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Posted By : Butterflake - 11/6/2016 9:08 PM
Hi Everyone. I'm providing you with a recap because my psychological demons refuse to let me vent without justification. It took 2 years of being sick before I had the Systemic Lupus diagnosis bestowed upon me. I went thru the usual med routine along with flares. I ate for comfort and gained 100 pounds. Decided to have gastric by-pass surgery (seemed like the thing to do at the time), but when it became time to eat my stomach closed for business- literally. I barfed a few days and it being the weekend, went to the ER and was admitted. Long to short, I caught pneumonia, but my attending doc didn't catch it in time. Rushed to ICU, induced into a coma and on a ventilator for 3 weeks. Hubby was called twice to come say his goodbyes.

Prior to lupus I was a runner and swimmer= good lungs. Survived, but when coma meds were removed my coma remained. I awoke (I was told) several days later. I was sent to long term acute care and have no memory from mid Jan that year until March 31. I asked to go home and my solid rock of a Hubby set up my feeding pump (stomach still closed except for a pinhole) every morning before work and I infused the rest of my IV meds. Quickly the pinhole closed and I had 13 endoscopies to allow saliva to drain before a gastric surgeon agreed to do a reverse by-pass almost 1 year exactly since my ER visit. I was feed TPN (liquid nutrition thru my veins) for 1 year. Did not eat for 1 year. Moral: don't get a gastric by-pass.

Regardless, I continued feel like death and was in ICU a couple more times. One of my docs was born with an autoimmune disorder and said she could get me in to see her rheumy who found my body did not produce enough IgG (1 of things needed to fight infection) so he sent me to an infectious disease doc who started me on IV infusions of Gammaguard (IVIG) monthly. My rheumy started me on IV Benlysta. I tried driving myself to these events, but I wrecked my car so now Hubby drives me. (He just said, "Say hello for me"). I spent 6 months in bed adjusting to these wonder drugs.

One Sunday I get huge doses of IVIG over 4 hours, the following Sunday it's Benlysta, about 2 hours. I had a port inserted because my veins quickly said enough of this crap. LOTS of other things have happened, but I must leave room for my vent. I have not been hospitalized since starting IVIG, but I do continue to get infections. Four weeks ago a sinus infection took hold and I was given antibiotic injection and oral. Cool started to recover, but Hubby brought home a cold that for me became another, nastier, painful, thick, gross sinus infection,chest cold, and more antibiotics Had to reschedule Benlysta (it kills white blood cells) and get my IVIG last Sunday. I HAVE BEEN IN BED FOUR WEEKS except for medical appointments that my Rock and Historian made sure I attended. Today was Benlysta. While I was getting ready, I broke down and cried with all my heart. Nuff said.
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : Lynnwood - 11/7/2016 7:55 AM
Oh, Butterflake, so sorry you've gotten a horrid sinus infection. It's these seemingly "little" things that sometimes take over and become huge things and push us to the very edge. A month in bed really sucks, and I hope you are not beating yourself up for a big crying binge - you deserve it! Nothing wrong with giving up the fight once in a while and letting yourself feel the grief. It's a horrible thing when an illness like this takes over and becomes the focus of life.

I hope you are feeling a little better today, I usually feel some emotional relief after I vent. Maybe next time your Hubby gets some time off he will bundle you into a warm cozy car & drive around a little to find some pretty fall leaves to look at. I find if I have something, no matter how small, to look forward to it helps me feel better.

Big (germ-free) hugs!

Posted By : BreRosie - 11/7/2016 8:12 AM
I hope you start feeling/doing better soon! I skim through this site at least once a day and everytime someone post something you are always there with words of encouragement and advice. Thank you for that, so much. Feel better soon.You will be in my thoughts and prayers.
Thyroid disease 2015, Lupus and Sjogrens July 2016 and Fibro October 2016
I'm Just gonna keep on smilling

Posted By : Butterflake - 11/7/2016 10:22 AM
Thank you Ladies. Now I'm crying because I'm so touched.
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : Melissa D. - 11/7/2016 5:28 PM
Butterflake, I'm so sorry you are sick with a sinus infection. I know what most people think is a simple sinus infection, can become such a terrible thing for our lupie bodies to overcome, I hate that you've been laid up for over a month trying to get rid of it. I totally understand how totally draining it can be both physically and mentally.

Take care of yourself, get the rest you need to feel better and please feel better. Oh and by the way, your husband sounds like a great man, so supportive!

Hugs,
Melissa

Posted By : Butterflake - 11/7/2016 7:10 PM
Thanks Melissa. Last week Hubby bought a gray hoodie for me that states: I Am a Proud Lupus Warrior...What Is Your Superpower. It's the greatest shirt ever, and yes, he is the love of my life.

I sincerely appreciate each of your replies. You're right Lynnwood, I do feel a bit better emotionally. Perhaps next time I vent my psychological demons will let me vent without the recap. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : Lynnwood - 11/7/2016 8:35 PM
Yes, feel free to just vent! No justification necessary once you join the Lupie Club!

VENT, VENT, VENT

Good for the soul!

lol

Posted By : couchtater - 11/7/2016 9:17 PM
Big germ free hug from me too.

It stinks that what helps us feel better can cause us to feel worse.

I hope you can get to feeling better soon.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : FW - 11/7/2016 10:06 PM
Just wanted to add some virtual (((hugs))). For both you and your husband:)
Take care, Fran

Posted By : Lisabeans - 11/10/2016 8:54 AM
Sorry you are feeling this way and going through so much. Please know we are here for you to vent away any time. Hoping today is better!
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

Posted By : Butterflake - 11/12/2016 3:03 PM
Thanks again for the support Everyone. Hubby thanks you also (Fran). I'm in bed again. Same sinus crap. I'm not too surprised between the Benlysta and the Prolia injection I had yesterday for my osteoporosis. One of the weird side effects listed is sinusitis. Go figure.

I had sinus surgery 2010. I'm calling the ENT Monday. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : DQueen - 12/7/2016 10:08 PM
I'm so sorry you're sick & have had to endure all of this, Butterflake! I have no words of wisdom, but I'm sending hugs, love, & prayers your way!
Lots of love,
DQueen

Diagnosis: Lupus, Rheumatoid Arthritis, Reynauds, Gout, High Blood Pressure, Anemia, Congestive Heart Failure, Chronic Kidney Disease

Posted By : Butterflake - 12/8/2016 8:45 AM
Hi DQueen! I didn't know you still lurked around the forum. Thank you so much for the support. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

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