Update, Tessa

[Tessa]

Hello, my dear friends. Queridos amigos

I am so sorry not having been around for so long, but you cannot imagine the hard work I´ve had...

How are you? Hope you are feeling healthy. I missed you a lot. Have been thinking on you...

I´ve started a non-profit making association, with a new website, forum, digital informative newsletter for members and for the medical staff, etc. Preparing the rules, the content of the website, registering the association...
It has been (and is) a hard work, but people are being helped and that´s the most important thing of it.

(All this of course, while also working, writing, and doing a lot at home... Whenever my health allows me)...

It has been created not only for Spain, but for all the Spanish speaking world. Open to residents all over the world with Addison disease or other Endocrine Disorders and Diseases, patients, relatives, friends, as well as for medical staff.
Without forgetting owners of pets with any of these diseases...

It is amazing to see how many people need help and use our e-mail or forum to ask for it...
The association is called: Asociación de Addison y Otras Enfermedades Endocrinas - Adisen
You can visit our website by clicking on our name:Adisen
(Addison Association and Other Endocrine Diseases - Adisen)
I am also preparing our 1st General Meeting for October...

Furthermore, I have another website with plenty of information called Addison.es

With regard to my own health (thank you for asking Tex/Wayne)
I posponed my eye surgery Too scared about it.
Then I had a visit to a private specialist who confirmed that I should have it operated but with a conjunctival autograft.

I have an app. on Thursday with the specialist of my medical insurance to talk about the surgery and to exchange information... I am still scared, but my vision is more important than my feelings. I know I have to do it soon or later the ptergium will grow and... I do now want to wait too much.

I know that I am hypersensitive and allergic to some drugs and... Since we have not talked, I have added more allergies to my CV (many fruits)... Plus being corticodependent, etc.
But, I will have a long talk with the specialist. I want to be sure that everything will be ok.

I am looking forward to hearing from you.

Love,
Tessa

[tex]

Hi Tessa,

You really have been busy. I knew that you were doing a lot of work to help people with Addison's and other endocrine diseases, and you appear to be making a lot of progress with that work.

That was probably a good idea to postpone the eye surgery, until you could discuss it with another specialist. I'm glad that you will be able to discuss the details with a private specialist, so that, hopefully, allowances can be made for all your other health issues, during the surgery.

Good luck with the progress of the association, and your support board, and I hope that your eye surgery turns out perfectly.

And thank you for the update.

Love,
Wayne

[Mars]

TESSA!!!!! I'm so glad to see you posting - it's been awhile but now I see why!

I also am involved with a non-profit (mine is in housing development) but I can appreciate all the hard work you are doing. Writing rules, procedures, dealing with a multi-faceted board of directors and budgets...........sigh.............well............enough said LOL.

Take care of yourself and keep us updated on your surgery.

Love and many hugs to you my friend,
Mars

[mbeezie]

Tessa,

I couldn't help but notice the similarity in symptoms that we have, including POTS, numerous allergies to foods and drugs/anaphylaxis. Do you have an anaphylactic or mast cell disorder?

Mary Beth

[tex]

Mary Beth,

I suspect that Tessa does have a mast cell disorder, (because she does have problems with anaphylaxis), however, it would probably be extremely difficult to get a diagnosis for that, in Spain.

I didn't know that you had POTS.

Tex

[mbeezie]

Actually there is a mast cell specialist in Toledo, Spain . . . Dr. Luis Escribano. He is involved in The Mastocytosis Society.


Mary Beth

[tex]

From what I understand, the biggest problem is that it is extremely difficult to get so see the right specialist, there. With the information you've provided, maybe Tessa will be able to find a way to get to see him.

Thanks,
Tex

[mbeezie]

Big problem here too - my appointment at Brigham and Women's isn't until December!!!

Tessa, I thought it might be wise for you to check out info on surgery and mast cell disorder/anaphylaxis as meds can be a problem. The pre-surgical protocol is written on The Mastocytosis Society website at www.tmsforacure.org

Mary Beth

[Polly]

Tessa, mi querida amiga!

SOOOO good to hear from you. Congrats on all of the great work you are doing to help people.

Since you were last here, there has been new information made available about another type of MC, called mastocytosis or mastocytic enterolitis.............. it does sound as if some of your symptoms could have been due to this diagnosis. It is best diagnosed by a special stain that is done at the time of colon biopsy. It isn't picked up by the usual stain done during biopsy. Mary Beth (above) knows a lot about this - check out the search feature on the board here. (Of course, Tex knows a lot, too).

Hope you and Gabriel are doing well. I think of you often.

Love,

Polly

[MaggieRedwings]

HI Tessa,

So happy to see you posting and do realize that the workload you have taken on prevents you posting all of the time. Happy to hear that you postponed the eye surgery until you get another opinion.

Thanks for all of the work you are doing to help people who are afflicted with the problem.


Good luck on your doctor's appointment.

Love, Maggie

[Tessa]

Hi my dear friends,

I am so happy to read your comments. I always feel welcome when I visit the board. You are there for all, even when it takes so long for us to post…

Wayne, I talked with a private specialist about the surgery and got all the information. He recommended not having surgery without the conjunctival autograft, but I had to leave as the surgery (private) was too expensive. With the information I have, I asked for an app. With a specialist from my own medical insurance (the State one). I have been very lucky. I´ve found an excellent doctor who is willing to carry out the surgery using this special technique. She was going on holiday the following day but after seeing my eyes, she said that they really needed the surgery. She started all the procedures (which is not usual here as it has to follow a different way) and confirmed a date for the surgery (August the 27th). I am very happy about it. (though still worried because of all my drug allergies, etc.). She has told me that I will have to meet with the anesthesiologist before in order to inform him of all my medical problems and allergies…

Mars, I am glad to read your post. Thank you for your support. Of course I will keep you updated.

The specialist has explained that she is planning to operate both eyes the same day because she prefers that the patient suffers the post-surgery all at once. She mentioned that – after the surgery - I will have to be about 20 days with discomfort and treatment. Not being able to use the computer nor work. I will have about 10 stitches in both eyes… I cannot imagine how I will feel. I have to assume that my body will feel it as a major stress. Don´t you think so? Therefore, I will have to increase my medication… I mentioned the surgery to my endocrine, but I am afraid that he did not comment about it…

Mary Beth. Thank you for your answer. The information that you have given sounds a possibility to me. As mentioned by Wayne, I have problems with anaphylaxis (unfortunately, the doctors that I went to do not want to admit it and asked me to avoid the drugs that triggered the reaction but without confirming the anaphylactic shock). A mast cell disorder? Who knows? Could be.

Thank you for the name of the specialist, Mary Beth. I will talk about it with my husband and we will investigate about the Disorder to see if I could have it.

Hi, Polly. Mi querida amiga, Polly. So long!
Thank you for your kind words. I miss you a lot too.
My husband sends you his warmest regards. Thank you for asking.
We will investigate about this new mastocytic enterolitis…
What about you? How are you? And your family?


Maggie, thank you for your post and support. It´s so nice to see that you still care for me.

I thank you all for understanding my work and forgiving me for not being able to post more.
Even though, I am always thinking of you, my dear potty people friends! I miss you all. You have been my first big support and my first real friends on the net!
Love,
Tessa