of coaxing …if you got him in he would come in the back door and straight out the front door..finally one morning he was waiting for me to get up and as soon as I saw him I went to the door  to see if he would come in…and he did…as I was fixing his breakfast he sat in the kitchen in a new spot from his usual eating area..finally as I got his meal ready I put it down and he just looked at me…ok ranger here is your breakfast…and he looked at me and then down at the floor in front of him…several times before I got the hint…I WANT IT HERE…and I put it there and he ate…so we have moved his eating area per his request…and  he is almost back to eating..normal…I just happened to get him some of his favorite fried chicken from the deli..and boy I was a hero..so we are hoping for the best..BUT his new thing is…wherever he plops down for his nap…you do not disturb him..if you past his area too much..he will raise his head and scold you loudly or if you speak loudly..you get the same treatment…so as you can see…we are all walking in our sock feet and whispering or not talking at all..we have not gotten to the writing of ..passing notes but if need we can do that as well..

Well my coloring has entered a new phase …no longer am I doing adult coloring..I am now doing “Painting by Pencil” and I am now doing my “Flower Mission Series”….LOL LOL thought that would give you a good laugh..and heard about a lady that is sending out hand written notes  to breat cancer patients..I am going to email her and see if I could send flowers pictures and also want to see if my friend Mary would like to do this as well…as she loves to hand write letters …

well not much else going on here at the farm…so until next time please stay safe and well…

the word writer Cheesy

"getting old is not for wimps"

5  General Mast Cell Disorders Discussion / Mast Cell Disorder Doctors / Re: mast cell doctor around Atlanta
 on: 05/16/17 at 12:30:28 
Started by Rick | Post by Rick  
I did find a Dr who was willing to take me on as a patient. She consulted with Dr Afrin and prescribed Gleevec and then Sprycel. Unfortunately I eventually became intolerant of both drugs. Sprycel looked promising but after 4 month I could not tolerate it. I was allergic to it.

The Doctor is Dr. Saloni Tanna at Northeast Georgia Diagnostic Center in Gainesville, Ga. I found her to be very bright and willing to do the research to become familiar with mast cell disease.

6  General Mast Cell Disorders Discussion / Mast Cell Disorder Doctors / Re: Dr. Theodore Lee - Allergist in Atlanta Georgia
 on: 05/12/17 at 10:22:56 
Started by CindyP | Post by CindyP  
Dr. Lee gave me the dx of MCAS just based on clinical history.  All test results were normal.  He said it's a "mild form" of MCAS and only recommend I continue with the H1/H2 treatment.

That was very disappointing news to me.  I've been on this treatment for a year and not all of my ongoing symptoms are under control.  I was really hoping for him to offer further treatment.  It made me wonder just how severe the symptoms have to be before considering further treatment.

During the appointment, Dr. Lee mentioned the possibility of Cymbalta for the pain.  My GP was willing to prescribe it.  I've started a low dose and will gradually increase.

7  Blogs / Blogs / Re: redbird's blog and stories
 on: 05/11/17 at 04:18:15 
Started by DeborahW, Founder | Post by redbird  
today when I stood on my “OWN” front porch ….looking at my “OWN” front yard…I realized that I was no longer in control of the farm…now I thought it was ok for me to look after all I thought that it belonged to us…HOWEVER I was very wrong…
first thing I noticed was that the front yard had been taken over… it was now declared mocking bird territory..they even had a scout on look out on the electrical line crossing the front …and I stood there very still just doing my looking…I knew I was being watched..
now suddenly the scout flew down to the pecan tree that stood right in front of me..and he made several branches looking me over..but I stood my ground..after all it belonged to me…then suddenly the scout was gone..but I remained in my spot..and then right in front of me the mocking bird scout came at me with  a dive bomb approach….it made a couple of swoops and when I did not move it went back to it’s perch on the wire and suddenly it was calling …alert, alert …and would you believe it..a couple of other birds arrived on the wire ready to do battle if necessary..
I watched as a little squirrel also heard the alert and ran fast up the pine tree..well by this time I knew that it was time for me to return indoors…and I did…

Yesterday my friend Michelle who lives in CA who has woodsy stuff as well…had a little chat in regard as do “animals think”….now I am sure that we could go into a long long detailed science study here but it is not necessary…you see from my “watchin chair” I see lots of different birds..and other things..this morning I watched a mom cottontail rabbit chase her little little child around in the back yard…no it was not Bonnie however I think she sent a text to her sister lou lou telling her to come for a visit… lots of room to have fun and pretty safe..
Then I watch the birds decide who wants to eat seed or insects..how do they know..and another thing is ….how do they know who to make love to…is there a little voice whispering in their head saying…no no not this one…hummm
And the humming birds..we have their feeder bottles hanging just outside my window…and am noticing that we may have to put up a …traffic light as several have found our spot…wonder if they ever shop and realize how much sugar cost for making their feeding water…

