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Surgery set for October 11: On my way

Started by Carolina, September 12, 2016, 11:25:54 AM

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Carolina

Dearest Sjogren's Angels,

Surgery is tentatively set for October 11.  Of course, that may change.  Just ONE more month on my back before I start on recovery and find out if the surgery stops the pain in the long run.

So many variables, so many uncertainties, like all of life.

But this is a relief to be moving forward, no matter how uncertainly.

My older son will be visiting from Paris at that time, so that will be 'nice'.  For me, any way.

Hugs,  Elaine
Female-Elaine,83-CVID-pSJS-WMD (Eylea)-COPD-Inter. Cys-PN-CAD-Osteoarth-SFN-Erythromelalgia-SIBO-PMR-Adrenal Insufficiency-Hearing Loss-Achalasia-Bacteriurea-Power Chair-IVIG Gamunex 50 gm-Medrol-Wellbutrin-Buspar-Gabapentin-Atenolol-Salagen-LDN-Lipitor-Premarin-Nexium-Om.3-Repatha-KLOR-CON-Maxide

Joe S.

bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

aussie mum

Dear Elaine,

I haven't been on the site for a while, so I just saw that you needed surgery.
Wishing you all the best for the operation and a quick and stress free recovery.

Sending many positive vibes from Oz.

Aussie Mum
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

Kathy57

Elaine,

I hope the outcome of all of this is good for you.  So sorry for your pain and immobility!  I can't imagine how tired you must be from all of this.

You have such a great attitude considering everything you have been through.  Thinking about you and praying for you.

Kathy
66 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations, Chronic Bronchitis, Asthma, albuterol, Breztri,  Osteoporosis,

anita

I feel confident the doctors know what's best, and that this is the best decision for you.  You have always trusted your doctors before (you have a great team) so look at this as a new beginning for you with less pain and more mobility.  You have a great attitude, so will likely bounce back much faster than you think.  Just take it one day at a time.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

warmwaters

Hope all will go well and that you'll get some relief.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Jenny

Good luck Elaine. I hope it relieves your pain. In the meantime, try to get out of bed some if possible. Otherwise your muscles will atrophy and your recovery will be more difficult. Maybe there are some light bed exercises you can do too.
65 year old female with back, shoulder, neck and knee pain, dry mouth, losing teeth, dry sinuses,Blood test positive for Sjogrens. Fibromyalgia, Osteoarthritis .
Maloxicam, Lisinopril, Norco, misc.vitamins
4 discs in low back fused. Shoulder replaced 2015 & 2017 Need knee replaced.
4 hand surgeries

Carolina

Thanks so much for the encouragement.

Jenny, I see again that you've had a shoulder replacement......so you've really had surgery! 

My legs are severely atrophied, but I do get out of bed and walk around with my walker wearing my leg braces.  I can be upright for about 3-5 minutes before the pain drives me back to my back.

I know I could be OK in the pool, but getting there would require walking and getting ready for the pool. I think I'll ask my husband to take me on Wednesday, just as a trial.

I am discovering and watching some fabulous TV series (Amazon and Netflix), reading, listening to the radio, and generally OK.

I just find the clutter, the confusion and lack of control to be my biggest frustration.  That shows you that I'm doing rather well if that's the hardest part!

I've been pretty immobilized since my profound PN developed, and I haven't been able to drive since July 10, so I'm very dependent.

But all is well, and as it should be!  Control is truly an illusion.

Hugs,  Elaine

Female-Elaine,83-CVID-pSJS-WMD (Eylea)-COPD-Inter. Cys-PN-CAD-Osteoarth-SFN-Erythromelalgia-SIBO-PMR-Adrenal Insufficiency-Hearing Loss-Achalasia-Bacteriurea-Power Chair-IVIG Gamunex 50 gm-Medrol-Wellbutrin-Buspar-Gabapentin-Atenolol-Salagen-LDN-Lipitor-Premarin-Nexium-Om.3-Repatha-KLOR-CON-Maxide

Nomad

Wonderful news, really.
How great that your son will be able to be there during this time.
That you are moving forward.
Enjoying Netflex etc. while you rest.
I know it is very difficult in many ways, but it's good that you have and see the positives and are doing your best to push forward.
Wishing you all good things. Sending LOTS and LOTS of encouragement and wishes for pain relief / much success.
Blessings! :)
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.

MAT51

Hope the surgery goes brilliantly and you get back at least some mobility soon. Great that your son will be visiting from Paris just then too.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

Dolly Dimples

       news Elaine, You do deserve some good news
                            Wishing you much success. roll on Oct, 11th
                          Hugs Dolly x

SjoGirl

Blessings to you as you prepare Carolina. May all go as well as possible!!
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

nannysbaby

Wishing you the very best outcome from your surgery.

Hugs, Nancy
Primary Sjogren's, Fibromyalgia, RLS; Methotrexate, Hydroxychloroquine, Vitamin Supp., Thera Tears

Carebear

Dearest Elaine,  sounds like your team has your back!  Wishing you a quick, uneventful recovery.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

MarieB

Dear Elaine, Sending thoughts, prayers, and positive vibes, everything I've got, to an amazing lady.   :)
Diagnosed w/Sjogrens May2014
SSA >8  SSB >8 (0.0-0.9AI)H
Antichromatin Antibodies >8 (0.0-0.9AI)H
Anti-DNA(SS)IgG,Ab/Qn 37(0-19EU)H
Began Plaquenil May 2014