Let’s start a community!!

It occurred to me some time last week that it would be great if this blog was more than just me sharing my experiences, and you commenting back. If you would like to join a community of people with thyroid issues, let’s try this one:

http://thyroidinfo.ning.com/

Its a site I created on a whim: just to see if it takes flight. If not, I’ll take it down in a month or so, but it might be a great place for others to post their own pages/experiences/photos of living with Thyroid issues.

Of course I will continue to update this blog as well….we average 100 hits a day! I’m humbled to think that my story helps others

Fall 2009

Well, it has been just over a year since my TED surgery….and I can tell you that I am glad I had it done, and would recommend it to anyone. That is not to say that there are not drawbacks…I am STILL numb on both sides of my face. The left side is the most, with  numbness that stretches from my upper lip to my eyebrow….the nerves around my eye are still sensitive, and it’s almost impossible to put on eyeliner without extreme pain.

I have received some very touching e-mails, and I”m glad to know that this site is helping people facing TED surgery. I’m looking into putting this blog in a different, easier to navigate format soon….

Wanted to pass along a couple of quick pre-surgery tricks for my new friend, Sarah. These three natural extracts I believe helped keep me from bruising and sped up my recovery time considerably. My doctor was amazed, and asked for the list!!

Take arnica montana…..available at most health food homeopathic areas (Boiron makes it). Take it as directed a full week before  and after surgery to help with healing and bruising.

Bromalain (known as the papaya enzyme). This should be taken a week before as well, as well as during the healing process to help with inflammation. This should be taken on an empty stomach.

Monavie is also excellent to take 2 weeks before and after surgery because of it’s high antioxidant properties. I like it so much that I am a distributor: mymonavie.com/pdx

Summer 2009 Update

Well, it’s been almost a year now since my first OD surgery. Some have asked for a photo update, so here it is: You can see that the upper lids are a little on the droopy side, especially on my left eye….but that will be another chapter here some day

Thanks for the Feedback!!

I’ll be keeping this blog as is (although I may change up the style soon) and I’m happy to announce my newest venture: confessions of a mommy come lately!! You can read all about it, with updates here: http://mommycomelately.wordpress.com

Thanks again for everyone’s feedback!!

What Now?

I feel that I have at least partially exhausted most things thyroid for me. I’m considering starting a new blog for my day-to-day mommy-come-lately stories, but I put the question to you….would you rather I keep thyroidinfo the way it is, with mostly thyroid info and commentary…..or should I branch out from here to post more day to day thoughts?

Question of the Day….

If you could be genetically tested for a marker of a disease, say Alzheimer’s, would you have that genetic testing done?

Know Your History

If you have Thyroid Eye Disease, then you have had at least 2 autoimmune diseases: Grave’s Disease and Thyroid Eye Disease. It might be helpful to see if you have had any other autoimmune diseases in your past, just so you know how compromised your autoimmune system really is.

Here is a lost of some of the most common Autoimmune diseases:

