Author Topic: New and Scared  (Read 6518 times)

machenza

  • Guest
New and Scared
« on: March 31, 2014, 02:37:19 AM »
Dear Friends,

I am a 45 y.0. female, and am just starting on the difficult path of coping with what we have. Since it happened so fast for me, I am still in the disbelieve phase, and cry every day. I constantly go back to the first night that I woke up with super dry mouth and throat, and the weeks before that and wonder could the outcome have been different if I never had done what I did at that time. Could I have somehow prevented, or delayed the onset of it all?

 Today, only a short time since it all started, I have everything dry and seem to be getting drier by the day: My sinuses, my throat, my eyes, my scull, my skin, and my lips. Also I wake up (if I even sleep) with pain in my left kidney now. It is getting harder to eat, swallow or get hungry. Since, I am somewhat in the medical field myself, I know that I have to eat a minimum of X amount of calories, but I keep losing weight. Everything tastes so sour and different. Is that how it is for all of us?
I was so stupid in my choices?Worried about work, education, money, even looks. Now I know what is important but I do not have it to enjoy life as I could have.

I already have an IC, and allergies, and GERD, and I am not officially diagnosed yet because I am in Japan, and work for the military. However, we do not have any specialists here, and I will have to somehow see a specialist. At the moment I have to deal with OTCs, and hope that the ?drying? will slow down until I am given something. I saw on many of your posts that almost everyone is starting with a quinine derivative. Unfortunately, I had a bad adverse reaction at age 4, so I have no idea if I can even try. Is there anything else I can try as an attempt to slow the progress?

 Any help , and advice will be dear to me. I am so confused, sad, angry, helpless, and discouraged?please, teach me how to live as a Sjogren.

Machenza


litliwlowa

  • Hero Member
  • *****
  • Posts: 1780
Re: New and Scared
« Reply #1 on: March 31, 2014, 02:57:46 AM »
Hi machenza and welcome to the boards.

The first things in your post that really stood out to me:
Quote
I constantly go back to the first night that I woke up with super dry mouth and throat, and the weeks before that and wonder could the outcome have been different if I never had done what I did at that time. Could I have somehow prevented, or delayed the onset of it all?
Not even most of our doctors understand these AI's fully, let alone how to prevent them from happening in the first place. So I would have to say, no to "could I have somehow prevented, or delayed the onset of it all?"

Quote
I was so stupid in my choices?Worried about work, education, money, even looks. Now I know what is important but I do not have it to enjoy life as I could have.
Take a deep breath, okay? Rule #1: no such thing as a stupid choice. Rule #2 Worry is a stressor, worry will also keep you "stuck" and add to your symptoms.

I'm going to PM you with some questions, okay?

Amanda

SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

machenza

  • Guest
Re: New and Scared
« Reply #2 on: March 31, 2014, 03:09:30 AM »
Thank you Amanda,

I just saw the post of another member that everything happened in her life, and in less than 5 months she lost taste and saliva 100%. I am so scared because I am progressing so fast as well. I hope to hear from members that started of with fast drying, and how to handle the change.

 I thought that I was a strong person. Now I know that I am not

Nellie

litliwlowa

  • Hero Member
  • *****
  • Posts: 1780
Re: New and Scared
« Reply #3 on: March 31, 2014, 03:52:48 AM »
Nellie

Just sent you a PM.

First and foremost, as scary as your symptoms are, AI's are stress-sensitive. What that means in effect is that the more you allow yourself to be scared and second guess your life choices, the more it is going to add to your flares - as those are controllable stressors.

Now let's put an element of control into the situation. If you haven't started this yet, I would suggest start journalizing your symptoms. A consistent theme with autoimmune illnesses is flares and triggers. It's hard not to get scared, I "get" that. So turn that scaredness around into determination to sort out what is triggering the symptoms for you. Some is controllable, some is not controllable.

Dry mouth: three S's of Sjogrens: sip, swish, swallow. I always have water with me 24/7. I also find zylimelts really helpful. I am also on cevimeline (generic for Evoxac) for dry mouth.

Dry eyes: many OTC products on the market. Don't know what you have access to, and you may have to try different ones to find what works best for you. I do best on Refresh Optive dual action during the day and Refresh Sensitive PM ointment at night. I am also on Restasis.

Dry bum: I have other issues there including pelvic floor dysfunction. I am on stool softeners (3 at night) and 2 capfuls miralax at night also to keep things moving alone so to speak.

Dry nose: room humidifier (cool mist) and now doing sinus rinses.

Stomach/GERD: on Dexilant and Zantac for that. Plus have had to eliminate spicy foods (so my diet is quite bland actually), eliminated gluten (as much as one can anyway), eliminated corn (as much as can anyway) and soy (nearly impossible to eliminate that one) - all three are problematic for me. Diet is an individualized issue. Also went organic as much as is possible.

I am also on RX hydroxychloroquine (Plaquenil) for roving pain issues.

I'm certain you'll hear from other sjoggies as well with what has been helpful to them.

Keep in mind that there is no road map that fits everyone. Some of us have horrid flares that seem to never end then like flipping a switch we get a "break" and symptoms abate. Some of us are less symptomatic than others. There is no "one size fits all".