And another thing..I watched “cranky crow” being totally put in his place by a lone mocking bird..now cranky crow was actually dodging as the bird made several attempts to put him out of the yard…now the crow never raised his wing at the bird…his mother must have taught him…not to hit a lady…as I am sure this mocking bird must have been…

And another thing…
Ranger the cat has now been missing for several days..I am thinking he has a government job…offering his services to all the female cats in our area…I am missing him and hoping for his safety…
Now I have realized that I am one lucky person…the animals and birds let me live here…

The word writer Cheesy

“getting old is not for wimps

8  Blogs / Blogs / Re: redbird's blog and stories
 on: 05/09/17 at 05:36:22 
Started by DeborahW, Founder | Post by redbird  
I was talking to my good friend Olive…I told her I was going on a trip or some would call it a journey…she kinda chuckled..and I said no really I am going on a search…for “THE GOLDEN YEARS”..I have heard of them all of forever and I watched the “GOLDEN GIRLS TV SHOW”…but they never mentioned how to find the GOLDEN YEARS…it has become very important to me to find them as I advance thru my final years…I have not seen them.  I am sure they are just around the corner…however I cannot get around THAT corner..now friend olive said…redbird I don’t think you are going on a trip and I said..well dear olive maybe in my imagination …so I looked to see if I had one of those little carry -on bags…stuffed it with clean underwear and I am ready to go..if someone will just give me the directions…I will borrow one of  those GPS thingys and take off…
I have worked lots of different jobs in my life…delivered newspapers…baby sat…and office clerk and construction clerk but currently I am working the hardest job I have ever had….getting old.  Who would have thought ..and see that is why I am looking for those GOLDEN YEARS…SURELY it would make things easier..you know I never thought about getting old until I became old..and I can tell you now you better get ready..it is worse than climbing mount something.
Another thing I am upset about is the THUNDER NBA BASKETBALL TEAM…those of us basketball fans here in Oklahoma have just finished a bad year…now I have these beautiful Thunder ball schedule from a couple of years or so ago posted on my fridge…nice lady from the big state paper Ms. Kelly sent them to me and they have held this place of honor since then..I mentioned to son that I might take them down and his reply was…you will never do it…and guess he is right…
Did you ever wonder who decided that we needed to read all writings “left to right”  instead of “right to left”…just a thought…
When I was a young girl around 11 or 12…yup I remember…see then you could walk down to main street in our little town to the “picture show”  now it is the theater…it was safe and if you were lucky your mom would give you a dime or quarter for the Saturday matinee…lots of times mom came up with that dime just to have a quiet afternoon and you would sit glued to your seat and watch the cowboys race across the screen or maybe a musical which was my favorite and lucky you…they would show the film twice…a real bargain for your dime
I recently read a study…that talking out loud to your self was good…it said to remember better if you said the words aloud you would be able to remember them better..so I am trying that out..
WELL…. I told you about the new move in the rabbit..and I named it Jack..like in Jackrabbit..well suddenly there was Jack with 2 little ones…so I changed the name to Jackie…then I had a brain alert.. Jack rabbits do not have cotton tails…it’s peter cottontail....so just   named it Bonnie..that should take care of that..AND we are having all kinds of creatures/birds at the farm…wonder if the fires and floods have sent them our way…couple of new birds have shown up…and I had to look them up in the old bird book…we have a “fox sparrow” and also a “brown thrasher”…and a couple of days ago the older redbird came right up to the window and looked in at me… the humming birds have arrived…we have four squirrels running around the farm like crazy and I must tell you about “cranky crow”  …wheeee he is something else…when he arrives he struts around letting everyone know this is his place…he caws and invites the other crows in for a snack and when they arrive he jumps up and down and shouts until they leave….it is a full time job just watchin ….

Guess that is about it form here for now…I am sure something will come up…I am watchin for the flying cars they say are ready now for use…and I will continue with my “flower mission” and have upgraded from adult coloring to…”painting with pencil”….
Hope you are safe and well…\

The word writer Cheesy

“getting old is not for wimps”