1.ACTIVE CHRONIC HEPATITIS
2.ACUTE NECTROTIZING HEMORRHAGIC LEUKOENCEPHALITIS
3.ALLERGIC RHINITIS
4.ALOPECIA AREATA
5.ANKYLOSING SPONDOLYITIS
6.ANTI GBM OR TBM NEPHRITIS
7.ANTIPHOSPHOLIPID SYNDROME
8.ATOPIC ALLERGY
9.AUTOIMMUNE ADDISON’S DISEASE
10.AUTOIMMUNE APLASTIC ANEMIA
11.AUTOIMMUNE ATHEROSCLEROSIS
12.AUTOIMMUNE ATROPHIC GASTRITIS
13.AUTOIMMUNE ACHLORHYDRA
14.AUTOIMMUNE DIABETES INSIPIDUS
15.AUTOIMMUNE ENDOMETRIOSIS
16.AUTOIMMUNE DYSAUTONOMIA
17.AUTOIMMUNE ENCEPHALOMYELITIS (EAE)
18.AUTOIMMUNE HEMOLYTIC ANEMIA
19.AUTOIMMUNE HEMOPHILIA
20.AUTOIMMUNE HEPATITIS
21.AUTOIMMUNE HYPERLIPIDEMIA
22.AUTOIMMUNE IMMUNODEFICIENCY
23.AUTOIMMUNE INNER EAR DISEASE (AIED)
24.AUTOIMMUNE INTERSTITIAL CYSTITIS
25.AUTOIMMUNE LYMPHOPROLIFERATIVE SYNDROME (ALPS)
26.AUTOIMMUNE MUCOCUTANEOUS BLISTERING DISEASE
27.AUTOIMMUNE MYELOPATHY
28.AUTOIMMUNE MYOCARDITIS
29.AUTOIMMUNE NEUTROPENIA
30.AUTOIMMUNE OOPHORITIS
31.AUTOIMMUNE ORCHITIS
32.AUTOIMMUNE PROGESTERONE DERMATITIS
33.AUTOIMMUNE PROSTATITIS
34.AUTOIMMUNE URTICARIA
35.AXCHAL AND NEURONAL NEUROPATHIES
36.BALO DISEASE
37.BEHCET’S DISEASE
38.BELLOW’S PEMPHIGOID
39.BERGER’S DISEASE (IgA NEPHROPATHY)
40.CARDIOMYOPATHY
41.CELIAC SPRUE
42.CENTRAL NERVOUS SYSTEM VASCULITIS
43.CHRONIC FATIGUE IMMUNODEFICIENCY SYNDROME (CFIDS)
44.CHURG STRAUSS SYNDROME
45.CICATRICIAL PEMPHIGOID
46.COGAN’S SYNDROME
47.COLD AGGLUTININ DISEASE
48.CREST SYNDROME
49.CROHN’S DISEASE
50.CRYOGLOBULINEMIA
51.CUSHING’S SYNDROME
52.DEGO’S DISEASE
53.DERMATITIS
54.DERMATOMYOSITIS
55.DEVIC DISEASE
56.DRESSLER’S SYNDROME
57.DISCOID LUPUS
58.EOSINOPHILIC FASCIITIS
59.EPIDERMOLYSIS BULLOSA ACQUISITA
60.ERYTHMATOSIS
61.ESSENTIAL MIXED CRYOGLOBULINEMIA
62.EVAN’S SYNDROME
63.FIBROMYALGIA
64.FIBROMYOSITIS
65.FIBROSING ALVEOLITIS
66.GLOMERULONEPHRITIS
67.GOOD PASTURE’S SYNDROME
68.GRAFT VERSUS HOST DISEASE
69.GRAVE’S DISEASE
70.GUILLAIN –BARRE
71. HASHIMOTO’S ENCEPHALOPATHY
72.HASHIMOTO’S THYROIDITIS
73.HENOCH-SCHONLEIN PURPURA
74.HERPES GESTATIONIS
75.IDIOPATHIC ADRENAL ATROPHY
76.IDIOPATHIC PULMONARY FIBROSIS
77.IDIOPATHIC THROMBOCYTOPENIA PURPURA
78.IgA MEDIATED DISEASES
79.IgA NEUROPATHY
80.INCLUSION BODY MYOSITIS
81.INFLAMMATORY DEMYLINATING POLYNEUROPATHY
82.INFLAMMATORY DEMYLINATING POLYRADICULONEUROPATHY
83.INSULIN DEPENDENT DIABETES (TYPE 1)
84.JUVENILE ARTHRITIS
85.KAWASAKI’S DISEASE
86.LAMBERT EATON SYNDROME (LEMS)
87.LEUKOCYTOCLASTIC VASCULITIS
88.LICHEN PLANUS
89.LINEAR IgA DISEASE
90.LINEAR MORPHEA
91.LYMPHOCYTIC HYPOPHYSITIS
92.LUPOID HEPATITIS
93.LYMPHOPENIA (SOME CASES)
94.MENIERES DISEASE
95.MICROSCOPIC POLYANGITIS
96.MILLER FISHER SYNDROME
97.MIXED CONNECTIVE TISSUE DISEASE
98.MULTICENTRIC RHETICULONODULAR HISTIOCYTOSIS
99.MULTIPLE MYELOMA
100.MULTIPLE SCLEROSIS
101. MYASTHENIA GRAVIS
102.NEUROMYOTONIA (ISAAC’S SYNDROME)
103. OCULAR CICATRICIAL PEMPHIGOID
104. PALINDROMIC RHEUMATISM
105.PANDAS (PEDIATRIC AUTOIMMUNE NEUROPSCHYCHIATRY DISORDER)
106.PARANEOPLASTIC AUTOIMMUNE SYNDROME
107.PARANEOPLASTIC PEMPHIGUS
108.PARS PLANITIS
109.PARSONNAGE-TURNER SYNDROME
110.PEMPHIGOID
111.PEMPHIGUS VULGARIS
112.PERIVENOUS ENCEPHALOMYELITIS
113.PERNICIOUS ANEMIA
114.PHACOGENIC UVEITIS
115.POLYARTERITIS NODOSA
116.POLYCHONDRITIS
117. POLYENDOCRINE DEFICIENCY SYNDROME
118.POLYGLANDULAR SYNDROME
119.POLYMYALGIA RHEUMATICA
120.POLYMYOSITIS
121.PRIMARY AGAMMAGLOBULINEMIA
122.PRIMARY BILIARY CIRRHOIS
123.PRIMARY SCLEROSING Cholangitis
124.PSORIASIS
125.PURE RED CELL APLASIA
126.RAYNAUD’S PHENOMENON
127.REITER’S SYNDROME
128.RELAPSING POLYCHONDRITIS
129.RHEUMATIC FEVER
130.RHEUMATOID ARTHRITIS
131.SARCOIDOSIS
132.SCHMIDT’S SYNDROME
133.SCLERITIS
134.SCLERODERMA
135.SJOGREN’S SYNDROME
136.SPERM AND TESTICULAR AUTOIMMUNITY
137.STIFF PERSON SYNDROME
138.SYDENHAM CHOREA
139.SYMPATHETIC OPHTHALMIA
140.SYSTEMIC LUPUS ERYTHEMATOSUS (ORGAN THREATENING OR NON ORGAN THREATENING) –SLE
141.SYSTEMIC SCLEROSIS
142. TAKAYASU’S ARTERITIS
143.TEMPORAL ARTERITIS/GIANT CELL ARTERITIS
144.THYROTOXICOSIS
145.TYPE B INSULIN RESISTANCE
146.ULCERATIVE COLITIS
147.UNDIFFERENTIATED MIXED CONNECTIVE TISSUE DISEASE (UCTD)
148.UVEITIS
149.VASCULITIS
150.VITILGO
151.WEGENER’S GRANULOMATOSIS
152.WISKOTT-ALDRICH SYNDROME