Just know that you're not in a boat alone in the ocean, we're all in the same boat - just rowing with our own oars.

Hugs and Prayers

Amanda
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

Joe S.

  • Hero Member
  • *****
  • Posts: 7665
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: New and Scared
« Reply #4 on: March 31, 2014, 04:31:41 AM »
Wearing a mumps scarf over nite helps with dryness issues.
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

Carolina

  • Hero Member
  • *****
  • Posts: 5754
  • —if it ain't one thing, it's another." Roseanne R.
Re: New and Scared
« Reply #5 on: March 31, 2014, 05:29:39 AM »
Welcome dear Nellie,

1.  Relax.  Learn relaxation and meditation techniques.  These will help you with everything.

2.  We are all different in many ways.  There is no way to know what lies ahead for you, with or without Sjogren's.  What each of us posts is our own view of what we are experiencing and we have things to share.  Take what you need and leave the rest.  Most people with Sjogren's don't seek out online support. 

3. Use this new experience to enrich your life, Nellie.  You didn't choose this path, it isn't your 'fault'. It is what it is.  Acceptance is key.   Patience, Persistence, Acceptance.

Hugs,  Elaine
« Last Edit: March 31, 2014, 06:54:34 AM by Carolina »
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

kimberly64

  • Sr. Member
  • ****
  • Posts: 303
Re: New and Scared
« Reply #6 on: March 31, 2014, 05:40:52 AM »
Mechenza,
When I read your first paragraph I cried.  You are essentially me.  Then I read the second and we are the same. Dont let this define your life, it is hard and I am still sturggling each day since this all started 7 months ago for me but I am trying to learn to cope and function normally as I can.  People here will help you get through this and have advice and insight on ways to cope.  Please take care and if you need to talk just PM ME.
Kimberly
Sjogrens, Evoxac, Restasis , Omega3

quietdynamics

  • Hero Member
  • *****
  • Posts: 2399
Re: New and Scared
« Reply #7 on: March 31, 2014, 06:51:59 AM »
Hello Nellie and Welcome to the forum.

(Nellie was my Grandmothers' name ~.~)

Having something, anything 'go off' with our bodies, especially when not a quick fix is unsettling, and can be very stressful.

The "catch 22" with SJS and many other disease states is that stress exacerbates symptoms, emotionally drains us and so affects us physically. Contributes to a cycle of wellness.

I wrote out my concerns, basically named them, claimed them and then address them..

Getting a handle on chronic illness stress has helped symptoms.

A diary of symptoms, when, how long, helps identify triggers, so you can make lifestyle changes within your control. And help specifically address symptoms with Drs.
Include in diary things that alleviate symptoms..out in fresh air symptoms are better? During the day?
These are telling things, that will help show patterns.

Waking with extreme dry throat.. can mean (for me) that during the night I have been doing open mouth breathing because my nasal passage is 'funky". Do a saline levage helps and added humidity in the night, lowering dry heat in bedroom.

So while we tend to look 'within' due to fear.. we must also look objectively at our immediate environment. (and sometimes we learn.. say due to harsh winter.. other folks are having dryness symptoms. Although not as extreme.)

Hormonal changes can produce similar 'sicca symptoms' so they should be checked.
SJS "mimics" other disorders, thus, difficulty in initially recognizing.
When I have a new, different symptom, I have said to Drs. "Let's not put that into the SJS box of convenience." 

I do not know if military is referred out for medical specialists.
There are studies I have read on Sjogrens from Japan. Japanese pop. has a unique profile and markers.

Please remember that the majority of people who post often here are in minority.
Think of SJS as a spectrum..
Some people having Antibodies and no symptoms ---------------> all the way to people with more complex symptoms and other Dx's to boot ( about 20%)-----------> and then there are even smaller % groups.

I have had some taste changes, dryness changes, etc. they go up and down. Nothing carved in stone.

Keeping hydrated with about 2 liters/+ of water is suggested. I use thicker eye drops at night and then eye gel to seal in the drops. I have a simple crock pot going (safe) near the head of my bed. Easy to clean.. no mold, etc. ( I can add a scent, spices too..lol)

Having had a quinine reaction at age 4.. this would be something to discuss with a Dr.
Dose then, Rx and age? vs age and Pharma now?  So do not leap to rule it out.
http://www.hopkinslupus.org/lupus-treatment/lupus-medications/antimalarial-drugs/
« Last Edit: March 31, 2014, 08:04:20 AM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

littleone

  • Guest
Re: New and Scared
« Reply #8 on: March 31, 2014, 07:48:51 AM »
Sending support from all of us to you.  Just to echo everyone else's sentiment, stress definitely exacerbates things.

I'm a big believer in music therapy. For me, taking deep breaths to peaceful music can really calm my body down. Right now I am into Native American flutes and waterfalls. If you just plug into youtube you can find almost anything that suits you.

Conversely, if I sit and worry I almost always feel worse. Or if I have an argument with my Mom (bc she isn't dealing w her med problems) or meet a jerk for a dr (there seem to be a good few out there) then, again,  feel my symptoms flare. 

