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Unique1
New Member


Date Joined Jan 2010
Total Posts : 10
   Posted 4/17/2010 9:36 PM (GMT -7)   
Good Evening! Although I have been here for a few weeks and posted a few replies, I have not officially introduced myself. I have been diagnosed with Fibromyalgia, Severe Degenerative Disc Disease, and Depression just to name the bad ones of the bunch. I have managed to survive Thyroid Papillary Cancer, open heart surgery to repair an aneurysm and the latest was a Diaphragmatic Hernia Surgery.

Additionally, I have been diagnosed with Loeys Dietz Syndrome which is a Connective Tissue Disorder and an Aneurysm Syndrome. I have 2 of my 3 children that have been diagnosed with the same syndrome also. We have all been through open heart surgery to repair our aorta aneurysm and we are very susceptible to having other aneurysms throughout our body at any given time.

My fibromyalgia was mild to start with, but I believe after this last surgery (1 month ago), my symptoms have increased. I guess the stress of this last surgery got the best of me. I had the hernia surgery laproscopic but 3 days later was back in the OR for emergency surgery to repair it again. Due to Loeys Dietz (www.loeysdietz.org), I have very elastic skin and when they sewed the mesh in to cover the hole in my diaphragm, it did not hold. Needless to say, my nerves got the best of me. My DDD really tears me up. Every night my neck hurts so bad. It really gets old.

I am currently on Savella for Fibromyalgia, which at first worked well but now it is not helping at all. I am on Lexapro and Wellbutrin for Depression and Avapro for my heart and Synthroid for Thyroid. I was taking 2 Vicoden 7.5/750 in the evening to help me sleep and take a little of the pain away. Since I have been on this for so long, it no longer works. After surgery, the doctor put me on Percocet for the pain and this has helped also, but I fear that my body will get used to that also and then I will really be in trouble.

Well, enough for now. I do have some questions for you all, but that will have to be in another message. I am really getting uncomfortable sitting here typing. I pray that you all have pain free days. Think positive! Be strong!
Unique1

Unique1

Diagnosis: Severe DDD (cervical), Fibromyalgia, Loeys Dietz Syndrome (Connective Tissue Disorder/Aneurysm Syndrome), Osteoarthritis, Depression

Surgeries: 3 foot/ankle surgeries, Tubal Ligation, Incisional Hernia Repair, Hysterectomy, Thyroidectomy (Papillary Thyroid Cancer), Appendectomy, open heart surgery to repair aneurysm of the aorta, Diaphragmatice Hernia Surgery

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40595
   Posted 4/18/2010 5:37 AM (GMT -7)   
Hi Unique,

It sounds like you have so much on your plate right now. Not with just yourself, but with your children too. Know that we are all here for you and truly care about you. I hope that things slow down to a smoothe sail for you. Keep us posted.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 4/18/2010 7:41 AM (GMT -7)   
Unique,
You ARE strong - obviously. You are an inspiration to me.
I find that it's a lot harder to deal with my kids having pain than myself. You have so much on your plate. As Karen said, please do keep coming here for support. It's done me a world of good to talk to people who understand, not just in an intellectual way, but are there too, more or less. I hope the Percocet keeps working for you.
Debbie
 
  Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes (why?), keloid scar tissue (from burn) on back, arthritis, scoliosis, lumbar disc damage, IBS, migraine
  Meds: Nortriptyline, Clonazepam, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
  Chiropractic adjustments


damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 4/18/2010 8:11 AM (GMT -7)   
Hi Unique1, I am glad to meet you. I think you will like it here, there are some very wonderful people who know what we are going through. I am pretty new to this site and I love it here. When I get a new or different symptom this is the first place I go. I have learned so much from my new friends here. I hope you stay with us!
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Percocet for bt/pain, Flexeril as needed, Lopressor, Lexapro, Famotidine, and Promethazine as needed for nausea from migraines


Unique1
New Member


Date Joined Jan 2010
Total Posts : 10
   Posted 4/19/2010 10:07 PM (GMT -7)   
Thank you so much everyone. Since I have joined in Jan 2010, I have really enjoyed reading all the support everyone has given on this site. I know that I could not have gotten through my children's surgeries without the Loeys Dietz site and all the wonderful staff at Stanford Medical Center.

As for the issues with my children....well actually not children now since my son is 21 and my daughter is 18, I really think that I got through all of that just like any other "Mother" would have. That is when you have to try to hold your feelings in and be so very strong for your children. When both of them came out of surgery and had a breathing tube in their mouth and they were gagging, of course I was terrified but that is when you gain that strength that you prayed for. Everybody can do it, just don't sell yourself short.

As for Fibro.....well I have my good days and bad, just like all of us. I am trying so very hard to stay positive. What has really helped me is when I went to a therapist and he thought me Witness Thought Transformation. This has to do with that little voice inside your head telling you different things. I used to, in my mind, think up these scenarios that didn't even exist and that would produce more anxiety. That voice in your head that tells you different things is not really yourself. If you acknowledge those voices, the voice will go away. Then you are living in the present. I am, in no way, pushing anything on anyone, just telling you all what has helped me. I live in the present now. Not, thinking up scenarios of what the doctor will tell me next and stressing over it. Each day is a new day and like Tim McGraw says, "Live like you were dying". If you are having the worse day imaginable, then maybe while you are laying on the couch or in bed, play a board game with the kids. Those memories last a lifetime.

Love and Gentle Hugs to all
Unique1

Unique1

Diagnosis: Severe DDD (cervical), Fibromyalgia, Loeys Dietz Syndrome (Connective Tissue Disorder/Aneurysm Syndrome), Osteoarthritis, Depression

Surgeries: 3 foot/ankle surgeries, Tubal Ligation, Incisional Hernia Repair, Hysterectomy, Thyroidectomy (Papillary Thyroid Cancer), Appendectomy, open heart surgery to repair aneurysm of the aorta, Diaphragmatice Hernia Surgery

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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