9  Blogs / Blogs / Re: redbird's blog and stories
 on: 04/18/17 at 07:11:55 
Started by DeborahW, Founder | Post by redbird  
So here we are…you and me and the world…what a mess…I don’t usually talk about politics…BUT I just cannot figure all of this out..a recent story in regard to some college…the students said they were so stressed out they could not study BECAUSE THERE WAS WEIGHTING SCALES IN SOME OF THE DORMS AND CLASSES …don’t remember the name but it was back east somewhere.  Son and I decided since stress was a big thing for me…we just tore of a sheet of toilet paper and placed it over the little window..works for us..
Just so you know I had my birthday last week  GOLLY GEE I AM 83..so am now on the road to 84..I have been certified as old…see just a few days ago I went to town with my shirt buttoned wrong…not a big deal you say…now for those of you who live in a large city and you may never see those people in the store again… it’s no big thing but for me who lives in just a small town..one red light and one grocery store the results is…did you see redbird..her shirt was all wrong she must be losing it…and that talk will continue for some time…so it is important where I live that you are all together when you go to the store… and hair combed and that no bra thing will just not work either..
Another thing
Son cooked my birthday lunch..we had fish and chips and daughter came with her new dog Kevin who is a loving person..really enjoyed the day…I bought myself a birthday present…FRESH STRAWBERRIES AND LITTLE DEBBIE OATMEAL COOKIES I had them the whole week..for breakfast and snack and just whenever..
Just a cooking note for you…I have cooked lots in my life but recently either saw a video clip or something about bacon..you know that thing we all love so much…BACON..ok so this told about BAKING BACON….now I watched this lady who of course did it perfect…so now I am thinking..my big oven is broken but I have one of those little ones that sit on the counter…I bake cakes in it and muffins and just anything that big one does…so thinking I got out my little pan and put a rack in it and put that bacon on it and popped it right into the oven..at 400..lady did not say that..I made that up…now I am watching carefully..as it cooked right along..now if you worry about popping you could lay a small sheet of foil on the top..I did…and finally it was done…beautiful..now folks I have cooked bacon in the skillet and micro but never again..I will do BAKING BACON…I just cannot tell you how great it is..
Another thing I learned is that I have been slicing ham the wrong way for years and years..see after you get it cooked lay it with the flat side down..and start slicing from the ends…and golly …that is all the cooking tips I have for you today.
I wish I could tell you that my vision is improving but not…left eye just barely there but the right is still good…so my coloring goes on and flowers going out to people everywhere..son went thru the house and cleaned and changed light bulbs in all the lights and that has helped some..my bathroom is so bright YOU would have to wear sunglasses …but will continue my coloring and have almost gone to “large print books” for reading
Another thing…
Mary my friend across the pasture has now finished “cancer treatments”  she got a grade of A and I fixed her a diploma ….it says…Mary  has kicked cancer’s ass…she is one brave lady…
The farm is in a terrible mess…we have new tenants…and there is just lots of fussing and …you cannot talk to my girlfriend …I saw her first..you get the idea..and we have a lone old cranky bossy crow who comes and sits in the yard and caws until you just want to …well you know…he tries to run off the others and he and the squirrels have had several stand-offs..I say he he is just a bossy old crow and son says I don’t understand…he is trying to lure a lady crow but I say who would want him..hope that gets settled soon..
One new tenant is a rabbit..son says he is a cotton tail but  I cannot see him well enough to know however I have named him Jack and he does not seem to be in a hurry to leave..will offer him a reduced rent..then we now have a or should say 3 roadrunners  a big one and a couple of smaller younger ones…now listen folks these are “tough hombres” anyone much less a bird that eats snakes..like rattlesnakes and bad lizards is not one to fool around with..you should read about them..from my watchin chair..I saw the papa one jump up on the bird bath and then to the top of the bird area and hid in the branches…and yes he caught something..I am trying to make myself believe that it was a mouse..but sadly I am not sure..we may have to have one of those “come to Jesus” talks… recently at the feed store to purchase bird seed son said there was a book by the register…how to attrach birds to your yard $12.95…well we have the answer that I will share for zero..zip dollars…it is W-A-T-E-R….we have several water dishes out and it brings birds more than you could want..
I wrote to my favorite author John Hart...as he has been very quiet..I reminded him that at 83 he needed to get moving on his next book..so that I would be around to read it..his answer was…Joyce I am writing a book…title will be The Hush….but not out until next  march..gosh that is a long time..maybe if he would stop all this running around signing books it would happen sooner..

We could talk a long time about mom nature and the weather..I have just decided to keep my thoughts to myself..as they are not nice and she seems to want us to know she is in control and will change her mind whenever..

The word writer Cheesy

Getting old is not for wimps

10  General Mast Cell Disorders Discussion / Mast Cell Disorder Doctors / Re: How to get an appointment at the Center of Excellence for Masto in Boston: Dr. Akin and Dr. Castells
 on: 03/15/17 at 09:02:29 
Started by DeborahW, Founder | Post by Sunny  
Dr. Cem Akin is returning to Michigan.  Was told that he would be here in February.