I also try to listen to comedy on you tube. Laughter is good for the immune system.

It's scary in the beginning but know we have your back.

 ;)

litliwlowa

  • Hero Member
  • *****
  • Posts: 1780
Re: New and Scared
« Reply #9 on: March 31, 2014, 08:54:49 AM »
Quote
I'm a big believer in music therapy. For me, taking deep breaths to peaceful music can really calm my body down. Right now I am into Native American flutes and waterfalls. If you just plug into youtube you can find almost anything that suits you.
So am I a big believer in music therapy. The Native American flutes and waterfalls I find particularly soothing.

SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

Tivia

  • Guest
Re: New and Scared
« Reply #10 on: March 31, 2014, 09:31:36 AM »
Mach, believe me when I say there is nothing you could have done to change this really. Like you mine came on extremely fast, I dried up seemingly overnight. I think doctors dont believe it can happen that fast, sure we may be harboring the illness for years, but its quiet. Then some people slowly notice changing, and others get hit fast and hard. I think its that sudden change thats the hard part, over time I can adjust to about anything. But when it spins you for a loop in a matter of days, its very hard to adjust. I think over time we catch up to the disease and adjust, but it takes time.


 Another thing that literally shakes me to the core, is the fact that without the meds I cant function, so I am dependent on them forever. Makes you scared about what if you cant get them anymore, or cant afford them, or they stop working...my god what would you do then.

Richards1953

  • Newbie
  • *
  • Posts: 38
Re: New and Scared
« Reply #11 on: March 31, 2014, 09:40:47 AM »
I'm brand new too - just found this board a couple of days ago and have already found it so helpful.  I'm afraid I'm with you - I have only worried and been in denial over this for the last two weeks.  we were snowbirding down south for the winter and the dryness just got worse and worse - had to come home to Canada early to see dr. as medical insurance wouldn't cover anything in the U.S.  We live in a small town and I will have to go into the City for any medical  help.  I don't know how to relax or meditate - I normally hike 4-5 times a week with our dog!  I have a huge garden and quilt.  I am so stressed and don't know where to turn and I just keep getting dryer and dryer. I think we need to slow down listen to these people on this forum.  They seem to KNOW.  I'm sorry this hasn't helped you - I think I just want you to know that there are lots of us newbies out there and I empathize and am going through the same thoughts and feelings as you. 

Tivia

  • Guest
Re: New and Scared
« Reply #12 on: March 31, 2014, 10:24:03 AM »
I'm brand new too - just found this board a couple of days ago and have already found it so helpful.  I'm afraid I'm with you - I have only worried and been in denial over this for the last two weeks.  we were snowbirding down south for the winter and the dryness just got worse and worse - had to come home to Canada early to see dr. as medical insurance wouldn't cover anything in the U.S.  We live in a small town and I will have to go into the City for any medical  help.  I don't know how to relax or meditate - I normally hike 4-5 times a week with our dog!  I have a huge garden and quilt.  I am so stressed and don't know where to turn and I just keep getting dryer and dryer. I think we need to slow down listen to these people on this forum.  They seem to KNOW.  I'm sorry this hasn't helped you - I think I just want you to know that there are lots of us newbies out there and I empathize and am going through the same thoughts and feelings as you.


Richard has your doctor prescribed exovac/restasis yet? I would get started on that as soon as possible, and have an eye doctor do a Schirmers test,  http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/schirmers-test/
The sooner they start you on meds the more function they may be able to save.  http://eyeworld.org/article.php?sid=4924

Thea

  • Full Member
  • ***
  • Posts: 241
Re: New and Scared
« Reply #13 on: March 31, 2014, 10:53:40 AM »
Hugs to you. I'm new to all of this, too, and totally *cheesed* that my life has gone upside down. Yoga and meditation are helping me with the mental side of things.

I second the suggestion to start a health diary. Stepping out of yourself to "observe" has helped me put it in perspective, and is usual information when you talk to all the "ologists"!

I bet you are a heck of a lot more resilient than you imagine at the moment. There's nothing wrong with an anger/grief stage. But there is a life beyond the diagnosis, and you will get there.
Inflammatory osteoarthritis, dx Nov 2013, Secondary SS (sero-neg) dx Feb 2013, Type 2 Diabetes (diet controlled), Post-Viral Syndrome (lungs); Hydroxychloroquine, Restassis, Omega 3 oils, Optive Advanced, Biotene, fluoride gel, MI Paste

Thea

  • Full Member
  • ***
  • Posts: 241
Re: New and Scared
« Reply #14 on: March 31, 2014, 11:12:28 AM »
Thanks so much for that link to the eyeworld article. I didn't know starting restasis sooner rather than later made a difference. This board is so darned helpful ... I'll get into the eye guy asap--he kind of left it up to me.
Inflammatory osteoarthritis, dx Nov 2013, Secondary SS (sero-neg) dx Feb 2013, Type 2 Diabetes (diet controlled), Post-Viral Syndrome (lungs); Hydroxychloroquine, Restassis, Omega 3 oils, Optive Advanced, Biotene, fluoride gel, MI Paste