Going by this list, I have had Rhuematic Fever, Vitiligo, Nutropenia, Ulcerative Colitis, Grave’s Disease, and Thyroid Eye Disease…..This isn’t even counting Cervical Cancer, Hives and Allergies which some speculate might be a result of autoimmune disorders.

So, it seems that somewhere along the way, my autoimmune system was compromised. I believe it happened in utero with me, as I was contracted Scarlet Fever when I was an infant. I could also speculate that growing up in a house with a chain smoker and two sets of grandparent caregivers who smoked constantly might have helped contribute to the exacerbation of some of my health issues. I was always sick, and got pnuemonia at least once each winter/spring for as long as I can remember…..photos of me at Christmas and Easter seem to always show a rough red nose, and I remember that I always seemed to catch a viruses a little easier and much more intensely than most.

But, if you have a thyroid disorder, you should carefully go over your medical history and see if you can see a history of autoimmune diseases.

What are the odds?

A blog reader expressed a fear of going blind due to the TED surgery. This person was told that the odds were 1000 to 1 that this would happen, but it still was a concern to them.

To those of you concerned about the odds of going blind, I ask you to really consider the odds and put them in perspective. This represents a .001% chance. Here are some other odds, to help put this in perspective:

Odds of being killed sometime in the next year in any sort of transportation accident: 77 to 1

Odds of being killed in any sort of non-transportation accident: 69 to 1

Odds of being murdered: 18,000 to 1

Odds of getting away with murder: 2 to 1

Odds of being the victim of serious crime in your lifetime: 20 to 1

Odds that a first marriage will survive without separation or divorce for 15 years: 1.3 to 1

Odds that a celebrity marriage will last a lifetime: 3 to 1

Odds of getting hemorrhoids: 25 to 1

Odds of being born a twin in North America: 90 to 1

Odds of being on plane with a drunken pilot: 117 to 1

Odds of being audited by the IRS: 175 to 1

Odds of having your identity stolen: 200 to 1

Odds of dating a millionaire: 215 to 1

Odds of writing a New York Times best seller: 220 to 1

Odds of finding out your child is a genius: 250 to 1

Odds of catching a ball at a major league ballgame: 563 to 1

Odds of finding a four-leaf clover on first try: 10,000 to 1

Chance of an American home having at least one container of ice cream in the freezer: 9 in 10.

Chance of dying from any kind of injury during the next year: 1 in 1,820

Chance of having a stroke: 1 in 6

Chance of dying from heart disease: 1 in 3

Chance of getting arthritis: 1 in 7

Chance of suffering from asthma or allergy diseases: 1 in 6

Chance of getting the flu this year: 1 in 10

Chance of an American woman developing cancer in her lifetime: 1 in 3

Chance of getting prostate cancer: 1 in 6

Chance of getting breast cancer: 1 in 9

So, you see, your odds are better that you will write a New York Times best seller than going blind as the result of TED surgery!

December 2008

January 2009

Wow! Where did the year go? I’ve been so busy with Christmas and snowstorms and kids and life that I’ve neglected this site. Thanks to everyone who has emailed me and commented here. The hits just keep coming, and I’m glad to know that my little musings here are helping some of you.

Update on me…I am STILL having issues with numbness…especially on the left side. Even the right side seems to have a little more numbness lately, but not as bad as the right. I still have problems drinking hot liquids (they feel like they burn through the roof of my mouth into the back of my eye)

Last week I had a severe bout with double vision. I was out of town, and away from any eye moisturiser, and it lasted at least 12 hours. I couldn’t drive, I could barely WALK! I was nauseous the whole time, and reading anything was out of the question, unless I closed one eye. I called my ocular surgeon first thing Monday morning, and the triage nurse’s reaction was “Oh…huh? Well, call us if it happens again…that’s kind of strange.” She said that most people who have double vision have it forever, and it ususally doesn’t revert back to normal.

I also told her that my tear ducts seemed to hurt whenever my eyes watered. Didn’t seem to matter if it was from watching a sad movie or cutting onions, the first tear out of my right tear duct really hurts. She had no explanation for that either, and stated that she’d never heard that ailment mentioned before.

So, am I oversensitive, or just a freak? LOL!

I’m posting a photo taken on Christmas with very little make-up.